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Kirstie Haysman went from being bed-bound, wheelchair-dependent, unable to care for herself, and wondering whether she would ever recover to walking across a pageant stage and becoming Ms Great Britain 2025/26.

But the crown represents much more than a pageant victory.

In this deeply personal episode of the Tick Boot Camp Podcast, Kirstie shares the decades-long health journey that preceded it: unexplained symptoms beginning in childhood, multiple diagnoses, years of immunosuppressive treatment, debilitating joint and neurological symptoms, frightening intrusive thoughts, psychiatric hospitalization, and encounters with more than 40 doctors before Lyme disease finally entered the conversation.

Kirstie takes listeners through the moment a stranger in a hospital waiting room asked a life-changing question — “Do you think you’ve got Lyme disease?” — and how that question ultimately led her to Mexico, Dr. Omar Morales, testing for Lyme and other tick-borne infections, and the validation she had spent years searching for.

Her story does not end with diagnosis or antimicrobial treatment. Kirstie describes the many approaches she explored, the enormous financial and emotional cost of chronic illness, and why nervous-system regulation, self-hypnosis, visualization, purpose, and changing the story she told herself eventually became important pieces of her personal recovery.

Today, Kirstie is using the visibility that comes with being Ms Great Britain to advocate for people with Lyme disease and other complex chronic illnesses — including her own daughter.

Years of Symptoms and Misdiagnosis

Looking back, Kirstie remembers being an unwell child with chronic exhaustion, recurring infections, severe “growing pains,” insomnia, low iron, and other unexplained symptoms.

Her health deteriorated significantly as an adult.

After testing positive for ANA following the birth of her daughter, Kirstie says doctors initially suspected lupus. Over the years, she received or was considered for numerous diagnoses, including rheumatoid arthritis, connective tissue disease, Raynaud’s, fibromyalgia, osteopenia, osteoporosis, and other conditions.

She was treated with steroids for approximately 12 years and later received additional immunosuppressive medications. Instead of recovering, Kirstie says she became progressively sicker.

Eventually, the joints in her hands became so damaged that she could no longer perform her work as a chiropodist. She lost her business, her independence, and ultimately her ability to care for herself.

When Lyme Disease Affected Her Brain

Some of the most difficult parts of Kirstie’s illness were neurological and psychiatric.

She describes severe insomnia, panic, OCD symptoms, brain fog, intrusive thoughts, overwhelming anxiety, and periods when she felt as though her own mind was no longer under her control.

At one of her lowest points, she entered a psychiatric hospital because she and her family believed she was experiencing a severe mental health crisis.

Kirstie emphasizes an important distinction: she wanted to live, but was terrified by intrusive thoughts telling her to harm herself.

Her experience is an important reminder that patients experiencing psychiatric or neurological symptoms deserve to be heard, taken seriously, and thoroughly evaluated rather than dismissed.

The Stranger Who Changed Everything

After collapsing during another hospital visit, Kirstie says she felt dismissed by a physician who characterized her symptoms as attention-seeking.

Then another woman in the waiting room approached her with a question Kirstie had never been asked before:

Could this be Lyme disease?

Kirstie had barely heard of Lyme.

She went home and began researching. As she read patient stories and symptom lists, she recognized experiences she had been struggling to explain for years.

When she subsequently requested Lyme testing, Kirstie says she encountered resistance because she did not remember a tick bite or an erythema migrans rash.

That experience ultimately pushed her outside the healthcare system she had relied upon throughout her life.

Traveling to Mexico for Answers

The woman Kirstie met in the hospital was preparing to travel to Mexico for Lyme disease care and encouraged Kirstie to speak with Dr. Omar Morales.

That conversation changed the direction of Kirstie’s journey.

Kirstie describes Dr. Morales as one of the first physicians who listened to her entire history and made her feel that her experiences were real and worth investigating.

She traveled to Mexico, where she says specialty testing identified Lyme disease along with infections including Bartonella, Babesia, and Anaplasma.

Receiving those results brought two very different emotions.

There was relief: after years of searching, Kirstie finally felt she had an explanation.

But there was also fear. She had spent nights reading stories from people who remained chronically ill and suddenly wondered whether she would ever recover — and how she could possibly afford the care she believed she needed.

Tick Boot Camp previously interviewed Dr. Morales about his approach to complex Lyme disease in Lyme Mexico: An Interview with Dr. Omar Morales.

Stem Cells, Plasmapheresis, Ozone and Antibiotics

Kirstie ultimately pursued treatment at another facility in Mexico, where she reports receiving interventions including stem cell procedures, plasmapheresis, and ozone therapy.

She describes experiencing meaningful improvement, including increased energy and changes in the mobility of her severely affected hands.

After returning to the United Kingdom, however, her health declined again.

Kirstie later found a UK physician who prescribed an extended combination antibiotic protocol. She credits that period of treatment with helping resolve some of her most frightening intrusive thoughts and neurological symptoms, although gastrointestinal complications eventually led her to discontinue antibiotics.

Over the course of her illness, Kirstie estimates that she spent approximately £70,000 pursuing recovery.

She experimented with dramatically different diets and explored numerous conventional, integrative, and alternative approaches.

Her experience illustrates a reality familiar to many people with complex chronic illness: the search for answers can become financially, physically, and emotionally consuming.

From Wheelchair and Bed-Bound to Rebuilding Her Life

Despite everything she had tried, Kirstie eventually reached another devastating low.

She describes periods when she could barely move, severe pain throughout her body, swollen joints, weakness and loss of sensation in her legs, bladder problems, and dependence on carers for basic daily activities.

She could no longer work.

She was missing important moments in her daughter's childhood.

And she felt that the person she had once been had disappeared.

That was when Kirstie began examining another part of recovery: her nervous system and the way she thought about her body.

Primal Trust, Nervous-System Regulation and Self-Hypnosis

Kirstie discovered the work of Dr. Cathleen King and Primal Trust, which introduced her to concepts involving nervous-system regulation, limbic system retraining, and moving the body away from a persistent state of perceived danger.

This became an important shift in Kirstie’s personal recovery strategy.

Rather than continually reinforcing the message that her body was broken and needed another intervention, she began practicing self-hypnosis and visualization.

From bed, Kirstie imagined herself walking.

She imagined herself healthy.

And she imagined herself standing on the Miss Great Britain stage while an audience applauded.

She even played recordings of crowds cheering while visualizing that future.

Kirstie is careful to describe this as part of a much larger journey that also included extensive medical treatment. Looking back, she believes she encountered nervous-system work at the point when she was finally ready to embrace it.

Her experiences also inspired her to train as a hypnotherapist and help others explore the relationship between thoughts, emotions, nervous-system regulation, and personal well-being.

Kirstie has now launched Queen of Consciousness, her hypnotherapy website, where listeners can learn more about her work and approach.

Learn more about nervous-system regulation and chronic illness in Tick Boot Camp’s interview with Dr. Cathleen King: Primal Trust.

“Bed Bound to Beauty Queen”

Years earlier, Kirstie had competed in Miss Great Britain after becoming Miss Hertfordshire.

When her illness later became severe and her story received widespread media attention, Miss Great Britain reached out with a message of encouragement: if she recovered enough, she should consider returning.

For someone lying in bed wondering what her future would look like, that invitation became a goal.

Kirstie created a social media identity around “Bed Bound to Beauty Queen” and gave herself 365 days to get back onto the pageant stage.

Progress came gradually.

First came standing.

Then a Zimmer frame.

Then walking outside.

Then a walking stick.

Finally, Kirstie returned to the stage.

In 2024, only months after leaving her wheelchair, she returned to Miss Great Britain and placed second runner-up in the Ms Great Britain category.

One year later, she returned again.

This time, Kirstie Haysman became Ms Great Britain 2025/26.

For Kirstie, the crown represented the future she had visualized during some of the darkest days of her illness.

Turning the Crown Into Lyme Disease Advocacy

Kirstie promised that if she recovered, she would use her voice to help other people facing Lyme disease.

She has made that promise a central part of her reign as Ms Great Britain.

Her advocacy has included speaking at the ILADS European Scientific Conference, traveling to the United States with fellow UK Lyme advocate Hannah Green, visiting Lyme, Connecticut and the Plum Island area, participating in Lyme community events, and attending the Lyme Warrior 10th Anniversary Gala, where Tick Boot Camp first met Kirstie in person.

She and Hannah also spent Lyme Disease Awareness Month wearing green every day as a conversation starter about Lyme disease.

Kirstie has additionally launched a UK Parliament petition calling for a review of Lyme disease testing, part of her effort to encourage earlier recognition and reduce the kind of diagnostic journey she experienced.

Lymelight: Making Disability Visible

Kirstie has also collaborated with mobility-aid company NeoWalk on Lymelight, a clear acrylic walking stick featuring vivid lime-green stripes.

The design grew out of Kirstie’s experience with Lyme disease and her belief that mobility aids do not have to be hidden.

For Kirstie, the walking stick that once represented disability can instead become a visible conversation starter about Lyme disease, resilience, and identity.

Learn more about the Lymelight walking stick from NeoWalk.

Lyme Disease Across Generations

One of the most emotional themes in Kirstie’s story is her concern about Lyme disease across generations of her family.

She discusses the unexplained illnesses experienced by her grandmother and mother, questions whether she may have been exposed before birth, and shares that her daughter has also been diagnosed with Lyme disease.

Kirstie believes congenital transmission may help explain portions of her family's medical history and says advocating for her daughter is one of the reasons she remains so committed to Lyme disease awareness.

The conversation explores these possibilities as part of Kirstie’s personal and family history rather than assuming that every proposed transmission route discussed during the interview has been established in her individual case.

Finding Purpose After Chronic Illness

Perhaps the most powerful part of Kirstie’s story is not the crown itself.

It is what the crown represents.

Chronic illness took away her career, independence, mobility, confidence, and the identity she had built for herself.

Recovery required Kirstie to build a new one.

She now describes herself not simply as someone who has been sick, but as someone who can use what she experienced to help others feel seen.

She has retrained in hypnotherapy and is developing her work around trauma, limiting beliefs, nervous-system regulation, and pain management. Through her newly launched Queen of Consciousness website, Kirstie is sharing this next chapter of her journey and her passion for helping others.

She has also written Bed Bound to Beauty Queen, a children's story inspired by disability, hope, and pursuing dreams despite enormous obstacles. The book follows a young girl facing mobility challenges who dreams of becoming a beauty queen, reflecting Kirstie's own experience of rebuilding her life and pursuing a goal that once seemed impossible.

Listeners can find Kirstie's children's book here:

• Bed Bound to Beauty Queen — Amazon USA
• Bed Bound to Beauty Queen — Amazon UK

Her message to the Lyme community is simple:

A diagnosis does not have to determine your destiny.

In This Episode, You’ll Learn

• How Kirstie went from Miss Hertfordshire and pageantry to severe chronic illness and eventually Ms Great Britain
• Why she believes symptoms of illness may have been present since childhood
• How lupus, rheumatoid arthritis, fibromyalgia and other diagnoses became part of her medical journey
• What happened after years of steroids and immunosuppressive treatment
• How severe insomnia, OCD symptoms, anxiety and intrusive thoughts affected her life
• Why she was admitted to a psychiatric hospital
• How a stranger in a hospital waiting room first introduced her to Lyme disease
• Why not remembering a tick bite or bullseye rash became an obstacle to testing
• How Kirstie eventually connected with Dr. Omar Morales in Mexico
• Her reported diagnoses involving Lyme disease, Bartonella, Babesia and Anaplasma
• Her experiences with antibiotics, stem cells, plasmapheresis, ozone and other interventions
• The financial burden of pursuing treatment for complex chronic illness
• Why Kirstie eventually focused more heavily on nervous-system regulation
• How Primal Trust, self-hypnosis and visualization became part of her personal recovery strategy
• How she progressed from bed-bound to a Zimmer frame, walking stick and pageant stage
• Why becoming Ms Great Britain was about far more than winning a crown
• How she is using her title to raise Lyme disease awareness internationally
• Her advocacy around Lyme disease testing and congenital Lyme
• How she turned her experience into a new career in hypnotherapy through Queen of Consciousness
• Why she wrote the children's book Bed Bound to Beauty Queen
• Why purpose, identity, community and hope became essential parts of her recovery

Connect With Kirstie Haysman

Learn more about Kirstie's hypnotherapy work, personal journey, and approach to well-being through Queen of Consciousness.

Discover her children's book, Bed Bound to Beauty Queen, available through Amazon USA and Amazon UK.

More From Tick Boot Camp

Explore more stories of recovery, clinicians, researchers, advocates, and people working to improve understanding of Lyme and tick-borne disease on the Tick Boot Camp Podcast.

For listeners who are struggling to understand Lyme disease testing and why different tests can produce different results, visit the Tick Boot Camp guide to Lyme disease testing.

What if healing from chronic Lyme disease requires more than finding the right medication? What if learning to stop fighting yourself, reconnect with your purpose, and build meaningful relationships could become an important part of your recovery journey?

In this powerful LIVE from ILADS interview, Tick Boot Camp co-host Rich Johannesen reunites with fan-favorite Dr. Chris Winfrey, MD, a board-certified psychiatrist, psychoanalyst, and ILADS board member, to explore the spiritual, emotional, and psychological dimensions of healing from Lyme disease and complex chronic illness.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation introduces Dr. Winfrey's 12 Steps for Chronic Illness, a framework inspired by addiction recovery programs, his professional experience in psychiatry, his personal health journey, and the role faith has played throughout his life.

Dr. Winfrey challenges the belief that healing must always involve fighting harder. Instead, he encourages patients to explore acceptance, surrender, self-compassion, nervous system regulation, meaningful relationships, and community support.

The conversation examines several important questions:

• Why can chronic illness leave patients feeling trapped in fight-or-flight mode?
• What is the difference between surrendering to reality and giving up on recovery?
• How can faith, spirituality, and personal purpose support people facing serious illness?
• Why are self-compassion and forgiveness important when chronic illness changes your life?
• How can patients rebuild relationships affected by years of suffering?
• What can the 12-step recovery model teach people living with Lyme disease?

Dr. Winfrey's central message is that patients deserve more than a life defined by illness. They deserve connection, purpose, compassion, and the opportunity to build a meaningful future while continuing to pursue appropriate medical care.

Meet Dr. Chris Winfrey, MD

Dr. Chris Winfrey, MD, is a board-certified psychiatrist and founder of New Image Wellness, a neuropsychiatric practice in New Jersey.

His work integrates traditional psychiatry, psychoanalysis, functional medicine, environmental medicine, and approaches to complex neurological and psychiatric conditions.

His clinical interests include:

• Lyme disease and tick-borne infections
• PANS/PANDAS
• Neuropsychiatric symptoms
• Chronic fatigue and cognitive dysfunction
• Mold-related health concerns
• Trauma and post-traumatic stress disorder
• Brain health and nervous system regulation
• The relationship between physical illness and mental health

Dr. Winfrey also serves on the board of ILADS, where he hopes to make complex medical information more understandable and expand awareness of Lyme disease in underserved communities.

He explains that Lyme disease is sometimes incorrectly perceived as affecting only certain racial or socioeconomic groups.

One of his goals is to help make education, resources, and conversations about tick-borne illness more accessible.

Learn more about his background and approach through Tick Boot Camp's featured profile of Dr. Chris Winfrey.

A Tick Boot Camp Fan Favorite Returns

Rich opens the interview by welcoming Dr. Winfrey back to the podcast.

The two originally connected through Tick Boot Camp's LIVE from ILADS interview series.

Despite the relatively short format of their first conference interview, Dr. Winfrey became one of the podcast's most popular guests.

He subsequently joined Tick Boot Camp for a longer conversation about Lyme disease, brain health, psychiatric symptoms, and nervous system recovery.

Rich credits Dr. Winfrey's ability to explain complicated medical concepts in language patients can understand.

This new interview expands on an important subject they had not previously explored in depth: the spiritual dimension of healing.

For more from Dr. Winfrey, listen to:

• Episode 521: Lyme Disease, Brain Health, and Nervous System Recovery
• Episode 563: At the Frontlines of Chronic Illness – ILADS Expert Panel Webinar

How Dr. Winfrey's Grandmother Shaped His Understanding of Faith

Dr. Winfrey begins by honoring his grandmother.

He shares that he experienced PANDAS during childhood and struggled with behavioral, organizational, and emotional challenges.

While others doubted his future, his grandmother continued to believe in him.

She prayed for him and maintained faith that he could overcome the difficulties he was experiencing.

Dr. Winfrey recalls an especially meaningful childhood memory of his grandmother placing olive oil on his head and praying before he went to school.

Her belief in him became an important part of his understanding of faith, hope, and perseverance.

He credits those early experiences with influencing how he now approaches healing.

What Addiction Recovery Taught Dr. Winfrey About Chronic Illness

Dr. Winfrey explains that his interest in 12-step programs began long before he developed his chronic illness framework.

During his early years, he completed community service at an Alcoholics Anonymous facility.

He listened to people describe their experiences with addiction, recovery, accountability, and personal transformation.

His understanding deepened during medical school, residency, and subsequent professional training.

He also worked as a medical director at a drug and alcohol treatment facility.

Over time, he began recognizing parallels between addiction recovery and the psychological challenges faced by people living with chronic illness.

Both experiences can involve:

• Loss of control
• Fear and uncertainty
• Changes in identity
• Shame and isolation
• Strained relationships
• Difficulty accepting reality
• The need for community support
• Rebuilding meaning and purpose

Drawing on these observations, Dr. Winfrey developed his 12 Steps for Chronic Illness.

He describes the framework as a way to help patients address the emotional, relational, and spiritual consequences of prolonged illness.

It is a supportive framework rather than a validated medical treatment for Lyme disease.

Fight-or-Flight vs. Rest-and-Digest: Understanding the Nervous System

Before introducing the 12 steps, Dr. Winfrey discusses the autonomic nervous system.

He explains the distinction between two important branches:

The sympathetic nervous system helps the body respond to perceived threats through fight-or-flight responses.

The parasympathetic nervous system supports functions associated with rest, digestion, and recovery.

Dr. Winfrey observes that many people with chronic illness spend significant time feeling threatened, overwhelmed, or constantly on guard.

They may find themselves fighting symptoms, doctors, medications, family members, treatment plans, or the circumstances of their illness.

He compares this experience to struggling in quicksand.

The harder someone fights against every aspect of their circumstances, the more exhausted and overwhelmed they may become.

His message is not that patients should stop advocating for themselves.

Rather, he encourages them to recognize when constant conflict may be adding to their emotional and physical burden.

Stress management and nervous system regulation can support well-being, but patients do not have to achieve a particular emotional state for medical treatment to work. Being stressed, frightened, or overwhelmed does not mean someone is preventing their own recovery.

Dr. Chris Winfrey's 12 Steps for Chronic Illness

The centerpiece of this interview is Dr. Winfrey's 12-step framework.

Each step encourages patients to explore a different part of the chronic illness experience.

Step 1: Acceptance

Recognize that chronic illness has changed your life and that fighting reality can deepen suffering.

Dr. Winfrey begins with acceptance.

He explains that patients may spend years resisting the reality of their circumstances.

They may be angry about their symptoms, frustrated by treatment failures, or grieving the life they had before becoming ill.

These emotions are understandable.

Acceptance does not mean approving of the illness, abandoning treatment, or giving up hope.

It means acknowledging the present situation so that decisions can be made from a clearer understanding of reality.

Dr. Winfrey distinguishes between survival mode and growth.

He believes recognizing what has happened is an important foundation for moving forward.

Step 2: Finding Meaning and Purpose

Believe that life can still hold meaning, peace, and joy, even in the presence of illness.

Dr. Winfrey explains that chronic illness can disrupt a person's sense of identity.

Someone who previously defined themselves through work, parenting, caregiving, or physical activity may struggle when those roles change.

He recalls a patient questioning the purpose of getting better because her children had grown up and she no longer had the responsibilities that once gave her life meaning.

Dr. Winfrey believes patients benefit from identifying a reason to keep moving forward.

Rich connects this idea to Tick Boot Camp's belief that people can discover new aspects of their identity and purpose through the recovery journey.

The discussion emphasizes that meaning does not have to wait until symptoms disappear.

Purpose can evolve alongside illness.

Step 3: Surrender

Stop battling what cannot be controlled and focus on the choices, attitudes, and actions that remain available.

Dr. Winfrey distinguishes surrender from defeat.

He describes surrender as acknowledging that a challenge may be too great to navigate alone.

For patients who have already lost careers, relationships, financial stability, or physical abilities, the idea of giving up anything else can feel unbearable.

Dr. Winfrey encourages patients to consider releasing patterns that may be increasing their suffering.

These might include unrealistic expectations, relentless self-criticism, or the belief that they must handle everything independently.

Surrender, in his framework, creates room to ask for help.

It allows patients to recognize the need for medical professionals, caregivers, supportive relationships, and community.

Surrendering to the reality of illness is not the same as surrendering the possibility of a better future.

Step 4: Self-Reflection

Take an honest look at how illness has affected your body, mind, emotions, and relationships.

Dr. Winfrey encourages patients to examine the full impact of chronic illness.

The consequences often extend beyond physical symptoms.

Illness can change how people communicate, respond to stress, maintain relationships, and perceive themselves.

He believes self-reflection can help patients identify both their suffering and the ways they have adapted to it.

This process should be approached with compassion rather than blame.

A person is not responsible for becoming ill simply because their illness has affected others.

Step 5: Sharing the Struggle

Speak openly with trusted people rather than carrying the entire burden of illness alone.

Dr. Winfrey discusses the isolation that can accompany chronic illness.

Patients may withdraw because they feel misunderstood, ashamed, exhausted, or concerned about burdening others.

Some may struggle to explain symptoms that are invisible or difficult to describe.

Dr. Winfrey believes sharing these experiences with trustworthy people can help reduce isolation.

That support may come from family members, friends, counselors, support groups, or other people living with similar conditions.

The goal is not to disclose everything to everyone.

It is to find relationships where honesty and vulnerability can be met with understanding.

Step 6: Willingness to Change

Become willing to release destructive patterns, unhelpful comparisons, and unrealistic expectations.

Chronic illness often creates pressure to compare progress with others.

Patients may wonder why someone else recovered more quickly or responded to a treatment that did not help them.

Dr. Winfrey encourages patients to recognize when these comparisons are causing additional distress.

He also discusses the importance of reconsidering expectations about productivity, independence, and recovery timelines.

Willingness means remaining open to change without demanding perfection.

Step 7: Self-Compassion and Grace

Acknowledge personal limitations and practice gentleness instead of judgment.

This is one of the most emotionally powerful parts of the interview.

Dr. Winfrey discusses the harsh internal criticism he encounters among patients.

Some people blame themselves for becoming ill.

Others feel guilty about the financial, emotional, or practical consequences their illness has had on their families.

Dr. Winfrey compares this internal dialogue to a courtroom where the patient becomes their own judge, jury, and prosecutor.

He argues that many people impose punishments on themselves that they would never consider appropriate for someone else.

His response is to encourage self-mercy, self-compassion, and grace.

Rich connects this to negative self-talk and the importance of treating ourselves with the same kindness we would extend to a loved one.

Patients deserve compassion even when they cannot work, complete daily responsibilities, or make the progress they hoped for.

Step 8: Healing Relationships

Identify relationships affected by illness and consider opportunities for reconnection.

Dr. Winfrey believes chronic illness can create distance between patients and the people closest to them.

Years of pain, fatigue, emotional distress, and uncertainty can strain marriages, friendships, and family relationships.

He encourages patients to reflect on these changes without assuming that every damaged relationship is their responsibility.

Where appropriate, reconnecting with supportive people may help restore a sense of belonging.

Dr. Winfrey emphasizes that relationships are important sources of emotional support and resilience.

Step 9: Making Amends and Setting Boundaries

When appropriate, work toward repairing strained relationships while protecting your health.

Dr. Winfrey explains that relationship repair must be balanced with healthy boundaries.

Reconnection is not always possible or advisable.

Some relationships may be unsafe, dismissive, or emotionally harmful.

His framework encourages patients to consider opportunities for reconciliation while recognizing the importance of protecting their well-being.

The goal is not to force forgiveness or contact.

It is to approach relationships intentionally and thoughtfully.

Step 10: Daily Check-Ins

Continue reflecting on your emotional and physical state while acknowledging your needs without guilt or shame.

Dr. Winfrey encourages ongoing self-awareness.

Patients can benefit from periodically asking themselves how they are feeling, what they need, and whether their current routines are sustainable.

A daily check-in might include reflecting on:

• Physical symptoms and energy levels
• Emotional well-being
• Stress and sleep
• Personal boundaries
• Support needs
• Activities that bring comfort or meaning

This practice can help patients communicate their needs and recognize changes over time.

It should remain flexible rather than becoming another obligation that creates pressure.

Step 11: Mind, Body, and Spirit Connection

Explore practices that nourish the spirit and support resilience.

Dr. Winfrey discusses several activities that may help patients reconnect with themselves and their sense of meaning.

Examples include:

• Meditation
• Prayer
• Spending time in nature
• Journaling
• Creative activities
• Personal reflection

For Dr. Winfrey, spirituality has been a major source of strength throughout his life.

He encourages patients to explore practices that align with their own beliefs and values.

Spirituality is personal, and meaningful support does not require adherence to any particular religious tradition.

These practices may complement medical and mental health care, but they do not replace treatment for infection or other underlying conditions.

Step 12: Service and Community

Share your experiences and offer encouragement to others living with chronic illness.

The final step brings the framework back to community.

Dr. Winfrey believes people can find meaning by supporting others who are facing similar challenges.

That support might involve listening to another patient, sharing helpful information, participating in advocacy, or offering encouragement.

Rich connects this principle to Tick Boot Camp's mission of helping people liberate themselves and others from Lyme disease.

Both emphasize the value of community, shared experience, and modeling hope.

Service does not have to be physically demanding.

For someone experiencing severe symptoms, a kind message or brief conversation may be meaningful.

Even while living with illness, people can have value, purpose, and a positive impact on others.

How Lyme Disease May Affect Identity and the Brain's Default Mode Network

During the discussion of meaning and purpose, Dr. Winfrey introduces the brain's default mode network.

This network involves several interconnected brain regions associated with self-referential thinking, autobiographical memory, and aspects of personal identity.

Dr. Winfrey discusses his view that Lyme disease and related neuroinflammatory processes may disrupt brain network connectivity.

He believes these disruptions could contribute to difficulties with identity, meaning, and emotional processing in some patients.

This is an area requiring further research.

Although neurological Lyme disease can affect the nervous system, the interview's proposed relationship between Borrelia infection and specific default mode network disruptions should not be interpreted as an established mechanism in every patient.

For a more extensive conversation about neurological symptoms, listen to Dr. Winfrey's earlier interview on Lyme disease, brain health, and nervous system recovery.

Why Community Matters in Chronic Illness Recovery

One of Dr. Winfrey's strongest messages concerns the importance of relationships.

He believes meaningful healing involves connection with other people.

Rich expands on this idea by discussing the relationship between serving others and allowing others to provide support.

For many patients, accepting help can be difficult.

Someone who was previously independent may struggle with relying on family members, caregivers, or friends.

Dr. Winfrey encourages patients to recognize that needing support is part of being human.

Social connection can benefit mental health, reduce isolation, and provide practical assistance during illness.

However, patients without strong social networks are not incapable of recovering. Community is a valuable source of support, not a prerequisite that determines whether medical healing is possible.

Faith, Spirituality, and the Chronic Illness Journey

Dr. Winfrey's framework includes a strong spiritual component.

He credits his grandmother's faith with helping shape his understanding of hope and perseverance.

He also draws from the spiritual principles commonly associated with 12-step recovery programs.

For him, surrender involves recognizing personal limitations and accepting help beyond what one individual can accomplish alone.

Rich shares his own perspective on faith, purpose, and the importance of serving others.

Together, they explore how spiritual practices can help patients navigate uncertainty and find meaning.

The conversation offers a perspective on spirituality as a source of comfort, connection, and resilience.

It does not suggest that patients must have religious faith to recover or that illness results from inadequate belief.

Does Nervous System Regulation Help Lyme Disease Recovery?

Dr. Winfrey discusses the relationship between chronic stress and autonomic nervous system activity.

He believes that learning to recognize and respond to prolonged stress may help patients improve their overall well-being.

The interview explores the importance of moving away from constant hypervigilance when possible.

Supportive practices may include appropriate psychological care, relaxation techniques, meditation, and other individualized approaches.

These strategies can help some people manage stress and improve quality of life.

However, nervous system regulation is not a substitute for appropriate medical evaluation or treatment.

Patients should not interpret ongoing symptoms as evidence that they have failed to relax, surrender, or think positively enough.

For related conversations, explore:

• Primal Trust with Cathleen King: Nervous System Regulation and Neuroplasticity
• Vital-Side with Lindsay Mitchell: Brain Retraining and Nervous System Support
• Re-Origin with Ben Ahrens: Understanding Neuroplasticity

Why Dr. Winfrey Wants to Make Lyme Education More Accessible

Dr. Winfrey also discusses his responsibilities as an ILADS board member.

He identifies two major priorities.

First, he wants to help translate complex medical information into language patients and the public can understand.

His background in psychiatry and psychoanalysis has taught him the importance of making difficult subjects accessible.

Second, he wants to expand awareness of Lyme disease among minority and underserved communities.

Dr. Winfrey explains that some people incorrectly perceive Lyme disease as an illness that primarily affects white patients.

He wants to challenge that perception and help more people understand that tick-borne diseases can affect individuals across different communities.

His advocacy reflects a commitment to improving access to information, education, and appropriate care.

What's Next for Dr. Winfrey and Tick Boot Camp?

At the conclusion of the interview, Rich proposes continuing the conversation in greater depth.

Because LIVE from ILADS interviews are relatively short, they can introduce important ideas without allowing time to explore every detail.

Rich suggests that Dr. Winfrey return for an extended discussion, potentially including an in-studio video series dedicated to the 12 Steps for Chronic Illness.

The goal would be to expand the framework, explore practical applications, and provide the community with additional opportunities to learn.

Dr. Winfrey welcomes the idea.

The conversation leaves open the possibility of future educational content exploring the relationship between chronic illness, spirituality, psychological well-being, and community.

Key Takeaways

• Dr. Chris Winfrey introduces his 12 Steps for Chronic Illness. The framework draws inspiration from addiction recovery, psychiatry, faith, and his personal experiences.
• Healing involves more than physical symptoms. Chronic illness can affect identity, relationships, emotions, and a person's sense of purpose.
• Acceptance is not giving up. Recognizing reality can help patients make decisions and identify their needs.
• Surrender can create room for support. Patients do not have to navigate every challenge independently.
• Finding meaning matters. Purpose and meaningful activities can support emotional resilience.
• Self-compassion is essential. Patients deserve kindness rather than relentless guilt or self-criticism.
• Chronic illness can strain relationships. Reconnection may be valuable when it is safe and appropriate.
• Healthy boundaries remain important. Forgiveness and reconciliation should never require tolerating harmful behavior.
• Nervous system regulation may support well-being. Stress management can complement, but not replace, medical treatment.
• Faith and spirituality can provide comfort. Patients may draw strength from religious or nonreligious sources of meaning.
• Community reduces isolation. Supportive relationships can help patients feel understood and connected.
• Helping others can create purpose. Sharing experiences and offering encouragement may benefit both patients and their communities.
• Dr. Winfrey advocates for greater access to Lyme education. His ILADS work includes improving communication and outreach to underserved populations.

Learn More About Dr. Chris Winfrey

Dr. Winfrey is a board-certified psychiatrist and founder of New Image Wellness, with clinical interests in complex neuropsychiatric conditions, Lyme disease, PANS/PANDAS, trauma, and brain health.

To explore his work and previous Tick Boot Camp appearances, visit:

• Dr. Chris Winfrey – Tick Boot Camp Featured Doctor Profile
• Episode 521 – Lyme Disease, Brain Health, and Nervous System Recovery
• Episode 563 – At the Frontlines of Chronic Illness: ILADS Expert Panel
• New Image Wellness – Dr. Chris Winfrey's Practice

About This LIVE from ILADS Interview

Recorded at the 2025 ILADS Conference in San Antonio, Texas, this interview features Dr. Chris Winfrey discussing his 12-step framework for people living with chronic illness.

Rich and Dr. Winfrey explore the psychological, emotional, relational, and spiritual challenges that can accompany Lyme disease.

From acceptance and surrender to self-compassion, faith, and community, the conversation provides a framework for thinking about life and personal growth during illness.

The episode also highlights Dr. Winfrey's work to improve Lyme disease education and his commitment to making complex medical concepts accessible to patients.

Explore more conversations from the conference through Tick Boot Camp's LIVE from ILADS podcast series.

You are more than your diagnosis. Your illness may have changed your life, but it does not erase your value, your purpose, or your ability to make a difference.

What if you developed painful, non-healing skin lesions, experienced sensations of something crawling beneath your skin, and then were told by a doctor that your symptoms were a psychiatric problem?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich welcomes Cindy Casey-Holman, RN, Executive Director of the Charles E. Holman Morgellons Disease Foundation, to discuss Morgellons disease, its proposed connection to Lyme disease, emerging research, and the devastating impact of medical dismissal.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores one of the most controversial and misunderstood conditions discussed within the Lyme disease community.

Cindy is a former critical care nurse who developed Morgellons symptoms while working in California. Despite her medical background, she describes being diagnosed with a psychiatric condition after seeking help for painful skin lesions and unusual skin sensations.

Her husband, Charles E. Holman, became an important advocate during her illness. His support ultimately inspired the creation of a nonprofit foundation dedicated to Morgellons research, education, and patient advocacy.

Throughout the interview, Rich and Cindy explore important questions:

• What is Morgellons disease, and what symptoms do patients report?
• Is there a connection between Morgellons and Lyme disease?
• What have researchers discovered about Borrelia bacteria and skin fibers?
• Why do some patients receive psychiatric diagnoses when seeking dermatological care?
• What role can research and patient advocacy play in improving medical understanding?

For patients who have experienced unexplained symptoms, social isolation, or dismissive medical encounters, this conversation offers validation, education, and a reminder that their suffering deserves compassionate attention and careful investigation.

Meet Cindy Casey-Holman, RN

Cindy Casey-Holman, RN, is the Executive Director of the Charles E. Holman Morgellons Disease Foundation, a Texas-based nonprofit organization supporting scientific research, education, and advocacy related to Morgellons disease.

Before becoming a patient advocate, Cindy worked as a registered nurse in critical care, including high-acuity intensive care settings.

Her experience with Morgellons changed her life.

After developing persistent skin symptoms, Cindy struggled to obtain answers from medical professionals.

She describes the experience as particularly painful because she had spent her career caring for critically ill patients and working alongside physicians.

Her husband, Charles, became one of her strongest advocates.

When Cindy was too ill to advocate effectively for herself, he helped her navigate the medical system and seek answers.

The foundation was named in his honor.

Today, Cindy works with researchers, healthcare professionals, and patients to improve awareness and understanding of Morgellons disease.

Learn more about Cindy Casey-Holman and the foundation's leadership.

What Is Morgellons Disease?

Morgellons disease is a term used to describe a collection of skin-related symptoms, often involving reports of unusual fibers or filaments associated with skin lesions.

Patients may experience persistent itching, pain, abnormal skin sensations, and wounds that are slow to heal.

Cindy describes Morgellons as a dermopathy, meaning a condition affecting the skin.

During the interview, she explains that some patients develop lesions on their arms, legs, face, scalp, back, or other parts of the body.

She also describes the presence of colored fibers associated with affected skin.

The cause of Morgellons remains scientifically contested.

Some researchers have proposed an infectious association, including a possible connection with Borrelia bacteria. Other investigations have not demonstrated an infectious cause and have examined dermatological, neurological, and psychiatric explanations.

Regardless of the underlying cause, the pain, itching, wounds, and distress reported by patients deserve appropriate medical evaluation.

Common Morgellons Symptoms

Cindy describes several symptoms that patients report.

Painful, Slow-Healing Skin Lesions

One of the most prominent complaints involves skin wounds that may persist for extended periods.

Cindy explains that some lesions can become disfiguring, particularly when they appear on visible areas such as the face.

Severe Itching and Burning

Patients may experience intense itching, irritation, and pain.

These symptoms can interfere with sleep, concentration, and daily activities.

Crawling Sensations Beneath the Skin

Cindy describes sensations that patients compare to something crawling on or beneath their skin.

This type of abnormal sensation is sometimes called formication.

Formication can occur in several medical and neurological conditions and does not, by itself, establish the presence of parasites or infection.

Fibers or Filaments Associated With Skin Lesions

Cindy discusses patients reporting unusual colored fibers within or emerging from affected skin.

The origin and significance of these materials remain disputed in the medical literature.

Emotional and Social Isolation

Visible skin lesions can create significant embarrassment and anxiety.

Cindy explains that some patients avoid social situations because they are concerned about how others will react to their appearance.

The combination of physical symptoms, uncertainty, and stigma can profoundly affect quality of life.

Is Morgellons Disease Connected to Lyme Disease?

One of the interview's central questions concerns the relationship between Morgellons and Lyme disease.

Cindy believes Morgellons may represent a skin manifestation associated with Borrelia infection.

She explains that she was not initially aware of having Lyme disease when her Morgellons symptoms developed.

She also discusses research reporting Borrelia organisms or genetic material in some skin samples from people identified as having Morgellons.

Other microorganisms discussed include:

• Bartonella henselae
• Helicobacter pylori
• Treponema denticola

Cindy believes Borrelia may play a particularly important role.

However, the presence of microbial material in selected research samples does not establish that these organisms cause Morgellons or explain every patient's symptoms.

The proposed connection remains controversial, and larger, independently replicated studies are needed.

For more information about research exploring Morgellons, visit the foundation's research resources.

Could Morgellons Be a Manifestation of Lyme Disease?

Rich raises an important question about medical terminology.

If Morgellons symptoms are associated with Lyme disease in some patients, should Morgellons be classified as a separate condition or considered a manifestation of another illness?

Cindy explains that some advocates and researchers have discussed whether Morgellons might be more appropriately described as a syndrome.

Rich argues that separating Morgellons from Lyme disease could create additional confusion when patients seek medical care.

He worries that clinicians may overlook possible tick-borne infections if they view skin symptoms as unrelated.

Cindy agrees that understanding potential connections is important.

However, Morgellons has not been established as a diagnostic sign of Lyme disease, and not everyone reporting Morgellons symptoms has confirmed Lyme disease.

Determining the appropriate classification requires additional research.

What Are the Fibers Associated With Morgellons?

One of the most unusual features discussed in the interview is the presence of colored fibers or filaments.

Cindy describes how difficult it can be for patients to explain these observations to healthcare professionals.

She believes the fibers are an important part of the condition and should be investigated.

Some published studies have proposed that fibers associated with Morgellons involve biological materials produced within the skin.

Other investigations have identified textile fibers and other environmental materials.

The CDC's investigation of unexplained dermopathy did not identify a common infectious cause among the patients studied.

The disagreement illustrates why carefully designed research, appropriate sampling methods, and independent replication are important.

Morgellons, Medical Gaslighting, and Psychiatric Diagnoses

One of the most emotional portions of the interview concerns Cindy's experiences seeking medical care.

She recalls visiting a dermatologist while experiencing severe skin symptoms.

Despite her professional background as an intensive care nurse, she says she was diagnosed with delusional parasitosis.

Cindy describes feeling devastated.

She had spent years caring for patients, trusting medical professionals, and working within the healthcare system.

Suddenly, she found herself questioning whether her own concerns would be taken seriously.

She also recalls reviewing medical records that suggested her husband shared her alleged delusion.

For Cindy, these experiences were deeply damaging.

She believes they contributed to the isolation and frustration experienced by many Morgellons patients.

The interview highlights why clinicians should approach unexplained symptoms with compassion, conduct appropriate evaluations, and communicate diagnoses respectfully.

Psychiatric and neurological conditions are legitimate medical conditions that also deserve evidence-based treatment. A psychiatric diagnosis should never be used as an excuse to dismiss physical suffering or avoid evaluating other possible causes.

When Medical Professionals Become Patients

Rich explores why Cindy's experience may have been especially traumatic because she was a nurse.

As a critical care professional, Cindy was accustomed to working with physicians and caring for patients experiencing life-threatening conditions.

She understood the medical system from the inside.

Yet when she became ill, she struggled to obtain the kind of support she had expected.

Rich observes that losing confidence in the healthcare system can be painful for anyone.

For someone who has devoted a career to healthcare, that loss of trust may be particularly difficult.

Cindy agrees.

Her story illustrates how becoming a patient can dramatically change a healthcare professional's perspective.

How Cindy's Husband Inspired the Charles E. Holman Foundation

Cindy explains that her husband played a central role in helping her through the most difficult periods of illness.

When she struggled to advocate for herself, he stepped forward.

He helped her pursue answers and supported her efforts to understand the condition.

The foundation was eventually named in his honor.

The Charles E. Holman Morgellons Disease Foundation was established to advance scientific understanding and support people experiencing Morgellons symptoms.

Its work focuses on:

• Funding scientific research
• Educating healthcare professionals
• Raising public awareness
• Supporting patients and caregivers
• Encouraging additional research into possible causes
• Advocating for greater attention to Morgellons-related concerns

Cindy explains that scientific research became especially important because patients needed credible information to bring to medical appointments.

She believes published studies can help patients communicate their concerns and encourage further investigation.

Why Morgellons Research Matters

Cindy discusses how the foundation has supported research into Morgellons disease.

At the time of the interview, she estimated that approximately 20 or more relevant scientific papers had been published.

She describes the importance of peer-reviewed research in a field where patients frequently encounter skepticism.

For Cindy, research serves two purposes.

First, it may help clarify the biological mechanisms responsible for reported symptoms.

Second, it provides patients and clinicians with information that can support more informed conversations.

The foundation continues to encourage research and collaboration.

Explore the Charles E. Holman Foundation's research initiatives.

What Does Current Research Say About Morgellons?

Morgellons remains a subject of scientific disagreement.

Research supporting an infectious hypothesis has reported associations with Borrelia and other microorganisms in selected patients.

Other studies, including the CDC's investigation, have not established an infectious cause.

A 2024 review of Morgellons disease describes the conflicting literature and the challenges involved in understanding the condition.

These disagreements make further research important.

At present, there is no universally accepted infectious explanation, validated Morgellons-specific diagnostic test, or established antibiotic regimen for the condition.

Patients experiencing persistent skin lesions, abnormal sensations, or other unexplained symptoms should receive appropriate medical evaluation to identify treatable causes and manage their symptoms.

Cindy's Experience With Long-Term Antibiotic Treatment

Cindy also discusses her personal treatment history.

She explains that she has used oral antibiotics for many years and reports that her skin symptoms worsen when she discontinues them.

She describes combinations of medications sometimes used by clinicians treating patients with suspected tick-borne infections.

The conversation includes references to rifampin, trimethoprim-sulfamethoxazole, and other antibiotics.

Cindy also discusses using probiotics while taking antibiotics.

These statements describe her individual experience and the practices she has encountered.

They do not establish that long-term antibiotics are safe or effective for Morgellons disease.

Prolonged antibiotic treatment can carry significant risks, including medication interactions, liver injury, antibiotic-associated infections, and antimicrobial resistance.

Patients should not begin, combine, or discontinue antibiotics based on this interview.

Could Tick Saliva Help Explain Morgellons Symptoms?

Rich introduces a hypothesis about the relationship between tick bites and skin symptoms.

He discusses how ticks release saliva into the skin while feeding.

Tick saliva contains biologically active substances that help ticks feed and interact with the host's immune response.

Rich wonders whether Borrelia introduced during a tick bite could contribute to skin changes that later appear as Morgellons symptoms.

Cindy finds the question interesting but acknowledges that the proposed mechanism has not been studied sufficiently.

This is an exploratory discussion, not an established explanation.

Tick-borne infection risk depends on factors including tick species, pathogen, and attachment duration.

A proposed mechanism involving tick saliva does not establish that Morgellons is transmitted by ticks or caused by Borrelia.

Why Morgellons Patients Need Compassion and Community

Beyond the medical questions, Cindy emphasizes the emotional burden of living with a poorly understood condition.

Patients may experience severe symptoms while also struggling with disbelief from family members, friends, or healthcare professionals.

Some withdraw from social activities because of visible lesions.

Others become discouraged after repeated unsuccessful medical appointments.

Cindy believes patient advocacy organizations can help reduce that isolation.

The foundation works to connect patients with information, research, and community resources.

Her message reinforces an important Tick Boot Camp principle: People experiencing difficult-to-explain symptoms deserve respect, support, and the opportunity to pursue appropriate medical care.

How to Support Morgellons Research and Advocacy

Cindy encourages listeners to learn more about the Charles E. Holman Morgellons Disease Foundation.

The organization supports scientific research and patient education while advocating for greater awareness.

People interested in learning more can explore:

• Charles E. Holman Morgellons Disease Foundation
• Foundation leadership and mission
• Morgellons research initiatives

Patients and caregivers can also explore the foundation's educational resources and community initiatives.

Key Takeaways

• Morgellons involves distressing skin-related symptoms. Patients report painful lesions, itching, abnormal skin sensations, and fibers associated with affected skin.
• Cindy Casey-Holman is a registered nurse and patient advocate. Her personal experiences led her to become Executive Director of the Charles E. Holman Foundation.
• Her husband played a central role in her advocacy journey. The foundation was named in his honor.
• A possible connection between Morgellons and Borrelia has been investigated. Some researchers report associations, but causation has not been established.
• The cause of Morgellons remains contested. Published studies have reached different conclusions.
• Medical dismissal can be profoundly damaging. Cindy describes the emotional impact of receiving psychiatric diagnoses while seeking help for physical symptoms.
• Patients deserve compassionate medical evaluation. Unexplained symptoms should be investigated rather than automatically dismissed.
• Scientific research is essential. The foundation supports studies intended to clarify the condition.
• Long-term antibiotics are not an established Morgellons treatment. Cindy's experience should not be interpreted as a general treatment recommendation.
• Patient advocacy can create meaningful change. Research funding, education, and community support can help address gaps in understanding.
• No one should have to navigate unexplained illness alone. Compassion and community remain essential even when medical questions are unresolved.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Cindy Casey-Holman, RN, Executive Director of the Charles E. Holman Morgellons Disease Foundation.

Rich and Cindy discuss Morgellons symptoms, research investigating possible associations with Lyme disease, the controversy surrounding psychiatric diagnoses, and Cindy's personal journey from critical care nurse to patient advocate.

The interview also explores the foundation's efforts to support scientific research and educate patients and healthcare professionals.

Explore more conversations with physicians, researchers, and advocates through Tick Boot Camp's LIVE from ILADS podcast series.

For additional information about Lyme disease testing and diagnostic challenges, visit Tick Boot Camp's Lyme Disease Testing Resource.

What happens when you're living with chronic Lyme disease, your symptoms are real, but your doctor doesn't have all the answers? And what can patients and physicians do to build a better relationship that leads to better care?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich welcomes Dr. Marina Rasnow-Hill, MD, a board-certified family and integrative medicine physician, to explore the challenges of treating complex chronic illness, the limitations of traditional medical training, and the importance of building a healthy doctor-patient relationship.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why patients with Lyme disease, chronic fatigue, long COVID, mold-related health concerns, and other complex conditions may struggle to find answers.

Dr. Rasnow-Hill shares how her own health challenges led her beyond conventional medical training to explore integrative medicine, acupuncture, herbal therapies, and individualized approaches to chronic illness.

Rich and Dr. Rasnow-Hill also examine a topic that rarely receives enough attention: the responsibilities, expectations, vulnerabilities, and communication challenges on both sides of the doctor-patient relationship.

The conversation concludes with practical advice for patients who want to prepare for appointments, advocate for themselves, and find healthcare professionals who will work collaboratively with them.

Meet Dr. Marina Rasnow-Hill, MD

Dr. Marina Rasnow-Hill, MD, is a California-based physician with approximately 20 years of experience in medicine.

She began her career in family medicine before transitioning toward integrative medicine.

Her professional background includes board certifications in family medicine, integrative medicine, lifestyle medicine, obesity medicine, and medical acupuncture.

Dr. Rasnow-Hill also completed training through the Institute for Functional Medicine.

During the interview, she explains that she has focused exclusively on integrative medicine for approximately seven years.

She currently offers telehealth consultations in six western states: California, Washington, Nevada, Arizona, Colorado, and Idaho.

Her clinical interests include chronic fatigue, chronic pain, immune health, gastrointestinal health, and complex chronic illness.

Learn more through her Institute for Functional Medicine practitioner profile.

Why an Integrative Medicine Physician Attended ILADS

Dr. Rasnow-Hill explains that although she has been involved with ILADS for years, the 2025 conference was her first opportunity to attend in person.

She traveled from California to San Antonio to learn from clinicians and researchers working with Lyme and other tick-borne diseases.

She describes herself as a lifelong learner who continually looks for ways to improve patient care.

Dr. Rasnow-Hill explains that she already works with patients experiencing Lyme disease and other complex illnesses, but wants to continue expanding her knowledge.

Her motivation is practical: she attends medical conferences with specific patients in mind, looking for information that may help guide their future care.

Treating Complex Chronic Illness One Layer at a Time

One of Dr. Rasnow-Hill's biggest takeaways from ILADS involves recognizing that complex chronic illness may require evaluating multiple contributing conditions.

She discusses patients with overlapping concerns involving:

• Lyme disease and other tick-borne infections
• Chronic fatigue
• Long COVID
• Mold-related health concerns
• Immune dysfunction
• Other medical conditions that may complicate recovery

Rather than assuming that one diagnosis explains every symptom, she emphasizes the importance of reassessing the patient's condition as new information becomes available.

Dr. Rasnow-Hill also discusses conference presentations involving antifungal medications, antiviral therapies, and herbal approaches.

These interventions require appropriate medical indications, and their effectiveness varies by condition.

Her broader message is that clinicians should remain curious and willing to reconsider their approach when a patient's progress is limited.

From Conventional Medicine to Integrative Medicine

Rich asks Dr. Rasnow-Hill why she chose to pursue integrative medicine after completing conventional medical training.

She explains that her interest began early in her career.

Even while practicing traditional medicine, she incorporated acupuncture into patient care.

She recalls carrying acupuncture needles in her coat pocket so she could offer treatment when appropriate.

Her interest in complementary approaches was also influenced by her upbringing.

Dr. Rasnow-Hill grew up in a family that was open to what would now be called integrative or complementary medicine.

However, her own health challenges played an especially important role.

She describes experiencing medical problems that were not being adequately addressed through the approaches available to her.

Those experiences encouraged her to explore additional training.

She also began recognizing similar frustrations among her patients.

What Is Integrative Medicine?

Integrative medicine combines conventional medical care with selected complementary approaches when appropriate.

Depending on the condition and available evidence, these may include:

• Nutrition and lifestyle interventions
• Acupuncture
• Stress management
• Physical activity and rehabilitation
• Selected herbal or botanical therapies
• Other supportive interventions

Dr. Rasnow-Hill believes this broader perspective can be valuable when caring for patients with complex medical histories.

She explains that conventional medical education often emphasizes structured diagnostic and treatment frameworks.

While these frameworks are essential, she believes clinicians also need to understand the individual circumstances of the person receiving care.

Importantly, integrative medicine should not mean replacing proven treatments with unvalidated alternatives.

The goal is to consider evidence, patient preferences, safety, and the full clinical picture.

Why Medical School May Not Prepare Doctors for Every Chronic Illness

Rich and Dr. Rasnow-Hill discuss the challenges physicians face when treating conditions that do not fit neatly into established diagnostic categories.

Dr. Rasnow-Hill explains that medical school provides extensive scientific and clinical training.

However, she believes some important aspects of caring for people with complex chronic illness receive less attention.

These include:

• Navigating diagnostic uncertainty
• Managing complicated symptom patterns
• Building long-term therapeutic relationships
• Addressing emotional and social concerns
• Understanding patient experiences
• Recognizing the limits of existing medical knowledge

She explains that postgraduate education allowed her to explore subjects that were not central to her original medical training.

Her experience reinforces the importance of continuing medical education and professional curiosity.

What Happens When Doctors Don't Have All the Answers?

One of the most compelling parts of the interview focuses on the emotional challenges physicians face when they cannot explain or resolve a patient's symptoms.

Rich observes that many physicians have spent much of their lives succeeding academically and solving difficult problems.

Patients often expect them to provide clear diagnoses and effective solutions.

But complex chronic illness does not always offer straightforward answers.

Dr. Rasnow-Hill acknowledges that uncertainty can be difficult for clinicians.

She believes an important quality of a good physician is the ability to admit when they do not know something.

Rather than pretending to have every answer, she values doctors who remain curious, seek additional information, and collaborate with patients.

Medical humility is not a weakness. It can be one of the foundations of effective care.

Why Patients Need Confidence and Honesty From Their Doctors

Rich raises an interesting dilemma.

Patients want doctors who are confident and capable.

When someone has been sick for years, hearing a physician express confidence can provide tremendous reassurance.

However, excessive certainty can become problematic when the underlying diagnosis or treatment plan remains unclear.

Dr. Rasnow-Hill agrees that clinicians must balance confidence with honesty.

A physician can communicate competence while acknowledging uncertainty.

The goal is not to promise a cure or guarantee an outcome.

It is to establish trust through clear communication, realistic expectations, and a willingness to work together.

Understanding Medical Gaslighting and Patient Frustration

Rich and Dr. Rasnow-Hill discuss the frustration many patients experience when their symptoms are dismissed or misunderstood.

People living with chronic Lyme disease and other complex conditions may have spent years searching for explanations.

Some have experienced medical encounters that left them feeling unheard, invalidated, or discouraged.

Dr. Rasnow-Hill recognizes how vulnerable patients can feel when seeking help.

She also explains that healthcare professionals may experience uncertainty and frustration when they cannot determine what is causing a patient's symptoms.

Understanding both perspectives can support more productive communication.

However, empathy for clinicians does not mean patients must accept dismissive behavior or inadequate care.

Patients deserve to have their symptoms taken seriously, their concerns evaluated, and their questions answered respectfully.

Why the Doctor-Patient Relationship Is a Partnership

A central theme of the interview is that effective healthcare requires collaboration.

Rich compares the doctor-patient relationship to other important relationships in life.

Both parties have responsibilities.

Physicians must listen carefully, communicate clearly, and provide appropriate medical care.

Patients can contribute by sharing relevant symptoms, describing treatment responses, asking questions, and communicating their goals.

Dr. Rasnow-Hill agrees that a collaborative relationship can improve the care experience.

She emphasizes that patients should feel empowered to participate in decisions rather than viewing themselves as passive recipients of treatment.

Why Communication Matters in Chronic Lyme Disease Care

Patients with complex illnesses often have extensive medical histories.

They may have seen multiple specialists, undergone numerous tests, and tried different treatments.

Communicating this information can be difficult, especially when appointments are short.

Dr. Rasnow-Hill explains that clinicians also face challenges when reviewing complicated medical histories.

She encourages patients to recognize that building a complete understanding of their health may take time.

At the same time, clinicians should make reasonable efforts to understand patients' experiences and explain their recommendations.

Clear communication can help both parties identify priorities and make informed decisions.

Three Ways to Build a Better Relationship With Your Lyme Disease Doctor

Toward the end of the interview, Rich asks Dr. Rasnow-Hill what patients can do before an appointment to help create a healthier therapeutic relationship.

Her advice centers on three important principles.

1. Understand That Complex Chronic Illness Care Is a Process

Dr. Rasnow-Hill encourages patients to approach a new medical relationship with realistic expectations.

A physician meeting someone for the first time may need time to understand years of symptoms, testing, and previous treatment.

She believes patients can benefit from viewing healthcare as an ongoing collaborative process rather than expecting every question to be answered during a single appointment.

This does not mean accepting unnecessary delays or dismissive care.

It means recognizing that complex medical evaluation often requires multiple steps.

2. Organize Your Medical History and Participate in Your Care

Dr. Rasnow-Hill encourages patients to think of themselves as the central member of their healthcare team.

When several physicians or specialists are involved, communication between offices may be incomplete.

Keeping track of important medical information can help.

Useful preparation may include:

• Maintaining a current medication and supplement list
• Organizing relevant laboratory results
• Keeping a timeline of major symptoms
• Documenting previous diagnoses and treatments
• Identifying the most important questions for the appointment
• Sharing changes in symptoms or treatment tolerance

Dr. Rasnow-Hill recognizes that this can be a significant burden, especially for people experiencing fatigue, cognitive difficulties, or disability.

Patients may benefit from assistance from caregivers, patient advocates, or care coordinators when available.

3. Don't Give Up If a Doctor Isn't the Right Fit

Dr. Rasnow-Hill emphasizes that patients should not feel trapped in an ineffective therapeutic relationship.

Sometimes communication styles do not align.

Sometimes a physician lacks the expertise needed for a particular condition.

And sometimes a patient simply does not feel heard.

She encourages patients to continue seeking appropriate care rather than allowing one disappointing experience to discourage them.

A second opinion or referral to another qualified specialist may provide additional perspective.

The patient is the center of the healthcare team. Finding a clinician who respects that relationship matters.

Why Patients and Doctors Both Need Empathy

One of the interview's most meaningful messages is that compassion should extend in both directions.

Patients may be frightened, exhausted, financially strained, or overwhelmed by their symptoms.

Doctors may face demanding schedules, uncertainty, administrative pressures, and the emotional weight of caring for people they cannot always help as quickly as they would like.

Dr. Rasnow-Hill believes recognizing these realities can create space for more honest conversations.

She encourages patients to communicate openly while allowing relationships to develop over time.

She also emphasizes the importance of finding clinicians who demonstrate humility, curiosity, and respect.

Mutual empathy can strengthen a therapeutic relationship without minimizing the patient's needs or the physician's professional responsibilities.

The Importance of Continuing Medical Education

Dr. Rasnow-Hill's enthusiasm for attending ILADS reflects another central theme: medicine continues to evolve.

No physician can know everything.

Research advances, clinical evidence changes, and new questions emerge.

Dr. Rasnow-Hill believes physicians should remain open to learning throughout their careers.

She values opportunities to exchange ideas with colleagues and consider new research.

For patients, this reinforces the importance of working with healthcare professionals who are willing to reassess their conclusions when new evidence becomes available.

Explore more conversations with physicians through Tick Boot Camp's doctor interview collection.

How to Work With Dr. Marina Rasnow-Hill

Dr. Rasnow-Hill offers integrative medicine consultations through telehealth.

Her professional profile lists availability in:

• California
• Washington
• Nevada
• Arizona
• Colorado
• Idaho

Her areas of interest include chronic fatigue, chronic pain, immune health, gastrointestinal concerns, and complex chronic illness.

For current availability, services, and appointment information, visit Dr. Marina Rasnow-Hill's Institute for Functional Medicine profile.

Key Takeaways

• Dr. Marina Rasnow-Hill combines conventional and integrative medicine. Her background includes family medicine, medical acupuncture, and additional integrative training.
• Her own health challenges influenced her medical career. Personal experience encouraged her to explore additional approaches to complex illness.
• Lyme disease care can involve overlapping medical conditions. Careful assessment is essential when symptoms have multiple potential causes.
• Medical education cannot provide every answer. Physicians need continuing education, curiosity, and clinical humility.
• Patients deserve validation. Unexplained symptoms should not be dismissed simply because a diagnosis is difficult.
• Doctors can be confident without pretending to know everything. Honest communication supports trust.
• The doctor-patient relationship is a partnership. Collaboration and mutual respect can improve the healthcare experience.
• Preparing for appointments can help. Organized records, symptom histories, and questions support communication.
• Complex care often takes time. Building a therapeutic relationship may require more than one visit.
• Patients should remain active participants in their care. Understanding treatment options and communicating concerns are important.
• A poor medical encounter should not end the search for help. Seeking another qualified clinician or a second opinion may be appropriate.
• Empathy matters on both sides. Patients and physicians benefit from respectful, honest conversations.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Marina Rasnow-Hill, MD, a California-based physician specializing in integrative medicine.

Rich and Dr. Rasnow-Hill explore the challenges of treating Lyme disease and complex chronic illness, the limitations of medical training, the role of integrative approaches, and the importance of building collaborative doctor-patient relationships.

The discussion offers practical guidance for patients who want to improve communication with their physicians, organize their medical information, and advocate for appropriate care.

Explore more interviews from the conference through Tick Boot Camp's LIVE from ILADS podcast series.

Could changing how antibiotics are administered help address some of the biggest challenges in treating chronic and disseminated Lyme disease? What if the timing, combination, and delivery of antibiotics matter as much as the medications themselves?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reunites with Dr. Louis C. Teulières, MD, PhD, a French physician and Lyme disease researcher, to explore his approach to sequential antibiotic therapy, Borrelia persistence, biofilms, neurological Lyme disease, antibiotic combinations, and treatment-related inflammation.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation follows Dr. Teulières' presentation, Antibiotic Rotational Combination Sequential Therapies in Chronic and Disseminated Disease TBD.

Dr. Teulières challenges conventional approaches to prolonged antibiotic treatment and explains why he believes carefully structured treatment sequences may offer advantages for selected patients with complex tick-borne illnesses.

Rather than administering antibiotics continuously for extended periods, he describes a strategy involving shorter treatment windows, planned breaks, and carefully selected antibiotic combinations.

He also discusses the importance of matching antibiotics to the tissues affected by infection, considering the blood-brain barrier in neurological Lyme disease, and addressing potential complications involving the gut microbiome, liver, and kidneys.

Rich and Dr. Teulières explore three major questions:

• Can sequential antibiotic treatment help clinicians better evaluate treatment responses?
• Could planned treatment breaks reduce some of the burdens associated with prolonged antibiotic exposure?
• How might clinicians select antibiotic combinations based on bacterial behavior, tissue penetration, and patient symptoms?

The central message is that Lyme disease treatment requires thoughtful clinical decision-making, individualized care, and an understanding of both the potential benefits and risks of antimicrobial therapy.

The sequential antibiotic approach discussed in this interview represents Dr. Teulières' clinical perspective. Its effectiveness and safety compared with established Lyme disease treatment regimens have not been demonstrated in high-quality comparative clinical trials.

Meet Dr. Louis C. Teulières, MD, PhD

Dr. Louis C. Teulières, MD, PhD, is a French physician and researcher whose work includes infectious diseases, complex chronic illness, and approaches to treating Lyme and other tick-borne diseases.

At the 2025 ILADS Conference, Dr. Teulières presented Antibiotic Rotational Combination Sequential Therapies in Chronic and Disseminated Disease TBD.

His presentation explores the use of antibiotic combinations and sequential treatment strategies in patients with complex tick-borne illnesses.

In this interview, he explains his clinical reasoning and discusses why he believes antibiotic timing, medication selection, and treatment intervals deserve greater attention.

Dr. Teulières has been a returning guest on Tick Boot Camp, sharing his perspectives on Lyme disease treatment and the challenges of managing complex infections.

What Is Sequential Antibiotic Therapy for Lyme Disease?

One of the main topics of the interview is Dr. Teulières' proposed sequential antibiotic treatment strategy.

He distinguishes this approach from three other methods of administering antibiotics:

Continuous treatment: Antibiotics are administered without planned breaks for a prescribed period.

Pulsed treatment: Antibiotics are administered intermittently according to a predetermined schedule.

Rotational treatment: Different antibiotics are used in rotation.

Sequential treatment: Dr. Teulières describes administering selected antibiotic combinations for a defined period, followed by a treatment break, with subsequent treatment decisions informed by the patient's response.

During the interview, he discusses an example involving approximately 14 days of antibiotic therapy followed by a planned break of approximately 14 days.

He explains that these intervals may allow clinicians to assess symptoms, review treatment tolerance, and adjust medication combinations.

Dr. Teulières believes the strategy may also provide opportunities for supportive care between antibiotic courses.

However, this specific schedule has not been established as an effective or safer treatment protocol for persistent Lyme disease through controlled clinical trials.

Patients should never independently interrupt or modify prescribed antibiotic treatment.

Why Dr. Teulières Questions Long-Term Continuous Antibiotics

Dr. Teulières explains that he has concerns about prolonged, uninterrupted antibiotic exposure.

He identifies several potential challenges:

• Antibiotic-associated adverse effects
• Disruption of the intestinal microbiome
• Selection of antibiotic-resistant organisms
• Difficulty identifying which medications are producing benefits
• Possible bacterial survival mechanisms
• Additional physical stress during treatment

He believes these concerns warrant consideration of alternative dosing strategies.

His proposed sequential approach is intended to create opportunities for reassessment rather than maintaining the same treatment continuously.

The discussion highlights an important distinction between the established effectiveness of antibiotics for Lyme disease and ongoing debates about additional antimicrobial treatment for persistent symptoms after standard therapy.

Borrelia Persistence: Round Bodies, Biofilms, and Tissue Survival

Rich asks Dr. Teulières about the ability of Borrelia bacteria to survive under challenging conditions.

Dr. Teulières describes several mechanisms that he believes may contribute to bacterial persistence.

Round-Body Forms

He explains that Borrelia can change its morphology under certain environmental conditions.

These changes, sometimes described as round-body forms, have been observed in laboratory research.

Dr. Teulières believes such changes may influence bacterial susceptibility to antimicrobial treatment.

Biofilms

Dr. Teulières also discusses biofilms, which are structured communities of microorganisms surrounded by protective material.

Biofilms can influence how certain microorganisms respond to environmental conditions and antimicrobial exposure.

He raises the possibility that biofilm-related mechanisms could complicate treatment in some patients.

Tissue Localization

The interview explores whether bacteria occupying certain tissues may be less accessible to particular medications.

Dr. Teulières emphasizes that antibiotic selection should account for where an infection is located.

Although Borrelia morphology, biofilm formation, and persister states are active research topics, their role in persistent human Lyme disease symptoms remains incompletely understood.

Laboratory findings do not establish that these mechanisms explain every case of persistent symptoms or that sequential antibiotic treatment overcomes them in patients.

Antibiotic Resistance vs. Bacterial Persistence

Dr. Teulières discusses the possibility that prolonged antibiotic exposure may contribute to the selection of resistant organisms.

He also describes bacterial forms that may survive exposure through mechanisms distinct from conventional antibiotic resistance.

These concepts are related but not identical.

Antibiotic resistance involves mechanisms that allow bacteria to withstand antimicrobial activity.

Antibiotic tolerance or persistence can involve survival during treatment without conventional inherited resistance.

Dr. Teulières believes understanding these differences may help clinicians develop more targeted approaches.

The clinical significance of proposed Borrelia persister forms remains an area of investigation, and the interview does not establish that sequential therapy prevents antibiotic resistance.

Why Dr. Teulières Recommends Treatment Breaks

A central feature of Dr. Teulières' proposed strategy is incorporating planned intervals between antibiotic courses.

He identifies three potential advantages.

1. Allowing Time for Recovery

Dr. Teulières believes treatment breaks may allow patients to recover from some medication-related burdens.

He discusses the liver and kidneys, which play essential roles in processing and eliminating many medications and their metabolites.

He also describes the potential importance of reducing treatment-related discomfort.

2. Evaluating Treatment Response

Dr. Teulières believes a defined treatment period followed by observation may help clinicians determine whether a particular antibiotic combination is producing meaningful changes.

He suggests monitoring whether symptoms improve, remain unchanged, or return during a treatment break.

3. Adjusting Antibiotic Combinations

Sequential treatment may also provide opportunities to reassess the medications being used.

Dr. Teulières proposes adjusting combinations based on the patient's symptoms, suspected infections, and clinical response.

These are the potential advantages he describes, not benefits established through comparative clinical trials.

Scheduled antibiotic breaks have not been proven to provide a specific detoxification benefit or prevent organ injury.

What Happens When Antibiotics Kill Bacteria?

Rich asks Dr. Teulières why some patients experience increased symptoms during antimicrobial treatment.

Dr. Teulières describes how bacterial components can stimulate inflammatory responses as organisms are affected by treatment.

He discusses microbial debris and inflammatory molecules that may contribute to discomfort.

The conversation connects this process to concerns about treatment-related inflammation.

However, symptom worsening during Lyme disease treatment is not automatically evidence of bacterial die-off.

Medication reactions, allergic responses, unrelated illnesses, and other complications can produce similar symptoms.

A true Jarisch-Herxheimer reaction is a recognized acute inflammatory response associated with treatment of certain infections, including some spirochetal diseases.

Severe or persistent symptoms during treatment require medical evaluation rather than an assumption that the medication is working.

Bacteriostatic vs. Bactericidal Antibiotics

Dr. Teulières explains why he considers the mechanisms of different antibiotics when selecting treatment combinations.

Bacteriostatic Antibiotics

Bacteriostatic antibiotics primarily inhibit bacterial growth under particular conditions.

Some interfere with bacterial protein synthesis.

Dr. Teulières discusses azithromycin as an example.

Bactericidal Antibiotics

Bactericidal antibiotics kill susceptible bacteria under particular conditions.

Different medications accomplish this through different mechanisms, including disruption of bacterial cell wall synthesis.

Dr. Teulières discusses ceftriaxone as an example.

Why Combine Both Types?

Dr. Teulières proposes combining selected bacteriostatic and bactericidal medications.

He believes that targeting bacteria through different mechanisms may improve treatment effectiveness in certain circumstances.

He discusses combinations such as azithromycin and ceftriaxone to illustrate his approach.

However, combining these antibiotic categories does not automatically improve clinical outcomes.

Some combinations may introduce additional adverse effects or drug interactions, and certain combinations can interfere with one another.

Antibiotic selection must be based on the specific infection, patient characteristics, and available evidence.

Selecting Antibiotics Based on Tissue Penetration

Another important concept in the interview is the distribution of antibiotics throughout the body.

Dr. Teulières emphasizes that different medications reach different tissues at different concentrations.

He discusses selecting antibiotics according to the location of suspected infection.

Relevant considerations may include:

• Skin and connective tissue involvement
• Joint manifestations
• Neurological symptoms
• Central nervous system infection
• The presence of other diagnosed infections
• Medication absorption and distribution
• Patient-specific contraindications

Dr. Teulières believes these factors are especially important in patients with complex or disseminated disease.

The broader medical principle is that treatment selection should account for both the organism being treated and the anatomical site of infection.

Neurological Lyme Disease and the Blood-Brain Barrier

Rich and Dr. Teulières discuss how treatment decisions may differ when Lyme disease affects the nervous system.

Dr. Teulières emphasizes the importance of selecting antibiotics capable of reaching the relevant site of infection.

He identifies several antibiotic families and discusses their potential tissue penetration.

The blood-brain barrier helps regulate which substances enter the central nervous system.

Certain medications penetrate this barrier more effectively than others, depending on factors such as drug properties and inflammation.

However, neurological symptoms alone do not establish central nervous system infection.

Similarly, the ability of a medication to penetrate the blood-brain barrier does not automatically make it effective or appropriate for Lyme neuroborreliosis.

Treatment depends on the specific neurological manifestation and clinical evaluation.

For additional education, listen to Tick Boot Camp's interview with Dr. Medeya Tsnobiladze on the neurological and cardiovascular impacts of Lyme disease.

Oral vs. Intravenous vs. Intramuscular Antibiotics

Dr. Teulières discusses the advantages and limitations of different antibiotic administration routes.

Oral antibiotics are taken by mouth and absorbed through the gastrointestinal tract.

Intravenous antibiotics are delivered directly into a vein.

Intramuscular antibiotics are administered through injection into muscle tissue.

He explains that his proposed treatment strategy may involve different administration routes depending on the patient's symptoms and clinical circumstances.

Dr. Teulières expresses concern about the gastrointestinal effects of prolonged oral antibiotic use.

He also discusses considering injectable medications for certain neurological presentations.

However, intravenous or intramuscular antibiotics are not inherently more effective than oral medications.

For many manifestations of Lyme disease, appropriately selected oral antibiotics are effective.

Injectable therapies can introduce additional risks, including line infections, blood clots, and administration complications.

Protecting the Gut Microbiome During Lyme Disease Treatment

Dr. Teulières emphasizes the importance of considering intestinal microbiome health during antibiotic treatment.

The gut microbiome contains diverse microorganisms that contribute to digestion, metabolism, and other biological processes.

Antibiotics can disrupt these microbial communities.

Potential consequences may include gastrointestinal symptoms and antibiotic-associated infections.

Dr. Teulières believes his proposed treatment breaks may provide opportunities for the microbiome to recover.

However, evidence has not established that his sequential approach reliably prevents microbiome disruption.

The effects of antibiotics depend on the specific medication, duration, dose, and patient.

Treating Lyme Disease and Co-Infections

The conversation also addresses the possibility of multiple infections contributing to complex illness.

Dr. Teulières explains that clinicians may need to consider bacterial, parasitic, or viral conditions when evaluating patients.

He believes sequential treatment strategies could provide opportunities to address different diagnosed infections at different times.

However, the presence of Lyme disease does not automatically establish additional infections.

Each suspected infection requires appropriate evaluation.

Treatment choices should be based on clinical findings and reliable diagnostic information rather than assuming that every symptom represents an additional pathogen.

Can Antibiotics Have Antiviral Effects?

Dr. Teulières briefly discusses research into possible antiviral effects of certain antibiotic classes.

He specifically mentions macrolides.

Some antibiotics have demonstrated antiviral or immunomodulatory activity in laboratory settings.

However, these findings do not establish that antibiotics are effective clinical treatments for viral infections.

Antibiotics should not be used to treat viral illnesses without a specific evidence-supported indication.

This portion of the interview reflects an area of scientific interest rather than a validated treatment recommendation.

Intravenous Immunoglobulin and Complex Chronic Illness

Dr. Teulières also discusses the possibility of using intravenous immunoglobulin, or IVIG, alongside other treatments in selected patients.

IVIG is made from pooled antibodies collected from donated human plasma.

It is used for certain immune deficiencies, autoimmune conditions, and neurological disorders.

Dr. Teulières describes how intravenous treatment may allow clinicians to coordinate different therapies when medically appropriate.

However, IVIG is not a routine or established treatment for Lyme disease itself.

Its use requires a specific medical indication and careful consideration of risks.

Sequential Antibiotics and the Rehabilitation Process

Toward the end of the interview, Rich connects Dr. Teulières' approach to Tick Boot Camp's broader observations about chronic illness recovery.

Rich emphasizes that the goal of treatment should not be limited to reducing an infectious burden.

Patients may also need to recover from the physical and emotional consequences of prolonged illness.

He discusses how aggressive interventions can create additional challenges if they produce significant adverse effects or functional setbacks.

Dr. Teulières agrees that treatment should be used carefully and thoughtfully.

Their conversation reinforces the importance of balancing medical treatment with patient safety, tolerability, and quality of life.

How Does Dr. Teulières' Approach Compare With Lyme Disease Guidelines?

Sequential antibiotic therapy, combination regimens, and treatment strategies for persistent symptoms remain subjects of debate and research.

The specific sequential approach described by Dr. Teulières has not been established as superior to guideline-supported Lyme disease treatment through high-quality comparative clinical trials.

Professional organizations also differ in their recommendations for managing persistent symptoms following Lyme disease treatment.

ILADS treatment guidelines emphasize individualized clinical judgment and shared decision-making.

Other guidelines recommend against additional antibiotics for persistent nonspecific symptoms when there is no objective evidence of reinfection or treatment failure.

These differences underscore the need for continued research into persistent symptoms, treatment effectiveness, and long-term patient outcomes.

Learn More About Dr. Louis Teulières' ILADS Presentation

Dr. Teulières presented Antibiotic Rotational Combination Sequential Therapies in Chronic and Disseminated Disease TBD at the 2025 ILADS Conference.

His presentation explores the rationale for sequential antibiotic strategies and combination treatment approaches in complex tick-borne disease.

The interview offers a conversational overview of his clinical thinking, including how he approaches medication selection, treatment timing, and patient response.

For additional conference interviews, visit Tick Boot Camp's LIVE from ILADS podcast series.

Key Takeaways

• Dr. Louis Teulières proposes a sequential antibiotic strategy. His approach involves defined treatment periods followed by planned breaks.
• He questions prolonged, uninterrupted antibiotic exposure. His concerns include adverse effects, microbiome disruption, and antibiotic resistance.
• Borrelia persistence is a central research topic. He discusses round-body forms, biofilms, and tissue localization.
• Antibiotics have different mechanisms of action. Dr. Teulières describes combining bacteriostatic and bactericidal medications.
• Tissue penetration influences treatment selection. The anatomical site of infection matters when choosing an antibiotic.
• Neurological Lyme disease requires careful evaluation. Blood-brain barrier penetration is one consideration, but not the only factor.
• Oral and injectable antibiotics have different benefits and risks. The route of administration should be chosen based on clinical need.
• Gut microbiome health matters. Antibiotic exposure can affect intestinal microbial communities.
• Treatment breaks are not proven detoxification methods. Their proposed benefits require further research.
• Co-infections require individual assessment. Different pathogens may require different treatment approaches.
• Rehabilitation is an important consideration. Managing adverse effects and restoring function are relevant to overall recovery.
• More research is needed. The safety and effectiveness of Dr. Teulières' sequential regimen have not been established through high-quality comparative clinical trials.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this interview features Dr. Louis C. Teulières, MD, PhD, a French physician and researcher discussing his presentation on sequential antibiotic therapy.

Rich and Dr. Teulières explore the challenges of treating complex Lyme disease, including bacterial persistence, antibiotic combinations, tissue penetration, neurological involvement, and the potential advantages and limitations of alternating treatment periods with breaks.

The conversation provides insight into Dr. Teulières' clinical approach and raises important questions about how Lyme disease treatment strategies might be evaluated and improved.

Explore more physician interviews and conference conversations through Tick Boot Camp's LIVE from ILADS podcast series.

Do you have to feel worse before you get better from Lyme disease? And could pushing through severe Herxheimer reactions actually make recovery more difficult?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reunites with Dr. Casey Kelley, MD, a functional medicine physician, Lyme disease survivor, and founder of Case Integrative Health in the Chicago area, for an important conversation about Jarisch-Herxheimer reactions, Lyme disease treatment, inflammation, neuroplasticity, and the physical and emotional rehabilitation involved in chronic illness recovery.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the discussion explores one of the most debated questions in the Lyme disease community: Is a Herxheimer reaction a necessary sign that treatment is working, or can excessive inflammation interfere with healing?

Dr. Kelley draws on her experience as both a physician and former Lyme disease patient to explain what a Herxheimer reaction is, why symptoms may temporarily worsen during treatment, and why she believes aggressive treatment should not come at the expense of a patient's ability to function.

Rich also introduces Tick Boot Camp's PARM healing framework: Prehabilitation, Assist, Rehabilitate, and Maintenance, which reflects patterns observed through hundreds of patient interviews.

Together, they explore why recovery is rarely linear, why patients need individualized treatment plans, and how nervous system regulation and neuroplasticity may play a role in rehabilitation.

The conversation also celebrates an encouraging milestone: Dr. Kelley is expanding Case Integrative Health to improve patient access to care.

Meet Dr. Casey Kelley, MD

Dr. Casey Kelley, MD, is a functional medicine physician and founder of Case Integrative Health, a Chicago-area practice focused on complex chronic illnesses.

Her clinical interests include Lyme disease and associated infections, immune dysfunction, inflammation, and integrative approaches to patient care.

Dr. Kelley also brings personal experience to her work.

As a former Lyme disease patient, she understands what it feels like to experience debilitating symptoms while appearing outwardly healthy.

During the interview, she recalls living with postural orthostatic tachycardia syndrome (POTS), which made standing and everyday activities difficult.

Her recovery journey helped shape her approach to individualized treatment and rehabilitation.

Dr. Kelley has appeared on Tick Boot Camp multiple times, sharing her experiences and insights into chronic illness recovery.

Case Integrative Health Is Expanding

Rich begins by congratulating Dr. Kelley on the growth of her medical practice.

At the time of the interview, Case Integrative Health had two locations, with plans to open a third.

Dr. Kelley explains that the expansion is primarily about improving access to care.

Her practice offers intravenous therapies, which may require patients to attend appointments regularly.

In the Chicago area, traffic and travel distances can make frequent visits challenging, especially for people experiencing significant fatigue or other chronic symptoms.

She hopes additional locations will reduce some of those barriers.

The conversation highlights an important issue for people with chronic illness: treatment access involves more than finding a healthcare provider. Transportation, physical limitations, appointment frequency, and financial resources can all affect a patient's ability to receive care.

What Is a Jarisch-Herxheimer Reaction?

One of the main topics of the interview is the Jarisch-Herxheimer reaction, commonly called a Herx.

Dr. Kelley explains that the reaction was originally described in patients receiving treatment for syphilis, another infection caused by spirochete bacteria.

A Jarisch-Herxheimer reaction is an acute inflammatory response that can occur after antimicrobial treatment for certain bacterial infections.

In Lyme disease, it may involve a temporary worsening of symptoms after antibiotics are started.

Dr. Kelley describes patients experiencing:

• Increased fatigue
• Worsening pain
• Flu-like symptoms
• Generalized discomfort
• A feeling resembling a severe hangover
• Temporary worsening of existing symptoms

She explains that these reactions can vary considerably between individuals.

Some people experience relatively mild discomfort, while others report more significant symptoms.

Importantly, not every symptom flare during treatment is a Jarisch-Herxheimer reaction. Medication side effects, allergic reactions, disease progression, and other medical complications can also cause worsening symptoms.

Is Herxing a Good Sign That Lyme Treatment Is Working?

Rich asks Dr. Kelley about a common belief in the Lyme disease community: that experiencing a strong Herxheimer reaction means treatment is successfully eliminating an infection.

Some patients believe they need to push through increasingly severe symptoms to make progress.

Dr. Kelley challenges that assumption.

She explains that although inflammatory reactions can occur during treatment, more intense symptoms do not necessarily mean better outcomes.

In her clinical approach, the goal is not to make patients as uncomfortable as possible.

Instead, she tries to balance treatment with the patient's ability to tolerate it.

A severe Herxheimer reaction is not required for successful Lyme disease treatment, and the intensity of a reaction is not a reliable measure of treatment effectiveness.

Dr. Kelley emphasizes that treatment should be individualized and that patients should communicate significant symptom changes to their healthcare professionals.

Can You Recover From Lyme Disease Without Herxing?

Dr. Kelley describes patients who improve without experiencing noticeable Herxheimer reactions.

She acknowledges that some people become concerned when treatment does not cause an obvious symptom flare.

They may wonder whether their medication is working or whether they need a more aggressive approach.

Dr. Kelley explains that she has seen patients make progress without experiencing significant treatment-related worsening.

Her message is encouraging for patients who fear they must endure severe discomfort to recover.

Not experiencing a Herxheimer reaction does not mean treatment is failing.

Likewise, experiencing a reaction does not establish that a treatment is effective.

Treatment response should be evaluated through appropriate clinical assessment rather than symptom worsening alone.

How Much Herxing Is Too Much?

Rich asks Dr. Kelley where she draws the line between manageable treatment-related discomfort and symptoms that warrant changing the treatment plan.

Dr. Kelley explains that she becomes concerned when patients experience severe functional limitations.

Examples include being unable to get out of bed, care for children, complete essential activities, or think clearly.

She believes prolonged, debilitating symptom flares should prompt reassessment rather than automatic encouragement to push harder.

In the interview, Dr. Kelley discusses supportive approaches used in her practice, including measures intended to address discomfort and inflammation.

However, supplements, detoxification products, and other supportive therapies should not be assumed to prevent or treat a true Jarisch-Herxheimer reaction.

Severe, persistent, or unexpected symptoms during treatment require medical evaluation. Patients should not independently stop, increase, or reduce prescribed medications without appropriate clinical guidance.

Why More Aggressive Treatment Is Not Always Better

Dr. Kelley explains that patients differ significantly in their tolerance of medications and other interventions.

Some patients can tolerate complex treatment regimens.

Others experience substantial symptoms or adverse effects from relatively small changes.

She emphasizes that treatment decisions should account for the individual patient's medical history, symptoms, functional status, and response.

Rich asks whether reducing treatment intensity might slow the process of addressing an infection.

Dr. Kelley suggests that treatment intensity and overall recovery are not always the same thing.

Her concern is that excessive symptom burden may create additional challenges that patients must overcome during rehabilitation.

The broader takeaway is that successful care requires balancing effectiveness, safety, and tolerability.

Patients should not interpret worsening symptoms as a reason to continue an intervention without reassessment.

Why Dr. Kelley's Personal Lyme Disease Experience Matters

Rich asks whether physicians who have personally experienced Lyme disease bring a different perspective to patient care.

Dr. Kelley believes lived experience can deepen a clinician's empathy and understanding.

She recalls struggling to sit upright, think clearly, and complete ordinary activities while appearing healthy to others.

Those experiences helped her understand how difficult invisible illnesses can be.

However, she also emphasizes that physicians do not need to have experienced a particular disease to treat it effectively.

She believes the most important qualities include clinical knowledge, compassion, careful observation, and the ability to tailor care to each patient.

Her perspective highlights the value of combining medical expertise with genuine understanding of the patient's experience.

Why Lyme Disease Recovery Is Not Linear

Rich and Dr. Kelley discuss how recovery from prolonged illness often involves periods of progress followed by setbacks.

Some patients improve steadily.

Others experience fluctuating symptoms, changing functional abilities, or periods when additional medical evaluation is needed.

Dr. Kelley explains that these experiences can be especially frustrating when patients expect recovery to follow a predictable timeline.

She encourages recognizing progress even when it occurs gradually.

The discussion also emphasizes that patients may need different forms of support at different stages of their journey.

Medical treatment, physical rehabilitation, psychological support, and ongoing prevention can all have roles depending on the individual's circumstances.

Introducing Tick Boot Camp's PARM Healing Framework

Rich introduces a framework developed from patterns observed through Tick Boot Camp's extensive patient interviews.

The framework is called PARM, representing four interconnected stages of recovery.

P — Prehabilitation

Prehabilitation involves preparing and supporting the patient before or alongside more intensive treatment.

Depending on the person's medical needs, this may include addressing nutritional concerns, sleep disturbances, physical limitations, or other health conditions.

The goal is to improve readiness and tolerance for appropriate medical care.

A — Assist

Rich uses the term Assist to emphasize supporting the body's response to illness rather than viewing treatment exclusively as a battle against microbes.

For infections requiring antimicrobial therapy, appropriate medications remain essential.

Other supportive interventions may help address symptoms or coexisting health concerns.

R — Rehabilitate

Rehabilitation involves addressing functional limitations that may remain during or after treatment.

This can include physical conditioning when medically appropriate, occupational rehabilitation, and support for cognitive or emotional challenges.

For some patients, rehabilitation may require a gradual, individualized approach.

M — Maintenance

Maintenance focuses on sustaining improvements, managing ongoing health needs, and reducing preventable risks.

For Lyme disease, this includes continued tick bite prevention and prompt evaluation of possible reinfection.

Rich emphasizes that the framework is not necessarily linear.

Patients may need to revisit different aspects of care as their circumstances change.

PARM is Tick Boot Camp's observational framework, not a clinically validated Lyme disease treatment protocol.

Celebrating Recovery: Dr. Kelley's Disco Balls

Dr. Kelley shares a tradition from her medical practice.

Her team refers to patients who have made meaningful progress in rehabilitation as disco balls.

The name reflects their desire to celebrate recovery milestones.

Dr. Kelley explains that working with complex chronic illness can be emotionally demanding for patients and healthcare professionals alike.

Recognizing meaningful improvements helps reinforce hope and acknowledges the work patients have invested in their recovery.

For someone who has spent years struggling with basic activities, being able to walk, exercise, work, or participate in family life can represent an extraordinary achievement.

Dr. Kelley believes these milestones deserve celebration.

Recovering From POTS: Learning to Trust the Body Again

Dr. Kelley shares a personal example from her experience with POTS.

At one point, standing was frightening because she feared fainting and injuring herself.

Even after her physical condition improved, she needed time to regain confidence in activities that had previously felt unsafe.

She describes gradually becoming more comfortable standing, walking, and eventually returning to exercise.

Her experience illustrates how recovery from a prolonged medical condition can involve both physical and emotional adjustment.

The fear of symptoms returning may persist even after substantial improvement.

For patients with POTS or other conditions involving exercise intolerance, rehabilitation must be adapted to their medical status and should not involve pushing through unsafe symptoms.

Fear of Relapse After Lyme Disease

Rich discusses another challenge that can arise after significant recovery: the fear of becoming seriously ill again.

He shares Tick Boot Camp co-founder Matt Sabatello's experience of progressing from long-distance running to being bedbound during his Lyme disease journey.

After a prolonged period of illness, Matt gradually regained significant physical function and returned to running.

Rich celebrates that progress while acknowledging that the fear of relapse can remain.

The discussion highlights an important reality for people recovering from chronic illness.

Regaining physical abilities does not automatically eliminate the emotional impact of having lost them.

Dr. Kelley recognizes that rebuilding confidence may take time.

Supportive rehabilitation can help patients gradually resume activities when medically appropriate.

Neuroplasticity and Brain Retraining During Rehabilitation

Rich asks Dr. Kelley about the role of neuroplasticity in recovery.

Neuroplasticity refers to the nervous system's ability to adapt and change through experience, learning, and repeated activity.

Dr. Kelley discusses how prolonged pain, illness, and stressful experiences may influence patterns of attention, fear, and symptom perception.

She believes some patients may benefit from learning to respond differently to certain sensations and situations.

Rich and Dr. Kelley emphasize that these experiences do not mean symptoms are imaginary.

Pain and other symptoms are real, even when nervous system processes influence how they are experienced.

Research supports certain psychologically informed approaches for managing chronic pain and related functional difficulties.

However, brain retraining is not an established cure for Lyme disease, persistent infection, POTS, or all symptoms following treatment.

Its potential role should be evaluated alongside appropriate medical assessment and individualized care.

For related conversations, explore Tick Boot Camp's interview with Ben Ahrens about neuroplasticity.

Why Medical Validation Matters When Discussing Brain Retraining

Dr. Kelley acknowledges that conversations about the brain and nervous system can be difficult for people who have experienced medical dismissal.

Many patients have previously been told that their symptoms are psychological or that nothing is physically wrong.

As a result, suggestions involving brain retraining may feel invalidating.

Dr. Kelley makes an important distinction.

She recognizes that patients can experience genuine physiological illness while also benefiting from strategies that address pain processing, fear, stress responses, or functional limitations.

These approaches are not mutually exclusive.

A patient can need medical treatment for a physical condition and also benefit from supportive rehabilitation.

The key is ensuring that brain-based interventions are not used to dismiss symptoms or discourage further medical investigation when appropriate.

Finding Purpose After Chronic Illness

Rich and Dr. Kelley also discuss how difficult health experiences can change a person's perspective on life.

For some patients, recovery creates opportunities to reconsider priorities, relationships, and personal goals.

Rich reflects on how the Lyme disease journey has influenced Tick Boot Camp's advocacy mission.

Dr. Kelley's experience similarly shaped her decision to help others navigating complex illnesses.

They acknowledge that finding meaning can be an important part of some people's recovery stories.

However, patients should not feel obligated to discover a greater purpose in their suffering.

Everyone deserves compassionate care regardless of how they interpret their illness.

How to Learn More About Dr. Casey Kelley

Dr. Kelley is the founder of Case Integrative Health, serving patients in the Chicago area.

Her practice focuses on functional and integrative approaches to complex chronic illness.

During the interview, she discusses the practice's expansion and its efforts to improve access to services for patients who may struggle with frequent travel.

Visit Case Integrative Health for information about the medical team, available services, locations, and appointments.

Key Takeaways

• A Herxheimer reaction is an inflammatory response associated with treatment of certain infections. It can cause temporary worsening of symptoms.
• Herxing is not required for recovery. Patients can improve without experiencing a noticeable Jarisch-Herxheimer reaction.
• More severe symptoms do not prove treatment is more effective. Significant or prolonged worsening should prompt medical reassessment.
• Treatment must be individualized. Patients differ in medical history, medication tolerance, symptoms, and rehabilitation needs.
• Dr. Kelley's lived experience informs her care. Her history with Lyme disease and POTS gives her personal insight into invisible illness.
• Recovery may involve several overlapping stages. Tick Boot Camp's PARM framework describes prehabilitation, assistance, rehabilitation, and maintenance.
• Physical rehabilitation can be important. Regaining strength, mobility, and confidence may take time.
• The fear of relapse can persist after improvement. Emotional recovery may require support alongside physical rehabilitation.
• Neuroplasticity may contribute to symptom management. Evidence varies by condition, and brain retraining should not replace medical treatment.
• Progress deserves celebration. Dr. Kelley's disco ball tradition recognizes meaningful patient recovery milestones.
• Hope and realistic expectations can coexist. Improvement is possible, but recovery pathways differ and no treatment guarantees a particular outcome.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Casey Kelley, MD, founder of Case Integrative Health and a returning Tick Boot Camp guest.

Rich and Dr. Kelley discuss Jarisch-Herxheimer reactions, the risks of overly aggressive treatment, individualized Lyme disease care, rehabilitation, neuroplasticity, and the importance of celebrating recovery milestones.

The interview also introduces Tick Boot Camp's PARM framework and explores why healing from prolonged illness may involve much more than addressing an infection alone.

Discover additional physician interviews and conference conversations through Tick Boot Camp's LIVE from ILADS podcast series.

What if healing from chronic Lyme disease involves more than treating infections—and includes learning how to reconnect with your body, regulate your nervous system, and support your natural capacity for recovery?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Jacey Goddard, DO, a triple board-certified osteopathic physician from Maine, to explore the connection between Lyme disease, nervous system dysregulation, chronic pain, medical trauma, mind-body healing, and neuroplasticity.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, this conversation challenges the idea that recovering from complex chronic illness is simply about finding the next medication, supplement, or treatment protocol.

Dr. Goddard shares how her own difficult health journey shaped her approach to medicine and inspired her to help patients develop a healthier relationship with their bodies.

She explains why people living with Lyme disease, fibromyalgia, POTS, migraines, post-COVID conditions, and other complex illnesses may benefit from addressing nervous system regulation alongside appropriate medical care.

Rich and Dr. Goddard also discuss the sympathetic and parasympathetic nervous systems, the influence of chronic stress, the importance of emotional and physical connection, and why no two patients should be expected to follow identical healing journeys.

Throughout the conversation, Dr. Goddard emphasizes a message of hope:

Even when an illness is complicated and answers are difficult to find, there may still be meaningful ways to support healing and improve quality of life.

Meet Dr. Jacey Goddard, DO

Dr. Jacey E. Goddard, DO is a triple board-certified osteopathic physician practicing in Topsham, Maine.

Her medical training includes board certification in:

• Family Medicine
• Integrative Medicine
• Neuromusculoskeletal Medicine and Osteopathic Manipulative Medicine

Dr. Goddard practices at RiverTree Osteopathic Health, where she focuses on hands-on osteopathic treatment and individualized approaches to complex health conditions.

Her patients include people experiencing:

• Lyme disease and other tick-borne illnesses
• Fibromyalgia
• Chronic migraines
• Persistent pain
• Postural orthostatic tachycardia syndrome (POTS)
• Post-COVID symptoms
• Other difficult-to-treat conditions

Dr. Goddard combines her medical training with an interest in the relationship between physical health, emotional well-being, and nervous system function.

She is also the creator of The Art & Science of Healing from Within, an educational program focused on reconnecting with the body and developing practical mind-body awareness skills.

When Even a Doctor Is Told There's Nothing More to Do

Dr. Goddard begins by sharing that her interest in complex chronic illness is deeply personal.

She has experienced her own prolonged health challenges and understands the frustration of seeking answers when medical professionals cannot explain what is happening.

Despite being a physician herself, she encountered responses suggesting that her symptoms were psychological or that nothing more could be done.

Those experiences influenced how she now approaches patients.

She recognizes that people living with chronic illness may already have spent years searching for explanations, undergoing treatments, and trying to regain their health.

Being told there are no additional options can be especially discouraging.

Dr. Goddard believes clinicians should remain curious, compassionate, and open to helping patients improve their well-being, even when a condition is not fully understood.

Her experience reinforces an important message for the Lyme disease community: A patient deserves to be heard and supported even when the answers are incomplete.

Lyme Disease in Maine: Borrelia, Bartonella, and Babesia

Rich asks Dr. Goddard about the prevalence of tick-borne diseases in Maine.

She describes tick exposure as a significant concern and recalls particularly high tick activity during the preceding spring.

Their conversation turns to three pathogen groups frequently discussed in the Lyme disease community:

Borrelia: Bacteria associated with Lyme disease and certain relapsing fever illnesses.

Bartonella: Bacteria responsible for several different infectious diseases, including cat-scratch disease.

Babesia: Tick-borne parasites that infect red blood cells and can cause babesiosis.

Rich explains that Tick Boot Camp has interviewed an increasing number of patients who report diagnoses involving multiple infections.

He asks whether this reflects changes in tick populations, greater awareness, better diagnostic testing, or improvements in clinical recognition.

Dr. Goddard believes several factors may contribute.

She also emphasizes that patients often experience multiple overlapping health challenges.

Although co-infections can occur, not every person with Lyme disease has Bartonella or Babesia, and the frequency of co-infections varies by region and exposure history.

What Is Terrain Theory, and How Does It Relate to Lyme Disease?

One of the central themes of the interview is Dr. Goddard's interest in what she calls terrain theory.

She uses the term to describe the factors that may influence a person's vulnerability to illness and capacity to recover.

Rather than focusing exclusively on an infectious organism, she encourages patients and clinicians to consider the broader conditions affecting health.

These may include:

• Sleep and recovery
• Chronic stress
• Nervous system regulation
• Environmental exposures
• Nutrition and general health
• Previous trauma
• Existing medical conditions
• Individual physiological differences

Dr. Goddard explains that some patients report becoming more symptomatic during periods of significant physical or emotional stress.

She believes that understanding these patterns can help patients identify areas where additional support may be beneficial.

This perspective does not mean that stress causes Lyme disease or that improving lifestyle factors can eliminate an established infection.

Lyme disease is caused by infection with Borrelia bacteria. Supportive care may complement appropriate diagnosis and treatment but does not replace it.

Understanding Threat, Vulnerability, and Chronic Illness

Rich introduces an analogy from retired U.S. General Stanley McChrystal's book Risk.

He describes risk as the interaction between a threat and a person's vulnerability.

Applied to tick-borne illness, the threat might involve exposure to an infected tick.

Vulnerability could involve individual health circumstances or other factors influencing the body's response.

Rich connects this framework to Dr. Goddard's discussion of terrain.

They explore how environmental changes, expanding tick activity, and wildlife populations may influence opportunities for exposure.

Dr. Goddard then shifts the conversation toward the aspects of health that people may be able to support in their everyday lives.

Her goal is to help patients recognize that while they cannot control every exposure or medical outcome, they may still have opportunities to improve their comfort, coping skills, and overall well-being.

Nervous System Dysregulation and Chronic Lyme Disease

Dr. Goddard discusses how chronic illness can affect a person's relationship with their body.

People experiencing persistent symptoms may become highly attentive to pain, fatigue, dizziness, or other physical sensations.

Over time, illness-related stress can contribute to patterns of heightened vigilance and difficulty relaxing.

Rich introduces the sympathetic and parasympathetic branches of the autonomic nervous system.

The sympathetic nervous system helps coordinate responses to stress and perceived threats.

The parasympathetic nervous system supports functions such as digestion, recovery, and aspects of rest.

Both systems are essential, and healthy regulation involves flexibility rather than remaining permanently in one state.

Dr. Goddard believes learning to recognize and respond to nervous system patterns can help some patients manage symptoms and improve their daily functioning.

However, nervous system dysregulation is not an established explanation for every symptom of Lyme disease, and nervous system exercises cannot substitute for treating an active infection.

Are We Becoming Disconnected From Our Bodies?

Dr. Goddard argues that modern life often encourages people to remain constantly busy and focused on external expectations.

Work, technology, social obligations, and everyday responsibilities can make it difficult to recognize physical and emotional needs.

She describes how people may become disconnected from their own internal experiences.

Rather than noticing fatigue and responding with appropriate rest, someone may continue pushing through demanding schedules.

Rather than recognizing stress, they may become accustomed to living in a heightened state of tension.

Dr. Goddard believes reconnecting with the body begins with developing awareness of these patterns.

She encourages people to approach their bodies with curiosity and compassion instead of frustration or fear.

Her message is not that patients have created their illnesses through their behavior.

Instead, she believes that learning to respond more supportively to the body may be valuable during recovery.

Your Body Is Not Your Enemy

One of Dr. Goddard's most memorable messages is that the body should be treated as an ally rather than an enemy.

She recognizes that people living with chronic pain or unpredictable symptoms can develop a difficult relationship with their bodies.

When symptoms repeatedly interfere with daily life, it is understandable to feel frustrated, frightened, or discouraged.

Dr. Goddard encourages a different approach.

Instead of interpreting every sensation as a battle against the body, she suggests asking what support might be helpful in that moment.

That might involve rest, medical attention, adjusting an activity, practicing a calming exercise, or recognizing a physical limitation.

She believes that developing a more compassionate relationship with the body can help reduce some of the emotional distress associated with chronic illness.

This approach does not require patients to ignore symptoms or assume that positive thinking will resolve a medical condition.

Mind-Body-Spirit Healing: Treating the Whole Person

Rich and Dr. Goddard explore the relationship between physical, emotional, mental, and spiritual well-being.

Rich questions whether dividing human experience into separate categories sometimes prevents people from understanding how closely these aspects of life interact.

Dr. Goddard agrees that health involves interconnected processes.

She emphasizes that thoughts, emotions, physical sensations, and nervous system activity influence one another.

For example, persistent pain can affect mood and sleep.

Poor sleep may worsen pain sensitivity or emotional distress.

Stress can influence breathing patterns, muscle tension, and other physiological responses.

These relationships are real, but they do not mean that every physical symptom originates in thoughts or emotions.

Dr. Goddard's broader message is that comprehensive care should recognize the whole person.

Mindfulness or Bodyfulness? Learning to Be Present

Dr. Goddard introduces an interesting alternative to conventional discussions of mindfulness.

She suggests that some people might benefit from thinking about bodyfulness.

Rather than focusing exclusively on thoughts, her approach encourages awareness of physical sensations and the experience of being present in the body.

She describes simple practices such as:

• Pausing briefly during the day
• Noticing physical sensations without immediately judging them
• Becoming aware of breathing
• Recognizing signs of tension or fatigue
• Allowing moments of physical comfort
• Responding to personal needs with patience

Dr. Goddard emphasizes that these practices do not require elaborate equipment or lengthy meditation sessions.

She believes small moments of awareness, repeated throughout daily life, can help people develop more supportive habits.

For patients with trauma histories or conditions that make body awareness uncomfortable, these practices may need to be adapted with professional guidance.

Neuroplasticity: Can We Change Our Patterns?

Rich and Dr. Goddard discuss the concept of neuroplasticity, the nervous system's capacity to change through experience and learning.

Dr. Goddard believes that repeated patterns of attention, behavior, and emotional response can influence how people experience and respond to their bodies.

She describes working with patients who have experienced panic attacks, palpitations, chronic pain, and post-traumatic stress symptoms.

According to Dr. Goddard, some patients have reported improvements after learning mind-body awareness techniques.

These are her clinical observations rather than controlled evidence that the techniques treat the underlying causes of those conditions.

Neuroplasticity is a well-established biological phenomenon, but specific brain-retraining or mind-body programs vary in their supporting evidence.

For additional perspectives, explore Tick Boot Camp's interview with Ben Ahrens about neuroplasticity.

Why Healing Is Not One-Size-Fits-All

Rich raises concerns about patients adopting identical treatment protocols simply because someone else reported success.

He describes how groups of patients sometimes begin using the same supplements or treatment approaches together.

While community support can be valuable, Rich emphasizes that people may have very different diagnoses, symptoms, medical histories, and treatment needs.

Dr. Goddard agrees.

She believes individualized care is essential because no two people have identical experiences.

An intervention that helps one person may not be appropriate for another.

This applies to medications, supplements, rehabilitation, and mind-body practices.

Their discussion encourages patients to seek personalized medical guidance rather than assuming that a treatment will work because it helped someone else.

Medical Trauma and Feeling Dismissed by Healthcare Professionals

Rich returns to Dr. Goddard's personal experience of seeking medical help.

He notes that even physicians can encounter dismissive responses when they experience poorly understood symptoms.

Dr. Goddard acknowledges how painful and frustrating those experiences can be.

They discuss the term medical gaslighting, including whether every dismissive encounter involves deliberate manipulation or whether some clinicians simply lack sufficient knowledge.

Dr. Goddard believes intent and understanding matter when evaluating these interactions.

At the same time, she recognizes that patients may experience real emotional harm regardless of a clinician's intentions.

The conversation emphasizes the importance of validating patient experiences without allowing painful encounters to define every future healthcare interaction.

Patients deserve respectful communication, appropriate investigation, and honest discussions about uncertainty.

Trauma, Stress, and the Healing Process

Dr. Goddard explains that prolonged illness can itself be traumatic.

People may experience fear, isolation, financial strain, repeated medical appointments, and uncertainty about their future.

Some also have previous traumatic experiences that influence how they respond to stress.

She believes helping patients develop greater emotional and physical awareness may support their ability to cope with these challenges.

Rich discusses how learning about nervous system responses changed his own understanding of health and personal development.

Together, they explore the importance of recognizing patterns without judging oneself for having them.

Trauma-informed care can be an important part of supporting people with chronic illness, but trauma is not a prerequisite for developing Lyme disease, and resolving trauma is not a cure for infection.

The Art & Science of Healing from Within

Dr. Goddard discusses the development of her educational course, The Art & Science of Healing from Within.

She explains that the program originally had a different title: The Art and Science of Being Human.

Her goal was to teach skills she wishes she had learned earlier in life.

These include reconnecting with the body, recognizing habitual patterns, and practicing self-awareness throughout ordinary daily activities.

She ultimately changed the title to emphasize healing and make the purpose of the course clearer.

Dr. Goddard believes that meaningful change does not always require expensive devices, complicated routines, or spending hours meditating.

Instead, she encourages people to practice brief moments of connection with themselves throughout the day.

The course reflects her educational philosophy and personal clinical experience. Its effectiveness as a treatment for Lyme disease has not been established through clinical trials.

How Osteopathic Medicine Fits Into Her Approach

As an osteopathic physician, Dr. Goddard emphasizes the relationship between the body's structure and function.

Her primary clinical focus is osteopathic manipulative treatment, a hands-on approach used by some physicians to evaluate and address musculoskeletal dysfunction.

She integrates this work with her interest in whole-person care.

Patients may seek osteopathic treatment for concerns involving pain, movement, or physical discomfort.

The effectiveness of osteopathic manipulative treatment varies by condition, and it should not be considered a substitute for antimicrobial treatment when an active bacterial infection requires it.

Dr. Goddard's approach reflects her belief that patients may benefit from attention to both their diagnosed medical conditions and their overall functioning.

How to Work With Dr. Jacey Goddard

Dr. Goddard practices at RiverTree Osteopathic Health in Topsham, Maine.

Her work focuses on osteopathic manipulative treatment, integrative medicine, and supporting patients with complex health challenges.

For more information about her medical background and philosophy, visit her official physician biography.

Patients and healthcare professionals interested in her educational approach to nervous system regulation and mind-body awareness can also explore The Art & Science of Healing from Within.

Key Takeaways

• Healing from chronic illness can involve multiple dimensions of health. Dr. Goddard emphasizes physical, emotional, and nervous system support alongside appropriate medical care.
• Dr. Goddard understands medical uncertainty firsthand. Her personal healing journey shaped her compassionate approach to patients with difficult-to-treat conditions.
• Lyme disease is a significant concern in Maine. Rich and Dr. Goddard discuss Borrelia, Bartonella, Babesia, and changing patterns of tick exposure.
• Individual vulnerability is complex. Sleep, stress, medical history, environmental exposures, and other factors can influence overall health.
• Nervous system regulation may support symptom management. Learning about autonomic responses can help some people better understand their experiences.
• The body deserves compassion. Dr. Goddard encourages patients to develop a more supportive relationship with their physical sensations and needs.
• Mind-body practices do not need to be complicated. Brief moments of awareness may be more practical than elaborate daily routines.
• Neuroplasticity offers opportunities for learning and adaptation. However, specific brain-retraining programs should not be assumed to cure infectious diseases.
• Medical trauma deserves recognition. Patients can experience emotional harm when symptoms are dismissed or poorly understood.
• Individualized treatment matters. No single supplement, protocol, or nervous system technique is appropriate for every patient.
• Healing is possible, but no method guarantees recovery. Dr. Goddard encourages hope, curiosity, and compassionate self-care.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Jacey Goddard, DO, a triple board-certified osteopathic physician practicing in Topsham, Maine.

Rich and Dr. Goddard explore the relationship between chronic Lyme disease, nervous system regulation, mind-body healing, medical trauma, neuroplasticity, and individualized healthcare.

Their discussion challenges patients and practitioners to consider how physical health, emotional experiences, and nervous system function interact—while recognizing the importance of appropriate medical diagnosis and treatment.

Discover more interviews with physicians, researchers, and patient advocates through Tick Boot Camp's LIVE from ILADS podcast series.

Read transcript

What actually happens when a tick bites you—and how can something so small manipulate the human immune system long enough to feed and potentially transmit disease?

Tick-borne disease researcher Monica Cipriani joins Rich Johannesen, co-founder of Tick Boot Camp Podcast, for an in-depth exploration of the biology of the tick bite, Lyme disease, alpha-gal syndrome, tick saliva, immune modulation, and tick-borne disease transmission.

This conversation was recorded in person at the Tick Boot Camp studio immediately after Monica led our team on a tick-dragging field day across Long Island, where we collected hundreds of ticks from a farm, public trail, and residential environment—including clusters of nearly invisible lone star tick larvae known as “tick bombs,” blacklegged ticks, and an invasive Asian longhorned tick.

See what we found while dragging for ticks on Long Island.

From Lyme Disease Caregiver to Tick-Borne Disease Researcher

Monica's work is deeply personal.

With bachelor's and master's training in microbiology, she transitioned into epidemiology to focus on research, public health, education, advocacy, and policy surrounding tick-borne diseases.

Her mother endured years of unexplained symptoms—including hives, joint pain, brain fog, and cognitive changes—before eventually receiving a Lyme disease diagnosis. Years later, Monica watched her young daughter develop concerning neurological, behavioral, sleep, and physical symptoms while living in Kentucky. After numerous medical appointments, her family traveled to New York, where her daughter was diagnosed with Lyme disease.

Those experiences helped shape Monica's determination to study why tick-borne diseases can be missed, misclassified, and misunderstood—and how research can help patients receive answers sooner.

How Does a Tick Find and Bite a Human?

Monica takes listeners inside the remarkable biology of ticks.

Ticks are arachnids, not insects, and different species can act as vectors for different pathogens. The episode explores three important species:

• Blacklegged tick ( Ixodes scapularis ) — associated with Lyme disease and other tick-borne infections
• Lone star tick ( Amblyomma americanum ) — strongly associated with alpha-gal syndrome and capable of transmitting several pathogens
• American dog tick ( Dermacentor variabilis ) — another common human-biting tick

Using a specialized sensory structure called the Haller's organ, ticks can detect environmental signals associated with potential hosts.

Some ticks wait for a host to pass close enough to grab onto, while lone star ticks can be particularly aggressive in seeking hosts.

Once aboard, ticks crawl toward locations where they can establish a successful blood meal.

Tick Saliva: An Evolutionary Tool for Feeding

One of the most fascinating parts of the conversation focuses on tick saliva.

A tick needs to remain attached long enough to complete its blood meal, but the human body has numerous defenses designed to detect an injury or foreign organism.

Monica explains how components of tick saliva can interfere with those defenses.

The discussion explores how ticks can:

• Reduce pain at the bite site
• Suppress itching and histamine-related responses
• Interfere with blood clotting
• Affect blood vessels and platelet activity
• Modulate local immune responses
• Anchor themselves using specialized mouthparts and cement-like substances
• Alter salivary molecules throughout the feeding process

Rather than simply suppressing the immune system completely, Monica describes how ticks can modulate the local immune environment in ways that help preserve viable tissue and allow feeding to continue.

That means a tick bite isn't simply a tiny wound through which a pathogen enters. The tick itself may help create the biological environment in which transmission occurs.

Why Tick-Borne Disease Is About More Than Lyme

Ticks may acquire microorganisms during earlier blood meals from wildlife and subsequently expose another host during feeding.

The conversation examines the ecological relationship among ticks, wildlife, pathogens, and humans and why understanding the vector is critical to understanding tick-borne illness.

Monica and Rich discuss Lyme disease and Borrelia, along with other tick-associated threats including:

• Ehrlichiosis
• STARI
• Powassan virus
• Bourbon virus
• Heartland virus
• Alpha-gal syndrome

The discussion also explores why the length of attachment matters while emphasizing an important point: people frequently do not know exactly when a tick attached.

Larval and nymphal ticks can be extraordinarily difficult to see. During Tick Boot Camp's Long Island field work, the team collected larvae so small that hundreds looked almost like specks of pepper.

Learn more about ticks and tick-borne disease in this University of Kentucky resource co-authored by Monica.

Alpha-Gal Syndrome and the Lone Star Tick

A major focus of Monica's current research is alpha-gal syndrome (AGS), sometimes called the red meat allergy.

Alpha-gal syndrome is associated with tick bites—particularly bites from the lone star tick in the United States—and can cause an immune reaction to alpha-gal, a sugar found in most non-primate mammals and mammal-derived products.

For some people, reactions may be relatively mild. For others, exposure can potentially result in severe allergic reactions, including anaphylaxis.

But one of the biggest scientific questions remains:

Why can two people be bitten by similar ticks and have completely different outcomes?

Monica discusses the unanswered questions surrounding individual immune responses, sensitization, demographics, environmental exposures, and the unusual way a tick bite introduces alpha-gal alongside a complex mixture of salivary molecules.

Her research aims to better understand those patterns and the patient experience surrounding this emerging condition.

Learn more about Monica Cipriani's epidemiology and alpha-gal research.

Lyme Disease, Research, and the Questions Patients Are Asking

The episode also tackles difficult questions that remain important to the Lyme community, including the possibility of congenital transmission of Lyme disease.

Monica explains why researchers must remain willing to investigate unanswered questions rather than dismiss possibilities before adequate research exists.

As both a scientist and a mother whose family has been affected by Lyme disease, she brings a rare perspective to the conversation: understanding the scientific process while also understanding what it feels like when a patient or parent believes something important is being missed.

Why Better Tick Research Matters

Monica argues that improving Lyme and tick-borne disease care requires stronger communication among researchers, public health professionals, clinicians, and patients.

Research ultimately helps create the evidence clinicians can use to recognize disease, improve diagnosis, develop treatments, and establish better standards of care.

For Monica, that work comes back to one goal: helping people feel heard while asking the scientific questions that could lead to better answers.

From the Field to the Tick Boot Camp Studio

This interview capped an extraordinary day of hands-on tick research on Long Island.

Monica, her husband Dr. Andre Ene, Tick Boot Camp co-founders Matt Sabatello and Rich Johannesen, filmmaker Reece Robinson, and the production team dragged for ticks at Malik Farms in Coram, the Rails to Trails path in Rocky Point, and a residential property and nearby groundwater recharge basin.

The team encountered hundreds of lone star tick larvae, blacklegged ticks, multiple “tick bombs,” and an invasive Asian longhorned tick identified by Monica.

The experience made the subject of this interview tangible: ticks capable of affecting human and animal health aren't only deep in the woods. They can be present where people live, work, walk, farm, exercise, and spend time with their families.

Explore the Long Island tick-dragging field day, photos, videos, species, and findings.

Tick Boot Camp Resourceshttps://www.kyerc.com/studentshttps://tickbootcamp.com/long-island-tick-drag-tick-bombs-invasive-tick/

• Tick Boot Camp Tick Bite Blueprint
• Lyme Disease Testing
• More Tick-Borne Disease Researcher Interviews

What happens when someone living with chronic Lyme disease uses their own experience to tackle one of the biggest challenges facing the Lyme community: a lack of public awareness, understanding, and compassion?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Eva Scarano, founder of LymeLnk, to discuss her personal Lyme disease journey, the creation of a patient-centered advocacy organization, and her mission to make Lyme disease education accessible to the general public.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores how Eva transformed her experiences with Lyme disease into a nonprofit organization focused on storytelling, community engagement, tick prevention, early detection, and public education.

Eva shares how she was diagnosed with Lyme disease in 2016 after developing a bull's-eye rash and flu-like symptoms, how her health deteriorated following a period of improvement, and how reaching her lowest point during graduate school inspired her to rethink her relationship with chronic illness.

Through her graduate studies at Parsons School of Design, Eva began researching the Lyme disease community and interviewing patients, advocates, and organizations to better understand where education and awareness efforts could have the greatest impact.

That research ultimately led to the creation of LymeLnk, an organization working to make basic Lyme disease knowledge as familiar to the public as other common health and safety information.

Rich and Eva discuss Lyme disease stigma, the importance of patient stories, community-centered design, tick-borne disease awareness in California, the role of climate and environmental changes, and innovative approaches to educating children and families.

Meet Eva Scarano: Founder of LymeLnk

Eva Scarano is the founder of LymeLnk, a community-focused Lyme disease education and awareness organization developed through her graduate studies at Parsons School of Design in New York City.

Before launching LymeLnk, Eva spent approximately six years working in corporate technology, including sales and product marketing.

She later pursued graduate studies in strategic design and management, a discipline that applies human-centered design principles to complex organizational and social challenges.

Eva's own experiences with Lyme disease inspired her to apply these methods to public health education and community advocacy.

Rather than building another organization focused primarily on research funding, clinical education, or legislative advocacy, she identified an opportunity to reach people who know very little about Lyme disease.

Her goal is straightforward: Help the general public understand the basics of Lyme disease so more people can recognize risks, take preventive action, and respond compassionately to those living with the illness.

A Textbook Lyme Disease Diagnosis in 2016

Eva's Lyme disease story begins in 2016 during her senior year of college in Ann Arbor, Michigan.

She developed symptoms commonly associated with early Lyme disease, including:

• A bull's-eye rash
• Flu-like symptoms
• Significant fatigue
• Cognitive difficulties

Eva visited an urgent care facility, where her symptoms were recognized and she received a Lyme disease diagnosis.

She subsequently worked with a practitioner experienced in treating Lyme disease.

Eva describes undergoing approximately three months of treatment involving antibiotics and herbal therapies.

The experience was difficult.

She recalls waking up to take an economics final exam and realizing she could not read the material.

With assistance from her university's disability services, she was able to complete her academic responsibilities.

Following treatment, Eva experienced approximately two years of significant improvement.

At the time, she believed the worst of her Lyme disease journey might be behind her.

When Symptoms Returned After Moving to San Francisco

In 2019, Eva moved into an apartment in San Francisco that she describes as having significant mold problems.

She associates that environmental exposure with a deterioration in her health.

After experiencing a period of relative stability, she began struggling with recurring symptoms and increasing health challenges.

Eva describes the following years as an unpredictable cycle of improvements and setbacks.

She continued working, traveling, and maintaining an active lifestyle while simultaneously managing her health.

Although Eva believes the mold exposure contributed to her decline, the interview does not establish a medical cause-and-effect relationship between the apartment and her subsequent symptoms.

Her experience reflects the difficulty many patients face when trying to understand which factors may be contributing to a complex illness.

Reaching Her Lowest Point During Graduate School

By 2023, Eva was attending graduate school at Parsons School of Design in New York City.

She was also teaching Pilates part-time, traveling for friends' weddings, and trying to maintain the active lifestyle she had enjoyed before becoming ill.

At the same time, she was managing multiple health conditions and ongoing symptoms.

Eva describes herself as someone who naturally enjoys staying busy.

Slowing down did not come easily.

Eventually, her health deteriorated to the point that she could no longer continue at the same pace.

She describes 2023 as the sickest period of her life.

During the interview, Eva discusses several possible contributing factors, including travel, demanding schedules, immune-related health concerns, and receiving influenza and COVID-19 vaccinations on the same day.

She explicitly acknowledges that she cannot identify a single cause of her decline.

Her experience does not establish that vaccination caused her symptoms or that receiving both vaccines together is generally unsafe. Receiving recommended influenza and COVID-19 vaccines during the same visit is considered acceptable for most eligible people, with individual medical circumstances discussed with a healthcare professional.

Eva's broader point is that complex illnesses can make it difficult to determine why symptoms worsen or improve.

Turning Pain Into Purpose Through Parsons School of Design

During her most difficult period, Eva began applying her graduate coursework to the challenges facing the Lyme disease community.

Her academic program focused on strategic design and management, including human-centered problem-solving and community research.

Rather than abandoning graduate school, she used her education to investigate how Lyme disease awareness could be improved.

Eva and her collaborators interviewed more than 100 people connected to the Lyme disease community.

These conversations helped identify common frustrations involving diagnosis, treatment, education, public awareness, and social support.

Eva concluded that many organizations were already doing valuable work in specialized areas.

However, she believed an important opportunity remained: reaching people who had never experienced Lyme disease and knew little about it.

This realization became the foundation for LymeLnk.

Why Eva Founded LymeLnk

Eva explains that the Lyme disease community includes numerous organizations addressing different parts of a complicated healthcare and public health landscape.

She highlights organizations such as:

• ILADS, which provides education and professional development for healthcare practitioners
• Center for Lyme Action, which focuses on legislative advocacy and public policy
• Global Lyme Alliance, which supports research and education
• Bay Area Lyme Foundation, which funds scientific research and advances awareness

Eva believes these organizations provide important specialized services.

Rather than duplicating their work, she wanted LymeLnk to complement it.

Her organization focuses on expanding basic Lyme disease knowledge among people outside the established patient community.

She argues that public education can help create a stronger foundation for prevention, earlier recognition, and greater compassion.

The ABCs of Lyme Disease Awareness

Eva describes LymeLnk's educational mission as helping people understand the ABCs of Lyme disease.

These include basic knowledge about:

Prevention: Understanding where ticks live, how exposure occurs, and how to reduce the risk of tick bites.

Early detection: Recognizing potential signs and symptoms and knowing when to seek medical evaluation.

Diagnosis: Understanding that Lyme disease testing has limitations and that clinical history matters.

Treatment: Knowing that early evaluation and appropriate treatment are important.

Eva believes people should not have to become seriously ill before learning these fundamentals.

She wants Lyme disease awareness to become part of everyday health education.

For practical prevention guidance, explore Tick Boot Camp's Tick Bite Blueprint.

Why Patient Compassion Matters as Much as Awareness

One of the most powerful moments in the interview comes when Eva describes feedback from Lyme disease patients participating in her research.

Her team asked what successful public education would look like.

Many patients did not begin by asking for complicated policy changes or scientific breakthroughs.

They wanted something much simpler.

They wanted to be able to tell someone they had Lyme disease and receive a response demonstrating basic understanding and compassion.

Eva explains that patients often feel isolated because people around them do not understand the illness.

This lack of understanding can make it harder to discuss symptoms, ask for accommodations, or feel supported.

She believes that improving public literacy could help reduce stigma and strengthen community support.

People living with Lyme disease deserve to be heard, believed, and treated with compassion.

Storytelling as a Public Health Education Strategy

Eva believes storytelling is one of the most effective ways to reach people who are unfamiliar with Lyme disease.

Statistics and medical information are important, but personal experiences can make an unfamiliar issue feel relevant.

Her approach combines patient stories with educational campaigns tailored to specific communities.

Rather than delivering identical messages to everyone, LymeLnk aims to understand what different groups need to know.

Potential audiences include:

• Parents seeking to protect their children
• Pet owners concerned about tick exposure
• Outdoor enthusiasts and recreational groups
• People working outdoors
• Communities affected by changing tick habitats
• Environmental and public health advocates

Eva believes educational programs become more effective when they are developed with the people they are intended to serve.

What Is Community-Centered Design?

Eva introduces the concept of co-design, a method of developing programs collaboratively with the people who will use them.

Instead of creating a campaign and asking a community to accept it, LymeLnk begins by learning about the community's experiences, concerns, and existing knowledge.

The organization then works with local partners to create appropriate educational materials.

Depending on the audience, these may include:

• Public service announcements
• Social media campaigns
• Community workshops
• Hands-on tick prevention demonstrations
• Educational programs for children
• Outdoor safety events
• Storytelling initiatives featuring patient experiences

Eva explains that the organization intends to test these approaches, measure their effectiveness, and improve them before expanding.

Her goal is to develop a model that can be adapted across different communities.

Why LymeLnk Launched in San Diego

Although Eva developed the concept while attending Parsons in New York City, LymeLnk was incorporated in California.

Eva explains that the organization established a presence in both San Diego and New York.

These locations offer contrasting opportunities for Lyme disease education.

New York has a long history of public awareness because Lyme disease is well established in the Northeast.

San Diego, by comparison, offers opportunities to educate communities that may be less familiar with local tick-borne disease risks.

Eva also grew up in California and had personal connections that could help support the organization's launch.

She believes Southern California is an important place to address misconceptions about where tick-borne diseases occur.

Lyme Disease and Tick Exposure in Southern California

Eva challenges the misconception that Lyme disease and other tick-borne illnesses are exclusively East Coast problems.

She explains that California has its own tick populations and documented tick-borne disease risks.

People who spend time outdoors, travel to other regions, or interact with pets may encounter ticks.

Eva believes a lack of awareness can contribute to missed opportunities for prevention and appropriate medical evaluation.

Her organization aims to educate Southern California communities without creating unnecessary fear.

The message is not that every tick carries Lyme disease.

It is that people should understand their local risks and know how to protect themselves.

The San Diego Launch Event: Bringing the Community Together

Eva describes LymeLnk's launch event in San Diego's Little Italy neighborhood.

Approximately 150 people attended.

The event combined social connection with education and featured food options designed to accommodate different dietary needs.

Eva shared her personal Lyme disease journey and explained the mission behind LymeLnk.

The event also featured a discussion with:

Dr. Liz Horn, principal investigator of the Lyme Disease Biobank, and Dr. Sharon Wampler of the San Diego Lyme Alliance.

Together, they addressed misconceptions about tick-borne disease in California.

Eva describes the event as an opportunity to connect patients, advocates, researchers, and community members in a welcoming environment.

A Tick Encounter at a La Jolla Coffee Shop

Eva shares a memorable story from the days leading up to LymeLnk's launch.

While working at a coffee shop in La Jolla, she overheard someone discussing a tick found on her body.

The woman explained that she had begun finding ticks regularly after walking her German Shepherd.

She mentioned areas around San Diego, including Nautilus Street and Kate Sessions Park.

Having lived in the area for many years, the woman was surprised by what she perceived as an increase in tick encounters.

Eva introduced herself and explained her work with LymeLnk.

The conversation became an unexpected opportunity for public education.

Eva describes the encounter as a perfect example of why her organization exists.

People may encounter ticks in places they do not associate with Lyme disease.

A simple conversation can help someone recognize a risk and learn how to respond.

Climate Change, Habitat Changes, and Tick Populations

Eva and Rich discuss environmental factors that may influence tick distribution.

Eva raises concerns about climate change, habitat fragmentation, and changing conditions that affect tick survival and activity.

Scientific research has identified relationships between climate, habitat, wildlife populations, and the distribution of certain tick species.

However, local changes in tick encounters can have multiple causes, and an individual observation cannot establish why a particular area has more ticks.

Eva believes environmental education and Lyme disease awareness should increasingly work together.

Her approach encourages communities to understand how human activity and ecological conditions influence public health.

Measuring Whether Lyme Disease Education Works

Eva explains that LymeLnk wants to measure the effectiveness of its educational programs rather than simply count event attendance.

Following the San Diego launch, the organization surveyed participants.

Eva reports a 76% increase in an education-related measure among attendees.

The interview does not specify the survey methodology or how that percentage was calculated.

Nevertheless, Eva sees the early feedback as encouraging.

She believes that gathering information before and after educational programs can help identify which approaches are most effective.

This emphasis on measurement reflects her background in strategic design.

Bringing Tick Prevention Education Into Schools

One of LymeLnk's first proposed initiatives involves partnering with an organization that provides after-school STEM programming to children in San Diego.

Eva explains that the project was still in development at the time of the interview.

The goal is to incorporate tick-borne disease education into existing science and outdoor learning programs.

Potential topics include:

• Tick biology and ecology
• Wildlife and tick habitats
• Outdoor safety
• Tick checks and prevention
• Understanding how infectious diseases spread
• Recognizing when to seek help after a tick bite

Eva believes teaching children about ticks through familiar science concepts can make prevention education engaging and practical.

Rather than creating an entirely new curriculum, LymeLnk hopes to collaborate with established organizations and adapt existing educational resources.

Scaling Lyme Disease Education One Community at a Time

Eva explains that LymeLnk intends to begin with smaller educational programs and gradually expand.

The initial focus is San Diego.

The organization hopes to develop programs with local partners, evaluate the results, and refine its approach.

If the early programs are successful, Eva envisions expanding to additional schools, outdoor organizations, and community groups.

She mentions potential opportunities to engage outdoor enthusiasts and organizations such as the Sierra Club and REI communities.

Her long-term goal is to increase Lyme disease literacy throughout San Diego County and eventually adapt the model for other regions.

Why Collaboration Is Essential

Eva emphasizes that LymeLnk does not want to reinvent educational resources that other organizations have already developed.

Instead, she hopes to collaborate with researchers, advocacy groups, and community organizations.

These partners may provide existing educational materials, scientific expertise, and local knowledge.

LymeLnk can then help adapt that information for audiences who may otherwise never encounter it.

This approach recognizes that effective advocacy requires different organizations to contribute their unique strengths.

For more conversations with researchers, advocates, and community leaders, explore the Tick Boot Camp Podcast.

Key Takeaways

• Eva Scarano was diagnosed with Lyme disease in 2016. Her symptoms included a bull's-eye rash and flu-like illness while attending college in Michigan.
• Her health challenges continued after initial improvement. Eva describes renewed symptoms beginning in 2019 and a particularly difficult period in 2023.
• Graduate school became a turning point. She applied strategic design principles to the challenges facing the Lyme disease community.
• LymeLnk grew from community research. Eva and her collaborators interviewed more than 100 people to understand unmet educational needs.
• Public awareness is the organization's primary focus. LymeLnk aims to help people understand prevention, early detection, diagnosis, and treatment basics.
• Patient compassion is central to the mission. Eva believes greater public understanding can reduce stigma and isolation.
• Storytelling is a powerful educational tool. Personal experiences can help make Lyme disease information more relatable.
• San Diego became the organization's launch location. Approximately 150 people attended the inaugural event.
• Community partnerships will drive future programs. LymeLnk hopes to develop educational campaigns collaboratively with schools and other organizations.
• The long-term goal is scalable Lyme disease literacy. Eva envisions expanding successful educational models from one community to another.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Eva Scarano, founder of LymeLnk, discussing her personal Lyme disease journey and her mission to transform public understanding of tick-borne illness.

Rich and Eva explore the power of storytelling, patient compassion, community-centered design, Lyme disease education in California, and the importance of reaching people before they become patients.

The conversation highlights how lived experience, creativity, and collaboration can help strengthen Lyme disease advocacy.

Discover additional conversations with patient advocates, researchers, and healthcare professionals through Tick Boot Camp's LIVE from ILADS podcast series.

Could some people diagnosed with long COVID also be dealing with Lyme disease, Bartonella, Babesia, or other infections that have gone undetected?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Ben Sinclair, founder of Dr. Finlay's Private Practice in the United Kingdom, to explore the complex relationship between long COVID, Lyme disease, tick-borne infections, immune health, and chronic illness.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation examines how Dr. Sinclair's own debilitating illness following COVID-19 transformed his medical career and led him to investigate Lyme disease and associated infections.

After becoming severely ill with COVID-19 while working as a medical director within the UK's National Health Service (NHS), Dr. Sinclair spent approximately three months largely confined to bed. His symptoms included profound fatigue, neurological difficulties, and a remarkable period during which he struggled to speak English but could communicate in German.

Initially believing he was experiencing long COVID, he later pursued testing for Lyme disease, Bartonella, and other infections.

His personal experience inspired a broader clinical focus on patients with persistent fatigue, neurological symptoms, and complex post-infectious illnesses.

Rich and Dr. Sinclair discuss the three Bs—Borrelia, Bartonella, and Babesia—along with tick exposure in the UK, climate change, deer populations, neurological symptoms, nervous system regulation, nutrition, and the challenges of accessing Lyme disease care through the NHS.

Throughout the conversation, Dr. Sinclair emphasizes the importance of looking at the whole patient rather than focusing exclusively on a single diagnosis.

Meet Dr. Ben Sinclair: Founder of Dr. Finlay's Private Practice

Dr. Ben Sinclair is a UK physician and founder of Dr. Finlay's Private Practice, a multidisciplinary private healthcare practice serving patients with complex chronic illnesses, including long COVID and suspected tick-borne infections.

The practice operates primarily from London, near Oxford Street, with additional clinical services in Birmingham and other parts of the United Kingdom.

Dr. Sinclair previously worked within the NHS, including serving as a regional medical director overseeing healthcare services across approximately 14 prisons.

Alongside his NHS responsibilities, he developed an interest in preventive medicine, nutrition, health optimization, and integrative approaches to chronic illness.

His practice now brings together healthcare professionals from several disciplines, including:

• Physicians with interests in functional and integrative medicine
• Clinicians experienced in evaluating Lyme disease
• Psychologists
• Nutritionists
• Breathing specialists
• Physiotherapy and rehabilitation professionals

Dr. Sinclair explains that the practice offers in-person and virtual consultations, including support for patients who are housebound or bedbound.

When a Doctor Becomes the Patient: Dr. Sinclair's Long COVID Journey

Dr. Sinclair's interest in complex post-infectious illness became deeply personal after he contracted COVID-19.

Before becoming ill, he describes himself as physically fit and health-conscious.

He grew up on an organic farm, spent time in the military, and maintained an active lifestyle.

Despite this background, his COVID-19 illness was followed by debilitating symptoms.

He recalls spending approximately three months largely confined to bed.

His symptoms included severe fatigue, cognitive difficulties, and problems with speech.

One particularly unusual experience involved temporarily struggling to speak English.

Although English is his native language, he found that he could communicate more easily in German, a language he had previously learned.

His wife spoke German, allowing them to communicate during this period.

Dr. Sinclair believes neurological inflammation may have contributed to these symptoms, although the interview does not establish the underlying neurological mechanism.

His experience gave him a new understanding of what patients face when everyday activities become overwhelming.

From Long COVID to a Lyme Disease Diagnosis

Initially, Dr. Sinclair believed his symptoms were related to long COVID.

As he began seeing patients with similar complaints, however, he noticed that some were not improving with the approaches his practice commonly used.

Many reported persistent fatigue, neurological symptoms, and difficulty returning to their previous level of functioning.

Dr. Sinclair began asking more detailed questions about potential tick exposure.

To his surprise, some patients recalled previous tick bites or activities that placed them at increased risk of exposure.

He also reconsidered his own history.

Dr. Sinclair describes spending time outdoors during military service, traveling extensively, and experiencing tick bites during childhood, including one in a Canadian forest when he was approximately eight years old.

He subsequently pursued testing for Lyme disease and other infections.

After attending an ILADS conference in Europe, he reports receiving a Lyme disease diagnosis.

He also describes laboratory findings involving Bartonella and Epstein-Barr virus.

Dr. Sinclair believes these findings helped him better understand his illness and influenced his clinical approach.

However, the presence of antibodies or other laboratory markers does not necessarily establish active infection or prove that an infection caused long COVID symptoms.

Research continues to investigate how SARS-CoV-2 infection, immune responses, and other infectious conditions may contribute to prolonged illness.

Can COVID-19 Trigger or Reactivate Other Infections?

One of the central questions in the interview is whether COVID-19 can influence previously acquired infections.

Dr. Sinclair discusses the possibility that immune changes following COVID-19 may contribute to the reactivation of certain pathogens or the emergence of symptoms associated with other illnesses.

He specifically raises questions about:

• Lyme disease and Borrelia
• Bartonella
• Babesia
• Epstein-Barr virus (EBV)
• Other possible contributors to post-infectious illness

Some research has identified associations between long COVID and evidence of Epstein-Barr virus reactivation or altered immune responses.

However, the hypothesis that COVID-19 routinely reactivates persistent Borrelia, Bartonella, or Babesia infections remains unproven.

Dr. Sinclair describes these possibilities as part of his evolving clinical perspective.

The conversation highlights the importance of investigating other potential diagnoses when patients experience persistent symptoms rather than automatically attributing every symptom to long COVID.

The Three Bs: Borrelia, Bartonella, and Babesia

Rich and Dr. Sinclair discuss three pathogen groups frequently mentioned in the Lyme disease community.

Borrelia: The Bacteria Associated With Lyme Disease

Borrelia burgdorferi and related bacteria cause Lyme disease.

Infections can produce symptoms involving the skin, joints, nervous system, and cardiovascular system.

Bartonella: A Group of Bacterial Infections

Bartonella species can cause several different human diseases.

Dr. Sinclair discusses Bartonella in relation to neurological symptoms and complex chronic illness.

He also raises questions about possible exposure through fleas, lice, and other arthropods.

Transmission pathways vary by Bartonella species, and some proposed routes remain uncertain.

Babesia: A Tick-Borne Parasite

Babesia parasites infect red blood cells and can cause babesiosis.

Symptoms may include fever, chills, fatigue, sweating, and anemia.

Severe disease can occur, particularly in people with certain underlying health conditions.

Dr. Sinclair explains that he has become increasingly interested in identifying possible Babesia infections among patients with overlapping symptoms.

Rich observes that more Tick Boot Camp guests have discussed diagnoses involving multiple pathogens in recent years.

They consider whether this reflects greater awareness, changes in testing, increased exposure, or other factors.

Importantly, not every Lyme disease patient has Bartonella or Babesia, and overlapping symptoms do not establish the presence of multiple infections.

Why Tick-Borne Diseases May Be Increasing in the UK

Dr. Sinclair discusses several environmental factors he believes may contribute to changing patterns of tick exposure in the United Kingdom.

These include:

• Climate change and milder winters
• Changes in seasonal tick activity
• Expanding or changing deer populations
• Migratory birds transporting ticks
• Greater awareness and reporting of tick-borne diseases
• Changes in land use and human exposure to tick habitats

He notes that his practice sees patients from areas associated with forests, deer populations, and known tick habitats.

He also discusses the New Forest and Bournemouth area, where tick exposure is an established concern.

Dr. Sinclair believes that environmental changes deserve more attention in public health planning.

While climate and wildlife ecology can influence tick distribution, the specific contribution of each factor varies by location and requires careful research.

Deer, Sheep, Migratory Birds, and Tick Exposure

Rich asks Dr. Sinclair about the relationship between wildlife populations and tick-borne diseases.

Dr. Sinclair describes observations from areas of England where deer populations have increased.

He recalls growing up near Knole Park, a historic deer park, and describes changes in the surrounding environment following a major storm in 1987.

He believes changes in deer movement and habitat may have influenced local tick exposure.

The conversation also turns to sheep farming and Babesia.

Dr. Sinclair notes that parts of southwestern England, including Cornwall, Devon, and Somerset, have substantial sheep populations.

He discusses possible ecological relationships involving livestock, ticks, and Babesia species.

These relationships are complex.

Different Babesia species have different animal reservoirs and transmission cycles, and the presence of deer or sheep does not automatically establish the source of human infection.

The discussion underscores the importance of understanding local ecology when investigating tick-borne disease risks.

Why Tick Prevention Matters Beyond the Woods

Dr. Sinclair and Rich emphasize that tick exposure is not limited to remote forests or wilderness areas.

People can encounter ticks while gardening, walking in parks, visiting rural properties, or spending time in areas frequented by wildlife.

Changing tick habitats make prevention education increasingly important.

Practical precautions include checking for ticks after outdoor activities, using appropriate repellents, wearing protective clothing, and removing attached ticks promptly.

For step-by-step prevention and tick bite guidance, explore Tick Boot Camp's Tick Bite Blueprint.

A Multidisciplinary Approach to Complex Chronic Illness

Dr. Sinclair explains that his private practice was designed to bring different healthcare disciplines together.

He believes that patients with complex illnesses may benefit from coordinated care addressing multiple aspects of health.

His team includes physicians, psychologists, nutrition professionals, breathing specialists, and rehabilitation providers.

The practice considers:

Medical evaluation: Investigating possible infections, post-infectious conditions, and other causes of symptoms.

Nutrition: Supporting adequate dietary intake and addressing relevant nutritional concerns.

Sleep: Identifying sleep disturbances and improving sleep routines where possible.

Psychological support: Helping patients cope with medical trauma, uncertainty, and the emotional effects of prolonged illness.

Breathing and rehabilitation: Addressing breathing-pattern difficulties, autonomic symptoms, and functional limitations.

Dr. Sinclair emphasizes that patients should not be reduced to a single symptom or laboratory result.

His approach reflects a broader philosophy of individualized, multidisciplinary care.

Medical Trauma, Stress, and the Nervous System

Rich and Dr. Sinclair discuss the psychological burden of living with an illness that is difficult to diagnose or treat.

Dr. Sinclair explains that his practice includes psychologists because patients may experience significant emotional distress after prolonged illness, repeated medical appointments, and feeling dismissed by healthcare professionals.

He also discusses how chronic stress, poor sleep, and autonomic nervous system disturbances can influence overall well-being.

The conversation recognizes that psychological support may be valuable even when a patient's primary illness is physical.

Medical trauma and emotional distress do not mean symptoms are imaginary or that patients are responsible for their illness.

Supporting mental health can be an important part of comprehensive care without replacing appropriate medical evaluation or treatment.

For a related conversation, listen to Tick Boot Camp's interview with Cathleen King about Primal Trust and nervous system regulation.

Breathwork, Dysautonomia, and Long COVID Recovery

Dr. Sinclair describes becoming interested in breathwork during his own recovery.

While largely confined to bed, he listened to podcasts discussing breathing techniques, including approaches associated with Wim Hof.

He subsequently incorporated breathing support into his practice.

His team works with patients experiencing breathing-pattern difficulties and certain autonomic symptoms.

He mentions approaches such as:

• Box breathing
• Slow, paced breathing
• Concordant breathing
• Individualized breathing exercises

Dr. Sinclair emphasizes that more intense methods, including Wim Hof-style breathing, are not appropriate for everyone.

This distinction is particularly important for people experiencing dysautonomia, post-exertional symptom exacerbation, dizziness, or other complex symptoms.

Breathing exercises may help some patients manage stress or breathing-pattern difficulties, but they are not established cures for Lyme disease or long COVID.

Patients should seek individualized guidance and avoid techniques that provoke significant symptoms.

Nutrition, Sleep, and Immune Health

Dr. Sinclair describes several lifestyle strategies he incorporated during his own recovery.

These included paying closer attention to nutrition, sleep, stress management, and daily routines.

He discusses:

• A diet emphasizing fiber and nutrient-rich foods
• Adequate sleep and consistent sleep patterns
• Natural daylight exposure to support circadian rhythms
• Meditation and relaxation
• Appropriate physical activity within individual limitations
• Breathwork and stress management

He also mentions experimenting with cold-water immersion.

However, cold-water immersion can pose risks, especially for people with cardiovascular problems or autonomic dysfunction, and it is not an established treatment for Lyme disease or long COVID.

Dr. Sinclair believes that supporting general health can complement medical treatment.

Lifestyle measures may contribute to overall well-being, but they should not be presented as substitutes for evidence-based treatment of active infections or other diagnosed conditions.

Treating Housebound and Bedbound Patients

One of the challenges Dr. Sinclair's practice addresses is access to care for people who cannot easily travel.

He explains that some patients are housebound or bedbound because of severe fatigue, neurological symptoms, or other functional limitations.

His team offers virtual consultations and, where available, home visits.

They may also work with family members and caregivers to coordinate care.

Dr. Sinclair says the practice serves patients throughout the UK and internationally, subject to professional and insurance restrictions.

At the time of the interview, he explains that the practice could not provide services to patients in the United States or Canada because of insurance limitations.

Children, Long COVID, and Complex Illness

Dr. Sinclair also discusses the growing number of children seen by his practice.

He explains that parents receiving care sometimes sought help for children experiencing persistent symptoms after COVID-19.

Drawing on his background in family medicine, he expanded the practice's work with pediatric patients.

He describes an interest in understanding whether some children with prolonged symptoms may have other medical conditions requiring investigation.

The conversation includes his clinical observations about possible infections such as Bartonella.

However, his estimates regarding the proportion of long COVID patients with co-infections are preliminary impressions from his practice, not established population-level findings.

Pediatric patients with persistent symptoms require careful, individualized assessment, and proposed infectious explanations should be evaluated using appropriate clinical evidence.

Lyme Disease Recognition and Treatment in the United Kingdom

Rich asks Dr. Sinclair whether Lyme disease awareness and medical support in the UK are improving.

Dr. Sinclair acknowledges growing recognition of tick-borne disease risks.

He also expresses concern that UK clinical guidance and healthcare systems have not evolved as quickly as he would like.

He discusses challenges involving:

• Access to specialized diagnostic testing
• Limited awareness of complex presentations
• Differences in clinical perspectives
• Financial constraints within the NHS
• The pace of research and guideline development
• Professional scrutiny surrounding controversial treatment approaches

Dr. Sinclair believes international conferences such as ILADS provide opportunities for clinicians to exchange research findings and learn from colleagues.

His comments reflect his personal assessment of the UK healthcare environment.

Established clinical guidance, emerging research, and contested treatment approaches should be distinguished when evaluating care options.

Why Dr. Sinclair Attends ILADS

Dr. Sinclair explains that ILADS provides an opportunity to connect with physicians and researchers from around the world.

He attends to learn about developments in testing, treatment, and scientific understanding of Lyme disease and associated conditions.

He values discussions with clinicians who work with patients experiencing complex symptoms.

The conference also allows him to compare his clinical experiences with those of practitioners in other countries.

Dr. Sinclair believes this international collaboration is especially valuable as research into post-infectious illness continues to evolve.

How to Work With Dr. Ben Sinclair

Dr. Sinclair is the founder of Dr. Finlay's Private Practice.

The practice provides private medical consultations focused on complex chronic illness, preventive medicine, and multidisciplinary care.

Services discussed in the interview include:

• In-person consultations in the United Kingdom
• Virtual medical consultations where permitted
• Evaluation of persistent symptoms and possible tick-borne infections
• Nutrition and lifestyle support
• Psychological support
• Breathing and rehabilitation services
• Coordination with patients' existing healthcare professionals

Dr. Sinclair explains that the practice operates on a self-pay basis and is not covered by insurance.

He emphasizes that his team cannot promise a cure but aims to provide individualized care and support.

Visit Dr. Finlay's Private Practice to learn more about services, locations, and appointment availability.

Key Takeaways

• Dr. Sinclair's own illness changed his medical career. After COVID-19, he experienced severe fatigue and neurological symptoms that left him largely bedbound for three months.
• Long COVID and other illnesses can have overlapping symptoms. A thorough evaluation may be necessary when patients experience persistent or unexplained problems.
• He later received a Lyme disease diagnosis. His personal experience influenced his interest in tick-borne and vector-borne infections.
• The three Bs are an important discussion topic. Borrelia, Bartonella, and Babesia can cause different illnesses with some overlapping symptoms.
• COVID-related immune changes remain an active research area. Proposed relationships between long COVID and persistent tick-borne infections require further investigation.
• Environmental changes may affect tick exposure. Climate, wildlife, habitat, and human activity can influence tick distribution.
• Medical trauma deserves recognition. Psychological support can help patients cope with the emotional burden of chronic illness.
• Multidisciplinary care may provide broader support. Dr. Sinclair's practice combines medical evaluation with nutrition, psychology, breathing support, and rehabilitation.
• Patients with severe limitations need accessible care. Virtual appointments and home visits may help those unable to travel.
• Hope and scientific curiosity can coexist. Dr. Sinclair encourages continued investigation while acknowledging that no treatment can guarantee recovery.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Ben Sinclair, founder of Dr. Finlay's Private Practice in the United Kingdom.

Rich and Dr. Sinclair discuss his experience with long COVID, his subsequent Lyme disease diagnosis, possible co-infections, tick-borne disease awareness in the UK, and his multidisciplinary approach to complex chronic illness.

The interview also explores the role of nutrition, sleep, nervous system support, and coordinated healthcare in helping patients manage persistent symptoms.

Discover additional conversations with international physicians, researchers, and patient advocates through Tick Boot Camp's LIVE from ILADS podcast series.

What if one blood test could detect Lyme disease, Bartonella, and Babesia at the same time—without relying on the body's antibody response?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Jennifer Miller, PhD, of Galaxy Diagnostics to discuss a new generation of direct detection tests designed to help doctors identify Lyme disease and other difficult-to-detect vector-borne infections.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why conventional Lyme disease testing can miss infections, how Borrelia may interfere with antibody development, and how digital PCR technology can search for Borrelia, Bartonella, and Babesia DNA in a single blood sample.

Dr. Miller explains how Galaxy Diagnostics developed a digital PCR assay that divides a blood sample into approximately 26,000 individual reactions, increasing the analytical ability to detect small amounts of pathogen DNA.

She also announces that the assay became commercially available in March 2025 and explains how patients can work with their healthcare providers to access testing.

For patients who have experienced years of diagnostic uncertainty, this conversation offers an encouraging look at emerging technologies that could help improve the diagnosis of Lyme disease and associated infections.

Meet Dr. Jennifer Miller, PhD

Dr. Jennifer Miller, PhD is Vice President of Clinical and Scientific Operations at Galaxy Diagnostics, a laboratory specializing in diagnostic testing for difficult-to-detect vector-borne infections.

Her work focuses on developing and validating diagnostic technologies for pathogens such as Borrelia, Bartonella, and Babesia.

Dr. Miller has extensive experience researching vector-borne pathogens and translating laboratory discoveries into clinical diagnostic tools.

During the interview, Rich mentions a previous conversation with Galaxy Diagnostics CEO Nicole Bell, who helped introduce him to the company's work.

Dr. Miller discusses returning to Galaxy Diagnostics and working with its scientific team to develop more sensitive direct detection methods.

Their shared goal is to provide clinicians with better diagnostic tools while helping patients avoid unnecessary delays, repeated testing, and prolonged uncertainty.

Why Lyme Disease Testing Can Miss Infections

Rich begins by addressing one of the most frustrating challenges facing the Lyme disease community: patients can experience significant symptoms while repeatedly receiving negative laboratory results.

He asks Dr. Miller to explain why Lyme disease testing remains difficult and what researchers are doing to improve it.

Dr. Miller begins by describing two fundamentally different approaches to infectious disease testing.

Indirect testing looks for the body's immune response to a pathogen.

Direct testing searches for material associated with the pathogen itself, such as its proteins or genetic material.

Understanding the difference is important because these tests answer different questions.

Indirect Lyme Disease Testing: Looking for Antibodies

Most commonly used Lyme disease blood tests are indirect tests.

They look for antibodies produced by the immune system after exposure to Borrelia, the bacteria responsible for Lyme disease.

Dr. Miller uses a simple analogy to explain the limitations of antibody testing.

An antibody is like a sign left behind by someone who visited a location.

The sign says:

“I was here.”

But it doesn't tell you whether that visitor is still present or whether they left months or years earlier.

Similarly, Lyme disease antibodies may remain detectable after an infection has been treated.

A positive antibody test therefore does not necessarily establish that a person currently has an active infection.

Conversely, someone with a recent infection may not yet have produced enough detectable antibodies for a test to become positive.

This creates a diagnostic window during which early Lyme disease can be missed.

For more information about testing limitations, explore Tick Boot Camp's Lyme disease testing resources.

Sensitivity, Specificity, and Cross-Reactivity

Dr. Miller explains that diagnostic tests are evaluated using two important measurements.

Sensitivity describes how effectively a test identifies people who have a particular condition.

A test with inadequate sensitivity may produce false-negative results.

Specificity describes how effectively a test identifies people who do not have that condition.

A test with inadequate specificity may produce false-positive results.

She also discusses cross-reactivity, which occurs when an antibody recognizes a target that resembles something other than the intended pathogen.

Dr. Miller compares antibody testing patterns to a barcode.

Different parts of the barcode represent responses to different proteins.

However, some proteins may be shared across related organisms or resemble proteins from other infectious agents.

This can complicate test interpretation.

She emphasizes that both the biological behavior of Borrelia and the design of the assay influence how well a test performs.

IgM vs. IgG: Understanding the Immune Response

Rich asks Dr. Miller to explain why different antibody classes matter when diagnosing Lyme disease.

IgM Antibodies

IgM antibodies are commonly associated with the early immune response.

Dr. Miller describes IgM as a broad responder that can recognize certain targets before the immune system develops a more refined response.

This broad recognition can be useful during early infection but can also contribute to cross-reactivity.

IgG Antibodies

IgG antibodies commonly develop as the immune response matures.

Through biological processes known as affinity maturation and class switching, the immune system can produce antibodies that recognize specific targets more effectively.

Dr. Miller explains that the timing and quality of these responses can affect the performance of antibody-based diagnostic tests.

However, neither IgM nor IgG results alone can reliably determine whether Borrelia remains actively present after treatment.

How Borrelia May Interfere With Antibody Development

One of the most scientifically interesting parts of the conversation explores how Borrelia may influence the immune system.

Dr. Miller discusses research suggesting that Borrelia infection can disrupt processes involving B cells, the immune cells responsible for producing antibodies.

She explains that an effective antibody response involves several steps.

First, the immune system recognizes a pathogen.

Next, B cells begin producing antibodies.

Over time, the immune response can become more refined, generating antibodies that bind more effectively to their targets.

Dr. Miller describes how Borrelia may interfere with these processes.

She uses an analogy involving rooms and doors.

Imagine that a B cell needs access to different rooms to develop and improve its antibodies.

In her analogy, Borrelia interferes with access to those rooms, disrupting the processes needed for antibody maturation.

This may help explain why some immune responses to Borrelia develop differently than expected.

Dr. Miller also discusses how these effects could influence the transition from IgM to IgG antibodies.

These mechanisms remain an active area of scientific investigation, and experimental findings do not mean that every patient with Lyme disease experiences the same immune dysfunction.

Direct Detection: Looking for the Pathogen Itself

Rich then asks Dr. Miller to explain the alternative to antibody-based testing.

Rather than measuring the immune response, direct detection methods look for evidence of the pathogen.

Dr. Miller describes two approaches being developed or offered by Galaxy Diagnostics.

Urine Antigen Testing

An antigen is a molecule associated with a pathogen, often a protein.

Dr. Miller explains that Galaxy has developed testing designed to detect certain Borrelia antigens shed into urine.

The goal is to identify pathogen-associated material without relying on antibody production.

PCR Testing

Polymerase chain reaction, or PCR, detects specific sequences of genetic material.

For Lyme disease, PCR testing attempts to identify Borrelia DNA.

However, Borrelia can be difficult to detect in blood because the organism may circulate at very low concentrations.

Dr. Miller explains that Galaxy's newer approach uses digital PCR, a technology designed to improve the detection of small amounts of genetic material.

Direct detection has important limitations as well. A negative result does not necessarily exclude infection, and detecting DNA does not automatically establish that live organisms are present.

Digital PCR: Finding the Needle in 26,000 Haystacks

One of the interview's most memorable explanations involves searching for a needle in a haystack.

Rich recalls how Nicole Bell described Galaxy's digital PCR technology.

Traditional PCR can be compared to searching for a tiny needle in a large pile of hay.

Digital PCR divides the sample into thousands of smaller sections, making it easier to identify a target when very little genetic material is present.

Dr. Miller explains that Galaxy's assay partitions a sample into approximately 26,000 individual reactions.

Each partition is analyzed for the presence or absence of specific pathogen DNA.

Rather than analyzing everything in one reaction, the technology evaluates thousands of smaller reactions.

This can improve analytical sensitivity under appropriate conditions.

However, the technology cannot detect pathogen DNA that is absent from the collected sample or present below the assay's detection threshold.

One Blood Test for Borrelia, Bartonella, and Babesia

The biggest announcement in the interview concerns Galaxy's ability to investigate three major pathogen groups using one blood sample.

Borrelia: Lyme Disease and Relapsing Fever

Borrelia includes bacteria responsible for Lyme disease and certain forms of relapsing fever.

Dr. Miller explains that Galaxy's assay is designed to recognize genetic sequences shared across different Borrelia organisms.

This includes targets associated with Lyme disease Borrelia and relapsing fever Borrelia.

Bartonella: A Difficult-to-Detect Bacterial Infection

Bartonella is a group of bacteria associated with several human illnesses.

Different Bartonella species can cause different clinical manifestations, including cat-scratch disease and certain bloodstream infections.

Dr. Miller discusses how genus-level genetic targets may help identify members of the Bartonella group without requiring a completely separate assay for every species.

Babesia: A Tick-Borne Parasite

Babesia is a group of parasites that infect red blood cells.

Babesiosis can cause fever, chills, fatigue, anemia, and potentially serious complications, particularly in vulnerable patients.

Dr. Miller explains that Galaxy's assay can investigate Babesia genetic material alongside Borrelia and Bartonella.

The ability to test for all three pathogen groups in one sample may provide additional information when clinicians suspect overlapping infections.

It does not mean every person with Lyme disease has all three infections or that every patient requires testing for all three.

What Is Genus-Level Detection?

Rich asks Dr. Miller whether Galaxy's assay can detect different species and strains within each pathogen group.

Dr. Miller explains that the test uses genetic targets shared by members of a particular genus.

She compares this to recognizing a family rather than identifying each individual cousin.

For example, different Bartonella species may share genetic sequences that allow them to be recognized as belonging to the same broader group.

By targeting those shared sequences, an assay can potentially detect multiple related organisms.

This approach may broaden detection while reducing the need for separate targets for every species.

However, genus-level detection does not necessarily identify the exact species or strain responsible for an infection.

Actual coverage depends on the assay's design and validation.

Why Testing for Multiple Infections Matters

Rich discusses how Tick Boot Camp interviews have increasingly featured patients reporting diagnoses involving multiple tick-borne or vector-borne infections.

He explains that earlier conversations often focused primarily on Borrelia.

More recently, patients have frequently discussed Bartonella and Babesia alongside Lyme disease.

Dr. Miller agrees that clinicians sometimes need to investigate more than one possible infection because symptoms can overlap.

For example, fatigue, headaches, and other nonspecific symptoms may occur with several different illnesses.

Testing for multiple pathogens may help clinicians narrow their differential diagnosis when a patient's history supports that evaluation.

She also emphasizes the financial consequences of repeatedly visiting providers and undergoing separate tests.

Better diagnostic tools could potentially help streamline this process.

However, the prevalence of co-infections varies by geographic region, exposure history, and pathogen. The experiences of podcast guests should not be interpreted as evidence that most Lyme disease patients have all three infections.

Can Direct Testing Distinguish a Past Infection From a New Infection?

Rich shares his history of numerous tick bites over several decades.

He explains that one of his concerns about antibody testing is its inability to reliably determine when an infection occurred.

Dr. Miller agrees that prior infections can complicate interpretation because antibodies may persist long after the original exposure.

She discusses how direct detection may provide different information by searching for pathogen-associated genetic material rather than antibodies.

This could be especially useful when evaluating someone with a history of previous tick-borne infections and new symptoms.

However, a positive PCR result does not always distinguish live infection from residual DNA, and a negative result cannot exclude every active infection.

Clinical history, examination findings, and other testing remain important.

Galaxy's Digital PCR Test Became Available in March 2025

Rich asks when patients will be able to access the new technology.

Dr. Miller shares that Galaxy's digital PCR assay had already completed laboratory validation and became commercially available in March 2025.

She explains that the laboratory operates under clinical laboratory quality requirements and that the scientific team had worked extensively to validate the assay.

She expresses excitement about making the technology available to healthcare professionals investigating difficult-to-detect infections.

Commercial availability and laboratory validation are important milestones, but they do not establish that the assay can detect every infection or that it outperforms all other diagnostic methods in every clinical situation.

Independent clinical performance data remain important when evaluating new testing technologies.

Can Patients Order Galaxy's Digital PCR Test Directly?

Rich asks a practical question that many listeners will have.

Can patients order the test themselves, or does a healthcare professional need to request it?

Dr. Miller explains that, at the time of the interview, the test required an order from a practitioner.

Galaxy Diagnostics provides educational resources that patients can share with their healthcare professionals.

These include information about available tests, scientific literature, frequently asked questions, and provider ordering procedures.

Patients interested in learning more can visit Galaxy Diagnostics.

Current test availability, ordering requirements, and pricing should be confirmed directly with the laboratory.

Could Better Lyme Disease Testing Reduce Healthcare Costs?

Dr. Miller discusses the financial and emotional burden of diagnostic uncertainty.

Patients may spend years visiting multiple healthcare professionals, undergoing repeated tests, and searching for explanations.

Each additional appointment can create expenses, delays, and frustration.

She hopes that improved direct detection technologies will help clinicians make more informed decisions sooner.

Rich emphasizes the importance of making diagnostic testing more accessible and efficient for patients.

The conversation reflects a shared goal: reducing the time people spend searching for answers and helping them access appropriate care.

Whether any specific new test reduces costs or improves long-term patient outcomes requires further study.

The Future of Lyme Disease Diagnostics

Dr. Miller describes Galaxy's work as part of an effort to develop the next generation of direct detection tools.

She believes technologies such as digital PCR may help address limitations associated with antibody-based testing.

The conversation also highlights the importance of scientific collaboration, continued validation, and patient-centered research.

Rich expresses hope that accurate and affordable testing will eventually become more accessible to people living in regions where tick-borne diseases are common.

For patients who have experienced diagnostic uncertainty, the development of new testing approaches offers reasons for cautious optimism.

Key Takeaways

• Conventional Lyme disease testing has limitations. Antibody tests may miss early infections and cannot reliably distinguish past exposure from current infection.
• Direct and indirect tests answer different questions. Indirect tests measure immune responses, while direct tests search for pathogen-associated material.
• Borrelia may affect antibody development. Dr. Miller discusses research into how infection can interfere with B-cell function and antibody maturation.
• Digital PCR uses thousands of reactions. Galaxy's technology partitions a sample into approximately 26,000 individual reactions.
• One sample can be tested for three pathogen groups. The assay targets Borrelia, Bartonella, and Babesia.
• Genus-level detection may identify multiple related species. The approach targets shared genetic sequences rather than every strain individually.
• Relapsing fever Borrelia is also part of the discussion. Galaxy designed its assay to investigate a broader range of Borrelia organisms.
• The assay became commercially available in March 2025. Dr. Miller describes the laboratory's validation and launch.
• Practitioner ordering was required at the time of recording. Patients can review Galaxy's resources with their healthcare providers.
• Better diagnostics could reduce uncertainty. Continued research is needed to determine how emerging tests affect patient care and outcomes.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Jennifer Miller, PhD, of Galaxy Diagnostics, discussing advances in Lyme disease and vector-borne infection testing.

Rich and Dr. Miller explore the limitations of antibody testing, the science of immune responses, urine antigen testing, digital PCR, and the ability to investigate Borrelia, Bartonella, and Babesia in a single blood sample.

Discover additional interviews with scientists, physicians, and diagnostic innovators through Tick Boot Camp's LIVE from ILADS podcast series.

After seeing approximately 22 medical practitioners, undergoing more than a dozen procedures, and facing a possible ALS diagnosis, Darlene DeBauer O'Connor finally received a Lyme disease diagnosis that changed her life. Today, she's helping other families overcome one of the biggest barriers to healing: the cost of care.

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Darlene DeBauer O'Connor, Executive Director of the Northeast Lyme and Associated Diseases (NELAD) Resource Foundation, to discuss her family's experience with Lyme disease, the devastating consequences of delayed diagnosis, and a new nonprofit providing financial assistance for testing and treatment.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores Lyme disease misdiagnosis, ALS-like symptoms, neurological complications, family-wide tick-borne illness, treatment costs, patient advocacy, and financial grants of up to $3,000 per person annually.

Darlene shares how her diagnosis on October 16, 2013, led to other family members seeking answers, why her brother's death strengthened her commitment to advocacy, and how years of educational outreach revealed a critical problem: Knowing where to find help means little when patients cannot afford to access it.

Her story is one of resilience, family, community, and turning personal suffering into practical support for others.

From Possible ALS to a Lyme Disease Diagnosis

In her 40s, Darlene was working as a public school teacher in Massachusetts when she began experiencing increasingly debilitating symptoms.

What started as fatigue and headaches progressed into a frightening combination of physical, neurological, and psychological problems.

Her symptoms included:

• Extreme fatigue and difficulty getting out of bed
• Severe headaches and recurring fevers
• Migrating pain throughout her body
• Muscle weakness, tripping, and falling
• Difficulty walking
• Bladder control problems
• Neurological and psychological symptoms

Darlene consulted approximately 22 medical practitioners across multiple specialties, including cardiology, neurology, and infectious disease.

She underwent more than a dozen procedures while searching for an explanation.

Eventually, clinicians began considering amyotrophic lateral sclerosis (ALS), a progressive neurological disease.

The possibility was devastating.

Darlene remembers becoming increasingly frightened as her condition worsened and her independence disappeared.

Ten Negative Lyme Tests Before Getting Answers

Despite living in a region where Lyme disease is common, Darlene reports receiving approximately 10 negative Lyme disease tests during her diagnostic journey.

On October 16, 2013, her sister brought her to a practitioner in Wilton, Connecticut.

After reviewing her symptoms and medical history, the practitioner diagnosed her clinically with Lyme disease and investigated possible additional infections.

Darlene describes that appointment as the turning point in her life.

She calls the anniversary her personal “D-Day,” meaning Diagnosis Day.

For the first time, she felt she had an explanation for the illness that had disrupted her life.

She began treatment and gradually experienced improvements, although she also recalls difficult reactions during the process.

Her experience highlights the importance of interpreting Lyme disease testing alongside clinical findings and exposure history.

Antibody tests can produce false-negative results, particularly early in infection. However, repeated negative results later in an illness require careful consideration of other possible diagnoses as well.

For more information, explore Tick Boot Camp's Lyme disease testing resources.

When One Diagnosis Leads an Entire Family to Seek Answers

Darlene's diagnosis had consequences far beyond her own health.

She is the youngest of five children in a close-knit Italian-American family.

After learning more about Lyme disease and associated infections, she began recognizing similarities between her experiences and symptoms reported by siblings, nieces, nephews, and other relatives.

Family conversations increasingly focused on tick exposure, unexplained symptoms, and the possibility of tick-borne illness.

Darlene describes a cascade of additional diagnoses among family members.

She explains that relatives were evaluated by different healthcare professionals rather than a single practitioner.

Over time, she reports that most affected family members experienced meaningful improvement.

The family's experiences strengthened her belief that education and early recognition are essential.

Importantly, similar symptoms within a family do not necessarily establish a shared infection. Tick exposure, other medical conditions, and individual diagnostic findings must be evaluated separately.

Losing Her Brother and the Questions Surrounding Lewy Body Dementia

One of the most emotional moments in the interview comes when Darlene discusses the death of her brother.

She believes complications associated with vector-borne illness contributed to his neurological decline and eventual diagnosis of Lewy body dementia.

She describes a period during which he appeared to improve, followed by worsening symptoms and rapid deterioration.

His death remains a profound loss for the family.

Darlene's experience raises questions about the relationship between infectious diseases, neurological inflammation, and neurodegenerative conditions.

However, a causal relationship between Lyme disease or other tick-borne infections and Lewy body dementia has not been established.

Her brother's story reflects the family's understanding of his illness and the grief that continues to motivate their advocacy.

Why Tick Prevention Education Matters

Before becoming ill, Darlene believed she understood tick prevention.

She had worked as an education coordinator for Mass Audubon and was familiar with outdoor safety.

However, she admits that her understanding of Lyme disease was limited.

She believed avoiding heavily wooded areas and removing visible ticks would provide adequate protection.

Her perspective changed dramatically after her diagnosis.

Darlene also recalls a tick bite involving her son at a Massachusetts hospital and wishing the tick had been saved for identification.

Rich and Darlene discuss the importance of recognizing that tick exposure can occur in ordinary environments, including residential yards, gardens, and recreational spaces.

They also reflect on how little Lyme disease education they received during their school years in the Northeast.

Their conversation emphasizes that prevention education should begin long before someone becomes ill.

For practical guidance on tick checks, tick removal, and what to do after a bite, visit Tick Boot Camp's Tick Bite Blueprint.

Turning Lyme Disease Into a Mission

As Darlene began recovering, she and her sister became involved with Central Mass Lyme, a Massachusetts organization focused on education and awareness.

Darlene served on its conference committee, while her sister participated on the organization's board.

Together with other advocates, they helped organize four educational conferences.

One conference attracted approximately 500 attendees.

Speakers included prominent Lyme disease clinicians and researchers such as:

• Dr. Stephen Phillips
• Dr. Daniel Cameron
• Dr. Neil Spector
• Dr. Bill Rawls

These events connected patients, caregivers, healthcare professionals, authors, and advocates.

Darlene also began speaking publicly about her family's experience.

Her presentations resonated with people who had spent years searching for answers.

But as more patients approached her after speaking engagements, she noticed a recurring problem.

People weren't simply asking what Lyme disease was.

They wanted to know how to find a knowledgeable practitioner and how to pay for testing and treatment.

The Missing Piece: Financial Assistance for Lyme Disease Patients

Darlene and her sister realized that education alone could not solve the challenges facing many families.

Even when patients identified a healthcare professional they wanted to see, financial barriers often prevented them from obtaining care.

Some practitioners had long waiting lists.

Others required out-of-pocket payments that families could not afford.

Testing, medical appointments, medications, and supportive therapies could create substantial financial strain.

Darlene and her sister decided to establish an organization that would combine education and emotional support with direct financial assistance.

That decision led to the creation of the Northeast Lyme and Associated Diseases Resource Foundation, commonly known as NELAD.

What Is the NELAD Resource Foundation?

The NELAD Resource Foundation is a nonprofit organization focused on helping people affected by Lyme disease and associated illnesses.

Its mission includes three interconnected areas:

Education and awareness: Helping patients, families, and communities better understand Lyme disease and associated conditions.

Emotional support: Connecting individuals and families through support groups and shared experiences.

Financial assistance: Providing grants to help eligible patients access testing and treatment.

Although NELAD is based in New England, particularly Massachusetts and Rhode Island, Darlene explains that its assistance is not limited to those states.

At the time of the interview, the foundation had already provided funding to recipients in 10 additional states, including Texas.

Darlene emphasizes that the organization focuses on families and does not impose an age limit on applicants.

NELAD Grants: Up to $3,000 Per Person Per Year

One of the most valuable parts of the interview is Darlene's explanation of NELAD's financial assistance program.

At the time of recording, the foundation offered grants of up to $3,000 per person, per year, subject to eligibility, available funding, and the organization's approval process.

Because the program supports individual family members, more than one person within a household may potentially qualify.

Darlene also explains that previously funded applicants may reapply in subsequent years.

The grants are intended to reduce financial barriers to Lyme disease-related testing and treatment.

Darlene describes assistance for conventional medical care as well as certain integrative services when supported by documentation from a practitioner.

The foundation evaluates applications and determines funding based on its own criteria.

Grant availability, covered services, and funding limits may change. Applicants should confirm current requirements directly with NELAD.

How to Apply for NELAD Financial Assistance

Darlene explains that the foundation deliberately designed its application process to be manageable for people dealing with significant illness.

Applicants can begin through the organization's website.

The process she describes includes:

1. Complete a preliminary application. Applicants can submit the form online or print and mail it.
2. Provide basic information. The initial form allows the foundation to review the request before collecting extensive documentation.
3. Indicate willingness to provide supporting records. These may include tax documents, disability information, or a practitioner's recommendation.
4. Wait for application review. The foundation evaluates requests and determines eligibility and available assistance.

Darlene emphasizes that patients do not need to gather every supporting document before beginning the preliminary process.

This approach is intended to make applying less overwhelming for people already managing difficult health circumstances.

Visit NELAD.org to learn about financial assistance and apply.

Donated Lyme Disease Testing and Additional Support

Darlene also announces that a specialty laboratory, identified in the transcript as IGeneX, committed to donating 10 Lyme disease tests annually to support the foundation's work.

She describes this partnership as an important opportunity to help patients who cannot afford certain diagnostic services.

The interview also discusses NELAD's willingness to consider different treatment-related expenses when supported by a healthcare practitioner's recommendation.

These may include medications and certain complementary approaches.

However, the foundation's willingness to fund a service should not be interpreted as evidence that the service is medically effective.

Patients should discuss the risks, benefits, and supporting evidence for any proposed treatment with qualified healthcare professionals.

Why Lyme Disease Advocacy Requires Collaboration

Darlene repeatedly emphasizes the importance of organizations working together.

Although NELAD developed from her experiences with Central Mass Lyme, she continues to value that relationship.

She believes the challenges facing the Lyme disease community are too significant for any one organization to address alone.

Education, patient support, research, financial assistance, and public policy advocacy all serve important purposes.

Rich agrees and invites Darlene and her sister to return for a longer Tick Boot Camp interview.

He wants listeners to learn more about the family's experiences and the resources available through NELAD.

Their conversation demonstrates how different advocacy organizations can complement one another while helping patients find the support they need.

Key Takeaways

• Lyme disease can be difficult to diagnose. Darlene saw approximately 22 practitioners and received numerous negative tests before her diagnosis.
• Severe symptoms deserve thorough evaluation. Her illness included neurological problems, weakness, difficulty walking, and symptoms that raised concerns about ALS.
• A diagnosis can affect an entire family. Darlene's experience prompted relatives to investigate their own unexplained symptoms.
• Loss can inspire advocacy. Her brother's death strengthened her commitment to helping others.
• Education is essential. Her work with Central Mass Lyme helped bring conferences and patient resources to the community.
• Financial barriers can prevent access to care. Darlene and her sister founded NELAD after recognizing that many patients could not afford testing and treatment.
• NELAD provides direct financial assistance. At the time of the interview, grants were available for up to $3,000 per person annually.
• Families are a priority. The foundation considers applicants of all ages and may assist multiple members of a household.
• Patients can apply online or by mail. NELAD designed its preliminary application to minimize the initial paperwork burden.
• Collaboration strengthens advocacy. Patient organizations can work together to expand education, financial assistance, and community support.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Darlene DeBauer O'Connor, Executive Director of the Northeast Lyme and Associated Diseases Resource Foundation.

Rich and Darlene discuss her 2013 Lyme disease diagnosis, her family's experiences with tick-borne illnesses, the emotional impact of losing her brother, and the creation of a nonprofit dedicated to helping patients access care.

The interview provides practical information about NELAD's grant program and its efforts to support families facing the financial burden of Lyme disease.

Explore additional patient stories, advocacy organizations, and healthcare professionals through Tick Boot Camp's LIVE from ILADS podcast series.

What if the biggest obstacle to diagnosing Lyme disease isn't a lack of symptoms—but the limitations of the tests doctors rely on?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Liz Horn, PhD, Principal Investigator of the Lyme Disease Biobank, a research program of the Bay Area Lyme Foundation, to explore why Lyme disease testing remains challenging and how new diagnostic technologies could change the future of patient care.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation covers early Lyme disease testing, antibody detection, FDA-cleared diagnostics, persistent symptoms after treatment, tissue donation, and the research needed to better understand Borrelia and other tick-borne pathogens.

Dr. Horn explains how researchers are using donated blood, urine, and human tissue samples to develop more accurate tests, investigate persistent symptoms, and study what tick-borne pathogens may be doing inside the body.

She also shares encouraging developments involving IGeneX, emerging multiplex antibody tests, and a growing research network that gives patients meaningful opportunities to contribute to scientific progress.

Her message is hopeful: Better Lyme disease diagnostics are possible, and patients can play an important role in making them a reality.

Meet Dr. Liz Horn, PhD

Dr. Liz Horn is the Principal Investigator of the Lyme Disease Biobank, a research initiative of the Bay Area Lyme Foundation.

She began working on the biobank in 2013, with biological sample collection beginning in 2014.

The program was created to address a major obstacle in Lyme disease research: scientists often lack access to well-characterized patient samples needed to develop and validate diagnostic tests.

Dr. Horn explains that a survey conducted in January 2025 found that approximately 85% of participating researchers still lacked some of the samples they needed.

Through the biobank, her team collects, processes, and distributes samples to qualified researchers investigating Lyme disease and associated infections.

At the time of the interview, the program had enrolled more than 1,250 participants and supported over 115 research projects.

Why Lyme Disease Testing Remains So Difficult

Dr. Horn explains that most commonly used Lyme disease diagnostic tests do not directly detect the bacteria responsible for the infection.

Instead, they measure the body's immune response.

This distinction is especially important during early infection, when the immune system may not yet have produced detectable antibodies.

She describes two major categories of diagnostic testing.

Direct Testing: Looking for Borrelia Itself

A direct test attempts to identify the pathogen or its genetic material.

For Lyme disease, that means detecting evidence of Borrelia rather than measuring the immune system's response to it.

Dr. Horn explains that researchers still need better direct detection methods.

The development of reliable direct tests could provide new opportunities for diagnosing infection, particularly in situations where antibody testing is inconclusive.

Indirect Testing: Looking for Antibodies

Indirect tests, including commonly used Lyme disease serology tests, measure antibodies produced in response to infection.

The challenge is that antibodies take time to develop.

Dr. Horn explains that a person may have Lyme disease before their immune response becomes detectable through laboratory testing.

This creates a diagnostic window during which an infected patient may test negative.

A negative Lyme disease antibody test early after infection does not necessarily rule out Lyme disease.

For more information about testing limitations, explore Tick Boot Camp's Lyme disease testing resources.

Why Two Lyme Disease Tests Can Produce Different Results

One of the interview's most revealing discussions concerns differences between laboratory assays.

Dr. Horn explains that two FDA-cleared first-tier antibody tests may not identify exactly the same patients.

A sample that tests negative using one assay may test positive using another.

This means the specific test used by a laboratory can influence whether an infection is detected.

Dr. Horn describes how the Lyme Disease Biobank's well-characterized samples help researchers evaluate these differences.

Her work underscores why test sensitivity, specificity, timing, and clinical context all matter when interpreting Lyme disease results.

New Lyme Disease Tests: IGeneX and Multiplex Antibody Technology

Dr. Horn discusses several promising diagnostic developments supported by biobank samples.

IGeneX and FDA-Cleared Lyme Disease Testing

She highlights an IGeneX diagnostic assay that received FDA clearance with the help of clinical samples provided by the Lyme Disease Biobank.

These samples allowed researchers to evaluate how the test performed in people with documented clinical histories.

Dr. Horn emphasizes that access to carefully characterized samples is essential for developing and validating new diagnostic technologies.

FDA clearance does not mean a test is perfect or appropriate for every clinical situation, but it represents an important regulatory milestone.

Multiplex Testing: Looking at More Than One Antibody Target

Dr. Horn also describes research involving InBios.

Its experimental approach examines multiple Borrelia antibody targets rather than relying on a single target.

She explains that Borrelia expresses different proteins, known as antigens, that may trigger different antibody responses.

A multiplex test can examine several antibody targets simultaneously.

Dr. Horn uses a simple analogy:

Looking at one target is like taking one photograph. Looking at ten targets provides ten different snapshots.

Researchers hope this broader approach may improve the ability to detect Lyme disease at different stages of infection.

However, these approaches still require rigorous validation to establish their accuracy and clinical usefulness.

Could New Lyme Tests Detect Infection Earlier?

Dr. Horn discusses research involving two experimental single-tier serology tests.

According to the findings she describes, these approaches showed promise for identifying Lyme disease earlier than some conventional testing methods.

She references the possibility of detecting infection approximately one week after symptom onset in certain study settings.

That would represent a meaningful advance for patients who currently face uncertainty during the early stages of infection.

However, these findings do not mean that every patient can currently obtain a reliable positive test one week after infection.

Larger studies, regulatory review, and clinical validation are necessary before new diagnostic approaches can become widely adopted.

Why Some Patients Don't Develop the Expected IgG Antibody Response

Dr. Horn describes research involving patients who received treatment for early Lyme disease.

She explains that clinicians often expect an IgG antibody response to develop as time passes.

However, her research found that some treated patients did not develop the anticipated detectable IgG response.

This process, known as seroconversion, can be affected by the timing of infection and treatment.

Dr. Horn explains that antibiotic treatment may change the development of measurable antibodies.

This is particularly important when interpreting follow-up testing.

The absence of a later positive IgG test does not necessarily mean an earlier Lyme disease diagnosis was incorrect.

Likewise, antibody results alone cannot reliably establish whether an infection remains active after treatment.

One in Five Patients Still Had Symptoms Three Months Later

Dr. Horn discusses a study involving patients with early Lyme disease who were followed after treatment.

She reports that approximately 20% continued experiencing symptoms three months later, despite receiving treatment early in their illness.

These patients had been evaluated at clinical sites experienced in recognizing early Lyme disease.

The finding raises important questions about why some people experience persistent symptoms even after timely diagnosis and treatment.

Dr. Horn believes further research is needed to understand the biological mechanisms involved and develop better tools for evaluating patients who remain ill.

Persistent symptoms after Lyme disease treatment are real and deserve appropriate medical attention, but they do not by themselves establish that live Borrelia bacteria remain present.

For additional research and patient perspectives, explore Tick Boot Camp's Lyme Persists educational resources.

What Is the Lyme Disease Biobank?

Rich asks Dr. Horn to explain the biobank in practical terms for patients and caregivers.

She describes it as a collection of biological samples donated by people who participate voluntarily in research.

The program includes samples from individuals with early Lyme disease and people experiencing persistent symptoms.

Depending on the study, participants may provide:

• Blood samples
• Urine samples
• Information about symptoms and medical history
• Follow-up samples over time
• Certain tissues collected during qualifying surgical procedures

These materials are processed and made available to researchers developing diagnostic tests and investigating disease mechanisms.

Dr. Horn explains that scientists benefit from knowing the clinical background associated with each sample.

Without that information, it becomes much harder to determine whether a diagnostic test accurately identifies the patient population it is intended to serve.

The Lyme Disease Tissue Bank: Studying Borrelia and Bartonella Inside the Body

One of the most important initiatives discussed is the Lyme Disease Tissue Bank, launched in 2019.

The program collects selected tissues donated after death by people who had Lyme disease or other tick-borne infections.

At the time of the interview, Dr. Horn reports that 27 individuals had donated tissues, including brain tissue.

Additional tissue types may include:

• Heart
• Liver
• Spleen
• Bladder
• Muscle
• Peripheral nerves and other nervous system tissues

These donations allow researchers to investigate where pathogens or their components may be found and how they might relate to disease processes.

Dr. Horn emphasizes that the program is not a whole-body donation program.

Instead, it coordinates the recovery of specific tissues for scientific study.

Participants interested in postmortem donation must register in advance so arrangements can be made.

The program can coordinate donations across much of the United States.

How Tissue Donations Could Help Explain Persistent Lyme Symptoms

Dr. Horn believes studying human tissue may help answer questions that cannot be resolved through blood testing alone.

Researchers are interested in understanding whether Borrelia, Bartonella, or other pathogens—or evidence of their prior presence—can be identified in specific tissues.

The findings could help scientists investigate disease mechanisms, improve diagnostic methods, and identify future research priorities.

The tissue bank also provides an opportunity to study neurological and other organ-specific complications associated with tick-borne illnesses.

However, finding bacterial material in tissue does not automatically establish active infection or prove that the organism caused a particular symptom.

These questions require careful scientific investigation.

More Than 115 Research Projects Supported

Dr. Horn explains that the biobank has supported more than 115 research projects.

Not every project produces a successful diagnostic test.

Some experimental approaches fail to demonstrate adequate accuracy.

She emphasizes that these negative findings are still valuable.

They help researchers identify which approaches are unlikely to work and avoid repeating unsuccessful experiments.

The biobank also asks participating researchers to share performance data from their studies.

This allows the program to build knowledge about how different tests perform using its samples.

Dr. Horn believes this collaborative model accelerates research by allowing scientists to focus on developing and evaluating new technologies rather than independently recruiting every patient needed for early investigations.

How Lyme Disease Patients Can Contribute to Research

Near the end of the interview, Rich asks how Tick Boot Camp listeners can help advance Lyme disease research.

Dr. Horn explains that participation opportunities depend on the specific study and the patient's circumstances.

Donate Blood or Urine

Eligible participants in certain geographic areas, including the San Francisco Bay Area, may be able to donate biological samples through participating clinical sites.

The process typically involves informed consent, health-history questions, and sample collection.

Consider Tissue Donation

Some individuals may be eligible to contribute tissue collected during specific surgical procedures.

Dr. Horn also discusses the possibility of registering for postmortem tissue donation.

These contributions can support research into the effects of tick-borne pathogens on different organs and tissues.

Support Patient-Powered Research

Rich also highlights MyLymeData, a patient-powered research initiative that allows people affected by Lyme disease to share information about their experiences.

These opportunities provide ways for patients to contribute to research, even when their own health circumstances limit other forms of advocacy.

For current eligibility requirements and donation information, visit the Lyme Disease Biobank or contact the Bay Area Lyme Foundation.

When Will Better Lyme Disease Tests Become Available?

Rich asks Dr. Horn when patients might begin seeing significant improvements in Lyme disease diagnostics.

Speaking in 2025, she expresses optimism that better tests could begin emerging within approximately two years, with additional progress over the following five years.

She credits the availability of well-characterized samples, collaboration among research groups, and growing interest in new diagnostic technologies.

These are research expectations rather than guaranteed development or approval timelines.

Still, her message is encouraging.

The tools needed to improve Lyme disease testing are being developed, and patients are helping make that work possible.

Key Takeaways

• Current Lyme disease tests have important limitations. Antibody tests may miss infections before a detectable immune response develops.
• Direct detection remains a major research priority. Scientists need better methods for identifying Borrelia itself.
• Different FDA-cleared tests may produce different results. The choice of assay can influence detection.
• Multiplex antibody testing shows promise. Evaluating multiple Borrelia antigens may improve diagnostic performance.
• Early treatment can affect antibody development. Some treated patients may not develop the expected later IgG response.
• Persistent symptoms require more research. Dr. Horn discusses findings showing that approximately one in five early-treated patients still reported symptoms after three months.
• Patient donations are advancing science. Blood, urine, and tissue samples help researchers investigate diagnostic and biological questions.
• The Lyme Disease Biobank supports collaboration. More than 115 research projects had used its resources at the time of the interview.
• Patients can help drive progress. Voluntary research participation and advocacy can contribute to the development of better diagnostic tools.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Liz Horn, PhD, Principal Investigator of the Lyme Disease Biobank.

Rich and Dr. Horn discuss the limitations of Lyme disease testing, new diagnostic technologies, FDA-cleared assays, persistent symptoms after treatment, and how donated biological samples are helping advance scientific research.

They also explore opportunities for patients to contribute to studies that may improve the future of Lyme disease diagnosis and care.

Discover additional interviews with researchers and healthcare professionals through Tick Boot Camp's LIVE from ILADS podcast series.

Why do so many women with chronic Lyme disease struggle to get answers—and could stress, hormones, immune function, and medical gaslighting help explain their experiences?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Anne VanCouvering, ND, a Vermont-based naturopathic doctor who treats patients with Lyme disease, tick-borne infections, mold-related concerns, and complex chronic illness.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why women are so heavily represented in the chronic Lyme disease community, how prolonged stress may affect immune function, and why patients with multisystem symptoms are frequently dismissed by healthcare professionals.

Dr. VanCouvering also shares her personal journey into Lyme disease medicine, including her son's seven-year struggle with unexplained symptoms, her family's experiences with tick exposure on Long Island, and how ILADS helped shape her clinical approach.

Their discussion raises important questions about Bartonella, Babesia, neuroinflammation, autism-like symptoms, PANS/PANDAS, environmental exposures, nervous system regulation, and the limitations of conventional medical care.

Throughout the interview, Dr. VanCouvering emphasizes a principle that every patient deserves to experience: The goal isn't for a doctor to be right. The goal is to help the patient get well.

Meet Dr. Anne VanCouvering, ND

Dr. Anne VanCouvering is a naturopathic doctor based in central Vermont who provides telemedicine services to patients in Vermont, New Hampshire, and Massachusetts.

Her clinical interests include Lyme disease, tick-borne infections, mold-related illness, autism, PANS/PANDAS, and complex chronic health conditions.

Before attending naturopathic medical school, she operated a massage therapy practice in the Hamptons on Long Island.

Her interest in medicine developed partly from her desire to understand her son's health challenges.

She began attending ILADS conferences in 2014, seeking additional education about Lyme disease and associated infections.

Dr. VanCouvering describes witnessing the growth of integrative and naturopathic approaches within the ILADS community, including increasing discussions of herbal medicine and supportive therapies.

A Mother's Search for Answers: Seven Years of Unrecognized Lyme Disease

Dr. VanCouvering's journey into Lyme disease medicine began with her son.

During his teenage years, he experienced a collection of symptoms that initially appeared unrelated:

• Excessive sleeping and debilitating fatigue
• Anxiety and behavioral changes
• Knee pain
• Persistent headaches
• Cognitive difficulties and trouble completing sentences
• Purple stretch-mark-like skin changes that she later associated with Bartonella

She initially explored autism and other possible explanations for his symptoms.

Despite consulting multiple healthcare professionals, she struggled to obtain a diagnosis that explained his overall condition.

Eventually, a discussion with another physician about purple striae prompted her to reconsider his symptoms.

She began investigating tick-borne infections and concluded that Lyme disease might be contributing to his illness.

By that point, approximately seven years had passed since his symptoms began.

His condition eventually became so severe that, while attending college in Oregon, he reportedly spent three months largely confined to bed.

Dr. VanCouvering describes traveling to California for additional medical support at Gordon Medical Associates, although the financial burden made continued care difficult.

She credits a combination of medical care and lifestyle changes with helping her son improve.

Her experience highlights how difficult it can be for families to navigate complex symptoms, particularly when multiple body systems appear to be affected.

Clinical context: Purple striae are not diagnostic of Bartonella infection, and symptoms such as fatigue, anxiety, and cognitive changes have many possible causes. Lyme disease requires appropriate clinical evaluation.

From Long Island to Vermont: A Family History of Tick Exposure

Dr. VanCouvering discusses her family's extensive history on Long Island, including time spent on Shelter Island.

Her husband served as a Scoutmaster and experienced frequent tick bites over many years.

She describes how repeated exposure shaped her awareness of Lyme disease and the practical challenges of tick prevention.

Rich, also from Long Island, connects with her over the region's history of tick-borne disease research.

Their conversation highlights how Lyme disease can affect families with extensive outdoor exposure, including hikers, gardeners, hunters, park employees, and other people who spend time in wooded or grassy environments.

Repeated tick exposure increases opportunities for infection, but it does not mean everyone living in an endemic area has Lyme disease or carries Borrelia.

For practical prevention and next steps after a tick bite, explore Tick Boot Camp's Tick Bite Blueprint.

Lyme Disease, Bartonella, Babesia, and the Total Burden of Illness

Dr. VanCouvering explains that she approaches complicated patient cases by considering more than one possible contributing factor.

Her evaluations may include:

• Lyme disease and other tick-borne infections
• Bartonella and Babesia
• Environmental mold exposure
• Possible heavy metal exposure
• Chronic viral illnesses
• Stress and nervous system function
• Individual medical history and genetic factors

She uses a memorable analogy involving The Godfather and his associates.

In her metaphor, addressing one major infection may not resolve a patient's symptoms if other medical problems remain unrecognized.

She believes clinicians should evaluate contributing factors methodically rather than assuming that every symptom has a single explanation.

However, the presence of multiple symptoms does not establish multiple infections, mold toxicity, or impaired detoxification. Each suspected condition requires appropriate evaluation, and not every proposed testing or treatment approach is clinically validated.

Chronic Stress, Fight-or-Flight, and the Immune System

One of the interview's central discussions focuses on the relationship between stress and chronic illness.

Rich asks whether prolonged stress could affect the immune system in ways that influence a person's response to tick-borne infections.

Dr. VanCouvering explains the body's stress response using the familiar example of escaping a tiger.

During a perceived threat, the sympathetic nervous system prepares the body for immediate action.

Processes such as digestion and other routine functions may temporarily change as the body prioritizes responding to danger.

She believes prolonged stress may complicate recovery for some patients with chronic illness.

The conversation also explores the balance between sympathetic and parasympathetic nervous system activity.

Scientific context: Chronic stress can influence immune signaling, sleep, pain perception, and overall health. However, stress does not simply switch off the immune system, and evidence does not establish that psychological stress causes persistent Borrelia infection or Lyme disease relapse.

For a related discussion, listen to Tick Boot Camp's interview with Cathleen King about nervous system regulation and Primal Trust.

Why Are More Women Represented in the Chronic Lyme Disease Community?

Rich shares an observation from hundreds of Tick Boot Camp interviews: women make up a substantial majority of the patients and practitioners featured on the podcast.

He asks Dr. VanCouvering whether biological differences, stress, or social expectations could help explain that pattern.

She identifies several possible contributors.

Women May Carry More Caregiving and Household Responsibilities

Dr. VanCouvering discusses the additional responsibilities many women manage outside paid employment.

These may include raising children, caring for aging relatives, and organizing household responsibilities.

She believes these demands can contribute to prolonged stress and affect a person's overall well-being.

Rich also raises the possibility that social media may increase stress for some women.

Dr. VanCouvering cautions that the issue is more complicated than social media alone.

Men May Be Less Likely to Seek Medical Care

Dr. VanCouvering notes that social expectations may discourage some men from discussing symptoms or seeking help.

She treats men who spend significant time outdoors, including gardeners, hunters, and people working in wooded environments.

She estimates that her own practice serves approximately 60% women and 40% men.

This observation raises an important distinction: The demographics of patients seeking treatment do not necessarily reflect the actual distribution of Lyme disease infections.

Hormonal Changes and Medical Dismissal

Dr. VanCouvering also discusses hormonal fluctuations and their possible effects on symptoms.

She believes women may face additional challenges when reporting fatigue, pain, or other difficult-to-explain health problems.

Both Rich and Dr. VanCouvering express concern that women's physical symptoms are sometimes attributed to anxiety or depression without adequate investigation.

The discussion raises questions about how medical research, gender bias, and differences in healthcare utilization influence patient experiences.

Importantly, the interview does not establish that women are biologically more likely than men to develop persistent symptoms after Lyme disease.

Medical Gaslighting: When Patients Are Told It's All in Their Heads

Dr. VanCouvering describes patients arriving at her practice in tears after repeatedly being told that their symptoms are psychological.

She believes medical dismissal can result from limited education, insufficient appointment time, or clinicians' reluctance to acknowledge uncertainty.

Rich asks whether the problem reflects individual arrogance or broader failures within the healthcare system.

They discuss how insurance reimbursement, short appointments, demanding schedules, and fragmented specialty care can make it difficult for healthcare professionals to thoroughly evaluate complicated cases.

Dr. VanCouvering believes that when clinicians cannot explain a patient's symptoms, they should be willing to acknowledge uncertainty and help the patient find appropriate additional care.

She summarizes her philosophy with a memorable statement:

“It's not about me being right. It's about getting it right.”

Her message is that healthcare should prioritize patient outcomes over professional ego.

Why Multisystemic Illness Requires a Broader Perspective

Dr. VanCouvering argues that complex chronic illness can be difficult to understand when individual symptoms are evaluated separately.

A patient may experience neurological, gastrointestinal, musculoskeletal, cardiovascular, and psychological symptoms simultaneously.

Different specialists may focus on individual organs or systems without developing a coordinated understanding of the overall clinical picture.

She believes longer appointments, careful listening, and collaboration between practitioners can help identify overlooked medical concerns.

Rich agrees that the medical system needs better ways to recognize and investigate illnesses involving multiple body systems.

Their discussion emphasizes the importance of comprehensive medical histories, appropriate testing, and collaboration rather than assuming every unexplained symptom has the same cause.

Autism, PANS/PANDAS, and Neuroinflammation

Dr. VanCouvering explains that her original interest in naturopathic medicine involved understanding her son's developmental and behavioral symptoms.

She continues to see some patients with autism and PANS/PANDAS in addition to those with tick-borne illnesses.

The interview briefly explores the possibility that inflammatory and infectious conditions can sometimes produce neurological or behavioral symptoms.

PANS and PANDAS are clinical syndromes associated with the abrupt onset of certain neuropsychiatric symptoms, although their diagnostic evaluation and proposed mechanisms remain subjects of ongoing research.

Autism is a neurodevelopmental condition and should not be equated with Lyme disease or presumed to be caused by tick-borne infections.

For a related conversation, explore Tick Boot Camp's interview with Dr. Somer DelSignore about pediatric Lyme disease, autism, PANS/PANDAS, and neuroinflammation.

How ILADS Changed Dr. VanCouvering's Medical Career

Dr. VanCouvering first attended ILADS in 2014, when she was still learning how to evaluate Lyme disease and associated infections.

She remembers that discussions of herbal and integrative approaches initially occupied relatively small conference spaces.

By the following year, attendance at those sessions had grown substantially.

She credits ILADS with introducing her to clinicians and educational resources that influenced her approach to complex patient cases.

Rich and Dr. VanCouvering also discuss how continuing education helps practitioners remain open to new ideas.

Their conversation illustrates why clinicians need to evaluate emerging research critically while continuing to provide compassionate, evidence-informed care.

Key Takeaways

• Lyme disease can affect multiple body systems. Dr. VanCouvering's son's experience motivated her to pursue additional medical education.
• Delayed diagnosis can profoundly affect families. Her son experienced years of symptoms before she began investigating Lyme disease.
• Other conditions may complicate recovery. She discusses co-infections, environmental exposures, and stress as factors she considers in selected patients.
• Stress and immune function are connected. The relationship is complex and does not establish that stress causes persistent Lyme infection.
• Women's experiences deserve greater attention. The interview explores caregiving demands, hormonal changes, healthcare utilization, and medical dismissal.
• Men also experience Lyme disease and diagnostic challenges. Social expectations may affect when people seek care.
• Medical gaslighting can damage trust. Patients deserve clinicians who listen, investigate, and acknowledge uncertainty.
• Complex illness requires collaboration. Coordinated care can be especially important when symptoms involve multiple systems.
• Education remains essential. Dr. VanCouvering credits ILADS with helping expand her knowledge of tick-borne diseases.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Rich and Dr. Anne VanCouvering discussing Lyme disease, chronic stress, gender differences, medical gaslighting, and the challenges of treating complex chronic illness.

The interview also explores her son's health journey, the history of tick exposure on Long Island, and her evolving approach to patient care.

Rich concludes by inviting Dr. VanCouvering to return for a longer discussion about how Lyme disease should be defined and understood.

Discover more physician, researcher, and patient conversations through Tick Boot Camp's LIVE from ILADS podcast series.

What happens when an Emmy-winning documentary filmmaker turns his camera toward one of the fastest-changing tick problems in the Northeast?

In this episode of the Tick Boot Camp Podcast, Matt Sabatello, Tick Boot Camp Co-Founder, sits down in person with Emmy-winning filmmaker Reece Robinson, director of the upcoming documentary Ticking Point, to explore the rise of lone star ticks, Alpha-Gal Syndrome, Lyme disease, and what communities can do to fight back.

For Reece, the story is personal. His older brother experienced severe chronic Lyme disease, including Bell’s palsy, cognitive problems, significant pain, intravenous antibiotics, and a period of being bedridden. Years later, Reece watched another tick-related threat begin transforming life on Martha’s Vineyard: the rapid expansion of lone star ticks and growing concern about Alpha-Gal Syndrome.

Now he is documenting it.

From Chronic Lyme Disease to Ticking Point

Reece shares how watching his brother struggle with Lyme disease left a lasting impression on him long before he became a professional filmmaker.

His career eventually led him into character-driven documentary storytelling and work on National Geographic’s The First Wave, which documented healthcare workers and patients during the earliest months of the COVID-19 pandemic.

During the summer of 2025, Reece noticed something happening on Martha’s Vineyard that he could no longer ignore. Conversations about ticks and Alpha-Gal Syndrome seemed to be everywhere.

That experience became the foundation for Ticking Point, a feature-length, solutions-focused documentary examining how communities are responding to expanding tick populations and Alpha-Gal Syndrome.

What Is Ticking Point?

Rather than creating what Reece describes as a “doom and gloom” documentary, Ticking Point focuses on people trying to solve the problem.

The film follows residents, scientists, hunters, public health professionals, and advocates as communities confront questions surrounding:

• Lone star tick expansion
• Alpha-Gal Syndrome
• Deer populations and tick ecology
• Community-wide tick management
• Tick-bite prevention
• Emerging scientific research
• Public health policy
• Ecological interventions
• The challenges of balancing competing community priorities

Martha’s Vineyard provides a fascinating case study because it combines a significant tick problem with an engaged year-round community actively searching for solutions.

The question behind the film is much bigger than one island: If Martha’s Vineyard can find ways to meaningfully reduce its tick problem, could those lessons help other communities?

Alpha-Gal Syndrome and the Lone Star Tick

Much of the conversation focuses on growing concern surrounding Alpha-Gal Syndrome (AGS), an allergy associated in the United States primarily with bites from lone star ticks.

Reece discusses stories he has encountered while making the documentary, including people whose reactions extend far beyond simply avoiding steak or hamburgers. For some patients, mammalian-derived ingredients, dairy products, medications containing certain animal-derived ingredients, or even exposure to cooking fumes can become concerns.

The unpredictable nature of Alpha-Gal Syndrome is one reason Reece believes more research is urgently needed.

Two people can experience tick exposure and have dramatically different outcomes—and researchers are still working to understand why.

The Rise of the Lone Star Tick

Reece describes the lone star tick as a particularly formidable challenge.

Unlike the more passive questing behavior people often associate with blacklegged ticks, lone star ticks can actively move toward potential hosts. The conversation explores their behavior, expanding presence across parts of the Northeast, and what that expansion could mean for communities already dealing with Lyme disease and other tick-borne illnesses.

Alpha-Gal Syndrome is also only part of the discussion.

Matt, Rich, and Reece discuss other conditions associated with lone star ticks, including ehrlichiosis, tularemia, and Southern Tick-Associated Rash Illness (STARI).

Filming a Long Island Tick Drag with Monica Cipriani

This interview was recorded at the end of an extraordinary day in the field.

Before sitting down for the podcast, Reece joined Tick Boot Camp and researcher Monica Cipriani on Long Island to film tick-dragging footage for Ticking Point.

The results demonstrated just how significant local lone star tick populations can become. The team encountered large numbers of lone star ticks, including dense clusters of larvae commonly called “tick bombs.”

Reece filmed the fieldwork and plans to use footage from the day in his documentary.

See what we discovered during our Long Island tick drag with Monica Cipriani and Reece Robinson.

Searching for Solutions to the Tick Problem

One of the most important themes of Ticking Point is that there probably won't be one solution to the growing tick problem.

Reece is documenting approaches that address the issue from multiple directions, including:

• Deer population management
• Habitat and landscape management
• Tick-bite prevention
• Scientific research
• Public education
• Community-based interventions
• Research into the human immune response
• Potential future technologies designed to interrupt tick-borne disease transmission

The conversation also explores the social and political challenges surrounding interventions such as deer management and controlled burns.

Solutions that may appear straightforward scientifically can become much more complicated when implemented across real communities.

Can We Prevent Tick-Borne Disease Before the Bite Leads to Illness?

Reece also discusses scientists exploring entirely new approaches to tick-borne disease prevention.

That includes research involving genetically modified mice designed to interrupt the transmission cycle of Lyme disease, as well as investigations into immune responses that could someday help researchers better understand how the body responds to tick feeding.

These ideas remain areas of research rather than immediate solutions, but they illustrate a broader question driving Ticking Point:

Can we change the environment, ecology, or transmission cycle in ways that prevent people from becoming sick in the first place?

A Filmmaker With a Personal Connection to Lyme Disease

Although Reece does not identify as a tick-borne disease patient himself, his brother's experience gives him a perspective familiar to many families in the Lyme community.

He remembers his brother experiencing Bell’s palsy, severe pain, memory problems, prolonged illness, IV antibiotics, and numerous approaches to treatment.

That experience now intersects with Reece’s career as a documentary filmmaker.

His goal with Ticking Point isn't simply to show how frightening ticks can be. It is to document people trying to understand the problem, challenge it, and build solutions.

Support and Follow Ticking Point

Ticking Point is currently an independent documentary project, and Reece is looking for people affected by Alpha-Gal Syndrome, researchers, advocates, communities working on tick-control initiatives, and others with meaningful stories to share.

The project is also accepting tax-deductible financial support through its fiscal sponsor.

Learn more about Ticking Point, watch the documentary teaser, join the mailing list, or contact Reece Robinson.

Learn More About Reece Robinson

Reece Robinson is an Emmy-winning documentary filmmaker whose work focuses on human stories and social issues. His credits include work as a field producer on National Geographic’s The First Wave, documenting the earliest months of the COVID-19 pandemic inside a New York hospital.

Learn more about Reece Robinson and explore his filmmaking work.

More From Tick Boot Camp

Want to continue learning about Lyme disease, Alpha-Gal Syndrome, ticks, and the people working to solve these complex problems?

Explore more Tick Boot Camp Podcast interviews with patients, doctors, researchers, and advocates.

If you've recently found a tick or experienced a tick bite, start with the Tick Boot Camp Tick Bite Blueprint.

And don't miss our behind-the-scenes look at the fieldwork featured in Reece's documentary: Long Island Tick Drag: Tick Bombs, Lone Star Ticks & an Invasive Tick.

Could Lyme disease and other tick-borne infections be overlooked contributors to arterial inflammation, heart disease, and stroke risk?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reconnects with Dr. H. Thomas “Tom” Hight, MD, a board-certified internal medicine physician and clinical lipidologist specializing in cardiovascular disease prevention and arterial health.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores a provocative question: Could certain infections contribute to cardiovascular inflammation in ways that conventional heart disease evaluations don't routinely investigate?

Dr. Hight shares observations from his Atlanta-based practice, where he monitors arterial health using serial ultrasound examinations and cardiovascular biomarkers.

He describes patients whose arterial measurements worsened despite improvements in traditional risk factors, prompting him to investigate additional possible contributors, including chronic viral infections and tick-borne illnesses.

The discussion covers Lyme disease, Bartonella, endothelial inflammation, atherosclerosis, plaque regression, heart attacks, strokes, Lyme carditis, and emerging research into vascular health and dementia.

Dr. Hight also explains why he believes cardiovascular prevention should look beyond cholesterol and blood pressure while emphasizing the importance of addressing all relevant risk factors.

His observations raise important research questions, although a direct causal relationship between persistent tick-borne infection and coronary atherosclerosis has not been established.

Meet Dr. Tom Hight, MD

Dr. H. Thomas Hight, MD is a physician specializing in cardiovascular risk reduction, arterial disease, and clinical lipidology.

Based in Atlanta, Georgia, he has spent years working with patients who have experienced heart attacks, strokes, and other serious cardiovascular events.

Dr. Hight developed an ultrasound-based approach to monitoring changes in arterial health over time.

His practice, CardioSound, focuses on identifying and addressing factors that may contribute to cardiovascular disease progression.

His growing interest in Lyme disease began after observing unexpected changes in patients whose cardiovascular risk factors appeared to be improving.

He attended an ILADS conference in Boston to learn more about tick-borne illnesses and their possible cardiovascular implications.

This interview follows his earlier appearance on Tick Boot Camp, where he first discussed the potential relationship between Lyme disease and cardiovascular risk.

Why Dr. Hight Started Investigating Lyme Disease in Heart Patients

Dr. Hight explains that his practice regularly monitors patients who have already experienced cardiovascular events.

These patients face increased risks of subsequent heart attacks, strokes, and other complications.

His approach includes repeat arterial ultrasound studies approximately every three to four months, alongside laboratory testing and comprehensive risk-factor management.

He looks for evidence that arterial disease is stabilizing or improving.

However, following the COVID-19 pandemic, he noticed an unexpected pattern.

Some patients who had previously shown improvements began experiencing worsening arterial findings.

This prompted him to reconsider whether additional inflammatory or infectious factors might be contributing to their cardiovascular risk.

He began evaluating selected patients for chronic viral illnesses and tick-borne infections.

Dr. Hight reports that some patients subsequently showed improvements in inflammatory biomarkers and arterial measurements during treatment.

These observations motivated his continued interest in the relationship between infectious disease and cardiovascular health.

Lyme Disease, Bartonella, and Endothelial Inflammation

A central theme of the conversation is the endothelium, the thin layer of cells lining the inside of blood vessels.

Endothelial cells play important roles in vascular function, blood flow, inflammation, and clotting.

Dr. Hight discusses how certain infections may affect vascular tissues and potentially contribute to inflammatory processes.

He is particularly interested in Borrelia, the bacteria responsible for Lyme disease, and Bartonella species.

Both infections have recognized cardiovascular manifestations under certain circumstances, although their mechanisms and clinical presentations differ.

Dr. Hight believes further research is needed to determine whether some tick-borne infections contribute to the progression of atherosclerosis.

Does Treating Infections Improve Arterial Health?

Dr. Hight reports observing reductions in inflammatory biomarkers followed by improvements in arterial ultrasound findings among some patients receiving treatment.

He emphasizes that infection management is only one part of his cardiovascular approach.

His patients also receive attention to cholesterol, blood pressure, metabolic health, and other established cardiovascular risk factors.

Because multiple interventions may occur together, these clinical observations cannot determine which intervention caused the improvements.

Dr. Hight acknowledges that more research is necessary to establish cause-and-effect relationships.

Understanding Atherosclerosis and Plaque Regression

Atherosclerosis develops when plaque accumulates within artery walls.

Plaque contains lipids, inflammatory cells, connective tissue, and other materials.

Over time, atherosclerosis can restrict blood flow or contribute to events such as heart attacks and strokes.

Dr. Hight explains that he uses repeated ultrasound studies to evaluate changes in arterial disease.

He discusses plaque regression, which refers to a reduction in atherosclerotic plaque burden.

He believes monitoring arterial changes over time provides valuable information about whether a patient's cardiovascular risk-management plan is working.

Although plaque regression can occur with effective treatment, interpreting ultrasound changes requires appropriate measurement techniques and clinical context.

Dr. Hight also describes strong survival outcomes in his own practice. These are self-reported clinical observations, not independently verified results from a controlled study.

Beyond Cholesterol: More Than 20 Modifiable Heart Disease Risk Factors

Dr. Hight argues that cardiovascular medicine should consider a wider range of potentially modifiable risk factors.

He explains that many routine discussions focus primarily on:

• Cholesterol
• Blood pressure
• Diabetes
• Smoking
• Obesity

These are important, well-established cardiovascular risk factors.

However, Dr. Hight believes clinicians should also investigate other contributors when patients experience unexpected disease progression.

He describes evaluating more than 20 modifiable factors in his practice.

His broader approach includes inflammatory markers and, in selected circumstances, possible infectious contributors.

The conversation emphasizes that patients who have experienced a heart attack or stroke benefit from comprehensive secondary prevention, including evidence-based medication, lifestyle management, and appropriate specialist follow-up.

Cardiovascular Biomarkers: Troponin T, NT-proBNP, and IL-6

Dr. Hight discusses several laboratory markers that helped prompt his investigation into additional inflammatory processes.

These include:

High-sensitivity troponin T: A biomarker associated with heart muscle injury. Interpretation depends on the clinical situation and the degree and pattern of elevation.

NT-proBNP: A biomarker commonly used in the evaluation of heart failure and cardiac stress.

Interleukin-6 (IL-6): An inflammatory signaling molecule involved in immune responses and multiple disease processes.

Dr. Hight reports seeing changes in certain markers alongside changes in arterial health.

He believes these measurements may provide clues when investigating patients whose cardiovascular disease is not improving as expected.

However, these biomarkers are not specific tests for Lyme disease, Bartonella infection, or infection-related atherosclerosis.

Lyme Carditis vs. Coronary Artery Disease

Rich and Dr. Hight discuss the distinction between established cardiac complications of Lyme disease and the broader possibility of infection-associated atherosclerosis.

Lyme carditis is a recognized manifestation of Lyme disease that can affect the heart's electrical conduction system, sometimes causing atrioventricular block.

Symptoms may include palpitations, dizziness, fainting, shortness of breath, and chest discomfort.

Coronary artery disease is different.

It generally involves atherosclerotic plaque buildup in arteries supplying the heart muscle.

Dr. Hight believes more research should investigate whether tick-borne infections contribute to coronary artery disease in selected patients.

However, Lyme carditis does not establish that Lyme disease is a common cause of atherosclerosis.

For a related conversation, listen to Tick Boot Camp's interview with Dr. Medeya Tsnobiladze about the neurological and cardiovascular impacts of Lyme disease.

Should Heart Attack Patients Be Tested for Lyme Disease?

Rich asks whether tick-borne disease testing should become part of routine cardiovascular evaluations.

Dr. Hight believes infectious contributors deserve more consideration, particularly when a patient's clinical history raises relevant questions.

He acknowledges that evidence establishing the relationship between Lyme disease and atherosclerosis remains incomplete.

Currently, routine Lyme disease testing for every heart attack patient is not an established standard of care.

Testing decisions should consider symptoms, possible tick exposure, geographic risk, and the likelihood that results will meaningfully guide medical management.

The discussion also addresses the financial burden of specialty testing and the importance of determining whether additional tests offer meaningful clinical value.

Do Patients Always Need Coronary Stents?

Dr. Hight discusses the role of coronary stents in treating certain forms of heart disease.

He acknowledges that stents can be lifesaving when appropriately used.

However, he questions whether some patients with stable coronary artery disease undergo procedures that may not improve their long-term outcomes.

He references two major clinical trials:

COURAGE Trial: Investigated optimal medical therapy with or without percutaneous coronary intervention in selected patients with stable coronary artery disease.

ISCHEMIA Trial: Compared an initial invasive strategy with a conservative strategy in patients with stable ischemic heart disease.

These studies helped clarify the benefits and limitations of invasive procedures in particular patient populations.

The findings do not mean stents are unnecessary for all patients without symptoms or that medical treatment can replace urgent intervention during a heart attack.

Treatment decisions depend on the patient's clinical condition, coronary anatomy, symptoms, and overall risk.

Could Vascular Inflammation Contribute to Dementia?

Near the end of the interview, Dr. Hight discusses his interest in the relationship between large-vessel disease, small-vessel disease, and cognitive health.

He explains that vascular problems can affect both the heart and brain.

Large-vessel disease can contribute to heart attacks and strokes, while cerebral small-vessel disease can contribute to cognitive impairment and vascular dementia.

Dr. Hight hopes future research will identify better biomarkers and interventions that help clinicians recognize and manage vascular disease earlier.

He raises the possibility that improved understanding of inflammatory mechanisms could benefit both cardiovascular and neurological health.

This is a research goal, not evidence that treating Lyme disease reverses dementia.

The Future: Better Biomarkers, Research, and Prevention

Dr. Hight hopes to continue studying the potential relationship between tick-borne infections and cardiovascular disease.

He expresses interest in presenting his clinical observations at a future ILADS conference.

His broader goal is to develop better tools that help healthcare professionals identify risk factors, monitor arterial health, and intervene before serious cardiovascular events occur.

Rich encourages him to share his findings with the wider medical community.

Both agree that research, collaboration, and education are essential for answering questions about the possible cardiovascular consequences of tick-borne infections.

Key Takeaways

• Lyme disease has recognized cardiac complications. Lyme carditis can affect the heart's electrical conduction system.
• The relationship between Lyme disease and atherosclerosis remains uncertain. Dr. Hight's clinical observations raise questions that require controlled research.
• Endothelial health matters. The inner lining of blood vessels plays a central role in vascular function and inflammation.
• Heart disease prevention involves multiple risk factors. Cholesterol, blood pressure, diabetes, smoking, and other established risks remain essential treatment targets.
• Serial arterial imaging may help monitor selected patients. Dr. Hight uses ultrasound to evaluate changes in arterial disease over time.
• Biomarkers can provide important clinical information. Troponin T, NT-proBNP, and IL-6 have different uses and limitations.
• Coronary stents have an important but specific role. Their benefits depend on the clinical situation.
• Vascular health and cognitive health are connected. Research into cerebral small-vessel disease may improve understanding of vascular dementia.
• Further research is needed. Dr. Hight hopes to investigate whether selected tick-borne infections contribute to cardiovascular disease progression.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this interview reunites Rich with Dr. Tom Hight for an update on his clinical observations and cardiovascular research interests.

The conversation explores Lyme disease, Bartonella, arterial inflammation, atherosclerosis, heart attack prevention, plaque regression, and the possibility of improved vascular health through comprehensive risk-factor management.

Explore additional interviews with healthcare professionals and researchers through Tick Boot Camp's LIVE from ILADS podcast series.

For seven years, Anne Desjardins struggled with unexplained symptoms, medical dismissal, depression, and thoughts of suicide before finally receiving a Lyme disease diagnosis. Today, she's helping others find the hope she once desperately needed.

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Anne Desjardins, a Pennsylvania Lyme disease advocate, Ayurvedic practitioner, support group leader, and host of The Silver Lyming podcast.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, their conversation explores delayed Lyme disease diagnosis, neurological symptoms, medical gaslighting, mental health, integrative healing, financial hardship, and the power of sharing patient recovery stories.

Anne opens up about losing her independence, struggling to remember people's names, and reaching a point where she no longer wanted to live. She also shares how her diagnosis, treatment, lifestyle changes, and supportive community helped her rebuild her life and discover a new purpose.

Her story is a reminder that a difficult chapter doesn't have to be the final chapter—and that hearing someone else's recovery story can help make hope feel possible again.

Seven Years of Symptoms Before a Lyme Disease Diagnosis

Anne believes she contracted Lyme disease in Pennsylvania, one of the states most heavily affected by tick-borne illness.

She began noticing symptoms around age 30, but her initial attempts to find medical answers were unsuccessful.

Healthcare professionals repeatedly attributed her symptoms to stress, depression, or being overly emotional.

Anne remembers trying to explain that she was becoming depressed because she felt physically ill every day—not the other way around.

Over time, her symptoms became increasingly disruptive:

• Hearing loss in her left ear
• Heart palpitations and episodes of fluttering
• Severe dizziness, particularly when turning her head
• Memory loss, confusion, and difficulty concentrating
• Speech problems, including stuttering
• Overwhelming fatigue and reduced ability to perform daily activities
• Depression, social withdrawal, and suicidal thoughts

She eventually became concerned that she might have a brain tumor.

After years of unsuccessful medical appointments, a physician finally suspected Lyme disease and ordered testing.

When the result came back positive, Anne felt an overwhelming sense of relief.

She finally had a diagnosis that could help guide her next steps.

Medical Gaslighting, Depression, and the Mental Health Impact of Chronic Illness

Anne describes how repeated dismissal affected her confidence, relationships, and emotional well-being.

When doctors told her nothing was wrong, she began questioning herself.

She became embarrassed by her cognitive symptoms and increasingly avoided social situations.

At one event, she introduced herself to the same person twice within minutes because she couldn't remember their first interaction.

Daily activities such as showering, doing laundry, cleaning, or visiting friends became difficult.

Anne also discusses using alcohol to cope with years of physical and emotional suffering.

Eventually, she experienced suicidal thoughts and wondered whether she would ever regain her life.

Rich asks whether those thoughts were driven by the illness itself, the prolonged diagnostic journey, or the hopelessness that developed along the way.

Anne believes multiple factors contributed. She describes feeling disconnected from herself and eventually learning to recognize that distressing thoughts did not define her identity.

Her experience highlights why mental health support and compassionate medical care are important for people living with disabling chronic symptoms.

If you're struggling with thoughts of suicide, you deserve immediate support. In the United States, call or text 988 to reach the Suicide & Crisis Lifeline.

For additional conversations about the psychological impact of Lyme disease, explore Tick Boot Camp's mental health and Lyme disease interview with therapist Christina Kantzavelos.

Lyme Disease Treatment and Anne's Personal Healing Journey

After receiving her diagnosis, Anne began antibiotic treatment through her family physician.

She initially experienced significant improvement, describing the experience as finally feeling human again.

However, some neurological and cognitive symptoms returned during treatment.

She received additional antibiotics and eventually began working with a clinician experienced in treating Lyme disease.

Anne describes approximately two and a half additional years of antibiotic treatment, alongside herbal supplements and other supportive approaches.

One influential resource was Unlocking Lyme by Dr. Bill Rawls, MD.

Unable to comfortably read at the time because of her cognitive symptoms, Anne listened to the audiobook and found encouragement in Dr. Rawls' recovery story.

She gradually incorporated additional changes into her daily routine, including:

• Dietary adjustments and avoiding foods she personally felt worsened her symptoms
• Eliminating alcohol and caffeine
• Herbal approaches discussed with her healthcare provider
• Hot yoga and regular movement
• Mindfulness, spirituality, and self-reflection
• Exploring Ayurveda and holistic wellness practices

Anne credits these combined changes with helping her regain function and improve her quality of life.

She emphasizes that her transformation happened gradually over several years.

Her experiences reflect an individualized recovery journey rather than a treatment protocol proven to work for everyone. In particular, hot yoga, restrictive diets, and herbal products have not been established as cures for Lyme disease, and prolonged heat exposure can pose risks for some patients.

Discovering Ayurveda and a New Perspective on Health

As Anne's health improved, she became increasingly interested in Ayurveda, a traditional system of medicine originating in India.

She was drawn to its emphasis on daily routines, seasonal changes, nutrition, and the relationship between physical and emotional well-being.

Anne eventually pursued formal education to become an Ayurvedic practitioner.

She describes this experience as part of a broader personal transformation.

Rather than viewing recovery solely as the absence of symptoms, she began exploring how her experience had changed her priorities, relationships, and understanding of herself.

Anne acknowledges that she would never have chosen the suffering she experienced, but she now values the perspective and sense of purpose that emerged from it.

Turning Pain Into Purpose Through Pennsylvania Lyme Advocacy

As Anne regained her health, she became determined to help others avoid the isolation and confusion she had experienced.

She began leading a support group through the PA Lyme Resource Network, a volunteer-driven nonprofit focused on tick-borne disease education, prevention, patient support, and advocacy.

Anne is associated with the organization's Berks County region and has participated in community outreach and prevention education.

She also discusses becoming involved in Pennsylvania's public education efforts connected to Act 83, the state's Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act.

Her advocacy focuses on helping people recognize potential tick-borne disease symptoms, understand prevention strategies, and find supportive resources.

The Financial Burden of Lyme Disease

Anne speaks candidly about the financial challenges many patients face.

Her own treatment journey was expensive, and she describes hearing from people who struggle to afford testing, appointments, treatment, housing, or basic necessities.

She also raises concerns about insurance coverage and access to knowledgeable healthcare professionals.

Rich and Anne agree that patients should not have to face financial devastation while searching for answers.

For Pennsylvania residents seeking community support or practitioner referrals, the PA Lyme Resource Network's patient resources provide a starting point.

The Silver Lyming: A Podcast Dedicated to Hope and Healing

Anne eventually transformed her advocacy into a podcast called The Silver Lyming.

The title reflects her belief that meaningful growth, connection, and purpose can sometimes emerge from extremely difficult experiences.

At the time of this interview, Anne had recently released her 75th episode.

Her podcast features people who share their experiences with Lyme disease, tick-borne infections, chronic illness, and recovery.

Rather than focusing exclusively on symptoms and suffering, Anne seeks out stories that demonstrate different paths toward improved health and renewed purpose.

She believes hearing from people who have made progress can help listeners feel less isolated and more hopeful about their own futures.

Anne also discovered that podcasting benefits the guests themselves.

Several have told her that sharing their experiences publicly helped them process what they had endured.

For Anne, the podcast has become a place where people can speak openly, feel heard, and connect with others who understand.

Listen to The Silver Lyming with Anne Desjardins on Apple Podcasts.

Why Positive Lyme Disease Communities Matter

Rich and Anne discuss the importance of finding supportive spaces during chronic illness.

Both recognize that patients need opportunities to express frustration, grief, anger, and disappointment.

However, Anne explains that when she was seriously ill, she actively searched for stories of people who had improved.

She found those stories encouraging at a time when her future felt uncertain.

Rich emphasizes the value of multiple patient-led podcasts and advocacy platforms.

Different hosts bring different perspectives, ask different questions, and connect with different audiences.

He explains that Tick Boot Camp wants people to discover whatever resources best meet their needs, even when those resources come from another podcast.

Their conversation reinforces an important principle: Community should make people feel seen, supported, and empowered—not pressured to follow someone else's healing journey.

Being surrounded by illness-related discussions does not cause someone to remain sick, but choosing supportive communities can improve emotional well-being.

Finding Purpose After Chronic Illness

Near the end of the interview, Anne and Rich reflect on the relationship between suffering, identity, and purpose.

Anne explains that Lyme disease changed nearly every aspect of her life.

She lost years to debilitating symptoms, but she also developed new relationships, pursued education, became an advocate, and created a platform to support others.

One of her favorite questions to ask podcast guests is what positive change, if any, emerged from their experience with Lyme disease.

The answers vary.

Some people would never choose to experience the illness again. Others recognize meaningful personal growth alongside the suffering.

Anne believes both perspectives deserve space.

Her story demonstrates that finding purpose after illness does not require being grateful for the illness itself.

People can acknowledge profound losses while still discovering new possibilities for their future.

Key Takeaways

• Delayed Lyme disease diagnosis can have far-reaching consequences. Anne experienced years of neurological, cognitive, physical, and emotional symptoms before receiving answers.
• Medical dismissal can deepen isolation. Being told symptoms are caused by stress or depression may leave patients feeling unheard.
• Mental health deserves attention. Anne openly discusses suicidal thoughts, depression, and the emotional toll of prolonged illness.
• Recovery experiences vary. Her journey involved medical treatment, lifestyle changes, integrative practices, and community support.
• Financial barriers remain a major concern. Testing, treatment, and lost income can create serious hardship for patients and families.
• Patient advocacy creates connection. Anne's work with PA Lyme Resource Network helps people access education and support.
• Stories of improvement can inspire hope. Through The Silver Lyming, Anne helps others see that progress and meaningful life changes are possible.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation introduces Anne Desjardins to the Tick Boot Camp community.

Rich and Anne discuss her seven-year diagnostic journey, Lyme disease treatment experiences, mental health struggles, Pennsylvania advocacy work, and the creation of The Silver Lyming podcast.

They also discuss collaborating on future long-form interviews to explore Anne's healing journey in greater depth.

Discover more patient, physician, researcher, and advocate conversations through Tick Boot Camp's LIVE from ILADS podcast series.

What happens when Lyme disease patients develop seizures, neurological symptoms, or serious complications—and the treatments they're receiving aren't working?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reconnects with Dr. Pamela Cipriano, DNP, APRN, a Connecticut nurse practitioner specializing in Lyme disease, tick-borne infections, and complex chronic illness.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, their conversation explores neurological Lyme disease, persistent seizures, suspected autoimmune encephalitis, Bartonella, Babesia, chronic urinary tract infections, and the challenges of caring for patients with complicated medical histories.

Dr. Cipriano shares two neurological case studies involving a 25-year-old man and a 14-year-old girl, discusses why some healthcare professionals hesitate to consider alternative diagnoses, and explains her efforts to improve Lyme disease education.

She also reflects on her personal journey into tick-borne disease medicine, her son's illness, her training with Dr. Richard Horowitz, and her candidacy for the ILADS Board of Directors.

Throughout the conversation, one message stands out: Patients with persistent, unexplained symptoms deserve continued investigation, compassionate care, and healthcare professionals willing to collaborate.

Meet Dr. Pamela Cipriano, DNP, APRN

Dr. Pamela Cipriano is a Connecticut-based advanced practice registered nurse with a Doctor of Nursing Practice degree.

Her professional background includes hospital medicine, critical care, pharmaceutical sales, and the evaluation of patients with Lyme disease and other complex health conditions.

She joined ILADS in 2018 and has attended nearly every annual conference since becoming a member.

Dr. Cipriano explains that ILADS conferences expose her to research and clinical discussions involving tick-borne pathogens, immune function, environmental exposures, and different treatment approaches.

She emphasizes her interest in integrative medicine and individualized patient care.

Her decision to enter the field was deeply personal.

After her son developed significant health problems, including chronic bladder symptoms, she began investigating Lyme disease and associated infections.

That experience ultimately helped shape her professional focus.

Neurological Lyme Disease: Two Patients With Persistent Seizures

One of the most important parts of the interview focuses on two patients featured in Dr. Cipriano's ILADS poster presentation.

The cases involve a 25-year-old man and a 14-year-old girl experiencing serious neurological complications.

Dr. Cipriano describes both patients as having neuroborreliosis-related concerns.

She explains that the patients developed seizures after beginning antibiotic treatment for Lyme disease.

The cases became particularly challenging because the patients continued experiencing neurological symptoms despite receiving anticonvulsant medications.

The 25-year-old patient, she reports, was taking three seizure medications and still experiencing seizures.

Dr. Cipriano began questioning whether an inflammatory or autoimmune neurological process might be contributing to his symptoms.

She discusses researching autoimmune encephalitis and sharing relevant literature with the patients' neurologists.

Could Autoimmune Encephalitis Be Overlooked?

Autoimmune encephalitis occurs when the immune system attacks components of the brain, potentially causing seizures, behavioral changes, memory problems, and other neurological symptoms.

Dr. Cipriano raises concerns that clinicians may sometimes focus on controlling seizures without sufficiently investigating their underlying causes.

She discusses corticosteroids as one possible treatment used for certain inflammatory neurological disorders.

However, persistent seizures do not automatically indicate autoimmune encephalitis or neurological Lyme disease. Both conditions require careful diagnostic evaluation, and corticosteroids are not appropriate for every seizure disorder or infection.

New seizures, prolonged seizures, or repeated seizures without recovery are medical emergencies. Patients should receive prompt neurological evaluation and appropriate treatment.

When Patients and Families Find Support Through Shared Experiences

Dr. Cipriano explains that the two neurological patients eventually met through their treatment schedules.

Although they had not previously known one another, their families began connecting during appointments.

They shared experiences, asked about each other's progress, and developed a sense of understanding.

For families navigating severe neurological illness, these connections can provide meaningful emotional support.

Their experiences also illustrate why community matters when patients face prolonged diagnostic uncertainty.

Knowing another family understands the challenges can reduce isolation, even when their medical situations are different.

Why Some Doctors Hesitate to Explore Unfamiliar Diagnoses

Rich asks Dr. Cipriano why healthcare professionals sometimes resist investigating conditions outside their established areas of expertise.

She believes medical training, professional expectations, and concerns about colleagues' opinions may influence clinical decisions.

Dr. Cipriano reflects on her previous work as a hospitalist and explains that she has always been willing to question established approaches when patients are not improving.

She believes clinicians should remain open to additional evidence and consultation when a treatment plan is unsuccessful.

Rich also discusses the professional and regulatory pressures faced by physicians who treat complicated tick-borne disease cases.

They reference the history of Dr. Joseph Burrascano, whose work in Lyme disease has been influential within the ILADS community.

Their discussion highlights the importance of balancing professional responsibility, patient safety, scientific evidence, and clinical judgment.

A Lyme Disease Education Survey With Only 26 Responses

Dr. Cipriano describes an effort to understand how much local healthcare professionals know about Lyme disease.

She distributed 300 surveys to physicians, nurse practitioners, physician assistants, chiropractors, and naturopathic practitioners.

Only 26 responses were returned.

That represents a response rate of approximately 8.7%.

Dr. Cipriano found the limited participation discouraging.

She also shares that a former colleague contacted her privately to express support for her educational efforts.

The experience reinforced her belief that healthcare professionals need more opportunities to discuss Lyme disease openly and constructively.

Although the response rate does not establish what clinicians know or believe about Lyme disease, it illustrates the challenges Dr. Cipriano encountered while trying to encourage professional engagement.

Why Dr. Cipriano Ran for the ILADS Board of Directors

During the interview, Dr. Cipriano announces that she is running for the ILADS Board of Directors.

Her motivation is to expand membership, improve communication, and encourage more healthcare professionals to participate in Lyme disease education.

She believes her previous career in pharmaceutical sales provides skills that could help.

Before focusing on tick-borne disease care, Dr. Cipriano spent approximately 14 years in pharmaceutical sales and marketing.

She describes working with hospitals and medical decision-makers to explain treatment options and develop professional relationships.

One of the medications she represented was ceftriaxone, commonly known by the brand name Rocephin.

Ceftriaxone is an antibiotic used for certain serious bacterial infections, including selected neurological and cardiac manifestations of Lyme disease.

Dr. Cipriano believes her communication experience could help ILADS reach healthcare professionals who are unfamiliar with its work.

Her goal is to build relationships rather than create confrontation.

She wants clinicians to better understand the experiences of patients with complex tick-borne illnesses and the research being discussed within the ILADS community.

From Her Son's Illness to Lyme Disease Practitioner

Dr. Cipriano explains that she began treating Lyme disease around 2017.

Her son's illness played a major role in that transition.

Initially, she focused on Lyme disease after his testing identified Borrelia.

When his symptoms did not improve as expected, she began considering other possible infections.

She later pursued additional education through ILADS and trained with Dr. Richard Horowitz, MD.

Dr. Cipriano credits that training with helping her develop a broader approach to evaluating patients with complicated symptoms.

She also discusses her son's reported improvement after treatment that addressed suspected additional infections.

His experience remains a personal clinical account and does not establish that every patient with persistent Lyme disease symptoms has Bartonella or Babesia.

The Three Bs and Four Bs of Tick-Borne Illness

Rich and Dr. Cipriano discuss how the Lyme disease community increasingly talks about multiple infections rather than Borrelia alone.

They reference the three Bs:

• Borrelia: The bacteria responsible for Lyme disease
• Bartonella: A group of bacteria associated with several human infections
• Babesia: Parasites that infect red blood cells and cause babesiosis

Dr. Cipriano also mentions a fourth category involving other Borrelia species associated with tick-borne relapsing fever.

She reports encountering more patients with laboratory findings suggesting multiple infections.

Rich asks whether this reflects improvements in testing, increased clinical awareness, or changes in tick-borne pathogen exposure.

Dr. Cipriano believes several factors may be involved.

However, the presence of multiple microorganisms in ticks does not mean every organism can infect humans or that every tick bite transmits multiple diseases.

Appropriate testing should be guided by symptoms, exposure history, geography, and validated diagnostic methods.

Parasites, Specialty Laboratories, and Diagnostic Challenges

Dr. Cipriano describes patients who have presented with suspected parasitic infections.

She discusses the challenges of identifying organisms through laboratory testing and her experience seeking additional evaluations when initial results were inconclusive.

She also raises concerns about the cost of specialty testing, particularly when patients must pay out of pocket.

Her examples include suspected intestinal parasites and other organisms that require identification by qualified laboratories.

During the conversation, Dr. Cipriano expresses her belief that some of these infections may be associated with tick exposure.

Identifying a suspected parasite requires appropriate clinical evaluation and laboratory confirmation. Visual appearance alone may not establish a diagnosis.

The discussion illustrates the frustration patients and clinicians can experience when trying to understand unusual or difficult-to-identify findings.

Mold, Heavy Metals, and Environmental Testing

Dr. Cipriano also discusses evaluating patients for possible environmental exposures.

She mentions mold-related concerns, mycotoxins, and heavy metals as areas she considers in selected cases.

She explains that different laboratories use different testing methods and that she sometimes turns to specialty laboratories when investigating complicated presentations.

However, the accuracy and clinical usefulness of tests vary.

Urine mycotoxin testing is not established as a reliable method for diagnosing illness caused by indoor mold exposure, and heavy metal testing should be selected according to credible exposure history and validated medical standards.

The interview underscores the importance of interpreting laboratory findings carefully rather than assuming every positive result identifies the cause of a patient's symptoms.

Caring for Patients Other Practitioners Consider Too Complicated

Dr. Cipriano shares that some patients arrive after being turned away by other healthcare professionals.

She recalls a mother who contacted numerous Lyme disease practitioners before finding someone willing to evaluate her adult child's complicated case.

Dr. Cipriano explains that her background in critical care has made her comfortable working with medically complex patients.

She also acknowledges the significant time commitment involved.

Her patients may require extensive follow-up, ongoing reassessment, and coordination with other specialists.

She describes working long days and frequently thinking about difficult cases outside normal office hours.

Her commitment reflects a central theme of the conversation: patients with complicated illnesses need clinicians who are willing to investigate, communicate, and continue reassessing their care.

Looking Ahead: Better Education and More Hope for Patients

Near the end of the interview, Rich asks Dr. Cipriano what she hopes will change over the following year.

She expects to encounter more patients with complex illnesses and hopes to continue expanding her educational outreach.

Most importantly, she wants fewer patients to hear that their symptoms are simply imagined.

She encourages healthcare professionals to remain curious, seek additional education, and acknowledge when a condition falls outside their expertise.

Dr. Cipriano also discusses sharing information through her website, social media, and YouTube channel.

She clarifies that she does not currently host her own podcast but participates in interviews with other organizations.

Rich encourages her to continue sharing her perspective because patients benefit from hearing different voices within the medical community.

Their conversation ends with a shared hope for greater understanding, collaboration, and improved access to knowledgeable care.

Key Takeaways

• Neurological symptoms deserve careful evaluation. Dr. Cipriano discusses two patients with persistent seizures and suspected inflammatory neurological complications.
• Autoimmune encephalitis is an important differential diagnosis. Certain patients with unexplained seizures may require investigation beyond routine epilepsy management.
• Professional education remains a challenge. Her Lyme disease survey received 26 responses from 300 invitations.
• ILADS plays an important role in her career. She has been a member since 2018 and was running for its Board of Directors at the time of the interview.
• Her son's illness influenced her medical career. Personal experience led her to pursue additional training in Lyme disease and associated infections.
• Tick-borne illnesses extend beyond Borrelia. The discussion includes Bartonella, Babesia, and tick-borne relapsing fever.
• Unusual laboratory findings require careful interpretation. Specialty testing can be useful in selected situations, but accuracy and clinical validation matter.
• Patients with complex symptoms deserve compassionate care. Dr. Cipriano emphasizes persistence, communication, and continued investigation when appropriate.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

Rich welcomes Dr. Pamela Cipriano back to Tick Boot Camp for a discussion about neurological Lyme disease, persistent seizures, suspected autoimmune encephalitis, tick-borne co-infections, diagnostic challenges, and medical advocacy.

The interview also explores the professional pressures facing Lyme disease practitioners and Dr. Cipriano's efforts to expand education through ILADS.

Explore more interviews with healthcare professionals, researchers, and advocates through Tick Boot Camp's LIVE from ILADS podcast series.

Could overlooked environmental bacteria, immune dysfunction, and mitochondrial health help explain why some Lyme disease patients remain sick despite years of treatment?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich welcomes back Jacquelyn “Jacki” Meinhardt, DNP, FNP-BC, a nurse practitioner at Amen Clinics in Northern Virginia, to explore the complex relationship between Lyme disease, tick-borne co-infections, environmental exposures, inflammation, and persistent symptoms.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why some patients struggle to improve after seeing numerous healthcare professionals—and why listening, comprehensive evaluation, and patient-centered care are so important.

Jacki discusses medical gaslighting, the growing recognition of Anaplasma and Ehrlichia infections, cardiovascular complications of tick-borne diseases, and an often-overlooked environmental concern: actinomycetes, a group of bacteria that can be found in indoor environments.

She also previews her work on mitochondrial medicine, including cellular energy production, NAD metabolism, inflammation, and the possible relationship between mitochondrial dysfunction and chronic fatigue.

Throughout the interview, Jacki emphasizes a principle that resonates deeply with the Lyme disease community: Patients deserve to be heard, believed, and thoroughly evaluated—even when their symptoms remain unexplained.

Meet Jacquelyn “Jacki” Meinhardt, DNP, FNP-BC

Jacquelyn “Jacki” Meinhardt is a doctorally prepared, board-certified family nurse practitioner whose clinical interests include neuroinflammation, immune dysfunction, tick-borne infections, environmental illness, and complex chronic health conditions.

At the time of this interview, she had worked at Amen Clinics in Northern Virginia, outside Washington, D.C., for approximately four years.

Jacki also teaches at Georgetown University, bringing her clinical and academic experience to discussions about medical education and emerging research.

During the interview, she shares that she had been nominated for the ILADS Board of Directors.

Since this conversation was recorded, Jacki has joined the ILADS Board, becoming its first nurse practitioner board member.

Her involvement reflects her interest in expanding interdisciplinary collaboration, improving education, and helping healthcare professionals better understand patients with complex chronic illnesses.

Learn more about her work through her Amen Clinics professional profile.

Why Some Patients Remain Sick After Seeing 20 Doctors

Jacki explains that many patients arrive at Amen Clinics after extensive medical journeys.

Some have consulted as many as 20 healthcare professionals, including functional medicine practitioners, without achieving meaningful improvement.

They may have undergone numerous laboratory tests, received multiple diagnoses, and tried different treatment plans.

Rather than immediately recommending another intervention, Jacki begins by asking questions.

She reviews previous testing, medical history, symptoms, treatment responses, and possible environmental exposures.

Her goal is to identify what may have been overlooked.

She also emphasizes the importance of treatment sequencing.

Sometimes patients have received several reasonable recommendations, but Jacki believes the order in which interventions are introduced may affect how well they tolerate or respond to care.

Her approach focuses on understanding the individual patient's circumstances rather than automatically adding more treatments.

Medical Gaslighting, Medical Trauma, and the Power of Being Believed

One of the most meaningful moments in the interview occurs when Jacki discusses the emotional consequences of prolonged diagnostic uncertainty.

She describes patients who have repeatedly been told that their test results are normal or that nothing is medically wrong.

After years of symptoms and unsuccessful treatments, some become fearful that another healthcare professional will dismiss their concerns.

Jacki describes this experience as a form of medical trauma.

She explains that one of the first things she tells patients is:

“I believe you.”

That reassurance can help patients feel safe enough to share their experiences and participate in a productive medical conversation.

Rich asks whether medical gaslighting always involves intentional dismissal or whether some situations reflect limitations in medical education and diagnostic tools.

Jacki emphasizes education rather than assigning blame.

She believes healthcare professionals can improve patient care by communicating more effectively, remaining curious, and recognizing the limitations of their knowledge.

The discussion reinforces an important message: Unexplained symptoms are still real symptoms, and patients deserve compassionate medical attention.

Immune Dysfunction: Finding Common Ground Across Medical Specialties

Jacki explains that she frequently uses the term immune dysfunction when communicating with clinicians who may be unfamiliar with some of the terminology used in Lyme disease and environmental medicine.

Rather than beginning with a discussion of Borrelia, Bartonella, Babesia, mold, or other specific organisms, she focuses on how the immune system may be functioning.

She believes this approach creates opportunities for collaboration across medical specialties.

Jacki also discusses how the COVID-19 pandemic increased public awareness of immune responses, inflammation, and cytokines.

She views the resulting research and medical conversations as opportunities to improve understanding of other complex illnesses.

However, immune dysfunction is a broad concept, not a single diagnosis. Specific immune disorders require appropriate clinical evaluation, and not every chronic symptom is caused by an abnormal immune response.

Lyme Disease Co-Infections: Beyond Borrelia, Bartonella, and Babesia

Rich asks Jacki whether she is seeing changes in the types of infections identified among patients with Lyme disease.

He describes Tick Boot Camp's observations of patients reporting combinations of Borrelia, Bartonella, and Babesia.

Jacki explains that she has considered multiple tick-borne infections in her clinical evaluations for many years.

She also discusses other pathogens that may be relevant depending on a patient's symptoms and exposure history.

These include:

• Borrelia: Bacteria responsible for Lyme disease and certain relapsing fever illnesses
• Babesia: Parasites that infect red blood cells and cause babesiosis
• Bartonella: Bacteria associated with several human diseases
• Anaplasma: Bacteria responsible for anaplasmosis
• Ehrlichia: Bacteria responsible for ehrlichiosis
• Rickettsia: Bacteria associated with spotted fever illnesses, including Rocky Mountain spotted fever

Jacki reports encountering more Anaplasma and Ehrlichia in her practice over the preceding two years.

She acknowledges that she cannot determine whether this reflects changing infection patterns, improved diagnostic testing, or increased clinical awareness.

Her experience highlights the importance of considering other tick-borne infections when a patient's history and symptoms warrant investigation.

It does not mean that every person with Lyme disease has multiple infections.

Cardiovascular Symptoms and Tick-Borne Disease

Jacki discusses her interest in cardiovascular and circulatory health.

She explains that when evaluating patients with certain cardiac abnormalities, she considers whether an infectious disease could be contributing to their symptoms.

The conversation includes heart block, atrial fibrillation, and tick-borne infections that may require further investigation.

Lyme carditis is a recognized complication of Lyme disease that can disrupt electrical signaling in the heart.

Other tick-borne infections may also produce serious systemic complications.

Jacki emphasizes reviewing which infections have already been investigated and whether additional testing is appropriate.

New chest pain, fainting, significant palpitations, or suspected heart block require prompt medical attention.

For another discussion of Lyme disease's neurological and cardiovascular effects, explore Tick Boot Camp's interview with Dr. Medeya Tsnobiladze.

Environmental Actinomycetes: Could There Be More Than Mold in Water-Damaged Buildings?

One of the most distinctive parts of this interview focuses on environmental actinomycetes.

Jacki explains that patients investigating building-related health concerns frequently focus on mold.

However, she believes certain bacteria present in indoor environments deserve additional attention.

Actinomycetes are a diverse group of bacteria found in soil, water, and other environments. Some are also normal members of the human microbiome.

Jacki discusses how these organisms can enter buildings through shoes, clothing, pets, and ordinary outdoor exposure.

She explains that moisture and environmental conditions may influence microbial growth.

Her clinical interest includes evaluating possible environmental exposures in patients with persistent symptoms and complex medical histories.

Actinomycetes, Biofilms, and Indoor Environments

Jacki describes actinomycetes as organisms capable of contributing to biofilm formation under certain conditions.

She discusses how investigating bacterial contamination may differ from evaluating fungal contamination.

She also references research she reports publishing with Dr. Ritchie Shoemaker in 2019 concerning environmental organisms and chronic inflammatory illness.

According to Jacki, understanding these exposures may help clinicians investigate cases where patients continue experiencing symptoms after addressing suspected mold problems.

She also describes considering culture results from different body sites when evaluating selected patients.

Scientific context: The presence of actinomycetes in a building or clinical sample does not automatically establish that they are causing illness. Their proposed role in chronic inflammatory conditions remains under investigation, and laboratory findings require careful interpretation.

Mold, Environmental Testing, and Chemical Sensitivities

Jacki explains that she considers the patient's broader environment when reviewing complicated cases.

Homes, schools, and workplaces can have different environmental conditions, including moisture problems, microbial contamination, and other potential exposures.

Some patients arrive with previous environmental testing results that may need further interpretation.

Jacki believes clinicians should review these findings alongside medical history and symptoms rather than assuming a single exposure explains every health problem.

She also discusses how certain patients report sensitivity to fragrances or cleaning products.

For these individuals, she emphasizes considering cleaning methods and product tolerability when developing practical recommendations.

The conversation illustrates the importance of investigating documented environmental problems without assuming that every detected organism represents a health hazard.

Mitochondrial Medicine: Understanding Energy Production and Chronic Fatigue

Near the end of the interview, Jacki reveals that she is preparing to present on mitochondrial medicine at ILADS.

Mitochondria are cellular structures responsible for producing much of the energy used by the body.

Jacki is interested in how energy metabolism may relate to inflammation, vascular health, and persistent symptoms.

Her presentation explores:

• Mitochondrial function and cellular energy production
• The Krebs cycle
• Pyruvate and lactate metabolism
• NAD and its role in cellular processes
• Endothelial function and blood vessel health
• Inflammatory signaling and metabolic changes

Rich connects this discussion to the profound fatigue frequently reported by people living with Lyme disease.

Jacki believes research into cellular energy pathways may help clinicians better understand some aspects of complex chronic illness.

However, fatigue has many possible causes. It cannot automatically be attributed to mitochondrial dysfunction, and research into energy metabolism does not establish that NAD supplementation or other mitochondrial therapies treat Lyme disease.

Why Medical Education Must Evolve Faster

Jacki expresses frustration that new research findings can take years to reach everyday clinical practice.

She believes physicians, nurse practitioners, physician assistants, and other healthcare professionals need opportunities to learn about emerging evidence more quickly.

Her involvement with ILADS reflects that commitment to continuing education.

Rich agrees that greater collaboration between clinicians, researchers, and advocates can improve awareness and patient care.

Their conversation emphasizes the importance of evaluating new research carefully while helping healthcare professionals remain informed about developments relevant to complex chronic illness.

Key Takeaways

• Patients deserve validation. Jacki emphasizes listening carefully to people who have experienced years of medical dismissal.
• Complex cases require comprehensive evaluation. Reviewing medical history, previous testing, and environmental exposures may reveal overlooked information.
• Immune dysfunction is an important area of investigation. Understanding specific immune abnormalities requires appropriate medical assessment.
• Tick-borne infections extend beyond Lyme disease. Jacki discusses Babesia, Bartonella, Anaplasma, Ehrlichia, and other infections.
• Cardiovascular symptoms warrant careful attention. Certain tick-borne infections can cause serious cardiac complications.
• Environmental actinomycetes are an emerging research topic. Their proposed relationship with chronic inflammatory illness requires further validation.
• Mitochondrial health may provide insights into persistent fatigue. Research into cellular energy metabolism continues to evolve.
• Medical education can help improve care. Jacki advocates for collaboration, research awareness, and better communication across specialties.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

Rich welcomes Jacquelyn “Jacki” Meinhardt, DNP, FNP-BC, back to Tick Boot Camp to discuss Lyme disease, immune dysfunction, environmental actinomycetes, and mitochondrial medicine.

During the interview, Jacki discusses her nomination to the ILADS Board of Directors. She has since joined the board, becoming its first nurse practitioner member.

Explore more conversations with physicians, researchers, and advocates through Tick Boot Camp's LIVE from ILADS interview series.

What if treating Lyme disease is only part of the recovery process—and the next frontier is helping the body repair the damage left behind?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Todd Maderis, ND, founder of Marin Natural Medicine Clinic in Northern California, to explore what he calls “Lyme 3.0”—an evolving approach to complex chronic illness that looks beyond infections to consider immune function, environmental exposures, cellular repair, and long-term recovery.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why some patients continue experiencing fatigue, brain fog, and neurological symptoms even after receiving treatment for Lyme disease and associated infections.

Dr. Maderis discusses the challenges of diagnosing multiple tick-borne infections, the possible roles of mold exposure and heavy metals, the relationship between long COVID and viral reactivation, and how his approach to treating complex chronic illness has evolved since 2012.

The interview also examines emerging diagnostic technologies, including testing from IGeneX, T-Lab, and Galaxy Diagnostics, along with Babesia, Bartonella, alpha-gal syndrome, and practical strategies for preventing tick bites.

His central message: Recovery may require more than identifying and treating infections. For some patients, understanding the factors contributing to persistent symptoms and supporting rehabilitation may be equally important.

Meet Dr. Todd Maderis, ND

Dr. Todd Maderis, ND is the founder and medical director of Marin Natural Medicine Clinic in Marin County, California, just north of San Francisco.

He began focusing on Lyme disease and tick-borne infections in 2012.

Over time, his practice expanded to include patients with complicated medical histories involving several overlapping health conditions.

His areas of clinical interest include:

• Lyme disease, Babesia, Bartonella, and other tick-borne infections
• Mold-related illness and environmental exposures
• Mast cell activation syndrome (MCAS)
• Chronic viral infections, including Epstein-Barr virus (EBV)
• Long COVID
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Autoimmune conditions
• Persistent fatigue, pain, and cognitive symptoms

Dr. Maderis explains that his approach has evolved as he has encountered patients with increasingly complicated combinations of symptoms and diagnoses.

He also shares research and educational information through social media to help patients better understand emerging developments in complex chronic illness.

What Is Lyme 3.0?

One of the most compelling parts of this conversation is Dr. Maderis's explanation of how Lyme disease treatment has evolved.

He describes three stages in the development of his clinical thinking.

Lyme 1.0: Focusing on the Infection

Early treatment approaches primarily emphasized identifying and treating the infectious organisms responsible for Lyme disease and associated conditions.

Dr. Maderis explains that clinicians initially focused heavily on reducing the infectious burden.

Antimicrobial treatment remains essential when a patient has an active infection requiring treatment.

However, he began questioning whether infection-focused interventions alone could explain every patient's ongoing symptoms.

Lyme 2.0: Recognizing Additional Health Conditions

As his practice evolved, Dr. Maderis increasingly evaluated patients for other medical problems occurring alongside tick-borne infections.

These included mold-related concerns, mast cell activation syndrome, chronic viral infections, and autoimmune conditions.

He describes learning about mold-related illness at an ILADS conference around 2013 as a turning point in his clinical career.

That presentation encouraged him to consider environmental exposures in patients whose symptoms were not fully explained by their existing diagnoses.

Lyme 3.0: Recovery, Repair, and Rehabilitation

Dr. Maderis believes the next stage involves understanding what patients may need after appropriate treatment of infections and other identified medical conditions.

He points to people who continue experiencing symptoms such as:

• Persistent fatigue
• Brain fog and cognitive difficulties
• Reduced physical endurance
• Neurological complaints
• Difficulty returning to previous activities

He discusses cellular and mitochondrial health as areas of interest when considering why some patients struggle to regain their previous level of functioning.

His concept of Lyme 3.0 emphasizes the importance of rehabilitation and recovery rather than viewing treatment exclusively as an effort to eliminate pathogens.

This is Dr. Maderis's framework, not an established medical classification or a validated treatment protocol. Persistent symptoms after Lyme disease treatment can have multiple causes and require individualized medical evaluation.

Why Some Lyme Patients Have Multiple Contributing Health Problems

Rich asks Dr. Maderis why clinicians appear to be identifying more complicated cases involving several infections or overlapping medical conditions.

Dr. Maderis believes several developments may be contributing to this observation.

Diagnostic technologies have evolved, clinicians have become more aware of tick-borne co-infections, and geographic patterns of tick exposure continue to change.

He also discusses environmental exposures and the possible effects of other illnesses on immune function.

Dr. Maderis groups the factors he considers into three broad categories:

Infectious factors: Tick-borne infections and other clinically relevant infectious diseases.

Environmental factors: Mold exposure, toxic metals, and other exposures that may warrant investigation.

Traumatic factors: Physical injuries, including head trauma, and psychological stress or trauma that may affect health and recovery.

He explains that some patients arrive with several potential contributing conditions rather than one straightforward diagnosis.

His challenge is determining which findings are clinically significant and which require treatment.

The conversation highlights why complex cases benefit from careful differential diagnosis rather than assuming every symptom has the same underlying cause.

Lyme Disease, Long COVID, and Epstein-Barr Virus Reactivation

Rich and Dr. Maderis discuss whether COVID-19 can influence previously controlled infections.

Dr. Maderis references research investigating the relationship between SARS-CoV-2 infection, immune changes, and Epstein-Barr virus reactivation.

Some studies have identified associations between EBV reactivation markers and long COVID.

He raises the possibility that changes in immune function following COVID-19 could also affect other infections.

However, the extent to which SARS-CoV-2 may cause reactivation of Borrelia infection remains uncertain.

The discussion illustrates an important research question: How do multiple infections and immune responses interact in patients experiencing prolonged symptoms?

Dr. Maderis believes clinicians should remain aware of emerging findings while recognizing that the science continues to develop.

Why a Positive Lyme Antibody Test Doesn't Always Mean Active Infection

Rich and Dr. Maderis discuss the distinction between detecting an infection and detecting evidence of a previous immune response.

Antibody tests measure the immune system's response to an organism rather than directly identifying whether that organism is currently present.

Antibodies against Borrelia can remain detectable for months or years after successful treatment.

This means a positive antibody test does not necessarily establish an active infection.

Conversely, testing early in an infection can produce negative results before detectable antibodies have developed.

Dr. Maderis believes clinicians must interpret results alongside symptoms, medical history, exposure risk, and other clinical findings.

This distinction is particularly important for patients who undergo repeated testing while trying to understand persistent symptoms.

Advanced Lyme Disease and Co-Infection Testing

Dr. Maderis explains that he uses several specialty laboratories when evaluating patients for Lyme disease and associated infections.

He discusses how different testing methods may provide different types of information.

IGeneX: Lyme Disease and Co-Infection Panels

Dr. Maderis describes IGeneX as one of the foundational laboratories he uses when evaluating patients for tick-borne infections.

The laboratory offers testing for Lyme disease and several associated infections.

He explains that he frequently orders comprehensive panels during initial evaluations when the patient's history supports investigation for multiple tick-borne pathogens.

T-Lab: Direct Detection Methods

Dr. Maderis also discusses T-Lab, which uses specialized microscopy and molecular methods intended to detect organisms more directly.

He contrasts these methods with antibody-based testing.

The potential advantage of direct detection is that it attempts to identify evidence of the organism rather than relying solely on the patient's antibody response.

However, the diagnostic accuracy, clinical validation, and appropriate use of individual specialty tests must be evaluated carefully.

Galaxy Diagnostics: Bartonella Testing

Dr. Maderis identifies Galaxy Diagnostics as another laboratory he uses, particularly when investigating Bartonella infection.

He discusses the laboratory's expanded Bartonella testing methods and describes a patient whose infection was detected after earlier testing through other laboratories had been negative.

This experience reinforced his belief that different testing methods may sometimes produce different findings.

For a deeper exploration of Bartonella diagnostics, Tick Boot Camp previously interviewed Nicole Bell of Galaxy Diagnostics about the challenges of detecting tick-borne infections.

No single test can definitively diagnose or exclude every tick-borne disease. Patients should work with qualified clinicians to determine which tests are appropriate and how results should be interpreted.

Mold Exposure, Mycotoxins, and Chronic Illness

Dr. Maderis explains that environmental medicine became an increasingly important part of his practice after attending an ILADS presentation on mold-related illness.

He now considers environmental exposures when evaluating selected patients with complicated symptoms.

The interview distinguishes between investigating a patient's environment and assessing possible exposures within the body.

Testing the Home for Mold

When a patient's history suggests possible mold exposure, Dr. Maderis may recommend an initial home screening.

Depending on the findings, he may suggest a more thorough evaluation by a qualified environmental professional.

The conversation emphasizes identifying possible sources of exposure rather than relying exclusively on medical testing.

Urine Mycotoxin Testing

Dr. Maderis explains that he uses urine mycotoxin testing in his practice.

Mycotoxins are substances produced by certain molds, and exposure can occur through different environmental and dietary sources.

However, the clinical usefulness of urine mycotoxin testing for diagnosing mold-related illness remains uncertain. Such tests are not established as reliable diagnostic tools for determining whether a person's symptoms are caused by indoor mold exposure.

A comprehensive assessment should consider exposure history, environmental conditions, symptoms, and established medical diagnoses.

Heavy Metals, Immune Function, and Environmental Testing

Dr. Maderis also discusses exposure to toxic metals, particularly lead and mercury.

He explains that certain metals can remain in the body long after an exposure has ended.

Lead and mercury can produce significant health effects, including neurological and other systemic complications.

Dr. Maderis considers these exposures when a patient's history or symptoms suggest they may be relevant.

He also acknowledges an important limitation: clinicians cannot routinely test for every chemical encountered in the environment.

The discussion reinforces the importance of selecting tests based on credible exposure history and established clinical indications.

Suspected toxic metal exposure should be evaluated using validated testing methods. Unnecessary testing or unproven detoxification treatments can create additional risks.

Babesia on the East Coast and West Coast

Rich asks Dr. Maderis whether he has noticed changes in Babesia infections among his California patients.

Dr. Maderis explains that clinicians historically associated Babesia microti more strongly with the eastern United States and Babesia duncani with the West Coast.

However, he believes geographic assumptions can be misleading.

He reports encountering different Babesia species in his practice and mentions growing clinical interest in Babesia odocoilei.

Rich shares that he has also observed more Babesia-related concerns in the Lyme disease community on Long Island.

Their discussion highlights the importance of considering geography, travel history, tick exposure, and appropriate diagnostic methods.

Babesiosis is a potentially serious tick-borne disease, particularly for older adults and people with weakened immune systems.

The geographic distribution and human disease significance of individual Babesia species vary, and emerging laboratory findings should not be confused with established population-level prevalence data.

Alpha-Gal Syndrome and the Lone Star Tick

The conversation shifts to alpha-gal syndrome, a potentially serious allergic condition associated with sensitization to a sugar molecule called alpha-gal.

In the United States, alpha-gal syndrome is strongly associated with bites from lone star ticks.

Affected individuals may experience delayed allergic reactions after consuming certain mammalian meat products or encountering other alpha-gal-containing substances.

Dr. Maderis explains that he had not encountered a confirmed case in his California practice at the time of the interview.

Rich contrasts that experience with the prevalence of lone star ticks on Long Island and in other parts of the eastern United States.

They also discuss reports of alpha-gal syndrome on Martha's Vineyard and the possibility of changing tick distributions.

Because alpha-gal syndrome can cause severe allergic reactions, suspected cases should be evaluated by an appropriately qualified healthcare professional.

Could Genetically Modified Mice Help Prevent Lyme Disease?

Rich asks Dr. Maderis about a proposed strategy involving genetically modified mice on Martha's Vineyard.

The idea involves altering the relationship between mice, ticks, and Borrelia bacteria to potentially reduce the transmission of Lyme disease.

Mice are important reservoir hosts for certain tick-borne pathogens, making them a focus of disease-prevention research.

Dr. Maderis expresses concern about introducing genetically modified animals into the environment.

He favors emphasizing established prevention strategies and public education.

This exchange illustrates the broader debate surrounding emerging environmental approaches to reducing tick-borne disease risk.

Potential ecological interventions require careful scientific evaluation, environmental oversight, and community engagement.

How to Perform a Thorough Tick Check

The interview concludes with one of its most practical discussions: preventing tick bites.

Dr. Maderis and Rich agree that regular tick checks are an important part of reducing exposure to tick-borne diseases.

Rich explains that he checks himself twice daily and emphasizes the importance of using both sight and touch.

Dr. Maderis recommends examining the entire body after outdoor activities, particularly when spending time in wooded, grassy, or other tick-prone environments.

Important areas to inspect include:

• Behind the knees
• Under the arms
• Around the waist and groin
• Behind and inside the ears
• Along the scalp and hairline
• Around the back and other hard-to-see areas

Children may need help from a parent or caregiver, while adults can benefit from a partner checking areas they cannot easily inspect.

A shower after outdoor exposure can help remove unattached ticks and provides an opportunity for a thorough examination.

Rich also describes using his fingertips to feel for small attached ticks that might be difficult to see.

If you find an attached tick, remove it promptly with fine-tipped tweezers, grasping it close to the skin and pulling upward with steady pressure.

For a step-by-step guide to prevention, removal, and what to do after a bite, explore the Tick Boot Camp Tick Bite Blueprint.

Key Takeaways

• Lyme 3.0 emphasizes recovery and repair. Dr. Maderis believes some patients need additional evaluation and rehabilitation after treatment of identified infections.
• Complex chronic illness may involve overlapping conditions. Tick-borne infections, environmental exposures, and other diagnosed medical problems can complicate evaluation.
• Long COVID and viral reactivation remain important research topics. Their relationship with persistent symptoms continues to be investigated.
• Testing methods have different strengths and limitations. Dr. Maderis discusses antibody-based testing, direct detection, and specialty laboratories.
• Mold and toxic metal exposures warrant evidence-based assessment. Testing should be guided by medical history and validated methods.
• Babesia and alpha-gal syndrome deserve greater awareness. Tick-borne health risks vary by geography and exposure.
• Persistent symptoms deserve careful evaluation. Continued fatigue or cognitive difficulties do not automatically establish ongoing infection.
• Prevention remains essential. Regular tick checks and prompt tick removal can reduce the risk of tick-borne illness.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

Rich interviews Dr. Todd Maderis about his evolving approach to Lyme disease and complex chronic illness, including infection-focused treatment, environmental medicine, diagnostic testing, and rehabilitation.

The discussion also explores the changing landscape of tick-borne infections and the importance of public education.

Discover more interviews with physicians, researchers, and advocates through Tick Boot Camp's LIVE from ILADS podcast series.

What happens when a Lyme disease doctor realizes she can only help so many patients in her office—but millions of people need better information, more treatment options, and access to knowledgeable healthcare professionals?

For Dr. Myriah Hinchey, ND, the answer has been to build something bigger than her medical practice.

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reconnects with Dr. Hinchey to discuss how she is expanding Lyme disease education and patient support through her Connecticut naturopathic practice, LymeCore Botanicals, the LymeBytes Symposium, and a new educational course.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, their conversation explores herbal medicine for Lyme disease and co-infections, integrative approaches to complex chronic illness, the importance of continuing medical education, and the challenges of making specialized healthcare accessible.

Dr. Hinchey also shares why she created her own botanical medicine company, how her conference connects patients with nonprofit organizations and healthcare professionals, and why she believes education can reach people who may never be able to schedule an appointment with her.

The conversation raises an important question: How can one healthcare professional help thousands of people without personally treating every patient?

Meet Dr. Myriah Hinchey, ND

Dr. Myriah Hinchey is a Connecticut-licensed naturopathic physician specializing in Lyme disease, tick-borne infections, and complex chronic illness.

She is the medical director of TAO: Center for Vitality, Longevity & Optimal Health in Hebron, Connecticut.

Her clinical work focuses on patients experiencing complicated, often infection-associated health problems.

During the interview, Dr. Hinchey explains that her multidisciplinary practice includes:

• Naturopathic medicine
• Lyme-informed psychotherapy
• Acupuncture
• Massage therapy
• Support for patients with complex chronic illness

She works alongside fellow naturopathic physician Dr. Marisa Hauser, who also focuses on Lyme disease, co-infections, and related health concerns.

Beyond her clinical practice, Dr. Hinchey is the founder of LymeCore Botanicals and LymeBytes, an educational platform that brings together healthcare professionals, patients, researchers, and advocacy organizations.

Her professional work reflects a philosophy of combining individualized patient care with broader educational initiatives intended to reach the Lyme disease community.

Why Dr. Hinchey Continues Attending ILADS

Rich begins by asking why Dr. Hinchey regularly participates in ILADS conferences.

Her answer centers on the importance of continuous learning.

Even though her clinical approach may differ from those of other practitioners, she believes healthcare professionals need to understand emerging research and the treatments their colleagues are using.

She explains that patients frequently arrive having already tried different protocols or therapies.

Understanding those approaches allows clinicians to evaluate previous treatments, identify potential problems, and make more informed recommendations.

Dr. Hinchey also believes no practitioner has every answer.

Even after years of clinical experience, she says she regularly learns something new from educational presentations that helps her reconsider a difficult patient case.

For her, attending conferences is not simply about learning new protocols. It is about expanding the clinical knowledge available to patients who have complicated medical histories.

Why She Created LymeCore Botanicals

One of the most interesting parts of this interview is the origin of LymeCore Botanicals, the herbal medicine company Dr. Hinchey co-founded.

She explains that the business began more than a decade before this interview because she was frustrated by inconsistent access to the medicinal herbs she used in her practice.

Her primary concern was supply reliability.

When a clinician develops an individualized treatment plan using botanical products, inconsistent availability can make it difficult to maintain that plan.

Dr. Hinchey wanted greater confidence in the sourcing, purity, potency, and consistency of the herbs available to her patients.

Over time, the project expanded into developing formulations based on her clinical experience and treatment philosophy.

What began as a practical solution for her own patients eventually grew into a resource used by other healthcare professionals.

The Role of Herbal Medicine in Her Clinical Approach

Dr. Hinchey discusses botanical medicine as one component of her integrative approach to Lyme disease and co-infections.

She believes herbal formulations may play a role in addressing different aspects of complex chronic illness, including infection-related concerns and broader physiological dysfunction.

Her approach emphasizes considering the patient's overall condition rather than focusing exclusively on antimicrobial treatment.

However, herbal products vary considerably in their ingredients, quality, evidence, and potential risks.

Some botanical compounds have demonstrated antimicrobial activity in laboratory studies, but these findings do not establish that herbal protocols can cure Lyme disease in humans.

Patients should review supplements with qualified healthcare professionals, particularly when taking prescription medications or managing complicated medical conditions.

The LymeBytes Symposium: Bringing the Lyme Community Together

Dr. Hinchey explains that she created LymeBytes after discovering that nonprofit organizations were helping patients pay for treatment, yet many people—including experienced clinicians—did not know those resources existed.

She wanted to create an event that would connect several important parts of the Lyme disease community.

Her vision included three major goals.

1. Connect patients with nonprofit resources

Dr. Hinchey wanted organizations providing financial assistance, education, and other support to become more visible to people who might benefit from their services.

She also wanted to create opportunities to raise money for these organizations.

2. Provide practical medical education

Rather than focusing exclusively on research presentations, she wanted clinicians to leave with information they could apply in practice.

Her goal was to bring together experienced speakers who could discuss clinical approaches, patient management, and emerging treatment considerations.

3. Introduce patients and practitioners to additional resources

The symposium includes companies and organizations involved in diagnostic testing, nutritional supplements, and complementary interventions.

Dr. Hinchey mentions hyperbaric oxygen therapy, red light therapy, far-infrared saunas, and other supportive modalities as examples of topics represented at the event.

These therapies have varying levels of scientific support and should not be assumed to be effective treatments for Lyme disease.

From a Lyme Conference to a Broader Chronic Illness Symposium

Dr. Hinchey explains that LymeBytes initially focused on Lyme disease and associated tick-borne infections.

Over time, she expanded its educational scope to address other complex health conditions and overlapping symptom presentations.

These include:

• Long COVID
• Mold-related illness
• PANS and PANDAS
• Immune system dysfunction
• Complex chronic infection-associated conditions
• Neurological and inflammatory symptoms

She believes clinicians benefit from examining these conditions together because some patients experience overlapping symptoms or multiple diagnoses.

The symposium is designed for healthcare professionals as well as patients who want to become more informed participants in their medical care.

2026 event update: The next LymeBytes Symposium is scheduled for November 13–14, 2026, in the Fort Lauderdale/Pompano Beach area of Florida, with in-person and virtual attendance options.

Why Education Matters When Doctors Have Long Waiting Lists

Rich raises a challenge that affects many patients seeking specialized Lyme disease care: limited access to experienced practitioners.

Dr. Hinchey shares that her practice once had a waiting list approximately 18 months long.

She recalls receiving angry messages from people frustrated that they could not schedule an appointment sooner.

While she understood their desperation, she also recognized that she could not personally treat everyone who needed help.

She has a family and responsibilities outside her medical practice.

Even working longer hours would not solve the broader problem of limited specialist availability.

Rich uses her experience to explore how healthcare professionals can serve people beyond traditional appointments.

Instead of relying exclusively on one-on-one care, clinicians can share knowledge through conferences, podcasts, educational courses, books, and other resources.

These formats allow information to reach people who live far away, cannot afford specialized consultations, or face lengthy appointment delays.

Although educational resources cannot replace individualized medical care, they can help patients prepare questions, understand available options, and seek appropriate evaluations.

Reaching Patients Through Podcasts and Online Summits

Dr. Hinchey explains that she participates in podcasts and educational events because she wants to reach people who are still searching for explanations for their symptoms.

She describes her involvement in two Healing Lyme Summit events through DrTalks.

At the time, she already had more demand for appointments than her practice could accommodate.

Her motivation for participating was not to attract additional patients.

Instead, she hoped someone listening might recognize a relevant symptom pattern or learn about an avenue of medical evaluation they had not previously considered.

She believes accessible education can encourage patients to ask better questions and seek appropriate clinical assessments.

The conversation also addresses the limitations of relying on a single laboratory result when evaluating complex symptoms.

Lyme disease testing must be interpreted according to the timing of infection, exposure history, clinical presentation, and the characteristics of the test being used.

Educational programs can help patients understand these considerations, but they cannot establish a diagnosis or replace qualified medical assessment.

Treating the Whole Patient: Beyond Antimicrobial Protocols

Dr. Hinchey describes her approach as rooted in functional and naturopathic medicine.

She believes complex chronic illness requires attention to more than the presence of an infectious organism.

During the conversation, she discusses the importance of understanding physiological processes that may influence a patient's symptoms and response to treatment.

These include immune function, inflammation, and other factors affecting overall health.

She also discusses how her conference has evolved to explore possible interactions among tick-borne infections, environmental exposures, and other chronic health concerns.

Her perspective is that clinicians should consider the broader medical picture rather than assuming every patient needs the same intervention.

While comprehensive evaluation can be valuable, proposed mechanisms and treatment strategies should be assessed according to available scientific evidence.

Established Lyme disease treatment recommendations remain important, and complementary interventions should not replace appropriate antimicrobial therapy when indicated.

Why Medical Professionals Need to Keep Learning

A central theme of this conversation is professional humility.

Dr. Hinchey explains that even when she has heard a speaker present many times, she may learn something that changes how she thinks about a difficult case.

She personally selects speakers for LymeBytes based on the topics she believes clinicians and patients need to understand.

Her goal is to identify knowledgeable presenters who can share clinically relevant information.

She also recognizes that medical knowledge continues to evolve.

New research, diagnostic tools, and treatment approaches create opportunities for clinicians to reassess established practices.

Rich agrees but adds another dimension: healthcare professionals should also learn how to communicate their knowledge effectively.

He argues that sharing expertise through education can help more people than relying exclusively on direct clinical services.

Their discussion highlights an opportunity for medical professionals to extend the reach of their experience while continuing to prioritize patient care.

Building an Educational Model That Reaches More People

Rich introduces the concept of a value ladder to explain how professionals can serve people at different levels of engagement.

He describes three approaches:

• Self-directed learning: People use educational resources to build their understanding independently.
• Guided learning: Patients or professionals participate in courses, conferences, or structured educational programs.
• Individualized services: Patients receive direct care from a healthcare professional.

Rich believes Dr. Hinchey has developed a model that incorporates all three.

Her medical practice provides individualized services, LymeBytes offers structured education, and her podcasts and other resources allow people to learn without becoming patients.

He encourages other healthcare professionals to consider similar approaches.

The conversation also addresses a gap in professional training.

Dr. Hinchey recalls graduating from naturopathic medical school without knowing how to handle important business responsibilities, including insurance billing.

Rich observes that physicians, lawyers, and other professionals often receive extensive technical education without comparable training in business operations or public communication.

Both believe these skills can help professionals expand the impact of their work.

A New Lyme Disease Educational Course

Near the end of the interview, Dr. Hinchey reveals another project.

She had been developing an educational course for approximately two and a half years.

The course is intended for both clinicians and members of the public.

Her goal is to organize complex information into a more accessible learning experience for people who cannot attend conferences or receive care at her Connecticut practice.

She explains that her attention to detail and desire to create a comprehensive resource had contributed to delays in completing the project.

Rich encourages her to prioritize making the information available rather than waiting for perfection.

He challenges her to release the course by Christmas 2025.

Dr. Hinchey accepts the challenge with some humor, recognizing that the proposed deadline leaves her only about 10 weeks.

The course was still in development at the time of this interview. Its current availability should be confirmed through Dr. Hinchey's official channels.

Rich and Dr. Hinchey discuss the possibility of another Tick Boot Camp interview dedicated to the course and its educational goals.

Key Takeaways

• Dr. Myriah Hinchey practices in Hebron, Connecticut, where her multidisciplinary clinic focuses on Lyme disease, co-infections, and complex chronic illness.
• LymeCore Botanicals began as a solution to inconsistent herbal supply, eventually expanding into a company serving other healthcare professionals.
• LymeBytes connects patients, clinicians, nonprofits, and educational resources through an annual symposium.
• Her approach emphasizes integrative care, including consideration of infection-related concerns and broader health factors.
• Medical education should continue throughout a clinician's career, particularly as research and treatment approaches evolve.
• Specialist shortages create barriers to care, making accessible educational resources increasingly important.
• Podcasts, summits, and courses can extend a clinician's reach without requiring every person to become a patient.
• Dr. Hinchey is developing additional educational resources intended to help clinicians and patients navigate complex chronic illness.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

Rich reconnects with Dr. Myriah Hinchey to explore her clinical practice, herbal medicine company, educational conference, and broader mission to improve access to Lyme disease information.

The interview emphasizes innovation, continuing education, patient empowerment, and the importance of sharing clinical knowledge beyond the walls of a medical office.

For another in-depth conversation with Dr. Hinchey, listen to Episode 524: From Lyme Patient to Pioneer – an interview with Myriah Hinchey.

Explore more physician interviews, research discussions, and advocacy conversations through Tick Boot Camp's LIVE from ILADS series.

What happens when a child spends 10 years searching for a diagnosis, sees 21 doctors, and continues getting sicker while medical tests come back negative?

For author and Lyme disease advocate Terri McCormick, this isn't a hypothetical question. It's part of her family's story—and the experience that inspired her to help others navigate the devastating consequences of delayed and missed diagnoses.

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Terri to discuss her book, Being Misdiagnosed: Stories That Reveal the Hidden Epidemic of Lyme Disease, which shares 12 real-life stories of people whose illnesses were initially attributed to other medical conditions.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores the limitations of Lyme disease testing, the emotional toll of medical dismissal, neurological and psychiatric symptoms, and the importance of finding knowledgeable healthcare professionals.

Terri also shares her experiences advocating for two seriously ill daughters, the challenges of navigating multiple medical specialists, and why families need to understand that a negative test doesn't always provide a complete answer.

At the heart of this conversation is a message for patients and caregivers who feel unheard: Your symptoms deserve to be taken seriously, and you are not alone in searching for answers.

Meet Terri McCormick: Mother, Author, and Lyme Disease Advocate

Terri McCormick is an author, speaker, patient advocate, and ILADS Ambassador whose work focuses on improving awareness of Lyme disease and other tick-borne illnesses.

Her advocacy began when her own children developed serious health problems that remained unexplained for years.

Terri describes navigating countless appointments, researching possible explanations, and struggling to find physicians who could connect her daughters' seemingly unrelated symptoms.

What began as a mother's determination to help her children eventually became a broader mission to support families facing similar challenges.

Today, Terri helps people find educational resources and connect with healthcare professionals experienced in tick-borne diseases.

She also serves as an Illinois State Co-Leader for the Center for Lyme Action and contributes to LymeDisease.org.

Her experiences inspired her to write Being Misdiagnosed, a collection of patient stories intended to raise awareness about diagnostic delays and the human consequences of medical uncertainty.

A Mother's 10-Year Search for Answers

One of the most emotional parts of this interview is Terri's account of her daughters' illnesses.

Her older daughter developed increasingly debilitating symptoms, including:

• Severe, recurring migraines
• Extreme fatigue and prolonged periods in bed
• Difficulty walking and dragging her legs
• Unusual rashes on her hands
• Significant swelling in her hands
• Symptoms that fluctuated unpredictably

Terri explains that repeated Lyme disease tests came back negative.

Despite her daughter's worsening condition, the family struggled to find a clear explanation.

Some physicians recommended psychiatric evaluations, leaving Terri frustrated that her daughter's physical symptoms were not being adequately addressed.

Her younger daughter experienced a different combination of symptoms, including cardiac concerns, skin problems, and similar hand rashes.

Her illness eventually became so debilitating that she missed approximately 60% of a school year.

Determined to continue her education, she listened to classroom lectures remotely from bed.

Terri recalls consulting numerous medical specialists, including neurologists and rheumatologists.

She describes seeing 21 doctors during the family's search for answers.

Eventually, the family connected with a practitioner who ordered testing through IGeneX, which Terri says helped establish a Lyme disease diagnosis for one of her daughters.

Their experience illustrates how difficult it can be for families when symptoms cross multiple medical specialties and no single clinician has a complete picture.

Why Can Lyme Disease Be Difficult to Diagnose?

Rich and Terri spend considerable time discussing one of the Lyme community's most persistent concerns: diagnostic uncertainty.

Many commonly used Lyme disease tests measure antibodies produced by the immune system in response to infection.

These tests can be useful, but their accuracy depends on several factors, particularly the timing of testing.

Early in infection, a person may not yet have developed detectable antibodies.

This means a negative test does not always exclude Lyme disease, especially when symptoms and exposure history strongly suggest an early infection.

Terri describes her frustration when negative test results became the primary reason clinicians dismissed Lyme disease as a possibility.

She believes doctors should evaluate the full clinical picture, including symptoms, medical history, possible tick exposure, and appropriate laboratory findings.

The interview also highlights the challenges associated with interpreting specialized testing and evaluating patients who have been ill for extended periods.

For additional information about available testing methods and their limitations, explore Tick Boot Camp's Lyme Disease Testing Guide.

When a Negative Test Becomes a Barrier to Care

One of Rich's central observations is that negative test results can influence more than medical decisions.

They can also affect whether patients are believed.

When a person continues experiencing serious symptoms despite inconclusive testing, they may encounter skepticism from healthcare professionals, family members, employers, or friends.

Terri explains that this can be especially difficult for people whose symptoms fluctuate.

Someone may feel well enough to participate in an activity one day but be unable to get out of bed the next.

Without understanding that symptoms can change over time, others may mistakenly question the severity of the illness.

Rich and Terri discuss how this dynamic can leave patients feeling isolated, discouraged, and uncertain about their own experiences.

Their message is that persistent symptoms deserve thoughtful evaluation, even when the initial medical investigation does not produce a clear answer.

A negative Lyme test does not prove that someone is healthy, but it also does not establish that Lyme disease is the cause of their symptoms. A comprehensive evaluation should consider both tick-borne infections and other possible explanations.

Being Misdiagnosed: 12 Stories That Reveal the Hidden Epidemic of Lyme Disease

Terri's book, Being Misdiagnosed: Stories That Reveal the Hidden Epidemic of Lyme Disease, brings together 12 real-life accounts of people who experienced prolonged diagnostic journeys.

The book explores how symptoms associated with tick-borne illness may overlap with those of other medical conditions.

Among the diagnoses discussed are:

• Amyotrophic lateral sclerosis (ALS)
• Multiple sclerosis (MS)
• Alzheimer's disease
• Chronic fatigue syndrome
• Sleep disorders
• Psychiatric illnesses, including schizophrenia
• Other neurological and complex chronic conditions

Terri hopes the stories will encourage patients, caregivers, and medical professionals to ask additional questions when an illness remains unexplained or a diagnosis does not fully account for someone's symptoms.

The book also addresses the emotional and social consequences of prolonged illness, including family relationships, medical uncertainty, and the importance of advocacy.

Publication update: Although Terri discussed a planned January 2026 release during this October 2025 interview, Being Misdiagnosed has since been published and is available through her official website.

The Story of David: Decades Without Answers

Terri shares the story of David, one of the individuals featured in her book.

According to Terri, David began experiencing serious health problems around age 10, when he received a diagnosis of spondylitis.

As he grew older, his condition continued to deteriorate.

He underwent repeated medical evaluations, yet his symptoms progressed.

By age 42, Terri explains, David had accumulated an extensive list of diagnoses and was living with significant chronic illness.

She wonders whether earlier recognition of an underlying tick-borne infection could have changed the course of his medical journey.

David's experience raises an important question: What happens when physicians treat individual symptoms and diagnoses without reconsidering whether a broader explanation may be missing?

His story reflects the book's emphasis on persistence, reevaluation, and the importance of listening to patients whose health continues to decline.

When Lyme Disease Symptoms Resemble ALS or Other Neurological Conditions

Another story Terri highlights involves a woman who received an ALS diagnosis.

According to Terri, the woman was evaluated by neurologists, including specialists at Mayo Clinic, and was given a limited life expectancy.

Her daughter subsequently researched other possibilities and helped her pursue an evaluation for Lyme disease.

Terri reports that the woman received a positive Lyme test and underwent treatment.

She describes substantial improvement, explaining that the woman later returned to working approximately 50 hours per week.

Terri presents this experience as an example of why patients facing serious diagnoses may benefit from a careful review of their medical histories and potential alternative or coexisting conditions.

Importantly, this individual story does not establish that Lyme disease causes ALS or that Lyme treatment reverses confirmed ALS. Neurological symptoms can overlap across conditions, and accurate diagnosis requires appropriate specialist evaluation.

The story illustrates the importance of investigating potentially treatable conditions without assuming that every neurological illness is caused by infection.

Neuropsychiatric Lyme Disease and Mental Health Symptoms

Terri also discusses the neurological and psychiatric manifestations that may occur in some people with Lyme disease and other infections.

While Lyme disease is commonly associated with fatigue, joint pain, and other physical symptoms, certain neurological complications can affect cognition, mood, and nervous system function.

Terri explains that two stories in her book involve prominent neuropsychiatric symptoms.

One particularly difficult chapter describes a young man who experienced rapidly worsening psychiatric problems and multiple psychiatric hospitalizations.

Terri believes the possibility of an underlying infectious illness was not adequately investigated early enough.

The story is especially painful because it does not have the hopeful outcome described in many of the other chapters.

Rich connects the discussion to Tick Boot Camp's previous conversations with neuropsychologist Dr. Leo Shea III, whose work includes the cognitive, emotional, and behavioral effects of Lyme disease.

The interview raises questions about the relationship between infection, inflammation, neurological function, and psychiatric symptoms.

Certain infections can cause neuropsychiatric complications, but conditions such as schizophrenia, bipolar disorder, and other mental illnesses have multiple possible causes. They should not automatically be attributed to Lyme disease.

People experiencing new or severe neurological or psychiatric symptoms deserve timely, comprehensive medical evaluation.

Why Family Support Matters During a Diagnostic Journey

Rich suggests that one of the most important audiences for Terri's book may be the families of people living with unexplained chronic illness.

When medical testing is inconclusive, loved ones may struggle to understand why someone remains sick.

Parents may question a child's symptoms.

Spouses may become frustrated by unpredictable limitations.

Friends may withdraw because they do not understand why someone repeatedly cancels plans.

Terri explains that these experiences can intensify the isolation already associated with chronic illness.

She hopes her book will help families recognize the emotional burden of searching for answers and encourage them to respond with greater understanding.

For caregivers, the message is particularly important.

You do not need to have every medical answer to believe that someone is suffering and deserves support.

The Power of Community and Lyme Disease Support Groups

Terri shares that she previously helped run Lyme disease support groups and continues to speak with people searching for information and encouragement.

She describes how meaningful it can be when someone finally encounters another person who understands their experience.

For people who have spent years explaining symptoms to skeptical listeners, hearing someone acknowledge what they are going through can provide tremendous relief.

Terri explains that she regularly receives messages from people asking for guidance.

Her advocacy often begins by listening.

The conversation reinforces the importance of patient communities, peer support, and opportunities to connect with people who have navigated similar challenges.

Support groups cannot replace medical care, but they can help reduce isolation and provide emotional encouragement.

Why Lyme Disease Is Called the Great Imitator

Rich and Terri discuss Lyme disease's reputation as the great imitator.

The phrase reflects the fact that Lyme disease can produce symptoms that overlap with those of other medical conditions.

These may include neurological, musculoskeletal, constitutional, and, in certain cases, cardiac manifestations.

The diagnostic challenge becomes greater when symptoms fluctuate, evolve, or affect several body systems.

Terri's book uses patient experiences to illustrate how complicated these presentations can become.

Rich also shares a memorable phrase from LymeLight Foundation founder Phyllis Bedford, who described Lyme as the "supermarket disease."

Her observation was that people sometimes receive more recognition of their symptoms from others in their community than they do during medical appointments.

The phrase captures a painful reality for some patients: they may feel more understood by people with lived experience than by the professionals they turn to for help.

Terri connects with this perspective because she has witnessed the value of patient-to-patient education throughout her advocacy work.

Helping Patients Find Knowledgeable Lyme Disease Doctors

As an ILADS Ambassador, Terri helps direct people toward educational resources and healthcare professionals with experience in Lyme disease and other tick-borne infections.

She explains that finding an appropriately trained clinician can be difficult, particularly in areas with limited specialist availability.

Even when knowledgeable practitioners are nearby, long waiting lists may delay appointments.

Terri believes medical education is essential to improving this situation.

She discusses the role of ILADS conferences in bringing together clinicians, researchers, and advocates who want to improve the recognition and treatment of tick-borne illnesses.

Patients seeking care can explore the ILADS website for educational resources and information about finding healthcare professionals.

When choosing a clinician, patients should consider professional credentials, diagnostic methods, treatment recommendations, and whether the provider offers an evidence-informed approach that respects patient concerns.

Why Terri Believes Awareness Is Creating Hope

Despite the difficult experiences described throughout the interview, Terri and Rich conclude on an optimistic note.

Rich reflects on changes he has witnessed during years of interviewing Lyme disease patients, physicians, researchers, and advocates.

He explains that he now encounters more people actively working to improve awareness, education, testing, and treatment.

Terri shares his optimism.

She believes patient advocacy, public education, and storytelling can help families recognize when further medical evaluation may be necessary.

Her book is part of that effort.

By sharing the experiences of people who struggled for years before receiving additional answers, she hopes to encourage more informed conversations between patients, families, and healthcare professionals.

The message is not that every unexplained illness is Lyme disease.

It is that patients deserve careful investigation, compassion, and the opportunity to pursue answers when their symptoms remain unexplained.

Key Takeaways

• Delayed diagnosis can have serious consequences. Terri's family spent years searching for explanations while her daughters experienced worsening symptoms.
• Lyme disease testing has limitations. Test results must be interpreted in the context of symptoms, exposure history, timing, and other clinical information.
• Medical dismissal can deepen suffering. Patients may experience isolation and loss of support when their symptoms are questioned.
• Lyme disease can affect multiple body systems. Some manifestations overlap with neurological, rheumatological, and other conditions.
• Families play an important role. Understanding and believing that a loved one's symptoms are real can make a meaningful difference.
• Patient stories can encourage further investigation. Terri's book highlights the importance of considering additional explanations when a diagnosis remains uncertain.
• Community provides validation. Support groups and patient advocates can help people feel less alone.
• Education and advocacy create opportunities for change. Terri hopes her work will improve awareness and encourage earlier recognition of tick-borne illnesses.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

Rich interviews Terri McCormick about her family's diagnostic journey, her work as an ILADS Ambassador, and the experiences that inspired Being Misdiagnosed.

The interview explores the challenges of Lyme disease testing, medical dismissal, neurological symptoms, caregiver support, and the importance of patient advocacy.

It also highlights the role of community and storytelling in helping people navigate complicated medical experiences.

Explore more conversations with physicians, researchers, advocates, and patients in Tick Boot Camp's LIVE from ILADS podcast series.

For more than four decades, Dr. Richard Horowitz has challenged conventional thinking about chronic illness. His work treating more than 13,000 chronically ill patients has led to one of the most influential clinical frameworks in Lyme disease medicine: MSIDS® (Multiple Systemic Infectious Disease Syndrome).

Now, in his groundbreaking new book, Ending Chronic Illness: A Revolutionary New Program to Reverse Inflammation and Heal Persistent Disease, Dr. Horowitz expands that framework far beyond Lyme disease. He presents a bold new model suggesting that many of today's most common chronic illnesses—including Alzheimer's disease, Long COVID, autoimmune disorders, chronic fatigue syndrome, cardiovascular disease, autism spectrum disorders, psychiatric illness, and cancer—share common inflammatory pathways and root causes that can be identified and addressed.

In this exclusive Tick Boot Camp interview, Matt Sabatello and Rich Johannesen spend more than two hours taking a deep dive into Dr. Horowitz's latest work, exploring the science behind chronic inflammation, the evolution of his MSIDS model, his precision medicine approach to healing, and why he believes medicine must shift from treating symptoms to identifying the multiple factors keeping patients sick.

Whether you're living with Lyme disease, another chronic illness, or simply want to understand the future of personalized medicine, this conversation offers one of the most comprehensive discussions Dr. Horowitz has ever shared.

You can purchase Ending Chronic Illness: A Revolutionary New Program to Reverse Inflammation and Heal Persistent Disease on Amazon

Meet Dr. Richard Horowitz

Dr. Richard Horowitz is a board-certified internist, internationally recognized Lyme disease specialist, researcher, educator, and New York Times bestselling author. After beginning his medical career as a traditional internist, he found himself practicing in one of the country's earliest Lyme disease epicenters in New York's Hudson Valley.

Over the past 40+ years, Dr. Horowitz has become one of the world's leading clinicians treating chronic Lyme disease and complex chronic illness. His clinical experience treating more than 13,000 patients led him to develop the MSIDS model, a comprehensive framework that looks beyond a single diagnosis to identify multiple overlapping factors driving persistent illness.

His previous books, Why Can't I Get Better? and How Can I Get Better?, transformed how many physicians and patients approach chronic Lyme disease. His newest book expands that framework to virtually every major chronic disease.

In This Episode, You'll Learn: Why Dr. Horowitz Believes Chronic Disease Needs a New Model

Rather than viewing illnesses as isolated diagnoses, Dr. Horowitz argues that chronic diseases often share common inflammatory drivers.

He explains why treating a diagnosis alone frequently fails while identifying multiple underlying causes can dramatically improve outcomes.

Understanding the MSIDS Model

The conversation explores the evolution of MSIDS (Multiple Systemic Infectious Disease Syndrome), which identifies sixteen overlapping contributors to chronic illness.

The six primary "drivers of inflammation" include:

• Chronic infections
• Environmental toxins
• Microbiome dysfunction
• Leaky gut and food sensitivities
• Vitamin and mineral deficiencies
• Sleep disorders

Dr. Horowitz explains how these root causes create widespread inflammation that then produces additional downstream effects throughout the body.

The Three I's: Infection, Inflammation, and Immunity

One of the interview's central themes is Dr. Horowitz's "Three I's" framework.

He explains how:

• Persistent infections trigger inflammation
• Chronic inflammation damages immune function
• Impaired immunity allows additional infections to thrive

Breaking this cycle, he argues, is essential for long-term recovery.

Chronic Inflammation: The Common Thread

A major focus of the discussion is inflammation.

Dr. Horowitz explains why inflammation—not simply infection—may be the underlying mechanism connecting:

• Lyme disease
• Long COVID
• Alzheimer's disease
• Autoimmune disorders
• Mood disorders
• Chronic fatigue syndrome
• Cardiovascular disease
• Cancer
• Autism spectrum disorders

The 16 Inflammatory Pathways

Building upon the MSIDS model, Dr. Horowitz discusses sixteen major inflammatory pathways that regulate immune function and chronic disease.

He explains how pathways such as NF-κB, NRF2, the NLRP3 inflammasome, and prostaglandin signaling interact to sustain inflammation and why targeting these pathways may improve outcomes across numerous diseases.

Precision Medicine Instead of One-Size-Fits-All Care

Rather than treating everyone identically, Dr. Horowitz advocates for personalized medicine.

Every patient presents a unique combination of infections, environmental exposures, immune dysfunction, nutritional deficiencies, hormone imbalances, mitochondrial dysfunction, and other contributing factors.

The goal is to identify each person's unique inflammatory burden and systematically remove the factors preventing recovery.

Dapsone Combination Therapy

Dr. Horowitz explains how years of clinical experience led to the development of his Dapsone Combination Therapy protocols.

The discussion covers:

• Persister bacteria and biofilms
• Combination antibiotic strategies
• Reducing Herxheimer reactions
• Supporting detoxification
• Managing treatment side effects
• The importance of antioxidants, probiotics, methylfolate, glutathione, and other supportive therapies

He emphasizes that successful treatment involves much more than simply prescribing Dapsone.

Lyme Disease, Alzheimer's Disease, and Neuroinflammation

The interview also explores Dr. Horowitz's recent work investigating Lyme disease and Alzheimer's disease.

He discusses how chronic infections, environmental toxins, and neuroinflammation may contribute to cognitive decline and why reducing inflammation may become an important future direction for neurodegenerative disease research.

Emotional Trauma and Chronic Illness

Drawing from Chapter 3 of his new book, Dr. Horowitz discusses the biological impact of trauma and chronic stress.

He explains why unresolved trauma, limbic system dysfunction, and chronic stress physiology can perpetuate inflammation and why healing often requires addressing both physical and emotional health.

Environmental Toxicity

Chapter 4 of the book examines the growing role of environmental toxins.

Dr. Horowitz discusses:

• Mold exposure
• Heavy metals
• Air pollution
• Plastics and endocrine disruptors
• Pesticides
• Water quality

He argues that modern environmental exposures contribute significantly to chronic inflammation and should be evaluated as part of any comprehensive treatment plan.

Prevention Matters

Although much of the discussion centers on treating chronic illness, Dr. Horowitz emphasizes prevention.

He shares many of the lifestyle practices he personally follows, including:

• Anti-inflammatory nutrition
• Exercise
• Sleep optimization
• Stress reduction
• Detoxification support
• Targeted supplementation
• Reducing environmental toxin exposure

His message is simple: protecting health before illness develops may be just as important as treating disease after it appears.

Key Takeaways

• Chronic illness often results from multiple overlapping causes rather than a single diagnosis
• Inflammation may be the common biological mechanism connecting many seemingly unrelated diseases.
• The MSIDS model provides a practical framework for identifying and treating these underlying contributors
• Personalized precision medicine may offer better outcomes than symptom-focused treatment alone
• Addressing infections, toxins, gut health, nutrition, sleep, immune dysfunction, and emotional health together may dramatically improve recovery
• Prevention through lifestyle and inflammation reduction should become a central focus of modern medicine.

Why This Episode Matters

For decades, Dr. Richard Horowitz has challenged traditional assumptions about chronic disease.

In Ending Chronic Illness: A Revolutionary New Program to Reverse Inflammation and Heal Persistent Disease, he brings together thousands of patient experiences, years of clinical research, and an evolving understanding of inflammation into one comprehensive roadmap for patients and physicians alike.

Whether you agree with every conclusion or simply want to better understand one of today's most influential voices in integrative medicine, this conversation offers an extraordinary look at how the future of chronic illness care may evolve.

If you or someone you love is navigating Lyme disease, Long COVID, autoimmune illness, chronic fatigue, persistent inflammation, or another complex chronic condition, this is an episode you won't want to miss.

Can a multidisciplinary approach to Lyme disease treatment help patients better understand their illness, develop individualized treatment plans, and build a foundation for long-term recovery?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Francisco Ulloa, MD of Sanoviv Medical Institute in Mexico to explore the clinic's approach to integrative Lyme disease treatment, functional medicine, precision-oriented care, and patient education.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation offers an inside look at how Sanoviv brings together physicians, nutritionists, psychologists, and other specialists to evaluate patients and develop coordinated treatment strategies.

With approximately 17 years of experience at Sanoviv, Dr. Ulloa explains why he believes treating complex chronic illness requires understanding the individual patient, not simply following a standardized protocol.

Rich and Dr. Ulloa also discuss the emotional challenges of chronic illness, the relationship between conventional and functional medicine, and why the habits patients develop during treatment may be important after returning home.

For people researching Lyme disease treatment options in Mexico, this interview provides insight into Sanoviv's clinical philosophy, patient evaluation process, and residential care experience.

About Dr. Francisco Ulloa, MD

Originally from Mexico, Dr. Francisco Ulloa studied and worked in Guadalajara before joining Sanoviv Medical Institute.

He first learned about the facility approximately 20 years before this interview through a professional relationship between Sanoviv and the university where he worked.

During his initial visit, he was impressed by the environment and its approach to healthcare. He hoped to eventually become part of the medical team.

Approximately two years later, he received an invitation to join the institute.

By the time of this interview, Dr. Ulloa had spent approximately 17 years working at Sanoviv.

His clinical philosophy emphasizes multidisciplinary collaboration, functional medicine, individualized medical planning, and helping patients understand their health.

He believes one of the institute's greatest strengths is bringing healthcare professionals from different disciplines together to evaluate complex cases and coordinate patient care.

What Makes Sanoviv's Approach to Lyme Disease Different?

Located in Rosarito Beach, Baja California, Mexico, Sanoviv Medical Institute offers residential integrative medical programs for patients with a variety of health concerns, including Lyme disease and associated conditions.

Dr. Ulloa describes Sanoviv as a functional medicine clinic built around collaboration among multiple healthcare disciplines.

Rather than having patients visit specialists independently and attempt to coordinate recommendations themselves, the institute brings those professionals together within one facility.

Its team includes medical doctors, nutritionists, psychologists, chiropractors, kinesiologists, fitness professionals, and biological dentistry specialists.

Dr. Ulloa explains that the clinic's physicians have training associated with the Institute for Functional Medicine (IFM).

Patients typically spend several weeks at the facility, although some extend their stays depending on medical needs, personal goals, and financial circumstances.

During that time, the team works to understand each patient's medical history, evaluate current health concerns, and develop a coordinated plan.

How the Multidisciplinary Evaluation Process Works

One of the most revealing parts of the interview is Dr. Ulloa's description of Sanoviv's medical meetings.

When patients arrive, different members of the clinical team evaluate their cases from their respective professional perspectives.

The team then meets to discuss findings, compare observations, and determine treatment priorities.

Dr. Ulloa explains that the most important issue to address first may not always be the symptom the patient finds most troubling.

This is where collaboration becomes particularly valuable.

Instead of making decisions based on one professional's perspective, the team considers the patient's broader medical circumstances.

Rich describes this as a precision-oriented approach to medicine, where the treatment strategy is developed around the individual rather than applying the same protocol to everyone.

Why Lyme Disease Treatment May Need to Be Individualized

Dr. Ulloa emphasizes that people with Lyme disease can have very different medical histories, symptoms, and treatment needs.

He discusses several factors that may influence the clinical picture, including immune system function, genetics, underlying health conditions, previous treatments, and individual susceptibility.

His philosophy is that clinicians should evaluate these differences when developing a treatment strategy.

For some patients, this may mean addressing sleep disturbances, nutritional concerns, physical limitations, or other diagnosed medical conditions alongside appropriate treatment for Lyme disease.

Dr. Ulloa believes the goal should be to understand the patient as a whole rather than focusing exclusively on one symptom.

This approach is especially relevant to people experiencing complex or persistent symptoms who may benefit from coordinated evaluation across multiple medical specialties.

Importantly, Lyme disease is caused by infection with Borrelia bacteria. Individualized supportive care does not replace evidence-based diagnosis or appropriate antibiotic treatment.

The Power of Helping Patients Understand Their Medical History

Dr. Ulloa identifies patient education as one of the most meaningful aspects of the Sanoviv experience.

People living with complicated chronic illnesses may arrive after years of searching for explanations.

Some have consulted numerous healthcare professionals, undergone extensive testing, or tried multiple treatments without achieving the improvement they hoped for.

Dr. Ulloa explains that the medical team works to review each patient's history and communicate its findings in a way the patient can understand.

During the first weeks of treatment, patients may interact frequently with physicians and other specialists.

These conversations provide opportunities to understand treatment recommendations, discuss priorities, and ask questions.

Dr. Ulloa describes how meaningful it can be when a medical team helps patients make sense of their health history.

For people who have struggled to feel heard or understood, having their experiences carefully evaluated can provide validation and a clearer path forward.

Emotional Support, Hope, and Chronic Illness

Rich asks Dr. Ulloa about the relationship between emotional well-being and the treatment experience.

Chronic illness can affect much more than physical health.

Patients may face uncertainty about their future, changes in employment, financial pressure, disrupted relationships, and the emotional exhaustion of navigating ongoing symptoms.

Dr. Ulloa explains that psychological support is an important part of Sanoviv's multidisciplinary approach.

He believes clinicians should recognize the emotional challenges associated with illness while helping patients understand their treatment options.

The conversation also explores the importance of hope.

When patients have experienced years of setbacks, a coordinated medical plan and supportive clinical environment may help them feel more confident about the future.

However, emotional outlook does not determine whether someone will recover from Lyme disease. Patients should never be blamed for persistent symptoms or made to feel that they have failed because improvement has been difficult.

Hope is most meaningful when accompanied by appropriate medical care, honest communication, and realistic expectations.

Why Lifestyle Education Is Central to the Sanoviv Experience

A major theme of this interview is what happens after a patient leaves a residential treatment program.

Rich raises the concern that some people may expect an intensive medical experience to resolve their health challenges without requiring any changes to their everyday routines.

Dr. Ulloa explains that Sanoviv emphasizes lifestyle education because the institute wants patients to continue applying what they learn after returning home.

The discussion includes nutrition, sleep, physical activity, emotional well-being, and maintaining appropriate health practices.

Dr. Ulloa believes these factors can influence general health and a patient's ability to manage certain medical conditions.

He also acknowledges that not every patient is equally interested in a lifestyle-oriented approach.

Some people seek a quick intervention, while others are willing to participate in a more comprehensive program.

His goal is to help patients understand the reasoning behind recommendations so they can make informed decisions about their ongoing care.

Lifestyle changes may support overall wellness and symptom management, but Lyme disease is an infectious illness—not a consequence of unhealthy habits—and these measures are not substitutes for appropriate medical treatment.

Can Conventional Medicine and Functional Medicine Work Together?

Dr. Ulloa challenges the idea that patients must choose exclusively between pharmaceutical medicine and complementary approaches.

He describes encountering people with strongly held beliefs about different types of treatment.

Some prefer to avoid prescription medications, while others are skeptical of nutritional or lifestyle-based interventions.

His approach is to consider the available options according to the patient's clinical needs.

He provides an example involving someone with longstanding sleep difficulties who may benefit from carefully selected short-term medication while other aspects of care are addressed.

Dr. Ulloa describes medication in this situation as a temporary support that may help the patient transition toward a broader management plan.

The conversation illustrates his belief that treatment should not be limited by rigid philosophical boundaries.

Medication decisions must still account for evidence, safety, potential interactions, and the individual patient's condition. Some medications are appropriate for short-term use, while others may be necessary for long-term treatment.

Moving Beyond the Expectation of a Quick Cure

Rich and Dr. Ulloa discuss the expectations patients may bring to an intensive medical program.

Dr. Ulloa believes some people approach treatment hoping for one intervention that will resolve every symptom.

He explains that complex health conditions may require a more comprehensive approach and ongoing medical attention.

Their discussion includes the distinction between cure and remission.

Dr. Ulloa expresses a preference for discussing remission in certain chronic medical situations because he believes it encourages more realistic conversations about sustained improvement.

The meaning of these terms varies by disease.

For Lyme disease, appropriate antibiotic treatment cures the infection in most patients, although some individuals experience persistent symptoms after treatment.

Those symptoms deserve careful evaluation and compassionate medical attention.

The broader message of the conversation is that patients benefit from understanding what a treatment program can realistically offer and what additional care may be needed afterward.

The Importance of Trust and Shared Decision-Making

Dr. Ulloa encourages patients to approach treatment with openness, particularly when recommendations challenge their previous assumptions.

He describes the value of allowing medical professionals to explain their approach before rejecting an intervention based on personal beliefs.

This part of the conversation raises an important principle: effective healthcare depends on trust and collaboration.

Patients should feel comfortable asking questions, discussing concerns, reviewing potential risks, and understanding why a treatment is being recommended.

Clinicians, in turn, should respect patients' experiences, preferences, and right to make informed decisions.

A strong patient-provider relationship combines professional expertise with the patient's knowledge of their own symptoms and medical history.

Exploring Sanoviv's Lyme Disease Treatment Program

This interview focuses primarily on the philosophy and medical coordination behind Sanoviv's care.

For listeners interested in the specific treatments offered at the facility, Tick Boot Camp previously interviewed Bill Mansell about the institute's residential Lyme disease program.

Episode 499: Comprehensive Lyme Disease Treatment at Sanoviv Medical Institute – Bill Mansell explores the program's approach to diagnostic evaluation, antibiotics, whole-body hyperthermia, nutritional support, and aftercare.

That conversation provides additional context about the treatments and services discussed by Sanoviv representatives.

Some integrative interventions, including whole-body hyperthermia for Lyme disease, are not established standard treatments and may involve significant medical risks. Patients should independently evaluate the evidence and safety of specific procedures.

Together, these two interviews offer different perspectives: Bill Mansell discusses the treatment program, while Dr. Ulloa explains the medical philosophy, team collaboration, and patient experience.

How to Become a Patient at Sanoviv

At the end of the interview, Rich asks Dr. Ulloa how prospective patients can contact the institute.

Dr. Ulloa explains that the admissions process begins through Sanoviv's official website.

Prospective patients can complete a contact form and communicate with an admissions representative.

The admissions team may request medical history, laboratory results, and other relevant documentation.

A physician then reviews the available information to help determine which services or programs may be appropriate.

Dr. Ulloa explains that Sanoviv receives inquiries from patients in the United States, Canada, Europe, Asia, and other regions.

Anyone considering a residential medical program should ask about the proposed treatment plan, supporting evidence, medical risks, total costs, and arrangements for follow-up care before making a decision.

Key Takeaways from Dr. Francisco Ulloa

• Multidisciplinary care: Sanoviv brings together professionals from different healthcare disciplines to evaluate patients and coordinate treatment.
• Personalized planning: Dr. Ulloa believes complex medical conditions require attention to each patient's individual circumstances.
• Patient education: Helping patients understand their medical history and treatment recommendations is a major part of the institute's philosophy.
• Emotional support: Psychological well-being is addressed alongside physical health concerns.
• Integrative medicine: Dr. Ulloa advocates considering appropriate conventional and supportive interventions rather than relying on one rigid philosophy.
• Long-term wellness: The clinic emphasizes helping patients develop health practices they can continue after leaving the facility.
• Shared decision-making: Effective care requires communication, trust, and informed participation.
• Realistic expectations: Intensive medical programs should be viewed as one possible component of a broader healthcare plan rather than a guaranteed cure.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas.

The conference brings together healthcare professionals, researchers, and advocates to discuss Lyme disease, associated tick-borne infections, and emerging approaches to patient care.

Rich and Dr. Ulloa conclude by discussing the possibility of a future, longer-form Tick Boot Camp interview exploring Sanoviv's work in greater detail.

Discover additional conversations with physicians, researchers, and advocates in Tick Boot Camp's LIVE from ILADS interview series.

What happens when a healthcare professional suddenly loses the ability to walk, struggles to get answers from major medical institutions, and is told Lyme disease doesn't exist where she lives?

In this LIVE from ILADS interview, Tick Boot Camp welcomes Dr. Kristi Hellenbrand, DC, a Georgia chiropractor, Lyme disease survivor, author of Let Me Tell You a Secret…She Makes It: A Lyme Survival Story, and Global Lyme Alliance ambassador.

In the fall of 2020, Kristi experienced a devastating neurological decline. Within approximately 60 days, she could no longer walk. Migraines, tremors, memory problems, and episodes of disorientation followed.

Despite evaluations at major medical institutions, she struggled to obtain a clear explanation for her symptoms. She recalls being told she might have multiple sclerosis and hearing that Lyme disease wasn't a concern in Georgia.

Eventually, a local functional medicine physician helped her pursue a different treatment approach.

Kristi reports achieving remission in 2021.

But her journey didn't end with medical treatment.

She also had to rebuild her physical health, process the grief of losing her chiropractic practice, navigate the emotional consequences of chronic illness, and discover a new purpose through Lyme disease education and advocacy.

Her story offers a message for people who feel overwhelmed by their diagnosis:

Healing is possible, and someone else's recovery story may help you discover questions, resources, and approaches worth exploring with your own healthcare team.

When Lyme Disease Changes Everything in 60 Days

Before becoming a Lyme disease advocate, Kristi was a practicing chiropractor, mother, wife, and horse owner living south of Atlanta, Georgia.

Then, in 2020, her health rapidly deteriorated.

Within approximately two months, she lost the ability to walk.

Her neurological symptoms included:

• Severe migraines
• Tremors
• Memory lapses
• Cognitive dysfunction
• Disorientation in familiar surroundings
• Significant mobility impairment

At one point, she became lost only two miles from home.

Kristi describes the fear of watching her body and brain change while struggling to find a physician who could explain what was happening.

Her experience became particularly frustrating when she was told that Lyme disease wasn't found in Georgia.

For Kristi, the lack of answers became almost as frightening as the symptoms themselves.

When a Healthcare Professional Becomes the Patient

As a chiropractor, Kristi was already familiar with healthcare.

But that didn't make navigating her own unexplained illness easy.

She sought evaluations from major medical institutions, including Emory, Piedmont, and Mayo.

According to Kristi, those encounters did not produce a clear diagnosis or treatment plan that resolved her illness.

She ultimately connected with a local functional medicine physician who was willing to investigate Lyme disease as a possible explanation.

That experience reinforced something frequently discussed on Tick Boot Camp:

Patients with complicated symptoms need clinicians who listen, investigate, and remain curious when the first explanation doesn't fit.

For more information about diagnostic challenges, explore Tick Boot Camp's Lyme disease testing resources.

The Treatment Journey: Double-Dose Dapsone

Kristi describes pursuing an intensive treatment approach influenced by research from Dr. Richard Horowitz, a physician known for his work with Lyme disease and other tick-borne illnesses.

She specifically discusses the double-dose dapsone protocol.

Although Kristi did not personally treat with Dr. Horowitz, she and her physician reviewed his published work and incorporated a related approach into her treatment.

Kristi recalls that the protocol was challenging and that her physician was initially apprehensive about using such an intensive strategy.

Nevertheless, Kristi reports that this period of treatment became an important turning point in her recovery.

Her experience is a personal account, not evidence that double-dose dapsone is appropriate or effective for everyone. Dapsone-based multidrug protocols can involve significant medical risks and require careful clinical oversight.

Learn more about these approaches through Tick Boot Camp's interviews with Dr. Richard Horowitz.

Why Kristi Wrote Let Me Tell You a Secret…She Makes It

Kristi's illness forced her to become a student of Lyme disease.

While bedridden, she read extensively about the infection, associated conditions, available treatments, and recovery.

She remembers needing approximately 20 books simply to begin understanding the basics.

That experience inspired an important question:

Why should every newly diagnosed patient have to do all this research alone?

Her answer was to write a book that combines a personal recovery memoir with practical Lyme disease education.

Let Me Tell You a Secret…She Makes It: A Lyme Survival Story was published in 2023.

Kristi explains that the book includes educational sections addressing topics such as:

• Understanding Lyme disease
• Tick-borne co-infections
• Treatment options
• Navigating medical care
• Financial challenges
• Finding help
• Supporting the body during recovery
• Emotional health and grief
• Family relationships
• Rebuilding life after serious illness

She began writing before she knew how her own story would end.

Originally, part of her motivation was to preserve the experience for her children.

Over time, the project became something larger: a resource for other patients and their families.

Learn more about Kristi's book and advocacy through Lyme Lives Here.

Learning the Language of Lyme Disease

Rich and Kristi discuss one of the biggest challenges facing newly diagnosed patients:

Lyme disease comes with an unfamiliar vocabulary.

Suddenly, patients may be hearing terms such as:

• Borrelia
• Bartonella
• Babesia
• Co-infections
• Neuroborreliosis
• Biofilms
• Dapsone
• Herxheimer reactions
• Nervous-system regulation
• Rehabilitation
• Remission

Understanding these terms can help patients communicate more effectively with healthcare professionals and evaluate the information they encounter.

Kristi designed her memoir to help shorten that learning curve.

Rich connects her educational approach with Tick Boot Camp's Tick Bite Blueprint, a resource developed to help people understand practical steps following a tick bite.

Putting Out the Fire vs. Rebuilding the Body

One of Kristi's central recovery concepts is distinguishing between addressing the active illness and rebuilding afterward.

She describes the initial phase of treatment as putting out the fire.

Once she felt the immediate crisis had been addressed, she shifted her attention toward rehabilitation.

Kristi discusses working on:

• Digestive health
• Physical recovery
• Neurological symptoms
• Cognitive function
• Nutrition
• Emotional health
• Nervous-system regulation

Her perspective is that treatment and rehabilitation are related but not necessarily identical phases.

The body may need continued support even after the most severe symptoms improve.

This leads to one of the interview's most important connections with Tick Boot Camp's broader healing framework.

The Four Phases of Lyme Recovery

Rich shares Tick Boot Camp's four-phase model, developed from recurring themes in patient recovery interviews.

1. Prehabilitation

Preparing and supporting the body before intensive treatment.

2. Assist

Supporting the immune system and addressing microbial burden through an individualized medical plan.

3. Rehabilitation

Rebuilding physical, neurological, and functional capacity.

4. Maintenance

Developing sustainable habits, monitoring health, and reducing the risk of future tick-borne infections.

Kristi recognizes elements of all four phases in her own experience.

The conversation illustrates how recovery may involve much more than a single treatment protocol.

It also emphasizes that this is a framework for understanding recovery stories, not a universal medical sequence that every patient must follow.

The Grief of Losing Your Former Life

One of the most emotionally powerful parts of the conversation involves grief.

Kristi didn't simply lose physical function.

She also lost parts of her identity and independence.

She was forced to close her chiropractic practice.

She could no longer participate in many of the activities she loved.

Her horses remained in the pasture while she recovered.

Her children took on additional responsibilities.

Her husband helped shoulder the financial burden.

Kristi remembers experiencing denial, anger, sadness, loneliness, and fear.

She describes the profound isolation that can accompany serious chronic illness, especially when someone feels their life is disappearing piece by piece.

Her memoir explores these emotions openly.

It also gives family members and caregivers an opportunity to better understand what a loved one may be experiencing.

Why Caregivers Need to Hear These Stories

Kristi explains that some readers have passed her book to spouses, relatives, and other caregivers.

That has become one of its unexpected benefits.

Someone living with Lyme disease may struggle to explain the full experience of losing mobility, employment, independence, or hope.

A memoir can help communicate those experiences.

Kristi's husband initially found the book difficult to read because he had lived through the events alongside her.

For other families, however, reading her story has helped open conversations about illness and caregiving.

Chronic illness affects the entire family, even when only one person has the diagnosis.

Anger, Grief & Finding Hope

Kristi is open about the role anger played in her journey.

At one point, frustration with her declining health became a powerful motivation to pursue treatment.

But she also describes eventually moving toward a quieter emotional place.

Her experience wasn't simply about fighting harder.

It involved grieving what she had lost and discovering how to live again.

Rich connects her story with Tick Boot Camp's discussions about grief, purpose, and the emotional changes people may experience during recovery.

The message isn't that everyone must move through grief in the same way.

It's that grief deserves recognition.

People can experience sadness, anger, fear, and hope at different points—and sometimes simultaneously.

DNRS, Neuroplasticity & Nervous-System Regulation

During the fall of 2021, Kristi began exploring nervous-system regulation.

She discovered Annie Hopper's Dynamic Neural Retraining System (DNRS).

Kristi describes the program as helping her shift her identity away from being defined exclusively by illness.

She began recognizing that life could contain meaning, beauty, and possibility beyond the struggle to recover.

That emotional shift became an important part of her personal journey.

Nervous-system and neuroplasticity programs are not substitutes for appropriate medical evaluation or treatment of infection, and their benefits for persistent Lyme symptoms remain an area requiring more research.

For related Tick Boot Camp conversations, explore Cathleen King's Primal Trust interview and Lindsay Mitchell's Vital-Side interview.

From Lyme Patient to Global Lyme Alliance Ambassador

Kristi's recovery eventually led her toward advocacy.

She became involved with Global Lyme Alliance, first supporting other patients as a mentor and later serving as a Georgia ambassador.

Her advocacy focuses on improving Lyme disease awareness and helping people access information she struggled to find during her own illness.

Kristi also describes speaking with healthcare professionals in her community about Lyme disease.

She hopes that increased awareness will help more patients receive timely consideration of tick-borne illness when symptoms and exposure histories warrant it.

Her work is also connected to Lyme Lives Here, an educational initiative originally established by her daughter, Brooklynn, as a Girl Scout Gold Award project.

What began as a family's experience has grown into an effort to educate and support others.

Why Georgia Needs Lyme Disease Awareness

Kristi's experience challenges the assumption that Lyme disease should automatically be dismissed because a patient lives in the southern United States.

She recalls being told that Lyme disease wasn't a concern in Georgia.

That message contributed to her frustration during the diagnostic process.

Geographic risk varies, and not every tick bite transmits Lyme disease. Nevertheless, clinicians should evaluate a patient's symptoms, travel and exposure history, and the possibility of other locally relevant tick-borne illnesses rather than relying on an overly simplistic geographic assumption.

Kristi now uses her experience to encourage greater awareness among patients and healthcare professionals.

The Power of a Recovery Memoir

Rich explains why Tick Boot Camp values stories from people who have experienced meaningful recovery.

A recovery memoir can provide something different from a medical textbook.

It can show what one person actually experienced:

What they tried.

What helped.

What didn't.

How they handled setbacks.

What changed emotionally.

How they rebuilt their lives.

And what they learned along the way.

But Rich also makes an important distinction:

Someone else's recovery model doesn't have to become your recovery model.

A treatment or approach that helped one person may not work for another.

That doesn't mean the patient has failed.

It may simply mean they need a different approach, additional investigation, or another member of their healthcare team.

Recovery stories can offer ideas and hope without becoming rigid instructions.

From Survival to Purpose

Kristi's story comes full circle at ILADS.

The chiropractor who once struggled to walk is now attending a major Lyme disease conference, meeting clinicians, discussing her book, and helping other patients.

She has transformed some of the knowledge gained during her illness into education and advocacy.

Her recovery hasn't erased the fear she experienced or the possibility of future health challenges.

But she no longer describes her life as being dominated by the severe symptoms she experienced in 2020.

And she has found a new purpose.

For someone currently bedridden, newly diagnosed, frightened, or struggling to understand what comes next, her story offers a reminder:

Your life can change again. Your future doesn't have to look exactly like your present. And you don't have to navigate the journey alone.

About Dr. Kristi Hellenbrand, DC

Dr. Kristi Hellenbrand is a chiropractor, author, Lyme disease survivor, and Georgia ambassador for Global Lyme Alliance.

After experiencing a severe neurological illness beginning in 2020, Kristi pursued treatment for Lyme disease and reports achieving remission in 2021.

Her experience inspired her book, Let Me Tell You a Secret…She Makes It: A Lyme Survival Story, which combines memoir, patient education, and reflections on chronic illness, grief, family, and recovery.

She also supports Lyme disease awareness through public speaking, education, patient mentorship, and the Lyme Lives Here initiative.

Learn more about Global Lyme Alliance's patient support resources.

Key Topics in This Episode

Lyme disease recovery, Kristi Hellenbrand, Lyme disease remission, neurological Lyme disease, neuroborreliosis, Lyme disease in Georgia, chronic Lyme disease, Lyme disease misdiagnosis, wheelchair-bound Lyme patient, double-dose dapsone, Dr. Richard Horowitz, Horowitz protocol, Lyme disease memoir, Let Me Tell You a Secret She Makes It, Lyme disease treatment, Lyme disease rehabilitation, DNRS, Dynamic Neural Retraining System, neuroplasticity, nervous-system regulation, Lyme disease grief, chronic illness and family, Lyme disease caregivers, Global Lyme Alliance, Lyme Lives Here, Lyme disease advocacy, Tick Boot Camp, ILADS, and healing from Lyme disease.

About This LIVE from ILADS Interview

This conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Rich and Kristi discuss her personal recovery, her book, and how her experiences relate to Tick Boot Camp's four-phase healing framework.

They also discuss the possibility of bringing Kristi back for a longer conversation with Tick Boot Camp co-founder Matt Sabatello.

These LIVE from ILADS interviews are short-form conversations recorded on location, offering focused discussions with patients, advocates, clinicians, researchers, and innovators working to improve understanding of Lyme disease.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Explore the Tick Bite Blueprint for education about what to do after a tick bite.

Listen to interviews with Dr. Richard Horowitz to learn about his research and approaches to complex Lyme disease treatment.

Visit the Tick Boot Camp Podcast for more patient recovery stories, physician interviews, research conversations, and resources for the Lyme disease community.

This episode shares one patient's experience for educational purposes. It is not medical advice, and no individual treatment or recovery approach is guaranteed to work for everyone.

Could supporting the lymphatic system help people living with Lyme disease feel better, sleep more comfortably, and improve their overall well-being?

In this LIVE from ILADS interview, Tick Boot Camp welcomes back Freddie Kimmel, Lyme disease and metastatic cancer survivor, wellness technology educator, host of the Beautifully Broken Podcast, and representative of Flowpresso, for a fascinating conversation about lymphatic drainage, nervous system regulation, infrared heat, compression therapy, and emerging technologies being explored for recovery and wellness.

Rich reconnects with Freddie at the 2025 ILADS Conference nearly five years after their original Tick Boot Camp interview.

This time, Freddie introduces a technology that has become an important part of his professional work: Flowpresso, a full-body system combining sequential compression, heat, and deep-pressure stimulation.

Rich also shares his firsthand experience after trying the device at the conference.

He describes feeling deeply relaxed during the session, struggling to stay awake because of how comfortable he felt, and experiencing an unusually restful night of sleep afterward.

For patients navigating Lyme disease, persistent fatigue, limited mobility, sleep disturbances, and other complex symptoms, the conversation raises important questions about the role supportive wellness technologies might play alongside individualized medical care.

The central question: Can supporting circulation, relaxation, and lymphatic function become another useful part of a comprehensive Lyme disease recovery plan?

Freddie Kimmel Returns to Tick Boot Camp

Freddie Kimmel is no stranger to the Lyme disease community.

A survivor of Lyme disease, metastatic cancer, and mold-related health challenges, Freddie has spent years exploring the intersection of chronic illness, functional health, emerging technology, and personal transformation.

His original Tick Boot Camp appearance introduced listeners to his remarkable journey through serious illness and recovery.

Listen to Episode 162: The Lyme Polymath – An Interview with Freddie Kimmel to hear his personal story.

Since that conversation, Freddie has relocated from New York to Austin, Texas, where he has developed a wellness-focused community and continues exploring technologies intended to support health and recovery.

During this interview, he explains that his mission is to help people become healthier versions of themselves by combining information, technology, and practical knowledge.

One of the technologies that captured his attention is Flowpresso.

What Is Flowpresso?

Flowpresso is a full-body therapeutic system developed by New Zealand lymphatic specialist and entrepreneur Desiree De Spong.

The system combines three primary components:

• Sequential compression: Inflatable chambers apply pressure to different parts of the body in a coordinated sequence.
• Thermotherapy: Integrated heating elements provide warmth during treatment.
• Deep-pressure stimulation: The full-body garment creates a gentle, enveloping pressure sensation intended to promote comfort and relaxation.

Freddie describes the experience as being wrapped in a warm, comforting hug.

Unlike smaller compression devices that primarily target the legs, Flowpresso uses multiple garment sections covering the feet, legs, abdomen, arms, and portions of the upper body.

A typical session lasts approximately 40 minutes.

Flowpresso is marketed as an FDA-cleared Class II medical device intended for use under licensed healthcare practitioner supervision and within its cleared indications.

FDA clearance does not establish that Flowpresso treats Lyme disease, eliminates infections, or cures chronic illness.

Meet Flowpresso Founder Desiree De Spong

Freddie explains that his involvement with Flowpresso began after meeting Desiree De Spong through a mutual connection.

Desiree is a New Zealand-based lymphatic specialist, educator, and founder of Flowpresso.

Her background includes extensive experience in lymphatic health and therapeutic approaches involving compression and manual lymphatic techniques.

Freddie recalls their first conversation lasting approximately an hour.

He describes an immediate connection based on their shared interest in wellness, technology, and helping people navigate difficult health challenges.

That relationship eventually developed into a professional collaboration.

Today, Freddie helps introduce Flowpresso to practitioners, clinics, and wellness communities.

Learn more about the Flowpresso team and its founder.

Understanding the Lymphatic System

One of the most educational parts of this conversation focuses on a body system that often receives less attention than the heart, brain, or digestive tract.

The lymphatic system is a network of vessels, lymph nodes, and organs that helps maintain fluid balance, transport certain fats, and support immune function.

It collects excess fluid from tissues and returns that fluid to the bloodstream.

It also plays an important role in immune surveillance.

Lymph nodes contain immune cells that help recognize and respond to potentially harmful substances and infectious organisms.

Freddie compares the lymphatic system to a waste-management network that helps the body process material moving through tissues.

Although this analogy is useful for understanding some lymphatic functions, the lymphatic system is not a general-purpose detoxification machine, and increasing lymph flow has not been shown to eliminate Lyme bacteria or other infections.

Why Movement Matters for Lymphatic Flow

Unlike the cardiovascular system, which relies on the heart to circulate blood, the lymphatic system does not have one central pump.

Lymph movement is supported by several mechanisms, including:

• Skeletal muscle contractions
• Breathing-related pressure changes
• Contractions within lymphatic vessels
• One-way valves that help direct fluid movement
• Normal physical activity

Freddie explains that walking, standing, squatting, and other movements can contribute to lymph circulation.

This becomes especially relevant when discussing patients with severe fatigue or limited mobility.

Some people living with Lyme disease or other chronic illnesses may spend extended periods resting or may be unable to tolerate ordinary exercise.

The discussion explores whether supportive therapies could offer additional options for certain patients.

However, activity must be adapted to each person's medical condition and physical capacity. Patients with significant exercise intolerance, post-exertional symptom exacerbation, or other limitations may need specialized guidance rather than simply increasing movement.

Can Lymphatic Support Help Bedridden Lyme Patients?

Rich asks Freddie an important question:

What options might exist for people who are too sick to walk or exercise regularly?

Freddie explains that Flowpresso provides externally applied sequential compression while the person remains reclined.

Rather than requiring the patient to actively contract muscles throughout the session, the device applies pressure through inflatable garment sections.

This may be of interest to clinicians evaluating appropriate supportive care for people with mobility limitations.

However, there is currently insufficient evidence to conclude that Flowpresso improves Lyme disease outcomes, treats persistent infection, or accelerates recovery from Lyme disease.

Compression therapy also has medical contraindications and may be inappropriate for some patients.

Anyone considering this technology should consult a qualified healthcare professional, particularly if they have cardiovascular disease, blood-clotting concerns, significant swelling, neuropathy, or other complex medical conditions.

How Flowpresso's Sequential Compression Works

Freddie describes the Flowpresso system as a series of connected garment sections and inflatable chambers.

The chambers are positioned around different areas of the body.

During a session, they inflate and release in a coordinated pattern.

Freddie compares the process to gently squeezing a tube of toothpaste from one end toward the other.

The device uses overlapping compression chambers designed to create a progressive pressure wave.

According to Freddie, this wave moves through the system repeatedly during treatment.

The intent is to encourage fluid movement and provide a rhythmic, soothing sensation.

Sequential pneumatic compression is an established technology used in certain medical settings, including management of selected circulation and swelling conditions.

Whether a particular device is appropriate depends on its cleared indications, the patient's condition, and the clinician's assessment.

Infrared Heat and Thermotherapy

Another feature of Flowpresso is integrated heat.

Freddie explains that the device uses warming elements within the garment sections.

Unlike a traditional sauna, Flowpresso is not designed primarily to produce intense sweating.

Instead, the system provides warmth while the compression chambers operate.

Freddie believes this combination may help promote relaxation and complement the mechanical compression experience.

Heat can influence local circulation and comfort, but claims that infrared heat directly removes toxins, kills Lyme bacteria, or reverses chronic illness require stronger scientific evidence.

For patients with heat intolerance, autonomic dysfunction, impaired temperature sensation, or certain cardiovascular conditions, heat exposure may also present additional considerations.

Nervous System Regulation and the Parasympathetic Response

Freddie and Rich discuss the relationship between chronic illness, stress, sleep, and the autonomic nervous system.

The autonomic nervous system helps regulate functions such as heart rate, breathing, digestion, and vascular activity.

Its sympathetic and parasympathetic branches participate in the body's responses to activity, stress, and rest.

Freddie believes the combination of warmth, rhythmic compression, and deep-pressure stimulation may help some people feel calmer and more relaxed.

He describes Flowpresso as creating a sensation of comfort and security.

For patients experiencing persistent stress, poor sleep, or difficulty relaxing, that experience may be meaningful.

However, subjective relaxation does not necessarily demonstrate correction of autonomic dysfunction or improvement in the underlying causes of Lyme disease symptoms.

Rich Tries Flowpresso at ILADS

One of the most memorable moments in the interview is Rich's description of personally trying Flowpresso.

He explains that getting into the full-body garment initially felt unusual.

The device reminded him of being secured inside a spacesuit.

But once the session began, his experience changed.

Rich describes the rhythmic compression and warmth as extremely comfortable.

He felt so relaxed that staying awake became difficult.

Afterward, he reported feeling refreshed.

Most notably, Rich says he slept better that night than he had in a long time.

He had been traveling, adjusting to a different time zone, and experiencing disrupted sleep before the session.

Although he personally credits Flowpresso for helping him rest, a single experience cannot establish that the device caused the improvement.

Nevertheless, his reaction provides an interesting firsthand perspective on what a Flowpresso session feels like.

Could Flowpresso Improve Sleep?

Sleep becomes a major theme during the conversation.

Freddie describes research conducted in New Zealand involving first responders who participated in a series of Flowpresso sessions.

He reports that participants experienced substantial improvements in sleep-related outcomes.

The company has promoted findings involving improved sleep quality following repeated sessions.

These are company-reported results, and the specific study design, measurements, comparison groups, and peer-reviewed evidence should be evaluated before drawing conclusions about clinical effectiveness.

Rich's own experience raises an interesting question about whether relaxation-oriented technologies might help some patients sleep more comfortably.

Sleep is essential for cognitive function, emotional regulation, immune health, and overall recovery.

But better sleep after a wellness session does not demonstrate treatment of Lyme disease or removal of infectious organisms.

The Lymphatic System, Immune Function, and Chronic Illness

Freddie also discusses how lymphatic function relates to the immune system.

Lymph nodes help filter lymph and provide sites where immune cells encounter antigens and coordinate immune responses.

This relationship makes the lymphatic system an important part of normal immune function.

Freddie raises the possibility that chronic illness, reduced mobility, and other physiological stressors may influence lymphatic health.

He also introduces the concept of the exposome, which broadly refers to environmental exposures experienced throughout life.

The discussion touches on mold, infections, environmental substances, and other factors that may influence health.

These topics are complex and should not be reduced to a single explanation involving toxin accumulation or impaired lymphatic drainage.

Walking, Breathing, and Everyday Lymphatic Health

Beyond technology, Freddie emphasizes simple practices that can support normal physiology.

He highlights three areas:

Movement: Walking and appropriate physical activity engage muscles that help move lymphatic fluid.

Breathing: Changes in pressure during breathing contribute to fluid movement through the body.

Rest and relaxation: Adequate sleep and stress management support overall well-being.

Rich also references a previous conversation with Dr. Bill Rawls about the role walking played in his personal recovery journey.

The takeaway is not that every patient should follow the same exercise routine.

Rather, movement and other supportive practices should be individualized according to symptoms, physical capacity, and medical guidance.

Dry Brushing, Rebounding, and At-Home Wellness Practices

Rich and Freddie briefly discuss several practices commonly promoted in wellness communities.

These include dry brushing, rebounding, walking, breathing exercises, and massage-oriented techniques.

Some patients find these activities relaxing or enjoyable.

However, the scientific evidence supporting specific claims about detoxification or treatment of chronic infections varies considerably.

Dry brushing, for example, has not been established as a treatment for Lyme disease or as a reliable method of increasing deep lymphatic drainage.

Freddie emphasizes that no single device or technique should replace broader attention to everyday health habits.

Flowpresso for Recovery and Rehabilitation

Freddie explains that Flowpresso has attracted interest beyond the Lyme disease community.

He discusses potential applications in:

• Wellness and relaxation
• Physical recovery
• Selected rehabilitation settings
• Postoperative care
• Sports recovery
• Clinical environments where compression therapy may be appropriate

He describes introducing the technology to professional sports organizations and practitioners interested in recovery-oriented equipment.

The interview also references its use in settings involving breast implant removal and postoperative recovery.

These examples reflect the applications discussed by Freddie, not proof that the device produces superior surgical outcomes or replaces standard postoperative care.

Decisions about compression, drainage, and postoperative management should remain with qualified treating clinicians.

Freddie's Personal Connection to Lymphatic Health

Freddie's interest in lymphatic function is deeply personal.

During his experience with metastatic cancer, he underwent extensive surgery involving lymph nodes in his abdomen.

He describes a retroperitoneal lymph node dissection and numerous surgical clips remaining from that procedure.

Those experiences influenced his curiosity about the lymphatic system and the potential role of compression-based therapies.

He explains that he did not fully appreciate the system's complexity during his earlier health challenges.

Now, lymphatic education has become a central part of his work.

His experiences provide valuable context for understanding his enthusiasm, while his personal results and observations should be distinguished from controlled clinical evidence.

Is Flowpresso Available for Home Use?

Freddie explains that Flowpresso is primarily a practitioner-oriented system.

He discusses how clinics may offer sessions and how some patients with mobility limitations may explore home-based access under appropriate professional supervision.

Availability varies by location.

The company maintains a directory of participating providers.

Find a Flowpresso provider near you.

Healthcare professionals interested in learning more can visit the official Flowpresso website.

Because the device is intended for supervised use, patients should discuss suitability, contraindications, and realistic expectations with a qualified healthcare professional.

What Research Is Still Needed?

While the interview highlights enthusiasm about Flowpresso, important questions remain.

For Lyme disease patients specifically, research would need to investigate whether this technology produces measurable benefits beyond relaxation or general comfort.

Potential research questions include:

• Does Flowpresso improve validated measures of sleep quality?
• Can it help selected patients experiencing clinically significant swelling?
• Does it improve quality of life in people with limited mobility?
• How do outcomes compare with established compression therapies?
• Which patients are most likely to benefit?
• What adverse effects or contraindications should clinicians consider?
• Are any benefits sustained after treatment sessions end?

Controlled clinical trials would be needed to determine whether Flowpresso offers disease-specific benefits for Lyme disease or persistent symptoms following treatment.

About Freddie Kimmel

Freddie Kimmel is a wellness technology educator, speaker, podcaster, and survivor of metastatic cancer, Lyme disease, and mold-related health challenges.

He hosts the Beautifully Broken Podcast, where he explores health, recovery, wellness technology, and personal transformation.

Before entering the wellness field, Freddie worked professionally in musical theater, including performances in major theatrical productions.

His personal health experiences inspired him to explore functional health, emerging technologies, and approaches intended to support overall well-being.

Freddie currently works with Flowpresso, helping educate practitioners and consumers about lymphatic health and compression-based wellness technology.

Hear his original Tick Boot Camp interview: Episode 162: The Lyme Polymath – Freddie Kimmel.

Key Takeaways

• The lymphatic system plays important roles in fluid balance and immune function.
• Movement, breathing, and contractions within lymphatic vessels contribute to normal lymph circulation.
• Flowpresso combines sequential compression, heat, and deep-pressure stimulation.
• Rich personally experienced substantial relaxation and reported improved sleep after trying the device.
• Freddie believes supportive wellness technologies may have a role in individualized recovery plans.
• Flowpresso is not an established treatment for Lyme disease or persistent Lyme-related symptoms.
• Patients should evaluate potential benefits, risks, and contraindications with qualified healthcare professionals.
• More independent clinical research is needed to determine the device's effectiveness for specific health conditions.

Key Topics in This Episode

Freddie Kimmel, Flowpresso, Lyme disease lymphatic drainage, lymphatic system, chronic Lyme disease, lymphatic health, Lyme disease recovery, infrared therapy, sequential compression therapy, pneumatic compression, lymphatic drainage suit, thermotherapy, nervous system regulation, parasympathetic nervous system, Lyme disease fatigue, Lyme disease sleep problems, chronic illness recovery, wellness technology, Desiree De Spong, Beautifully Broken Podcast, metastatic cancer survivor, Lyme disease rehabilitation, sleep quality, physical recovery, functional health, ILADS, and Tick Boot Camp.

About This LIVE from ILADS Interview

This conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Rich reconnects with Freddie Kimmel nearly five years after their original Tick Boot Camp interview.

They explore Freddie's latest work with Flowpresso, the fundamentals of lymphatic function, compression therapy, infrared heat, and the relationship between relaxation and sleep.

Rich also shares his firsthand experience trying Flowpresso at the conference.

The two discuss the possibility of a future long-form conversation examining lymphatic health, lifestyle practices, and the technology in greater detail.

Explore all Tick Boot Camp LIVE from ILADS interviews.

Resources Mentioned

Flowpresso Official Website

Learn about the technology, its intended uses, and the company behind it.

Find a Flowpresso Provider

Explore the company's provider directory to identify participating locations.

Desiree De Spong

Learn more about the founder of Flowpresso and her work in lymphatic education.

Freddie Kimmel – Beautifully Broken Podcast

Explore Freddie's podcast and wellness education resources.

More from Tick Boot Camp

Episode 162: The Lyme Polymath – An Interview with Freddie Kimmel

Discover Freddie's personal story of surviving metastatic cancer, Lyme disease, and mold-related health challenges.

Dr. Bill Rawls, MD – Lyme Disease and Natural Healing

Explore Dr. Rawls' perspective on Lyme disease recovery, lifestyle practices, herbal medicine, and supporting overall health.

Tick Boot Camp LIVE from ILADS

Watch and listen to interviews with doctors, researchers, advocates, and innovators discussing Lyme disease and tick-borne illness.

Tick Boot Camp Podcast

Explore more patient recovery stories, medical interviews, research discussions, and conversations about healing and hope.

What happens when seven years of undiagnosed Lyme disease, debilitating symptoms, and medical dismissal push someone to the point of losing hope—and that person eventually becomes a voice of hope for others?

In this LIVE from ILADS interview, Tick Boot Camp welcomes Tanya, host of Lyme and Beyond with Tanya, for an emotional and inspiring conversation about Lyme disease recovery, medical gaslighting, mental health, suicidal thoughts, patient advocacy, and the power of sharing stories of healing.

After spending years searching for answers, Tanya experienced severe physical and cognitive symptoms that disrupted her independence and quality of life. Repeatedly told that her symptoms were caused by stress or psychological problems, she reached a point where she struggled to imagine continuing her life without answers.

But Tanya's story didn't end there.

Her recovery journey eventually inspired her to become a Lyme disease advocate and podcast host, creating a platform dedicated to sharing stories of people who have experienced meaningful healing.

Today, her mission is to remind people living with Lyme disease and other tick-borne illnesses that they are seen, heard, understood, and not alone.

This episode explores why finding the right community, hearing recovery stories, and discovering a personal reason to keep moving forward can make such a meaningful difference during chronic illness.

Meet Tanya: Host of Lyme and Beyond with Tanya

Tanya brings a unique perspective to the Lyme disease community.

She describes approximately 13 years of personal experience navigating Lyme disease and many additional years supporting and advocating for patients.

Her podcasting journey began when her former Lyme disease physician suggested they start a podcast together.

At the time, Tanya barely knew what a podcast was.

Nevertheless, she agreed to try something completely outside her comfort zone.

After approximately three and a half years of podcasting with her former physician, she launched her independent show, Lyme and Beyond with Tanya.

Her mission has remained consistent throughout that journey:

Give hope and inspiration to people living with Lyme disease.

Unlike podcasts that primarily focus on emerging treatments, medical research, or ongoing patient struggles, Tanya emphasizes interviews with people who have experienced meaningful recovery.

She wants listeners to hear from individuals who were once bedridden, wheelchair-bound, or severely debilitated but eventually regained their independence and quality of life.

These stories help demonstrate that illness does not necessarily define someone's future.

Seven Years of Medical Gaslighting

Tanya describes spending approximately seven years without receiving an explanation that adequately accounted for her symptoms.

During that time, she repeatedly heard suggestions that she was simply working too much, experiencing excessive stress, or dealing with psychological problems.

She recalls being told she needed therapy rather than additional medical investigation.

Meanwhile, her physical and cognitive symptoms continued.

She experienced significant pain and memory problems that interfered with everyday activities.

At times, she became disoriented while driving.

She describes returning from the grocery store and forgetting that she had groceries in her vehicle.

These experiences were frightening, frustrating, and increasingly isolating.

For Tanya, the absence of a clear diagnosis made it difficult to know what she was fighting or how to move forward.

Her story highlights why patients with persistent, unexplained symptoms need thoughtful medical evaluation, compassion, and a willingness to investigate possible causes.

When Chronic Illness Leads to Suicidal Thoughts

One of the most important moments in this conversation occurs when Tanya openly discusses experiencing suicidal thoughts during her illness.

She explains that years of physical suffering, uncertainty, and feeling dismissed by healthcare professionals gradually eroded her hope.

She had previously felt ashamed of this part of her story.

Today, she shares it because she wants other patients experiencing similar emotional distress to understand that they are not alone and that support is available.

Tanya also reflects on the loss of her brother, who died from a health condition at age 22.

She was only 19 at the time.

During her darkest moments, she struggled with thoughts about how her family would respond to another loss.

Eventually, her niece and nephew became especially important sources of connection and motivation.

They helped her reconnect with reasons to keep seeking help and working toward recovery.

Suicidal thoughts are a serious health concern, not a personal failure or something patients should have to overcome through determination alone. Anyone experiencing these thoughts deserves compassionate, immediate support from qualified professionals and trusted people.

In the United States, the 988 Suicide & Crisis Lifeline is available by calling or texting 988.

Finding Your Why During Lyme Disease Recovery

Tanya emphasizes the importance of finding a personal reason to continue moving forward.

For her, that reason was her niece and nephew.

Other patients may find meaning in relationships, creative interests, future goals, faith, community, or the possibility of rebuilding a life they value.

Tanya describes how reconnecting with the people she loved helped her move through a particularly difficult period.

Her experience illustrates the importance of emotional support alongside appropriate medical care.

A person's reasons for living can provide meaningful motivation, but they are not a substitute for professional mental health treatment when needed.

Why Lyme Recovery Stories Matter

Rich and Tanya discuss the value of hearing stories from people who have experienced significant improvement after Lyme disease.

For someone who has been sick for months or years, it can be difficult to imagine a different future.

Symptoms may change unpredictably.

Treatment may involve setbacks.

Financial pressures can become overwhelming.

Relationships and careers may be affected.

Hearing from someone who once faced similar challenges and eventually experienced meaningful recovery can help restore a sense of possibility.

This is the foundation of Tanya's podcast.

She intentionally features guests who can share what life looked like during their illness, what changed during recovery, and what their lives look like now.

Her goal isn't to suggest that every patient will follow the same path.

It's to offer examples of what may be possible.

Different Lyme Podcasts, Different Perspectives

One of the central themes of this interview is collaboration within the Lyme disease podcasting community.

Rich explains that Tick Boot Camp does not view other Lyme disease podcasts as competitors.

Instead, different platforms can serve different needs.

Two podcasters might interview the same guest and uncover entirely different parts of that person's experience.

A patient's perspective may also change depending on where they are in their journey.

Someone newly diagnosed may need basic education and guidance.

Someone undergoing treatment may be looking for discussions about symptoms, treatment decisions, or navigating setbacks.

Someone rebuilding their life may benefit from conversations about rehabilitation, relationships, emotional recovery, and purpose.

Tanya's podcast adds another valuable voice to this broader educational community.

She also shares that her listeners regularly recommend guests they have discovered through Tick Boot Camp.

The exchange of stories and resources helps both communities.

The goal isn't to build competing audiences. It's to help patients find the information, encouragement, and community they need.

Why Women's Perspectives Matter in Lyme Disease

Rich and Tanya also discuss the importance of bringing different lived experiences into Lyme disease conversations.

Women may face concerns related to fertility, pregnancy, breastfeeding, family planning, caregiving, and other aspects of health that deserve thoughtful attention.

Tanya acknowledges that she cannot personally speak to every experience.

She shares that she was unable to have children and that certain topics, including mold-related illness, were not central to her own journey.

Rather than attempting to provide answers about experiences she hasn't lived, she welcomes guests who can offer those perspectives.

Her approach emphasizes curiosity, humility, and continued learning.

The conversation reinforces why Lyme disease education benefits from a diversity of patient voices and qualified medical experts.

The Emotional Isolation of Lyme Disease

Tanya describes Lyme disease as an intensely isolating experience.

Even though she had supportive family members and friends, she often felt alone.

That distinction is important.

Someone can be surrounded by people who care about them and still feel misunderstood.

Family members may struggle to understand symptoms they cannot see.

Friends may not recognize how much energy ordinary activities require.

Patients may find it exhausting to repeatedly explain their experiences.

Connecting with others who have lived through similar challenges can provide a different kind of support.

Tanya believes that shared understanding is one of the most valuable aspects of the Lyme disease community.

Faith, Grief & Finding Purpose

Faith is another important part of Tanya's personal story.

She openly discusses experiencing a complicated relationship with God during her illness.

At times, she questioned why she was suffering and struggled to reconcile her experience with her beliefs.

Over time, her faith became an important source of meaning and comfort.

She now views her advocacy as part of the purpose she discovered through her recovery journey.

Tanya is grateful for the friendships, relationships, and opportunities that emerged from her experiences.

She also acknowledges how painful and financially difficult the journey was.

Her story shows that gratitude and grief can coexist.

A person can find meaning after illness without minimizing what they endured.

And patients who do not find a larger purpose in their illness deserve the same compassion, dignity, and support.

Choosing Healthy Lyme Disease Support Communities

Toward the end of the interview, Rich and Tanya discuss the influence of online Lyme disease support groups.

Both recognize how valuable these communities can be.

They connect people who might otherwise feel isolated and provide opportunities to exchange experiences, resources, and encouragement.

However, Tanya also cautions that not every group will be helpful for every person.

She raises concerns about medical misinformation, unsupported treatment recommendations, and interactions that leave patients feeling more frightened or discouraged.

Her advice is to be selective.

Rather than joining every available group, consider participating in a few communities and evaluating how they affect your well-being.

Ask yourself:

• Do I feel heard and respected?
• Are different patient experiences welcomed?
• Are medical claims presented responsibly?
• Does the community encourage appropriate professional care?
• Can people share difficult emotions without being judged?
• Do I leave feeling supported rather than overwhelmed?

Tanya encourages patients to seek communities that provide validation, accurate information, and constructive support.

Positivity Without Dismissing Pain

Tanya emphasizes positivity throughout the interview, but her own story makes clear that recovery can involve profound suffering.

She knows what it means to experience fear, isolation, depression, and uncertainty.

Her message is not that patients must feel positive every day.

She acknowledges that difficult days are part of the experience.

Instead, she encourages people to look for sources of encouragement when they can and to remember that a difficult day does not necessarily determine what comes next.

It's also important to recognize that symptom flares do not automatically indicate healing, and patients should discuss new or worsening symptoms with their healthcare professionals.

Hope is most meaningful when it leaves room for honesty.

How Podcasts Can Become Virtual Mentors

Rich explains that Tick Boot Camp frequently encourages people to learn from recovery stories.

A patient may not have access to a personal mentor who has navigated Lyme disease.

But listening to someone describe their experiences can provide a form of virtual mentorship.

Patients can learn about questions to ask, resources to investigate, and approaches to discuss with their clinicians.

They may also discover people whose experiences resemble their own.

Tanya's podcast is designed to provide that kind of connection.

By sharing recovery stories, she hopes to offer listeners both emotional validation and examples of people who have rebuilt their lives.

Why the Lyme Community Is Stronger Together

Rich and Tanya close their conversation by emphasizing cooperation rather than competition.

No single podcast, advocacy organization, support group, or medical professional can meet every patient's needs.

The Lyme disease community benefits when people share resources, amplify one another's work, and introduce patients to new perspectives.

For Tanya, meeting fellow advocates and podcasters at ILADS is especially meaningful.

Many of these relationships began online.

Now she has opportunities to meet those people face-to-face, exchange ideas, and strengthen the community.

What began as an unexpected invitation to start podcasting has become an important part of her life.

About Tanya and Lyme and Beyond with Tanya

Tanya is a Lyme disease survivor, patient advocate, and host of Lyme and Beyond with Tanya, a podcast dedicated to sharing stories of recovery, hope, and inspiration.

After years of unexplained symptoms and medical dismissal, Tanya began advocating for people affected by Lyme disease and other tick-borne illnesses.

Her podcasting career began through a collaboration with her former Lyme disease physician.

She later launched her own show to focus on individuals who have experienced meaningful recovery and reclaimed their lives after illness.

Her work emphasizes patient validation, community support, mental health awareness, and the belief that healing is possible.

Listen to Lyme and Beyond with Tanya on Apple Podcasts or Spotify.

Key Takeaways

• Medical dismissal and prolonged diagnostic uncertainty can have serious physical and emotional consequences.
• Mental health challenges, including suicidal thoughts, deserve compassionate attention and appropriate professional support.
• Recovery stories can help patients imagine possibilities beyond their current circumstances.
• Different Lyme disease podcasts offer valuable perspectives and serve different needs.
• Support communities should provide validation without spreading medical misinformation.
• Finding meaningful connections and personal goals can support emotional resilience.
• Difficult days do not erase progress or determine the future.
• The Lyme disease community is stronger when advocates, patients, clinicians, and podcasters collaborate.

Key Topics in This Episode

Lyme and Beyond with Tanya, Lyme disease recovery stories, Lyme disease podcast, chronic Lyme disease, Lyme disease medical gaslighting, undiagnosed Lyme disease, Lyme disease mental health, Lyme disease depression, suicidal thoughts and chronic illness, Lyme disease advocacy, Lyme disease support groups, Lyme disease isolation, finding hope with Lyme disease, Lyme disease healing stories, patient empowerment, Lyme disease community, women and Lyme disease, chronic illness and faith, Lyme disease recovery inspiration, ILADS, and Tick Boot Camp.

About This LIVE from ILADS Interview

This conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Rich welcomes Tanya to Tick Boot Camp for a conversation about her personal Lyme disease journey, the creation of Lyme and Beyond with Tanya, and why multiple patient-centered podcasts can work together to educate and support the community.

The interview also explores medical gaslighting, emotional health, finding purpose, and choosing supportive online communities.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Tick Boot Camp Podcast

Explore patient recovery stories, interviews with doctors and researchers, and conversations with advocates helping others navigate Lyme disease.

Mental Health & Lyme Disease – Christina Kantzavelos

Hear a conversation about mental health, chronic illness, emotional support, and navigating the psychological challenges of Lyme disease.

Tick Bite Blueprint

Explore practical educational resources for people navigating a recent tick bite and the early stages of seeking answers.

LIVE from ILADS

Discover more in-person conversations with Lyme disease doctors, researchers, advocates, and other voices working to advance education, treatment, and patient support.

Can a Lyme disease patient who spent three years bedridden help change federal health policy for millions of people?

In this LIVE from ILADS interview, Tick Boot Camp reunites with Meghan Bradshaw, MPH, Lyme disease survivor, public health advocate, and leader at Center for Lyme Action, for an inspiring conversation about Lyme disease advocacy, federal research funding, proposed legislation, and the power of turning personal suffering into lasting change.

After years of misdiagnosis and debilitating tick-borne illness, Meghan spent approximately three years bedridden, underwent numerous orthopedic surgeries, and experienced profound losses of independence and mobility.

Yet while rebuilding her body, she returned to school, pursued a career in public health, and became a federal lobbyist working to prevent other patients from experiencing the same suffering.

At the time of this October 2025 interview, Meghan served as Government Relations Manager at Center for Lyme Action. She subsequently became the organization's Executive Director in January 2026.

During this conversation, Meghan discusses how Center for Lyme Action grew to more than 10,000 advocates, helped secure over $500 million in cumulative federal funding increases, and began advancing legislative proposals that could improve Lyme disease prevention, diagnostics, research, and public health policy.

Her message is powerful: You don't have to be healthy, wealthy, politically connected, or even able to leave your bed to help change the future of Lyme disease.

For the complete story of Meghan's personal battle with Lyme disease, listen to Episode 196: The Bionic Woman – An Interview with Meghan Bradshaw.

From Lyme Disease Patient to Federal Lobbyist

Before becoming a national health policy advocate, Meghan Bradshaw was a patient fighting to survive.

She describes experiencing devastating physical and emotional consequences after years of misdiagnosis and delayed treatment.

At her worst, Meghan spent approximately three years bedridden.

Her illness was associated with extensive joint damage, repeated surgeries, and significant loss of mobility.

She describes undergoing major orthopedic procedures approximately every three months during part of her recovery.

Her body was being reconstructed with titanium and cobalt.

But as she explains to Rich, the emotional consequences were equally profound.

She had lost her independence, autonomy, and much of the life she previously recognized.

Still, she believed she could build a meaningful future.

That belief eventually led her toward public health and federal policy.

Hear Meghan's complete journey in The Bionic Woman – Episode 196.

Why Meghan Went Back to School During Lyme Treatment

While recovering from surgery and undergoing treatment, Meghan made a decision that would change her life.

She returned to school.

As her cognitive symptoms improved, she became increasingly interested in understanding why so many patients experienced similar problems with diagnosis, treatment, and access to care.

She didn't believe those patterns were simply coincidences.

She wanted to understand the underlying systems and identify opportunities to change them.

Meghan pursued graduate education in public health, developing the knowledge and skills needed to address Lyme disease through research, advocacy, and policy.

For Meghan, education became more than a career investment.

It became a source of purpose during recovery.

She wanted to help build a healthcare system in which future patients wouldn't have to endure the same suffering.

What Is Center for Lyme Action?

Center for Lyme Action is a national 501(c)(4) nonprofit organization dedicated to increasing federal funding and advancing policy solutions for Lyme disease and other tick-borne illnesses.

Its work focuses on strengthening the federal government's ability to:

• Prevent tick-borne diseases
• Improve disease detection and diagnosis
• Support research into better treatments
• Expand public health surveillance
• Improve education and awareness
• Fund scientific innovation
• Respond to emerging vector-borne health threats

As a 501(c)(4) organization, Center for Lyme Action can engage extensively in lobbying activities.

Meghan explains that she works directly with members of Congress, congressional staff, and federal agencies to communicate the needs of patients and the scientific community.

The goal is to translate patient experiences into federal policies and funding decisions that can improve public health.

Meet Center for Lyme Action Founder Bonnie Crater

To understand how this advocacy movement began, listen to Episode 378: Center for Lyme Action – An Interview with Bonnie Crater.

In that conversation, Tick Boot Camp explores the organization's origins, mission, and strategy for increasing federal investment in Lyme disease and tick-borne illness research.

Together, Bonnie's and Meghan's interviews illustrate how a growing network of advocates is working to turn patient experiences into measurable policy progress.

More Than $500 Million in Federal Funding Increases

One of the most significant milestones discussed in this interview is Center for Lyme Action's role in securing increased federal investment.

Meghan reports that the organization's collective advocacy efforts helped generate more than $500 million in cumulative increases in federal funding for Lyme disease and other tick-borne conditions over several years.

This represents funding increases across federal programs, not a single grant or one research project.

Federal funding supports many different activities, including scientific research, prevention, public health infrastructure, surveillance, and efforts to develop better diagnostics and treatments.

Meghan credits the organization's advocates, partner organizations, researchers, clinicians, and congressional allies for helping make this progress possible.

She believes these achievements demonstrate what coordinated, persistent advocacy can accomplish.

A National Network of More Than 10,000 Lyme Advocates

Center for Lyme Action's advocacy network had grown to more than 10,000 participants at the time of this interview.

Meghan explains that advocates represented all 50 states, Washington, D.C., and Puerto Rico.

These participants help communicate directly with elected officials about how Lyme disease and other tick-borne illnesses affect their communities.

Some share personal stories.

Others participate in letter-writing campaigns.

Some meet with congressional offices.

Others join virtual advocacy events.

Together, these voices help demonstrate that tick-borne diseases are national public health concerns requiring sustained attention.

How Lyme Patients Can Advocate From Bed

One of the most important parts of this conversation addresses people who are still severely ill.

Rich asks how someone who is bedridden, cognitively impaired, or struggling with overwhelming fatigue can contribute to advocacy.

Meghan understands that challenge personally.

She knows what it feels like to have limited energy and little capacity for additional responsibilities.

That's why Center for Lyme Action works to make participation accessible.

Advocates can use prepared letters, talking points, scripts, and virtual opportunities rather than having to develop everything themselves.

For example, a patient may be able to enter basic contact information into an advocacy campaign and send a prepared message to their elected representatives.

Meghan emphasizes that people shouldn't have to expend precious energy figuring out how to communicate complicated policy issues.

The organization works to make those steps easier.

Even a small action can contribute to a much larger collective effort.

Explore Center for Lyme Action's advocacy opportunities.

Five Federal Legislative Priorities Discussed at ILADS

Meghan highlights five legislative initiatives being pursued at the time of the October 2025 interview.

These proposals address different aspects of the tick-borne disease crisis, from federal research funding to public health technology and food allergen labeling.

The proposals discussed were not all enacted laws. Their status may have changed since the interview.

1. Kay Hagan Tick Act Reauthorization

The Kay Hagan Tick Act was originally signed into law in 2019 to strengthen the federal response to vector-borne diseases.

The legislation supports coordinated efforts involving research, surveillance, prevention, and public health programs.

Meghan explains that reauthorization was among Center for Lyme Action's legislative priorities.

Continued authorization and appropriations can help sustain the infrastructure needed to respond to Lyme disease and other tick-borne threats.

2. STAMP Act: A Postage Stamp Supporting Lyme Research

The proposed STAMP Act would establish a special postage stamp intended to generate additional funding for Lyme disease and tick-borne disease research.

Meghan describes the concept as a way to direct proceeds from stamp purchases toward research supported through the National Institutes of Health.

The idea creates another potential mechanism for supporting scientific investigation while increasing public awareness.

3. BITE Act: Tick-Borne Disease Risk Alerts

The proposed BITE Act would explore using technology to alert people when they are entering areas with elevated vector-borne disease risks.

Meghan compares the concept to the alerts people already receive for severe weather or other emergencies.

Imagine receiving a notification on your phone warning that your current area presents increased risk for tick-borne or mosquito-borne disease exposure.

Such a system could also provide practical prevention guidance.

The goal would be to help people make informed decisions before exposure occurs.

4. Tick Identification Pilot Program Act

The proposed Tick Identification Pilot Program Act would establish grants supporting state-level tick identification services.

Meghan describes a system in which someone could photograph a tick and submit the image to a participating state public health agency.

Under the proposal discussed, a public health professional would respond within approximately 72 hours with information about the tick species and diseases it may carry.

This could help patients and clinicians better understand potential exposure risks and determine appropriate next steps.

Tick identification alone cannot determine whether a person has been infected, but it may provide useful information for clinical evaluation.

5. Alpha-Gal Allergen Inclusion Act

The proposed Alpha-Gal Allergen Inclusion Act would improve food labeling for people living with alpha-gal syndrome.

Alpha-gal syndrome is a potentially serious allergic condition associated with certain tick bites.

Affected individuals may react to mammalian-derived ingredients, making food and product labeling particularly important.

Meghan explains that clearer labeling could reduce the burden of deciphering unfamiliar ingredient names and help people avoid potentially dangerous exposures.

Why Federal Policy Matters to Lyme Patients

For someone living with chronic symptoms, congressional legislation may initially feel far removed from daily life.

Meghan explains why the connection is much closer than it appears.

Federal decisions influence funding for research, public health programs, disease surveillance, diagnostic innovation, prevention, and clinical studies.

These decisions can affect the resources available to researchers and the tools eventually available to clinicians and patients.

Meghan's own experiences shaped her understanding of what was missing from the healthcare system.

She believes stronger policies, better diagnostics, and greater clinical awareness could have changed the trajectory of her illness.

Now she is working to make those resources more accessible to others.

Turning Pain Into Purpose

Rich and Meghan have known each other for years.

Their relationship began when Meghan was sharing her personal Lyme disease story and developing her voice as an advocate.

Since then, Rich has watched her return to school, expand her public health expertise, and become a national policy leader.

During the interview, he reflects on how meaningful it has been to witness younger advocates transform their experiences into service.

Meghan describes advocacy as part of her own healing.

She cannot undo everything that happened to her.

But she can work to change the systems that contributed to her suffering.

That gives her a sense of agency and purpose.

She explains that illness clarified what matters most to her and helped shape the work she wants to do with her life.

Rebuilding a Life After Severe Lyme Disease

Meghan is candid about the fact that her life did not simply return to what it was before illness.

She experienced lasting physical consequences and underwent extensive orthopedic reconstruction.

Her recovery required adapting to a different reality.

But she also came to believe that a changed life could still be meaningful.

Returning to school, developing her career, and serving other patients helped her rebuild a sense of identity.

Her story challenges the idea that recovery must mean returning to every aspect of a person's previous life.

For some people, healing also involves discovering new possibilities, new roles, and new ways to contribute.

Why Every Advocate's Talent Matters

Meghan emphasizes that there is no single correct way to advocate.

Some people are gifted storytellers.

Others understand science.

Some are experienced communicators, organizers, or healthcare professionals.

Others have skills in fundraising, research, education, or public policy.

Meghan mentions advocates including Ali Moresco, Nicole Bell, and Lindsay Keys as examples of people bringing different talents to the community.

Her message is that progress becomes possible when people contribute what they can.

Not everyone needs to become a lobbyist.

Not everyone needs to speak publicly.

And not everyone needs to devote their career to advocacy.

There is value in every contribution.

Patient Stories Can Influence Congress

Meghan shares that many congressional offices have personal connections to Lyme disease or other tick-borne illnesses.

During meetings, lawmakers or staff members have sometimes revealed that they or close family members have been affected.

Those experiences can help create understanding across political and geographic differences.

Meghan believes productive, respectful conversations are essential.

The objective is not simply to demand attention.

It is to help elected officials understand the scale of the problem, the gaps in the current response, and the opportunities for meaningful action.

That includes explaining what patients are experiencing and why federal investments matter.

Why Bipartisan Lyme Advocacy Matters

Tick-borne diseases do not distinguish between political affiliations.

They affect people across the country, regardless of party, income, age, or background.

Center for Lyme Action emphasizes a bipartisan approach to federal advocacy.

Meghan's work involves communicating with members of Congress and federal officials who may hold different political views but share concerns about public health, scientific research, and disease prevention.

Building those relationships can help create durable support for Lyme disease priorities.

The goal is progress that can continue across changing political administrations and congressional sessions.

Two Ways Patients Can Contribute to Progress

Rich highlights two accessible opportunities that Tick Boot Camp frequently encourages patients to explore.

1. Contribute to MyLymeData

The MyLymeData patient-powered research registry allows patients to share information about their experiences with Lyme disease.

Aggregated patient-reported information can help researchers better understand symptoms, diagnostic challenges, treatment experiences, and quality of life.

2. Participate in Center for Lyme Action

Through Center for Lyme Action, patients and supporters can participate in advocacy campaigns, communicate with elected officials, and help support efforts to increase federal investment.

Meghan explains that membership is available, but paid membership is not required to participate in the organization's advocacy activities.

These opportunities allow people to contribute through either patient-powered research or federal advocacy—or both.

The Future of Lyme Disease Research and Treatment

Meghan is optimistic about the momentum building around Lyme disease.

She points to increased federal funding, expanding advocacy networks, growing attention from policymakers, and proposed legislation as signs of meaningful progress.

She also emphasizes that significant work remains.

Patients still need better diagnostics.

Researchers need greater support.

Clinicians need improved tools.

And people experiencing persistent symptoms need more effective, evidence-based treatment options.

The progress Meghan describes does not mean these problems have been solved.

It means advocates are helping create conditions in which better solutions may become possible.

About Meghan Bradshaw, MPH

Meghan Bradshaw, MPH is a Lyme disease and tick-borne illness advocate and Executive Director of Center for Lyme Action.

At the time of this October 2025 interview, she served as the organization's Government Relations Manager. She became Executive Director in January 2026.

After experiencing severe tick-borne illness, years of misdiagnosis, and extensive orthopedic surgeries, Meghan dedicated herself to improving the systems responsible for prevention, diagnosis, treatment, and research.

She pursued graduate education in public health and has participated in federal tick-borne disease policy and research initiatives.

Her advocacy includes working with Congress, federal agencies, patient organizations, researchers, and clinicians to increase federal investment and strengthen the national response to Lyme disease and other tick-borne illnesses.

Read more about Meghan's personal story and Center for Lyme Action's mission.

Key Topics in This Episode

Meghan Bradshaw, Center for Lyme Action, Lyme disease advocacy, Lyme disease federal funding, $500 million Lyme funding, Lyme disease research funding, Lyme disease legislation, Kay Hagan Tick Act, STAMP Act, BITE Act, Tick Identification Pilot Program Act, Alpha-Gal Allergen Inclusion Act, alpha-gal syndrome, Lyme disease prevention, tick-borne disease public policy, Lyme disease Congress, federal Lyme research, Lyme disease patient advocacy, Lyme disease recovery, patient-powered research, MyLymeData, Lyme disease misdiagnosis, tick-borne disease research, public health, Lyme disease clinical trials, ILADS, and Tick Boot Camp.

About This LIVE from ILADS Interview

This conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Rich and Meghan reconnect nearly five years after their first Tick Boot Camp interview.

They reflect on their longstanding friendship, their recent participation in a Lyme awareness fashion event, Meghan's personal transformation, and the expanding role of Center for Lyme Action in federal policy.

The discussion highlights how patient experiences can influence research priorities, legislation, public health funding, and the future of Lyme disease care.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Episode 196: The Bionic Woman – An Interview with Meghan Bradshaw

Hear Meghan's full personal story, including her devastating Lyme disease journey, extensive surgeries, recovery, and the experiences that inspired her to become a national advocate.

Episode 378: Center for Lyme Action – An Interview with Bonnie Crater

Meet Center for Lyme Action founder Bonnie Crater and learn about the organization's origins, mission, and strategy for increasing federal funding for Lyme disease and tick-borne illness research.

LIVE from ILADS Conference Interviews

Explore more in-person conversations with leading doctors, researchers, advocates, and innovators advancing Lyme disease awareness, science, and treatment.

Tick Boot Camp Podcast

Discover patient recovery stories and conversations with the people working to improve Lyme disease education, research, treatment, and advocacy.

Legislative proposals and funding figures are discussed in their historical context. For current bill status and advocacy opportunities, consult Center for Lyme Action and official congressional sources.

What if some of the depression, anxiety, brain fog, cognitive dysfunction, OCD, speech changes, and other neuropsychiatric symptoms experienced by people with Lyme and other vector-borne diseases involve more than the infection itself?

In this episode of the Tick Boot Camp Podcast, Matt Sabatello sits down with Dr. Lindsey Wells, ND, a Connecticut naturopathic physician whose work focuses heavily on children with Lyme Disease, PANS/PANDAS, autism spectrum disorder, neurodevelopmental conditions, and other vector-borne diseases.

The centerpiece of the conversation is Dr. Wells' newly published research, “Folate Receptor Alpha Autoantibodies in Vector-Borne Disease Populations.”

Her study explored an intriguing question: could some people with Lyme disease, Bartonella, Babesia, or other vector-borne infections also have an immune-mediated problem that prevents enough folate from reaching the brain?

The findings open an important new area of investigation.

What Are Folate Receptor Alpha Autoantibodies?

Folate is essential for neurological function, neurotransmitter production, mitochondrial health, methylation, and numerous other biological processes.

But having adequate folate in the bloodstream does not necessarily mean enough folate is reaching the brain.

Dr. Wells explains how folate receptor alpha autoantibodies, commonly abbreviated FRAAs, can interfere with the folate receptor responsible for helping transport folate across the blood-brain barrier.

These autoantibodies can either block folate from attaching to the receptor or bind to the receptor and interfere with its normal function.

The result may contribute to a condition known as cerebral folate deficiency, where folate availability inside the central nervous system is inadequate despite seemingly normal blood levels.

A Surprising Finding in Vector-Borne Disease Patients

Dr. Wells and her colleagues examined patients with confirmed evidence of vector-borne infections.

Their study found that 61.8% of the vector-borne disease-positive patients tested positive for folate receptor alpha autoantibodies.

That finding immediately raises bigger questions.

Are vector-borne infections contributing to the development or elevation of these autoantibodies?

Can Lyme or another infection be treated while FRAAs remain elevated?

Could persistent FRAAs contribute to symptoms that patients and clinicians continue attributing entirely to infection?

The Borrelia Finding That Caught Dr. Wells' Attention

One of the most intriguing findings involved the soluble folate receptor, an abnormal finding seen much less frequently than standard binding or blocking FRAAs.

Eight patients in the study were positive for soluble folate receptor.

Seven of those eight had confirmed evidence of Borrelia species infection, while the remaining patient had an indeterminate result involving relapsing fever Borrelia.

Dr. Wells discusses why this observation raises questions about whether Borrelia infection, immune activation, inflammation, or another biological mechanism could influence folate receptor function.

Bartonella, PANS/PANDAS and Severe Neuropsychiatric Symptoms

The conversation also goes deep into Bartonella.

In Dr. Wells' clinical experience, Bartonella frequently appears in some of the more complex children she treats with PANS/PANDAS, particularly those experiencing symptoms such as:

• Severe anxiety
• OCD
• Rage and aggression
• Irritability
• Sensory sensitivities
• Cognitive or behavioral regression
• Persistent neuropsychiatric flares

Among FRAA-positive patients in her vector-borne disease study, Bartonella was also the most common individual infection identified.

Dr. Wells explains why she believes clinicians evaluating children with unusually severe or persistent PANS/PANDAS symptoms should consider looking beyond traditional triggers such as strep.

Can Infection Trigger an Autoimmune Process That Continues Afterwards?

One of the most important parts of the interview explores what happens after an infection.

Dr. Wells describes how an infection can activate the immune system, but in susceptible patients the immune response may not simply return to baseline once the original infection improves.

Immune dysregulation and molecular mimicry may potentially allow inflammatory or autoimmune processes to continue.

That creates an important question for Lyme disease:

Could a patient successfully reduce or address an infectious burden but continue experiencing symptoms because another downstream immune or metabolic problem remains?

What Causes FRAAs?

Dr. Wells discusses several factors associated with FRAAs.

One is a non-genetic hereditary pattern in which autoantibodies may be transmitted from a parent.

Another important area is animal dairy consumption.

She discusses research suggesting that proteins associated with animal dairy may share similarities with folate receptor structures. Through a molecular mimicry mechanism, antibodies generated against those proteins could potentially cross-react with folate receptors.

Dr. Wells therefore commonly incorporates dairy removal when addressing FRAA-positive patients.

She also discusses clinical observations suggesting that FRAA levels can fluctuate and may rise during periods of infection or physiological stress.

The FRAT Test

Patients cannot determine FRAA status through a routine folate blood test.

Dr. Wells discusses the FRAT Folate Receptor Autoantibody Test, a specialty blood test designed to detect autoantibodies to folate receptor alpha.

The test evaluates binding and blocking autoantibodies and can also identify the soluble folate receptor finding discussed in Dr. Wells' research.https://www.fratnow.com/

Folinic Acid and Leucovorin

If FRAAs are interfering with one pathway responsible for transporting folate into the brain, Dr. Wells explains that another approach may be to use an alternative transportation pathway.

That is where folinic acid, including the prescription form leucovorin, enters the discussion.

Rather than eliminating the autoantibodies themselves, folinic acid can utilize another folate transport mechanism to help deliver folate into the central nervous system.

Dr. Wells discusses improvements she has observed clinically in areas such as anxiety, OCD, cognitive function, communication, speech fluency, and other neuropsychiatric symptoms.

Importantly, she emphasizes that dosing needs to be individualized and gradually increased under the guidance of a knowledgeable practitioner.

People interested in the supplemental form discussed during the episode can learn more about Emephysis HI-FOLINIC.https://emephysis.com/products/hi-folinic

Treating More Than the Infection

One of the themes throughout this conversation is that complex chronic illness rarely comes down to one intervention.

Dr. Wells describes a three-part approach to many of her complex pediatric patients:

Address the microbial burden. Depending upon the individual patient, this may include vector-borne infections and other infectious triggers.

Address immune dysregulation and inflammation. This may involve anti-inflammatory and immunomodulatory strategies.

Support the symptoms affecting daily life. Helping a child function, communicate, sleep, attend school, interact socially, and experience less anxiety or OCD matters while deeper underlying issues are being addressed.

It is an approach that recognizes both the biology of chronic illness and the reality of the person living through it.

Learn More About Dr. Lindsey Wells

Dr. Lindsey Wells practices naturopathic medicine in Trumbull, Connecticut, with a major focus on complex pediatric conditions including PANS/PANDAS, autism, neurodevelopmental disorders, and vector-borne diseases.

Learn more about Dr. Wells and her practice.https://lindseywellsnd.com/about/

Read Dr. Wells' Research

Folate Receptor Alpha Autoantibodies in Vector-Borne Disease Populations

LIVE from ILADS: What happens when a Lyme disease patient needs a medication—but the standard dose, ingredients, or delivery method simply don't work for them?

Tick Boot Camp welcomes back Ray Solano, RPh, MBA, CCN, founder and owner of PD Labs, a specialty compounding pharmacy that works with practitioners to create personalized medications for patients with Lyme disease, CIRS, mold-related illness, pain, and other complex conditions.

This is Ray's second consecutive LIVE from ILADS conversation with Tick Boot Camp.

The first interview introduced Rich to the world of compounding pharmacy. This time, they go deeper into what personalized compounding can actually mean for someone with complex Lyme disease.

The discussion explores:

• Liposomal antibiotics
• Alternative medication delivery methods
• Medication sensitivities
• Methylene blue
• Low-dose naltrexone (LDN)
• Peptides
• BPC-157
• KPV
• Larazotide
• Curcumin
• Gut health
• Immune modulation
• Off-label prescribing
• Practitioner-pharmacist collaboration
• Precision medicine

The larger message is simple:

When one size doesn't fit all, changing the dose, formulation, delivery system, or inactive ingredients may give a practitioner additional options for an individual patient.

This interview was recorded live at the ILADS conference, so you may hear some of the energy and background activity of the event throughout the conversation.

What Is a Compounding Pharmacy?

Most people are familiar with traditional retail pharmacies.

A doctor writes a prescription for a commercially manufactured medication.

The pharmacy dispenses it.

Compounding works differently.

A compounding pharmacy can prepare a customized medication based on a prescription for an individual patient's needs.

That might involve changing:

• The dose
• The strength
• The dosage form
• The delivery method
• Certain inactive ingredients

A medication might need to be prepared as a capsule for one patient, a sublingual formulation for another, or a topical preparation in another situation.

Solano compares it to ordering a customized meal at a restaurant.

Someone may need one ingredient removed because of an allergy or intolerance. Another person may need something prepared differently.

The underlying idea is personalization.

PD Labs currently describes its work similarly, emphasizing customized medications and specialized formulations for conditions including Lyme disease, CIRS, pain, and other complex health challenges.

Why Compounding Can Matter in Complex Lyme Disease

People with complex Lyme and tick-borne illness can present with dramatically different needs.

One patient may tolerate a standard medication.

Another may struggle with the dosage.

Another may react to an inactive ingredient.

Another may need a different delivery method.

Solano believes this is where compounding can become particularly useful.

Instead of assuming the commercially available version is the only option, the prescribing practitioner and compounding pharmacist may be able to explore whether a different formulation better fits that particular patient.

That makes the pharmacy another member of the personalized-care team.

The Patient-Doctor-Pharmacist Triad

One of the most important ideas in this interview is what Solano describes as a triad:

Patient + Prescribing Practitioner + Compounding Pharmacist

The patient brings their experience and response to treatment.

The practitioner evaluates the patient and determines the medical strategy.

The compounding pharmacist brings specialized knowledge about formulation, dosing options, delivery methods, and what can appropriately be prepared under a prescription.

Solano says PD Labs also educates practitioners about available options and collaborates with them when developing individualized formulations.

For complicated Lyme disease cases, that collaboration may expand the practitioner's therapeutic toolbox.

Liposomal Antibiotics & Lyme Disease

One of the most interesting areas Solano discusses is liposomal medication delivery.

A liposome is essentially a tiny lipid-based structure that can be used as a drug-delivery vehicle.

Solano discusses using lipid-based formulations with oral antibiotics commonly prescribed in Lyme disease care, including doxycycline.

He describes PD Labs' approach as an attempt to change how certain medications are delivered and absorbed and, in some patients, potentially improve tolerability.

This is particularly relevant when a patient needs a medication but struggles with the conventional formulation.

Solano specifically discusses gastrointestinal irritation associated with doxycycline and describes the pharmacy's experience using alternative lipid-based formulations.

These are claims and clinical observations discussed by Solano during the interview and should not be interpreted to mean that a liposomal formulation is proven superior to standard doxycycline for Lyme disease or appropriate for every patient.

Can Delivery Method Change Treatment Tolerance?

This becomes a recurring theme throughout the conversation.

Sometimes the question isn't simply:

Which medication?

It may also be:

How is that medication getting into the patient?

The same active ingredient can potentially be formulated in different ways depending on the medication, prescription, and patient's needs.

For people who have become highly reactive during chronic illness, those details can matter.

This connects naturally with many of Tick Boot Camp's other ILADS conversations about precision medicine:

The objective isn't finding the protocol for Lyme disease.

It's finding an appropriate strategy for this patient.

Methylene Blue & Lyme Disease

Solano also discusses methylene blue, a medication with a long history of medical use that has attracted interest among some Lyme-literate practitioners.

During the interview, he specifically references work involving Dr. Richard Horowitz, methylene blue, dapsone, and botanical combinations.

Solano describes PD Labs' work developing alternative methylene blue formulations intended to improve delivery and tolerability.

Methylene blue is a prescription medication with important contraindications, interactions, and dosing considerations. It is not appropriate for everyone and should only be used under appropriate medical supervision.

For more Tick Boot Camp conversations about complex pharmaceutical Lyme treatment strategies, explore Dr. Richard Horowitz's interviews.

Low-Dose Naltrexone: Same Medication, Different Dose

Another useful illustration of compounding is low-dose naltrexone, commonly called LDN.

Naltrexone is commercially available at substantially higher doses for FDA-approved indications involving alcohol and opioid use disorders.

In integrative and functional medicine, practitioners may prescribe much smaller doses off-label for other purposes.

That creates a practical compounding need.

Solano discusses customized tablets that can help practitioners adjust or titrate doses rather than forcing patients into one fixed strength.

The example illustrates why compounding isn't necessarily about inventing a completely new drug.

Sometimes the innovation is in how an existing medication is prepared for an individual patient.

Peptides & Complex Chronic Illness

The conversation then moves into one of the fastest-evolving areas discussed throughout the ILADS interviews:

peptide therapy.

Peptides are short chains of amino acids that can act as signaling molecules within the body.

Solano discusses several peptides or peptide-related compounds being explored by practitioners working with complex chronic illness, particularly in relation to inflammation, gastrointestinal function, tissue repair, and immune regulation.

The compounds discussed include:

• BPC-157
• KPV
• Larazotide

Rich notes that several Tick Boot Camp guests have described BPC-157 as part of the rehabilitative phase of their personal recovery journeys.

Solano discusses PD Labs' work with alternative formulations designed around these emerging practitioner protocols.

Peptide therapies vary considerably in their regulatory status and evidence base. Discussion in this interview should not be interpreted as establishing these compounds as proven treatments for Lyme disease.

Gut Health After Lyme Treatment

Why discuss the gut during a conversation about Lyme disease?

Because patients undergoing prolonged or complicated treatment frequently report gastrointestinal challenges.

Solano discusses patients who have:

• Gut inflammation
• Significant food restrictions
• Difficulty tolerating foods
• Gastrointestinal symptoms during chronic illness

His peptide discussion partly centers on strategies practitioners may explore when attempting to support gastrointestinal function.

The broader principle is familiar to the Tick Boot Camp community:

Recovery isn't necessarily finished when microbial treatment ends.

Some patients need a significant period of rebuilding and rehabilitation.

BPC-157 & Rehabilitation

Rich specifically asks about BPC-157 because previous Tick Boot Camp guests have described using it during recovery.

Solano discusses a lipid-particle BPC formulation that PD Labs developed as an alternative to injectable delivery.

This is another example of the larger theme of the episode:

The molecule is only part of the equation.

Dose, formulation, delivery, tolerance, and the individual patient's needs can all influence how a practitioner approaches treatment.

Curcumin & Inflammation

Solano also discusses curcumin and tetrahydrocurcuminoids in the context of inflammation and pain.

Rather than focusing only on conventional capsules or powders, he describes applying similar lipid-delivery concepts to these compounds.

Again, this discussion reflects Solano's formulation philosophy rather than establishing a particular compounded curcumin product as a Lyme disease treatment.

Alpha-Gal, Sensitivities & Inactive Ingredients

The Lyme and tick-borne disease community has an especially important reason to think about medication ingredients:

alpha-gal syndrome and other sensitivities.

Some patients may need to consider whether medication formulations contain mammalian-derived ingredients or other components they don't tolerate.

Others may react to dyes, fillers, binders, or particular capsule materials.

The active medication may be appropriate while the commercially manufactured product is not.

A compounding pharmacist can sometimes work with the prescriber to determine whether an alternative formulation is possible.

This is where personalization becomes much more practical than simply saying every patient needs a unique treatment plan.

Sometimes customization comes down to the actual ingredients inside the capsule.

Off-Label Prescribing

The interview also addresses a subject that can confuse patients:

off-label medication use.

Off-label prescribing generally means an appropriately licensed clinician prescribes an approved medication for a use, dose, route, or population not included in its FDA-approved labeling.

It does not automatically mean that the treatment is illegal or inappropriate.

Off-label prescribing is used throughout medicine.

However, an off-label use also shouldn't automatically be interpreted as proven safe or effective for a particular condition simply because a clinician can legally prescribe it.

Solano describes compounding pharmacies as working with prescribers when an individualized formulation is needed to carry out an appropriate prescription.

Precision Medicine Is More Than Choosing a Drug

Rich repeatedly brings the conversation back to precision medicine.

Precision isn't simply deciding which antimicrobial to use.

It may involve:

• Which medication
• What dose
• How quickly to titrate
• Which delivery method
• Which inactive ingredients
• What the patient can tolerate
• Which other conditions are present
• What phase of treatment or recovery the patient is in

Solano describes working with practitioners to match formulations to those individual needs.

That flexibility is particularly relevant to patients who sit outside the middle of the traditional bell curve.

Immune Modulation & the Future of Compounding

Looking forward, Solano is especially interested in immune modulation and peptide therapies.

He describes peptides as potentially highly targeted signaling tools and points out that peptide-based medicine itself isn't new—insulin and oxytocin are familiar examples of peptide hormones.

His interest is in how newer or differently applied peptide strategies might eventually expand options available to practitioners working with immune dysfunction and complex chronic illness.

As with many emerging areas discussed at ILADS, more research will be necessary to determine which approaches provide meaningful clinical benefit, for whom, at what doses, and with what risks.

Today's Tools—and Tomorrow's

One reason Tick Boot Camp returned to Ray Solano for a second interview is the message of hope through expanding options.

Complex Lyme patients often reach moments when they feel they've tried everything.

But medicine isn't static.

New research emerges.

Existing drugs are investigated in different ways.

Delivery technologies evolve.

Practitioners learn from patients.

Pharmacists develop new formulation options.

None of that guarantees that the next treatment will be the answer for a particular person.

But it does mean that today's toolbox isn't necessarily tomorrow's toolbox.

For someone who has been sick for years, knowing that clinicians, researchers, pharmacists, and patients are still working to develop better options can itself be meaningful.

About Ray Solano, RPh, MBA, CCN

Ray L. Solano, RPh, MBA, CCN is the founder and owner of PD Labs, a specialty compounding pharmacy based in Cedar Park, Texas.

Solano is a pharmacist and board-certified clinical nutritionist with decades of experience in pharmacy and integrative healthcare. He graduated from Mercer Southern School of Pharmacy with an emphasis in nuclear pharmacy and has pursued advanced training in areas including sterile compounding, nutritional medicine, hormones, and specialized formulations.

PD Labs creates customized medications and works with prescribing practitioners on formulations for a variety of patient populations, including people with Lyme disease, CIRS, mold-related illness, pain, and other complex health conditions.

Solano also hosts Healthy Choices, a health-focused podcast and radio program featuring conversations with practitioners, researchers, and other healthcare professionals.

Key Topics in This Episode

Ray Solano, PD Labs, Prescription Dispensing Laboratories, compounding pharmacy, Lyme disease compounding pharmacy, Lyme disease treatment, personalized Lyme treatment, precision medicine, liposomal antibiotics, liposomal doxycycline, doxycycline Lyme disease, methylene blue Lyme disease, Dr. Richard Horowitz, low-dose naltrexone, LDN, peptides, peptide therapy, BPC-157, KPV, larazotide, curcumin, alpha-gal syndrome, medication sensitivities, Lyme disease gut health, immune modulation, off-label medications, customized medications, specialty pharmacy, integrative medicine, Lyme disease recovery, ILADS, and tick-borne disease.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Ray joined Tick Boot Camp at ILADS for the second consecutive year. Their first conversation introduced the fundamentals of compounding pharmacy; this follow-up focuses more deeply on the formulations and emerging tools being used or explored by practitioners caring for complex Lyme disease patients.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations—shorter, focused, and surrounded by the energy and activity of ILADS.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Hear directly from Lyme disease doctors and healthcare professionals about the different approaches being used in complex chronic illness care.

Explore the Tick Boot Camp Podcast for patient stories and conversations with doctors, researchers, pharmacists, advocates, and other voices working to improve understanding of Lyme disease and tick-borne illness.

LIVE from ILADS: What happens when nearly 20,000 Lyme disease patients pool their experiences to help researchers understand what patients are actually living through?

Tick Boot Camp sits down in person with Dorothy Kupcha Leland, President of LymeDisease.org to explore the power of MyLymeData, patient-driven Lyme disease research, sex-based differences in persistent Lyme disease, evidence-based patient education, and the importance of giving people reliable information without telling them which treatment they should choose.

This conversation was also personally meaningful for Tick Boot Camp.

After years of interacting with Dorothy through Zoom and other platforms, Rich and Dorothy finally had the opportunity to meet face-to-face at ILADS.

The timing couldn't have been better.

At the time of this interview, MyLymeData was celebrating its 10th anniversary and approaching 20,000 enrolled patients.

Those patients have contributed information about tick bites, diagnostic delays, symptoms, doctors, treatments, outcomes, and other aspects of living with Lyme disease—creating a large patient-powered dataset researchers can use to ask questions that traditional studies haven't always addressed.

For people who are too sick to become traditional advocates, MyLymeData also offers something powerful:

Your experience can become data. Your data can become research. And that research can help move the Lyme community forward.

What Is MyLymeData?

MyLymeData is LymeDisease.org's patient-powered research registry.

Launched in 2015, the program allows people with Lyme disease to privately contribute real-world information about their experiences.

Participants can report information such as:

• Whether they remember a tick bite
• How long diagnosis took
• How many doctors they saw
• Symptoms they experienced
• Treatments they tried
• What helped
• What didn't help
• Co-infections and other diagnoses
• Functional impact of illness
• Other aspects of their Lyme disease journey

Rather than relying exclusively on what clinicians, insurance claims, or researchers record about Lyme disease patients, MyLymeData gives patients the opportunity to report their experiences directly.

That distinction matters.

Turning Patient Stories Into Lyme Disease Research

Dorothy describes MyLymeData as a way to assemble thousands of individual experiences into a larger picture of what Lyme patients actually look like and what they need.

One person's experience is a story.

Thousands of systematically collected experiences become data that researchers can analyze.

That patient-powered model has allowed MyLymeData to investigate questions surrounding diagnosis, treatment, symptoms, access to care, quality of life, and differences among patient subgroups.

Researchers have also used the registry in peer-reviewed publications.

Explore MyLymeData research and publications to see how patient-reported information is being transformed into Lyme disease research.

Why Participating Can Be a Form of Advocacy

Rich explains why Tick Boot Camp has frequently encouraged patients to participate in MyLymeData.

People living with severe chronic illness often ask:

"What can I do to help?"

Not everyone has the health to attend events, lobby lawmakers, organize fundraisers, create content, or become a public advocate.

But contributing information to patient-powered research can itself be a meaningful form of advocacy.

A patient can document what happened to them.

That experience becomes part of a larger dataset.

Researchers can analyze that information.

And eventually the findings may help shape future research questions, healthcare policy, clinical studies, and understanding of the patient population.

For someone who feels that Lyme disease has taken away their ability to contribute, that can be deeply validating.

What MyLymeData Revealed About Women & Lyme Disease

One of the most important examples discussed in this interview involves sex-based differences in persistent Lyme disease.

For years, Tick Boot Camp noticed something that was difficult to ignore:

A large percentage of people volunteering to publicly tell their Lyme disease stories were women.

The platform was sometimes criticized for disproportionately interviewing women.

But Tick Boot Camp wasn't intentionally excluding men.

Rich explains that the team actively tried to find more men willing to share their Lyme experiences and repeatedly encountered the same difficulty.

Then MyLymeData provided research that helped add context to what the community was observing.

Women Report Different Experiences With Persistent Lyme Disease

The MyLymeData research discussed by Dorothy examined data from 2,170 people with persistent Lyme disease.

Researchers found significant differences between the experiences reported by women and men.

Women reported:

• Longer diagnostic delays
• More severe symptoms
• Greater functional impairment
• Higher rates of tick-borne co-infections
• More misdiagnoses

The researchers did not find significant sex-based differences in antibiotic treatment response or side effects.

The takeaway isn't that men and boys don't get Lyme disease.

They absolutely do.

The question is whether biological sex may influence disease presentation, diagnosis, progression, or other aspects of Lyme disease—and whether researchers need to examine those differences rather than averaging everyone together.

Read more about sex-based differences in Lyme disease and the research generated using MyLymeData.

Why Sex-Disaggregated Lyme Research Matters

Historically, many medical studies did not adequately examine whether diseases affected men and women differently.

If researchers combine everyone into one dataset without analyzing sex-based differences, important patterns may disappear inside the average.

Dorothy explains why identifying those patterns matters for everyone.

Could symptoms present differently?

Could one group experience longer diagnostic delays?

Could biological differences influence immune responses?

Could testing perform differently?

Could different approaches eventually improve outcomes?

These are questions for research—not reasons to assume every woman or every man will experience Lyme disease the same way.

That distinction fits another major theme running throughout Tick Boot Camp's ILADS conversations:

Individual patients should not be reduced to averages.

Validation Through Patient-Reported Data

MyLymeData can also provide something less measurable but extremely important:

validation.

Someone who has experienced profound fatigue, cognitive dysfunction, pain, or other difficult-to-explain symptoms may have spent years wondering whether anyone else experiences the same thing.

Patient-reported data can show them that they aren't alone.

Rich describes how Tick Boot Camp community members can look at aggregated symptom information and recognize experiences similar to their own.

Instead of seeing one social media post or hearing one person's anecdote, they can see patterns drawn from thousands of patients.

The patient's individual experience remains unique.

But seeing similar experiences reflected in a larger population can help people feel heard and understood.

The 10-Year MyLymeData Research Chartbook

At the time of this ILADS interview, Dorothy shared that LymeDisease.org was preparing a special publication summarizing what the organization had learned during the first decade of MyLymeData.

That resource has since been released.

The MyLymeData 2025 Research Chartbook brings together a decade of patient-powered research and provides a visual overview of findings generated through the registry.

Among the subjects addressed are:

• Diagnostic delays
• Persistent Lyme disease
• Treatment outcomes
• Patient subgroups
• Sex-based differences
• Clinical trial enrollment
• Quality of life
• Treatment response
• Research design
• Real-world patient populations

For patients, clinicians, researchers, and advocates who want a deeper look at what patient-generated data has contributed to Lyme disease research, the chartbook is an important resource.

LymeDisease.org as a Lyme News Hub

MyLymeData isn't the organization's only major contribution.

Dorothy describes LymeDisease.org as a news hub for the Lyme community.

When her daughter became sick more than 20 years ago, Dorothy remembers how difficult it was to find useful Lyme disease information.

There were relatively few books and far fewer reliable online resources than exist today.

LymeDisease.org has helped build that information ecosystem through:

• Lyme disease news
• Research coverage
• Educational articles
• Blogs
• The Lyme Times
• Weekly email newsletters
• Patient resources
• Physician information
• Advocacy
• MyLymeData

Dorothy's own Touched by Lyme writing has also become a long-running source of Lyme disease news and commentary.

"Show Us the Receipts"

Rich highlights something Tick Boot Camp particularly values about LymeDisease.org:

Research is linked back to its source.

Rather than simply announcing an exciting headline or repeating a treatment claim, the organization frequently gives readers access to the underlying study or evidence being discussed.

That allows patients to investigate further.

It also allows advocates to understand where claims originate rather than simply repeating something they encountered on social media.

In a disease community where information can become polarized quickly, access to primary research matters.

Information Without Telling Patients What to Do

Dorothy makes an important distinction about LymeDisease.org's role.

Patients sometimes contact the organization wanting specific instructions:

What medication should I take?

Which treatment should I do?

That's not LymeDisease.org's role.

Those decisions belong between patients and qualified healthcare professionals.

Instead, LymeDisease.org tries to help people become better-informed patients.

Understanding available treatments, controversies, evidence, risks, and unanswered questions can help someone have a more productive conversation with their doctor.

SOT: A Good Example of Responsible Lyme Education

Dorothy uses Supportive Oligonucleotide Therapy (SOT) as an example.

Patients were asking questions about it.

Rather than telling people:

"You should do SOT."

or

"You should never do SOT."

LymeDisease.org published information explaining the treatment and the surrounding questions and controversy.

Dorothy's philosophy was straightforward:

Patients are asking.

Give them information.

Then let them discuss whether it is appropriate for their individual situation with their healthcare provider.

That approach closely parallels Tick Boot Camp's philosophy when covering emerging and controversial treatments.

For more conversations specifically involving SOT, explore Tick Boot Camp's interview with Dr. Hank Sloan, ND.

One Treatment Can Help One Person & Hurt Another

Dorothy's perspective was shaped partly by eight years leading a Lyme disease support group in Sacramento.

She heard countless patient stories.

And she noticed something important:

Almost any treatment someone mentioned had helped somebody—and had failed or caused problems for somebody else.

She mentions examples ranging from IV antibiotics to hyperbaric oxygen.

That's why anecdotal success shouldn't automatically become a universal treatment recommendation.

A person who finally improves after years of suffering understandably wants to tell everyone:

"This is what worked!"

That desire usually comes from a good place.

But another patient may have a completely different infection profile, physiology, medical history, co-infections, immune response, environmental exposure, or set of underlying conditions.

What helped one person may not help another.

There Is No Universal Lyme Treatment

This becomes one of the strongest shared principles between LymeDisease.org and Tick Boot Camp.

There is no single treatment that's appropriate for everyone.

Precision matters.

Individualization matters.

The clinician matters.

The patient matters.

That's also why Tick Boot Camp doesn't tell listeners which Lyme doctor they should see.

Instead, the Tick Boot Camp Doctors Directory gives people access to long-form interviews and profiles so they can hear physicians explain their own philosophies, approaches, experiences, and areas of focus.

Patients can learn.

They can ask better questions.

They can determine which philosophy resonates with them.

But individualized medical decisions remain between the patient and their healthcare team.

Reliable Information Builds Community

Dorothy also discusses another important function of LymeDisease.org:

helping people feel connected to a community.

A weekly newsletter may sound simple.

But for someone who has spent years isolated by illness, knowing what's happening in Lyme disease research, advocacy, treatment, and policy can help them feel connected to something larger.

Good information can empower.

It can validate.

It can create questions to bring to a doctor.

It can help someone discover new research.

And it can give patients ways to participate in progress even while they're still sick.

How Can Lyme Patients Help?

Dorothy closes with several simple ways people can support the work:

Participate in MyLymeData.

Adding your experience contributes to a growing body of patient-powered research.

Join the LymeDisease.org mailing list.

Receiving and sharing reliable information helps spread awareness and keeps people connected with developments in the field.

Support LymeDisease.org.

For people who are able, donations help sustain the organization's education, advocacy, communication, and research efforts.

Most importantly, patients shouldn't underestimate the value of their own experience.

The information one person contributes may feel small.

Combined with thousands of other patients, it can reveal patterns that researchers otherwise might never see.

About Dorothy Kupcha Leland

Dorothy Kupcha Leland is President of LymeDisease.org, one of the longest-running patient advocacy organizations serving people affected by Lyme disease and other tick-borne illnesses.

Her involvement in the Lyme community grew from her family's experience after her daughter became ill more than two decades ago.

Before taking on her current leadership role, Dorothy spent years as a Lyme disease support group leader in Sacramento, giving her direct exposure to the wide range of experiences, treatments, successes, setbacks, and challenges reported by patients.

She writes the long-running Touched by Lyme blog and is co-author of When Your Child Has Lyme Disease: A Parent's Survival Guide and Finding Resilience: A Teen's Journey Through Lyme Disease.

LymeDisease.org's work includes patient education, advocacy, research, news coverage, physician resources, and MyLymeData, its large-scale patient-powered research registry.

Key Topics in This Episode

Dorothy Leland, LymeDisease.org, MyLymeData, Lyme disease research, patient-powered research, Lyme disease patient registry, persistent Lyme disease, chronic Lyme disease, women and Lyme disease, sex differences in Lyme disease, Lyme disease symptoms, Lyme disease diagnosis, diagnostic delays, Lyme disease treatment, SOT Lyme disease, Supportive Oligonucleotide Therapy, Lyme disease advocacy, patient advocacy, Lyme disease data, real-world evidence, individualized Lyme treatment, precision medicine, Lyme disease doctors, Lyme disease community, ILADS, and patient education.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

After years of virtual interactions, this was the first time Rich and Dorothy had the opportunity to meet and record together in person.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations—shorter, focused, and surrounded by the energy and activity of ILADS.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Explore conversations with Lyme disease doctors and healthcare professionals to learn directly from practitioners about their approaches to Lyme disease and complex chronic illness.

Explore conversations with Lyme disease researchers working to advance understanding of tick-borne disease.

Visit the Tick Boot Camp Podcast for patient stories and interviews with doctors, researchers, advocates, and other voices working to improve Lyme disease awareness, understanding, and care.

LIVE from ILADS: Can treating Lyme disease be both a science and an art?

Tick Boot Camp sits down with Dr. Frank Song Jr., ND, a naturopathic doctor specializing in Lyme disease, tick-borne infections, and complex chronic illness at Placeres Integrative Medicine in New Milford, Connecticut.

But medicine is only one part of Dr. Song’s story.

He is also a professional musician and performer whose music brings together influences from his Chinese heritage, Appalachian and Americana folk traditions, R\&B, soul, and his more recent experiences working with Brazilian musicians.

For Dr. Song, those worlds aren't separate.

Medicine is an art. Music can be medicine. And healing requires understanding the individual human being in front of you.

In this wide-ranging conversation, Dr. Song shares how his upbringing in a Chinese immigrant family influenced his path into naturopathic medicine, what he learned during his Lyme disease residency under Dr. Alexis Chesney, why treating chronically ill patients caused him to reconsider how he was living his own life, and why he believes conventional and naturopathic medicine should work together rather than compete.

The conversation also takes on difficult questions about trauma, nervous-system regulation, spirituality, access to care, financial resources, hope, and the danger of reducing complex Lyme disease recovery to simplistic advice that every patient must “change.”

Dr. Song’s message is more nuanced:

Meet people where they are. Understand what is actually contributing to their illness. Give them realistic hope. And never forget that precision medicine means treating the person—not a generalized version of the disease.

This interview was recorded live at the ILADS conference, so you may hear some of the energy and background activity of the event throughout the conversation.

From Chinese Folk Traditions to Naturopathic Medicine

Dr. Song was born in New Haven to a family that immigrated from Hunan in south-central China.

He spent part of his early childhood in China and was raised by grandparents who were farmers.

Food, herbs, seasonal changes, folk traditions, and what he describes as Eastern medicine were naturally woven into everyday life.

Looking back, Dr. Song believes those early experiences helped establish the foundation for his eventual path into naturopathic medicine.

After returning to the United States, he grew up primarily in Virginia and studied biology and anthropology on the pre-med track at the University of Virginia.

He later attended the University of Bridgeport for naturopathic medicine.

Training Under Dr. Alexis Chesney

One of the most important influences on Dr. Song’s Lyme disease education was Dr. Alexis Chesney, ND, LAc.

Dr. Song completed his residency at Sojourns Community Health Clinic in Westminster, Vermont, where he trained under Dr. Chesney.

The clinic combined primary care with naturopathic medicine, pediatrics, chiropractic care, physical therapy, acupuncture, and a specialized tick-borne disease program.

That exposed Dr. Song to both ends of the tick-borne disease spectrum:

• Acute tick bites
• Early infections
• Lyme disease
• Tick-borne co-infections
• Chronic complex presentations
• Patients requiring individualized combinations of conventional and integrative care

His current professional bio confirms that his residency specifically focused on diagnosing and treating Lyme disease, tick-borne diseases, and complex chronic illness and included pharmaceutical, herbal, and holistic approaches.

Dr. Chesney has also joined Tick Boot Camp for her own LIVE from ILADS conversation exploring Lyme disease, Babesiosis, and whole-person treatment.

What Treating Chronic Illness Taught a Young Doctor About Life

Dr. Song began his residency during COVID.

At the same time that the world was confronting illness and mortality on an enormous scale, he was working directly with chronically ill patients who were temporarily—or sometimes profoundly—losing important pieces of their lives.

Some couldn't work.

Some struggled to parent.

Some lost mobility.

Many were confronting fear, uncertainty, illness, and questions about mortality.

Listening to those patients caused Dr. Song to ask difficult questions about his own life.

What am I doing with my time?

What would I regret not pursuing?

One answer kept coming back:

Music.

His patients' experiences helped remind him that life isn't only about professional achievement. People facing serious illness often think about relationships, experiences, passions, travel, creativity, and the things they wish they had made more time to pursue.

So Dr. Song decided to listen to the lesson his patients were teaching him.

Becoming Both a Doctor and an Artist

After residency and additional practice at Sojourns, Dr. Song moved to Brooklyn and shifted toward part-time clinical medicine.

He joined Placeres Integrative Medicine, where he continues to work with Lyme disease, tick-borne illness, and complex chronic illness patients.

At the same time, he dove more deeply into music.

He began performing, working with a producer in Brooklyn, touring internationally, and recording.

His musical identity draws from several different worlds.

His grandparents were East Asian folk singers, exposing him to regional Chinese folk and operatic traditions.

Growing up near Virginia's Blue Ridge Mountains exposed him to Americana, Celtic music, and bluegrass.

He also developed a love for R\&B and soul.

More recently, working and recording with Brazilian musicians added another cultural influence to his art.

He has also pursued samba dancing and describes himself in the interview as a semi-professional samba dancer.

Can Music Be Medicine?

Dr. Song believes being a musician has made him a better doctor.

Music has been a tool for expression, emotional processing, self-soothing, connection, and preserving family and cultural history.

As a physician, he can work intensely with one person.

He can investigate a case, recommend treatments, adjust a protocol, and help that individual navigate illness.

Music works differently.

It can reach an entire room—or potentially an entire community—at once.

Dr. Song sees art as a way to create connection and empathy and potentially contribute to larger shifts in how people think about themselves, each other, health, and the world around them.

His professional bio similarly describes his belief that music can be medicine and a channel for connection and healing.

Lyme Disease, Nature & Our Environment

Dr. Song also sees connections between his medicine, his art, and the natural world.

Much of his music is inspired by nature and humanity's relationship with it.

In the interview, he connects the changing landscape of Lyme and vector-borne diseases with larger environmental and climate issues.

For him, those aren't entirely separate conversations.

Human health exists within an ecosystem.

How we interact with the environment can influence how we interact with vectors, pathogens, food systems, stressors, and other determinants of health.

That ecological perspective fits naturally with the broader whole-person framework Dr. Song brings to medicine.

Why Naturopathic Medicine?

The conversation then explores what naturopathic training contributes to complex chronic illness care.

Dr. Song is careful not to portray naturopathic and conventional medicine as enemies.

He explicitly acknowledges the tremendous value of conventional medicine, particularly in acute care.

His concern is that highly reductionist or hyper-specialized systems can sometimes struggle when an illness spans multiple interconnected systems.

Complex Lyme disease can live in those gray areas.

A patient may be dealing with infection alongside neurological symptoms, immune dysfunction, environmental exposures, psychological stress, trauma, nutritional problems, and other factors.

Breaking everything into individual pieces can provide valuable information.

But eventually someone has to put those pieces back together.

Dr. Song believes the future requires a marriage between conventional and naturopathic medicine, using the strengths of both rather than insisting that one philosophy must replace the other.

Lyme Disease Is Not One Disease Experience

One of Dr. Song's strongest cautions in this interview is against broad generalizations.

Two people who both say they have “Lyme disease” may have very different clinical pictures.

One may be dealing with Lyme and Bartonella.

Another may have Babesia or another tick-borne infection.

Another may have mold exposure layered into the picture.

There may be differences in immune function, environment, stress, trauma, socioeconomic circumstances, access to care, and many other variables.

That makes generalized instructions dangerous.

Dr. Song repeatedly comes back to the importance of individualized, precision medicine.

Healing Is More Than Killing an Infection

Rich and Dr. Song explore a recurring Tick Boot Camp theme:

For many people, recovery from complex chronic illness eventually becomes about more than targeting pathogens.

Physical health matters.

But so can emotional health, nervous-system regulation, environment, relationships, stress, trauma, beliefs, purpose, and lifestyle.

Dr. Song has additional training in mind-body medicine and holistic counseling.

He describes studying with Dr. Moshe Block and becoming a Vis Dialogue practitioner, a counseling approach within a naturopathic framework.

That background has influenced the way he thinks about connections between emotional experiences and physical health.

But this is where the conversation becomes especially nuanced.

A Critical Warning About Blaming Patients

Dr. Song strongly cautions against turning mind-body medicine into another way of blaming chronically ill people.

Telling someone:

“You just need to change.”

“You need to regulate your nervous system.”

or

“Your trauma is why you're still sick.”

can itself become harmful.

Dr. Song emphasizes that Lyme and tick-borne disease cases can be extraordinarily complex.

The infection is real.

The patient's physical illness is real.

And people have vastly different resources and circumstances.

Rather than imposing one healing philosophy onto everyone, he advocates identifying what may actually be modifiable for that particular person.

Is there an environmental component?

Is work creating unsustainable stress?

Is trauma relevant?

Is there an infection or co-infection requiring treatment?

Is nervous-system support appropriate?

What can realistically be changed right now?

That is very different from blaming someone for being sick.

Access to Lyme Care Matters

Dr. Song also raises a difficult reality in the Lyme community:

Specialized care can be expensive.

Patients are sometimes told they need highly personalized treatment, extensive testing, supplements, specialty doctors, lifestyle changes, nervous-system programs, or other interventions.

But not everyone can afford those resources.

Dr. Song argues that a genuinely humanistic approach has to acknowledge those limitations.

A clinician shouldn't prescribe an idealized version of healing that exists outside the patient's financial, educational, social, or practical reality.

Instead:

Meet the person where they are.

Then determine what meaningful changes are actually accessible to them.

His current practice is notable in this context because Placeres Integrative Medicine describes itself as an insurance-based integrative practice working to make naturopathic and root-cause care more accessible.

Does Healing Require Money?

This leads to a thoughtful exchange between Rich and Dr. Song.

Rich shares what Tick Boot Camp has observed after hundreds of patient interviews: financial resources can provide access to additional tools, but money alone does not explain who ultimately improves.

Tick Boot Camp has repeatedly heard stories in which purpose, belief, emotional change, persistence, lifestyle, and a person's evolving relationship with illness become important pieces of recovery.

Dr. Song doesn't reject that.

Instead, he adds another layer.

Money and access do matter, particularly up to the point where someone can obtain basic resources and appropriate care.

Beyond that, more money doesn't necessarily mean more healing.

Both ideas can be true.

Resources matter.

And healing cannot be reduced to resources alone.

Avoiding Toxic Positivity

Dr. Song makes another important distinction:

Hope should be realistic.

He cautions against telling every chronically ill person that if they simply think differently, change enough, or believe hard enough, complete recovery is guaranteed.

Some illnesses can leave lasting damage.

Some patients may experience irreversible sequelae.

And clinicians have a responsibility to distinguish between realistic hope and false hope.

That doesn't mean abandoning hope.

It means respecting the patient's reality.

Dr. Song warns against what he calls a “toxically positive” approach that unintentionally places responsibility for persistent illness back onto the patient.

For Tick Boot Camp, the takeaway is important:

Belief that healing is possible should empower people—not shame them when recovery is difficult.

Precision Medicine, Not Generalization

Near the end of the conversation, Dr. Song summarizes his clinical philosophy in a few words:

Precision medicine.

Complex chronic illness doesn't lend itself to broad assumptions.

Patients don't all overlap neatly.

Their histories differ.

Their exposures differ.

Their infections differ.

Their resources differ.

Their physiology differs.

Their goals differ.

That means clinicians have to investigate, analyze, listen, and continuously adapt.

And that is where Dr. Song believes medicine becomes an art.

The Art of Lyme Healing

The episode closes where Dr. Song's two worlds—medicine and art—come together.

If every Lyme patient could be treated with one generalized protocol, medicine would be more like painting with a single brushstroke.

But that's not reality.

The artistry comes from:

Piecing together the clues.

Analyzing the individual case.

Choosing appropriate tools.

Understanding the human being.

Building trust.

Medicine requires science.

But applying that science to a unique person requires judgment, curiosity, empathy, and connection.

That is the art.

And for Dr. Song, it's the same humanistic thread running through both the clinic and the stage.

About Dr. Frank Song Jr., ND

Dr. Frank Song Jr., ND is a licensed naturopathic doctor specializing in Lyme disease, tick-borne diseases, and complex chronic illness at Placeres Integrative Medicine.

Dr. Song completed specialized residency training under Lyme and tick-borne disease specialist Dr. Alexis Chesney at Sojourns Community Health Clinic in Vermont. His clinical interests include pharmaceutical, botanical, nutritional, and holistic approaches to tick-borne illness as well as mind-body medicine and the mental, emotional, and spiritual dimensions of health.

He is also a professional musician who has performed internationally and views music as another avenue for connection, expression, and healing.

Key Topics in This Episode

Lyme disease, Dr. Frank Song, naturopathic Lyme doctor, Lyme disease treatment, tick-borne disease, chronic Lyme disease, Lyme disease co-infections, Bartonella, naturopathic medicine, integrative medicine, precision medicine, personalized Lyme treatment, mind-body medicine, nervous-system regulation, limbic system, trauma and chronic illness, holistic medicine, Lyme disease recovery, Lyme disease and mental health, Lyme disease and spirituality, access to Lyme care, cost of Lyme treatment, toxic positivity, realistic hope, music and healing, Dr. Alexis Chesney, Placeres Integrative Medicine, ILADS, and whole-person Lyme treatment.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

ILADS introduced Tick Boot Camp to Dr. Song as one of the younger physicians working in the Lyme and tick-borne disease field, giving Rich the opportunity to explore not only his medical training but the unusual intersection of medicine, art, culture, and healing that shapes his work.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations—shorter, focused, and surrounded by the energy and activity of ILADS.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Explore conversations with Lyme disease doctors and healthcare professionals about individualized treatment, integrative medicine, complex chronic illness, and recovery.

For more conversations about nervous-system regulation and the role it can play as one component of recovery, listen to Cathleen King on Primal Trust.

Explore the Tick Boot Camp Podcast for patient stories and interviews with doctors, researchers, advocates, and other voices working to improve understanding of Lyme disease and tick-borne illness.

LIVE from ILADS: What happens when a board-certified medical doctor develops debilitating symptoms — but doesn't recognize that she may have Lyme disease?

Tick Boot Camp sits down with Dr. Robin Ann Ridinger, MD, a physician board-certified in both Family Medicine and Integrative Holistic Medicine who treats Lyme disease and other complex chronic illnesses at Premier Health and Holistic Medicine in Leesburg, Virginia.

Before Dr. Ridinger became a Lyme-treating integrative physician, she became the patient.

While going through a difficult period in her life, she began experiencing cognitive problems severe enough that she feared she might be developing early Alzheimer's disease and would have to retire from medicine.

Then she attended a Lyme disease conference.

As she listened to the symptoms being described, she remembers repeatedly thinking:

"That's me."

That experience changed not only her health journey but the way she practices medicine.

In this conversation, Dr. Ridinger discusses why her conventional medical training didn't prepare her to recognize Lyme disease in herself, what she learned from becoming a patient, why complex chronic illness often doesn't fit into short medical appointments, and how lived experience helps her understand symptoms such as air hunger, profound fatigue, and brain fog.

The episode also explores integrative medicine, nutrition, mitochondrial health, individualized treatment, and one of the hardest skills in chronic illness care:

Knowing when a patient needs compassion and rest — and when they may need a gentle push beyond a plateau.

This interview was recorded live at the ILADS conference, so you may hear some of the energy and background activity of the event throughout the conversation.

A Doctor Who Didn't Recognize Her Own Lyme Disease

Dr. Ridinger was already a trained and experienced physician when her own health began deteriorating.

She describes experiencing cognitive problems so concerning that she feared early Alzheimer's disease.

Yet Lyme disease wasn't on her radar.

That changed when her employer encouraged her to attend a Lyme conference.

Sitting in the audience and listening to the symptoms being discussed, Dr. Ridinger suddenly recognized herself in what she was hearing.

She subsequently found an ILADS-associated physician who evaluated her and, because of the limitations and cost of testing at the time, treated her based substantially on her clinical presentation.

Dr. Ridinger says she improved considerably after approximately nine months involving different antibiotic protocols.

Her physician then told her about opportunities to mentor with doctors experienced in treating Lyme disease.

She pursued that training and eventually began helping other patients facing the same kinds of problems she had experienced herself.

Why Didn't Medical School Prepare Her for Lyme Disease?

Rich asks an obvious question:

How could a medical doctor fail to recognize Lyme disease in herself?

Dr. Ridinger's answer is remarkably simple.

She says Lyme disease was barely part of her medical education.

During her Family Medicine residency in Columbus, Ohio, other emerging infectious diseases received considerable attention, but she recalls essentially no meaningful education about Lyme disease.

Without that framework, her collection of symptoms didn't naturally lead her toward a Lyme diagnosis.

Her experience illustrates a challenge frequently described by Tick Boot Camp guests:

You can't easily recognize a pattern you've never been taught to look for.

From Conventional Medicine to Integrative Medicine

Lyme disease wasn't Dr. Ridinger's only reason for moving toward integrative medicine.

Even before her own Lyme journey, questions surrounding her children's health had pushed her to look beyond conventional approaches.

She describes struggling to reconcile symptoms and laboratory results and becoming frustrated when the medical system didn't provide satisfactory answers.

That led her toward deeper study of nutrition, hormones, physiology, and eventually integrative medicine.

Today, Premier Health and Holistic Medicine describes her approach as personalized care that considers the whole person rather than isolated symptoms. Her practice includes Lyme disease and co-infections, mold toxicity, chronic fatigue, fibromyalgia, hormone and thyroid disorders, digestive problems, autoimmune conditions, and cognitive and mood symptoms.

Why Complex Chronic Illness Doesn't Fit Into a 15-Minute Visit

One of the most interesting parts of the interview isn't specifically about Lyme disease.

It's about the structure of modern medicine.

Dr. Ridinger describes always wanting more time with patients.

She didn't want to cut people off.

She wanted to listen, investigate, research, and understand how seemingly disconnected problems might fit together.

At one point, she viewed that as a weakness.

She thought she was simply too slow.

Eventually, she realized the opposite may have been true.

For complex chronic illness, taking time can be a strength.

Acute Care vs. Chronic Care

The conversation makes an important distinction between acute medicine and complex chronic illness care.

Conventional medicine can be extraordinary when someone needs emergency care, surgery, stabilization, or treatment for a clearly defined acute problem.

But someone with years of multisystem symptoms presents a very different challenge.

Dr. Ridinger describes how medical specialization and insurance-driven time constraints can fragment care.

The cardiologist sees the heart.

The neurologist sees the nervous system.

The gastroenterologist sees the digestive tract.

The psychiatrist sees mood and behavior.

But who has enough time to ask how everything might connect?

Dr. Ridinger argues that complex patients require a more integrated view.

The Problem With Medical Silos

Dr. Ridinger remembers an earlier period of medicine when primary-care doctors and specialists communicated more collaboratively about complicated cases.

She believes increasing time pressure and changes in the insurance-driven medical model have contributed to greater specialization and fragmentation.

That becomes particularly problematic when the illness doesn't remain inside one organ system.

Lyme disease and other complex chronic illnesses may involve neurological, cardiovascular, gastrointestinal, immune, musculoskeletal, endocrine, and psychiatric symptoms.

Treating each symptom as an unrelated problem can make it harder to see the larger pattern.

For Dr. Ridinger, integrative medicine is partly about putting those pieces back together.

What Changes When the Doctor Has Been the Patient?

Dr. Ridinger's own Lyme disease experience gives her another kind of medical education:

lived experience.

She knows what certain difficult-to-describe symptoms actually feel like.

That doesn't mean a doctor must personally have Lyme disease to become an excellent Lyme clinician.

But Dr. Ridinger believes her own illness helps her recognize nuances that might otherwise be difficult to understand from a textbook.

One example is air hunger.

Understanding Air Hunger

Air hunger is a symptom frequently discussed by people with Babesia and other complex illnesses.

A patient may not walk into a doctor's office saying:

"I have air hunger."

Instead, they may say their breathing feels shallow or that suddenly they're unusually winded doing something that was easy days earlier.

Because Dr. Ridinger experienced air hunger herself, she can sometimes recognize what a patient is trying to describe even when the patient doesn't have the vocabulary for it.

She describes the strange experience of taking the same walk and being able to breathe normally one day, then becoming disproportionately winded another day despite no meaningful change in fitness.

That lived experience helps her ask more precise follow-up questions.

Lyme Fatigue Isn't Ordinary Tiredness

The same distinction applies to fatigue.

Someone without chronic illness may hear the word fatigue and think:

"I'm tired too."

Dr. Ridinger describes something very different.

During severe illness, fatigue can reach the point where it feels physically difficult to make the body move.

She contrasts that with the normal tiredness she may still experience today.

The words may be the same.

The experience isn't.

That distinction can matter when a patient is trying to explain an invisible symptom to someone who has never experienced it.

When Brain Fog Becomes Disorientation

Dr. Ridinger also shares a frightening example of neurological dysfunction.

She remembers being at a stop sign near a church she had attended for approximately 20 years and suddenly becoming disoriented:

Where am I?

Her children were with her.

The experience frightened them.

This was more than occasionally forgetting a word or walking into a room and forgetting why.

It was significant cognitive dysfunction in a familiar environment.

Experiences like these helped shape the physician she eventually became.

Peel Back the Onion

Dr. Ridinger describes complex Lyme disease care using a familiar metaphor:

Peeling an onion.

Not every problem can be addressed simultaneously.

Treatment becomes a process of identifying layers, supporting the body, reassessing, and deciding what should come next.

One practical tool she uses is asking patients:

What are the top three symptoms you most want to improve?

That question gives patients a voice in establishing priorities.

It also helps turn an overwhelming list of symptoms into something more manageable.

Progress can then be evaluated according to what matters most to that particular person.

Nutrition Is Part of the Treatment

Dr. Ridinger also places significant emphasis on nutrition.

She says patients in her practice receive education about healthy eating, liver function, detoxification pathways, and ways of reducing toxic exposures.

Her current practice similarly identifies healthy eating, detoxification, comprehensive testing, herbal treatments, and personalized treatment plans as parts of its integrative approach.

Dr. Ridinger's philosophy is that these foundations aren't separate from treatment.

They are part of creating an environment in which the body has a better opportunity to recover.

Adrenals, Mitochondria & Energy

The conversation also explores adrenal and mitochondrial dysfunction.

Dr. Ridinger notes that symptoms can overlap considerably, making it difficult to assign every experience to one system.

Mitochondria are particularly important because cells depend on them for energy production.

The brain is extraordinarily energy-demanding.

That provides part of the physiological context for why energy dysfunction is frequently discussed alongside fatigue and cognitive symptoms in complex chronic illness.

Rather than assuming one pathway explains every symptom, Dr. Ridinger's approach is to look at the patient's broader physiological picture.

Knowing When to Push — and When Not To

One of the most human parts of this conversation involves something no laboratory test can easily determine:

When should you push a chronically ill patient?

Recovery can require patience.

Someone who is extremely sick may genuinely need rest, stabilization, compassion, and small deliberate steps.

Pushing too hard can be counterproductive.

But patients can also reach plateaus.

Fear can develop after years of symptoms and setbacks.

Someone who has repeatedly experienced negative consequences from exertion or treatment may understandably become afraid of trying something new.

The clinician's challenge is determining when the patient needs permission to rest — and when the patient may be ready for the next carefully measured step.

Rich describes this as a kind of wisdom that can't simply be learned from a textbook.

For clinicians who have personally lived through chronic illness, that instinct may be informed by their own experience of being on both sides of the exam room.

New Tools for Patients Who Remain Stuck

Dr. Ridinger is also continuing to explore emerging tools for patients who reach difficult plateaus.

She discusses growing interest in areas including:

• Photobiomodulation
• Vagus nerve regulation
• Polyvagal approaches
• Quantitative EEG, or qEEG
• SPECT imaging
• Mitochondrial health
• Nervous-system regulation

She is particularly interested in whether some of these tools can provide additional information or options for patients who have already "done the circuit" of experienced practitioners without fully recovering.

Her willingness to continue learning reinforces one of the major themes of this interview:

We don't know what we don't know.

Healing Requires Curiosity

Dr. Ridinger's story ultimately isn't only about Lyme disease.

It's about what happens when a doctor becomes a patient and discovers the limitations of the medical framework she was originally taught.

Her response wasn't to abandon medicine.

It was to expand her toolbox.

She studied integrative medicine.

She pursued Lyme disease mentorship.

She learned from her own illness.

She continued researching.

And she created a practice where complex patients can have more time to tell their stories.

That curiosity is especially valuable for people who have spent years hearing:

"Your tests look normal."

"I don't know what's wrong."

Or:

"There's nothing else we can do."

For patients with complex chronic illness, sometimes the next step begins with a clinician willing to keep asking questions.

About Dr. Robin Ridinger

Dr. Robin Ann Ridinger, MD is a board-certified Family Medicine and Integrative Holistic Medicine physician and founder of Premier Health and Holistic Medicine in Leesburg, Virginia.

She earned her medical degree from the University of Iowa and completed her Family Medicine residency at Grant Medical Center in Columbus, Ohio. Her practice focuses on personalized integrative care for complex conditions including Lyme disease and co-infections, mold toxicity, chronic fatigue, fibromyalgia, autoimmune disease, digestive disorders, hormonal and thyroid dysfunction, and cognitive and mood symptoms.

Dr. Ridinger is affiliated with the International Lyme and Associated Diseases Society (ILADS), and her practice describes her approach to Lyme disease as integrating conventional and holistic strategies around the needs of the individual patient.

Key Topics in This Episode

Lyme disease, Dr. Robin Ridinger, Lyme disease doctor, integrative Lyme treatment, Lyme disease misdiagnosis, chronic Lyme disease, Lyme disease brain fog, Lyme fatigue, Babesia, air hunger, Lyme disease and mitochondria, integrative medicine, functional medicine, holistic medicine, complex chronic illness, chronic fatigue, mitochondrial dysfunction, adrenal dysfunction, nutrition, detoxification, Lyme disease recovery, photobiomodulation, vagus nerve, polyvagal theory, qEEG, SPECT scan, patient-centered medicine, medical education, ILADS, and Lyme disease treatment.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations — shorter, focused, and surrounded by the energy and activity of ILADS.

Rich and Dr. Ridinger also discuss bringing her back for a future long-form Tick Boot Camp interview so the many subjects introduced here can be explored in greater depth.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Hear more conversations with Lyme disease doctors and healthcare professionals about diagnosis, treatment, integrative medicine, and recovery.

Explore the science and discussion surrounding Lyme disease persistence.

Visit the Tick Boot Camp Podcast for patient stories and interviews with doctors, researchers, advocates, and other members of the Lyme disease and tick-borne illness community.

LIVE from ILADS: Tick Boot Camp welcomes back Dr. Cory Tichauer, ND, owner and lead physician of Bear Creek Naturopathic Clinic in Medford, Oregon, and a member of the ILADS Board of Directors.

After years of treating Lyme disease and other complex chronic illnesses, Dr. Tichauer has become increasingly interested in a particularly difficult group of patients:

The people who do many of the "right" things but still don't fully recover.

Dr. Tichauer describes them as his "20%."

While he says the majority of his chronic Lyme patients can achieve substantial improvement through individualized combinations of conventional and integrative treatments, another group remains stuck despite working with knowledgeable practitioners and trying numerous therapies.

Why?

Dr. Tichauer believes some answers may lie at the intersection of persistent infection, immune dysfunction, chronic inflammation, mitochondrial dysfunction, and the cell danger response.

The conversation also explores his research into a 12-week high-dose IV vitamin C protocol for Lyme disease, including the improvements he reports in quality-of-life measurements, Horowitz MSIDS scores, CD57 levels, and other immune markers.

This interview was recorded live at the ILADS conference, so you may hear some of the energy and background activity of the event throughout the conversation.

Who Are the "20%" of Lyme Patients Who Remain Sick?

After more than 15 years focused on chronic Lyme disease, Dr. Tichauer says his attention has increasingly shifted toward patients who don't respond as expected.

He describes a broad spectrum.

Some patients respond well to relatively straightforward treatment.

Others require additional therapies and considerably more detective work.

But then there is a group that may improve somewhat yet never regain the level of function they hoped for.

Those are the patients Dr. Tichauer can't stop thinking about.

Some have already seen five, six, ten, or even twelve doctors — including experienced Lyme-literate clinicians — before reaching his practice.

Rather than assuming everyone before him got it wrong, he asks:

What are we missing?

Lyme Treatment Is Rarely One Thing

For the patients who do respond well, Dr. Tichauer describes drawing from a large therapeutic toolbox.

Depending on the individual, his approach may include:

• Oral antibiotics
• IV antibiotics
• Off-label medications
• Herbal medicine
• Biofilm strategies
• Immune support
• Peptides
• Mitochondrial support
• Nervous-system approaches
• Other integrative therapies

The challenge is that there are countless possible combinations.

That makes complex Lyme disease less like following one treatment recipe and more like finding the appropriate combination for the individual patient.

Dr. Tichauer says that approach has allowed him to help many patients substantially improve.

But it doesn't explain everyone.

When Doing More Isn't the Answer

One of the strongest messages in this episode is especially important for people who have spent years cycling through increasingly aggressive treatments:

More isn't automatically better.

If a patient has already worked with knowledgeable doctors and repeatedly tried reasonable approaches without recovering, Dr. Tichauer says it would be arrogant to assume that simply doing the same thing harder will produce a different result.

That realization has pushed him toward studying the underlying biology of his most difficult cases.

Among the patterns capturing his attention are:

• Immune dysfunction
• Mitochondrial dysfunction
• MCAS
• Hypermobility
• Chronic inflammation
• Cellular dysfunction
• Persistent infection
• Cell danger response

Instead of simply asking what else can kill a pathogen, he is increasingly asking what prevents the patient's system from returning to normal function.

Persistent Infection vs. Persistent Immune Dysfunction

Dr. Tichauer pushes back against treating persistent infection and post-infectious dysfunction as necessarily competing explanations.

They may coexist.

He discusses the possibility that some organisms may persist at levels below a threshold that produces direct tissue damage while the immune system remains activated.

In other words, eliminating every last organism may not always be the only meaningful goal.

The clinical objective may sometimes be achieving remission — reducing microbial activity while helping the immune system regain appropriate tolerance and regulation.

Tick Boot Camp has explored the science and debate surrounding persistence in many conversations. Learn more on our Lyme disease persistence resource page.

"Getting the Genie Back in the Bottle"

The interview develops a useful metaphor.

Rather than assuming the body must become completely sterile of every potentially problematic microorganism, Dr. Tichauer discusses restoring a healthy relationship between microbes and the immune system.

Our bodies already coexist with enormous numbers of microorganisms.

The immune system must constantly determine what requires attack, what can be tolerated, and where organisms can exist without creating disease.

Dr. Tichauer describes the goal as getting the genie back in the bottle.

The pathogen burden matters.

But so does the immune response to it.

Immune Tolerance & Chronic Inflammation

Dr. Tichauer is particularly interested in immune tolerance.

A healthy immune system needs enough activity to protect us from infection without remaining chronically activated when that response is no longer helpful.

He discusses several interventions he uses or studies in the context of immune regulation, including:

• Low-dose naltrexone
• Vitamin D
• Herbal medicine
• Peptides

Dr. Tichauer has lectured extensively on low-dose naltrexone and Lyme disease, including its potential role in modulating inflammatory pathways in chronic and post-treatment illness.

The broader goal isn't simply stimulating or suppressing the immune system.

It is helping restore appropriate immune regulation.

Vitamin D Is More Complicated Than a Number on a Lab Report

The discussion of immune function leads into vitamin D.

Most patients are familiar with having 25-hydroxy vitamin D measured during routine bloodwork.

Dr. Tichauer explains that vitamin D metabolism is more complicated than that single measurement.

He discusses active and inactive forms of vitamin D and his interest in how infections may potentially interfere with vitamin D metabolism.

He has become particularly interested in calcitriol, the active hormonal form of vitamin D, and discusses its potential influence on macrophages, immune polarization, and inflammatory signaling.

These are advanced clinical concepts, and prescription calcitriol requires appropriate medical supervision because altering active vitamin D metabolism can carry significant risks.

The Cell Danger Response

Another concept connecting Dr. Tichauer's difficult cases is the cell danger response.

In simplified terms, cells exposed to infection, toxins, oxidative stress, or other threats can shift their metabolism toward defense and survival.

That response is useful when danger is acute.

The problem may arise when the system fails to return to normal.

Dr. Tichauer describes patients whose cells appear to remain metabolically impaired, with reduced energy production and mitochondrial dysfunction.

For someone experiencing profound fatigue, cognitive dysfunction, exercise intolerance, and other persistent symptoms, this creates another possible piece of the puzzle beyond simply measuring whether an infection is present.

Mitochondria & the Patients Who Stay Sick

Mitochondria produce the energy required for cells to function.

Dr. Tichauer sees mitochondrial dysfunction as one potential common denominator among some of his hardest-to-treat patients.

This connects directly with the cellular-health conversations Tick Boot Camp had at ILADS with Dr. Melanie Stein and Dr. Vy Simeles.

The question becomes:

Even if microbial burden is reduced, can a patient fully recover if cellular energy production and immune regulation remain severely impaired?

For Dr. Tichauer, helping restore mitochondrial and cellular function may be an important part of moving some patients from illness toward remission.

Rethinking Antibiotic Treatment

Dr. Tichauer still uses antibiotics.

But his thinking about how to use them has evolved.

Rather than relying exclusively on prolonged courses, he discusses circumstances in which he may use IV antibiotics more intensively for a shorter period, followed by pulsing, herbal therapies, mitochondrial repair, or other individualized strategies.

He also mentions daptomycin in the context of approaches intended to address persister forms.

His objective is not simply more antimicrobial treatment.

It is finding a strategy that appropriately addresses infection while limiting unnecessary collateral effects and supporting the patient's overall physiology.

High-Dose IV Vitamin C & Lyme Disease Research

One of the most significant parts of this interview involves Dr. Tichauer's research into high-dose intravenous vitamin C in Lyme disease.

At ILADS, he discusses a research project examining a protocol involving high-dose IV vitamin C.

The study initially needed to establish safety and tolerability, but Dr. Tichauer says the research team was also able to collect exploratory clinical and laboratory measurements.

The protocol involved:

12 weeks of treatment, 24 infusions, and 75 grams of IV vitamin C per treatment.

The protocol also incorporated DMSO and calcium EDTA.

Dr. Tichauer explains the rationale for these additions in terms of tissue penetration and biofilm-related strategies.

Why Add DMSO & EDTA?

Dr. Tichauer discusses DMSO as a compound used in the protocol with the intention of increasing membrane permeability and potentially helping vitamin C reach tissues where Borrelia may be difficult to target.

He also describes adding calcium EDTA based partly on earlier laboratory research examining potential approaches to Borrelia biofilms.

The resulting protocol attempted to address several potential barriers simultaneously:

• Microbial burden
• Intracellular infection
• Tissue penetration
• Biofilms
• Oxidative mechanisms
• Cellular dysfunction

Importantly, the findings discussed in this episode should be viewed as early research, not evidence that this protocol is an established treatment or appropriate for every Lyme disease patient.

What Did the Study Find?

Dr. Tichauer describes the results as exciting.

First, he says the study demonstrated the required safety and tolerability endpoint, with reported adverse events generally limited to issues such as headache and nausea.

He then describes improvements in several exploratory outcomes.

According to Dr. Tichauer, over the 12-week study researchers observed approximately 20–30% improvements across measures involving:

• Sleep
• Pain
• Fatigue
• Pain interference
• Anxiety
• Depression

He reports that fatigue continued improving during the 12 weeks after treatment ended.

Dr. Tichauer also says participants' Horowitz MSIDS questionnaire scores dropped by approximately 25 points during treatment and another 11 points during the post-treatment period.

These findings are intriguing, but they should be interpreted within the design and limitations of the study rather than assumed to establish efficacy for high-dose IV vitamin C in Lyme disease.

CD57 & Immune Markers

Dr. Tichauer also reports changes in laboratory markers.

He says CD57 lymphocyte measurements increased approximately 50% during the 12-week treatment period, followed by an additional increase during the post-treatment period.

He also discusses changes in interferon-gamma-related testing.

Perhaps most interesting to him was what happened after treatment stopped.

Participants weren't continuing the study intervention during the follow-up period, yet some measures continued moving in a favorable direction.

Dr. Tichauer says some participants remained in remission at the time of this interview.

Again, these are results as described by Dr. Tichauer during the interview and should not be interpreted as proof that the protocol will produce the same outcome for other patients.

Could This Help Explain the "20%"?

The episode then comes full circle.

Why might this research matter for the difficult patients discussed at the beginning?

Dr. Tichauer believes the answer could involve simultaneously addressing infection and cellular dysfunction.

In his model, intracellular organisms may interfere with normal cellular function while also helping perpetuate a danger response.

If treatment can reduce that intracellular burden while other interventions support mitochondrial repair, autophagy, mitophagy, and immune regulation, perhaps some patients can move out of the chronic defensive state that has kept them sick.

That hypothesis is helping shape where he wants to take his research and clinical work next.

Senolytics, Autophagy & Emerging Therapies

Dr. Tichauer briefly introduces several additional areas he is investigating, including:

• Senolytic therapies
• Autophagy
• Mitophagy
• Rapamycin
• KPV
• MSH
• Fisetin
• Urolithin A
• Spermidine

Each could easily become its own interview.

In fact, Dr. Tichauer says he has accumulated considerable clinical data involving rapamycin, setting up an obvious topic for a future Tick Boot Camp long-form conversation.

Individualized Medicine Remains Essential

Despite discussing new therapies and promising research, Dr. Tichauer repeatedly returns to individualization.

There isn't one Lyme protocol.

There isn't one explanation for every persistent symptom.

And there isn't one treatment that will move every person into remission.

That is especially true for the difficult cases that now fascinate him most.

The goal is to identify patterns without losing sight of the individual person.

Serving on the ILADS Board

The conversation closes on Dr. Tichauer's service with the International Lyme and Associated Diseases Society.

He describes attending his first ILADS conference years ago as a naturopathic doctor entering a medical community that wasn't always as integrated as it is today.

Now he serves on the organization's Board of Directors.

ILADS currently identifies Dr. Tichauer as an integrative clinician with more than 20 years of practice focused on tick-borne diseases, neurodegenerative conditions, environmental medicine, and autoimmune illness.

For him, serving on the board represents an opportunity to give back, mentor newer clinicians, and help bridge conventional and integrative approaches to complex illness.

His message is collaboration:

The whole is greater than the sum of its parts.

About Dr. Cory Tichauer

Cory Tichauer, ND is the owner and lead physician at Bear Creek Naturopathic Clinic in Medford, Oregon.

His clinical work focuses on chronic complex illness at the intersection of Lyme disease and tick-borne infections, environmental illness, immune dysfunction, neurodegenerative conditions, MCAS, hypermobility/Ehlers-Danlos syndrome, and functional gastroenterology.

Dr. Tichauer has been involved with ILADS for more than a decade and currently serves on its Board of Directors.

He lectures on tick-borne illness, immune dysfunction, low-dose naltrexone, peptide therapies, environmental medicine, and other aspects of complex chronic disease.

Key Topics in This Episode

Chronic Lyme disease, persistent Lyme disease, Dr. Cory Tichauer, Lyme disease treatment, treatment-resistant Lyme disease, Lyme disease research, high-dose IV vitamin C, intravenous vitamin C, IV vitamin C Lyme disease, CD57, Horowitz MSIDS questionnaire, immune dysfunction, mitochondrial dysfunction, cell danger response, persistent infection, PTLDS, immune tolerance, chronic inflammation, low-dose naltrexone, LDN, vitamin D, calcitriol, Lyme disease biofilms, EDTA, DMSO, daptomycin, persister cells, peptides, senolytics, autophagy, mitophagy, rapamycin, KPV, urolithin A, spermidine, remission, ILADS, and integrative Lyme disease treatment.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations — shorter, focused, and surrounded by the energy and background activity of ILADS.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Learn more about the science and debate surrounding Lyme disease persistence.

Hear more conversations with Lyme disease doctors and healthcare professionals about testing, treatment, persistent illness, and recovery.

Explore the Tick Boot Camp Podcast for patient stories and conversations with doctors, researchers, advocates, and other voices working to improve understanding of Lyme disease and tick-borne illness.

LIVE from ILADS: Tick Boot Camp sits down with Dr. Vy Simeles, ND, LAc of Restorative Health Clinic to explore one of the most difficult situations in chronic Lyme disease care:

What do you do when a patient becomes so sensitive that nearly everything intended to help seems to make them feel worse?

Dr. Simeles works with complex chronic illness patients, including people experiencing Lyme disease, mold illness, MCAS, nervous-system dysregulation, mitochondrial dysfunction, and significant environmental or treatment sensitivities.

In this short-form conference interview, she explains why her practice has been increasingly focused on cell membrane therapy and lipid replacement therapy as a foundational strategy for highly sensitive patients. The conversation explores phospholipids, omega-3s, plasmalogens, mitochondria, ATP production, the cell danger response, neuroinflammation, diet, SOT, and the relationship between cellular health and a patient's ability to tolerate treatment.

This interview was recorded live at the ILADS conference, so you may hear some of the energy and background activity of the event throughout the conversation.

When Lyme Patients React to Everything

Dr. Simeles describes a particularly challenging group of patients arriving at her practice.

They are very sick, highly sensitive, and may react negatively to interventions that would ordinarily be considered relatively gentle.

She describes patients experiencing symptoms including:

• Severe brain fog
• Numbness and tingling
• Short-term memory problems
• Anxiety
• Depression
• Irritability
• Aggression
• Neuropsychiatric symptoms
• Extreme sensitivity to supplements
• Difficulty tolerating treatment

Some even report feeling worse after taking supplements typically used for calming support, including L-theanine or holy basil.

When that happens, Dr. Simeles asks a different question:

Why is the body interpreting so many inputs as threats?

Cell Danger Response, MCAS & Nervous-System Dysregulation

There may not be one answer.

Dr. Simeles emphasizes that these are complex chronic illness patients, so multiple factors may be interacting.

She discusses possible contributors including:

• Mold and other toxic exposures
• Oxidative stress
• Mast cell activation
• Nervous-system dysregulation
• Chronic infections
• Cellular dysfunction
• What is often described as the cell danger response

Within this framework, a chronically stressed body can become increasingly defensive and reactive.

Interventions that should ordinarily be tolerated may suddenly produce unexpected responses.

Even nervous-system programs such as DNRS, Gupta, or Primal Trust may initially feel overwhelming to someone who is severely ill, cognitively impaired, or highly reactive.

That doesn't necessarily mean those tools will never be useful.

It may mean the patient first needs a more tolerable entry point.

For more on this aspect of recovery, listen to Tick Boot Camp's conversation about Primal Trust with Cathleen King.

Looking at the Cell Membrane

Dr. Simeles and Dr. Melanie Stein traveled to Atlanta for additional training in lipid replacement therapy and cell membrane therapy, building on approaches they were already using at Restorative Health Clinic.

That training helped deepen their focus on a foundational question:

Can the patient's cells properly receive, process, and communicate information?

Cell membranes aren't simply walls surrounding cells.

They are dynamic structures involved in signaling, transport, immune function, energy production, and communication.

Dr. Simeles' clinical model asks whether damage or changes to these membranes could be contributing to some patients remaining stuck despite extensive antimicrobial and supportive treatment.

The Cell Membrane as the Foundation

The previous Tick Boot Camp conversation with Dr. Stein used a simple metaphor:

Imagine the cell is a castle and the membrane surrounding it is the moat.

The moat helps regulate what gets in and out while supporting the communication necessary to recognize and respond to threats.

Dr. Simeles expands on that concept.

If the cellular environment is dysfunctional, the problem may extend beyond the presence of an infection.

The immune system itself is made of cells.

Mitochondria contain membranes.

Proteins involved in energy production and cellular communication are embedded in or associated with membranes.

From Dr. Simeles' perspective, improving membrane health may therefore help create a better foundation for the body's other systems to function.

Why Treating the Infection May Not Be Enough

Dr. Simeles makes an important distinction:

Antimicrobial therapy and cellular repair are doing different jobs.

Her practice still uses antimicrobial therapies when clinically appropriate.

But she describes seeing patients whose testing improves after infection-directed treatment while symptoms such as fatigue and brain fog remain.

In her clinical experience, integrating cell membrane support earlier — rather than waiting until antimicrobial treatment is finished — may help some patients better tolerate treatment while simultaneously addressing aspects of their lingering symptoms.

The philosophy is not necessarily:

Antimicrobials or cellular repair.

It can be:

Antimicrobials plus rebuilding the patient's underlying physiology when appropriate.

Phospholipids & Cellular Communication

A central concept throughout this conversation is phospholipids.

Phospholipids are major structural components of cellular membranes.

Dr. Simeles explains that oxidative stress associated with chronic infections, toxins, inflammation, and other physiological stressors may affect membrane lipids.

Within her model, restoring appropriate lipids can help support membrane structure and the cellular processes that depend upon it.

This becomes particularly important when discussing the immune system and mitochondria because their functions also depend on healthy cellular structures.

DHA, Omega-3s & the Brain

Dr. Simeles discusses omega-3 fatty acids, particularly DHA, in the context of neurological and neuropsychiatric symptoms.

She distinguishes DHA from EPA, noting that both are common components of fish oil but have different physiological roles.

Because DHA is an important structural lipid in the brain and nervous system, Dr. Simeles describes using DHA-focused omega-3 strategies with some of her highly sensitive neurological patients.

She also discusses carefully titrating treatment for people who react easily, including beginning with very small amounts and increasing based on tolerance.

Importantly, she cautions that high-dose fish oil can affect blood clotting and may increase bleeding risk in some people.

This is one reason high-dose supplementation should be individualized and discussed with an appropriately qualified healthcare professional rather than copied directly from another patient's protocol.

Plasmalogens & Neurological Health

Another major topic is plasmalogens, specialized lipids found in cellular membranes and present in significant concentrations within nervous-system tissues.

Dr. Simeles discusses using a specialized omega-9 plasmalogen product with some patients experiencing difficult neurological or neuropsychiatric symptoms.

Her interest is rooted in the role membrane lipids play in neural structure and cellular communication.

The product discussed in the interview, ProdromeGlia, is marketed as an omega-9 plasmalogen precursor intended to support glial cell membranes, myelin structure, and normal cellular membrane composition.

Dr. Simeles describes this as one tool within a broader cell membrane strategy — not as a standalone Lyme disease treatment.

Mitochondria: The Powerhouse Still Matters

Most people remember one thing from biology class:

The mitochondria are the powerhouse of the cell.

Dr. Simeles explains what that actually means.

Mitochondria produce ATP, the energy currency cells need to perform their functions.

When mitochondrial function becomes impaired, the consequences can potentially be felt throughout high-energy systems of the body.

Dr. Simeles connects mitochondrial dysfunction with symptoms she frequently sees in complex chronic illness, including:

• Fatigue
• Brain fog
• Memory difficulties
• Muscle weakness
• Neurological symptoms
• Reduced stamina

The brain is particularly energy-demanding, which helps explain why mitochondrial health is often part of conversations about neurological and cognitive symptoms.

Why Membranes Matter to Mitochondria

The cellular-health discussion gets even more interesting when Dr. Simeles connects cell membranes with mitochondria.

Mitochondria have their own specialized membranes, and their structure is essential to the biochemical processes involved in producing ATP.

Within Dr. Simeles' framework, membrane dysfunction can therefore influence mitochondrial function.

This creates a possible chain:

Cellular stress → membrane dysfunction → impaired mitochondrial function → reduced energy production → symptoms such as fatigue and brain fog.

That simplified model helps patients understand why her practice is interested in repairing cellular structures rather than exclusively targeting microbes.

Are Low-Fat Diets a Problem?

The conversation then moves from supplements and therapies to something much more fundamental:

Food.

Dr. Simeles doesn't recommend a single rigid diet for every patient.

She does, however, push back against diets that unnecessarily eliminate healthy fats.

Some fatty acids are considered essential because the body cannot adequately produce them on its own.

Omega-3 fatty acids are one example.

She therefore emphasizes obtaining adequate healthy fats through food while recognizing that individual dietary needs and tolerances vary.

Foods discussed in the conversation include:

• Fish and omega-3 sources
• Eggs
• Egg yolks as a source of phosphatidylcholine
• Plant-based fat sources
• Red meat in moderation

The larger takeaway isn't that every Lyme patient should follow a ketogenic or high-fat diet.

It's that healthy fats play important biological roles and shouldn't automatically be treated as the enemy.

The Goal Is to Graduate Patients from Care

One revealing moment in the interview has little to do with biochemistry.

Dr. Simeles explains that she is always trying to graduate patients from care.

The objective isn't indefinite treatment.

It is helping someone rebuild enough health and resilience that they can return to living their life.

That philosophy fits naturally with Tick Boot Camp's emphasis on recovery:

The treatment is not the destination. Life is.

SOT for Lyme & Associated Infections

Dr. Simeles also discusses Supportive Oligonucleotide Therapy (SOT), another treatment being used at Restorative Health Clinic.

She is notably measured about the results.

Some patients, she says, have experienced dramatic improvements.

Others have experienced more modest results, remain uncertain, or haven't responded.

That variability mirrors what Tick Boot Camp has heard across patient interviews.

There are people who describe SOT as transformational and others who report spending substantial money without receiving the outcome they hoped for.

Dr. Simeles emphasizes that there is no single protocol that will work for every person.

For more Tick Boot Camp conversations involving SOT, explore Dr. Hank Sloan's interviews and resources.

Can Cellular Health Improve Treatment Tolerance?

An especially interesting question raised in this episode is whether improving cellular health might make other treatments easier to tolerate.

Dr. Simeles believes it can for some of her patients.

Rather than repeatedly adding more aggressive interventions to someone who is already highly reactive, the practice is increasingly interested in strengthening the patient's foundation first or simultaneously.

The objective is to help the patient become resilient enough to tolerate whatever appropriate treatment comes next.

This closely parallels Tick Boot Camp's concept of prehabilitation:

Prepare the person for the treatment rather than simply assuming the person is ready for it.

Healing Is Individual

The SOT discussion leads to one of the most important messages in the entire interview:

There is no universal Lyme treatment protocol.

Patients are biologically different.

Their infections differ.

Their immune systems differ.

Their toxic exposures differ.

Their nervous systems differ.

Their nutritional status, genetics, microbiomes, environments, histories, and tolerances differ.

A therapy that dramatically helps one person may do very little for another.

For people who have spent years comparing themselves with someone else's recovery story, that message can be validating.

Someone else's success or failure with a particular treatment does not automatically predict yours.

The Language We Use With Ourselves

Near the end of the conversation, Dr. Simeles introduces another area she wants to explore more deeply: Neuro-Linguistic Programming, or NLP.

Her interest isn't about replacing medical treatment with positive thinking.

Instead, she recognizes that people living with years of chronic illness can develop deeply ingrained patterns around fear, identity, safety, and expectations.

She wants to develop additional tools to help patients reframe how they speak to and about themselves during recovery.

Tick Boot Camp connects that idea with a recurring principle:

Who we believe we can become can influence what we're willing and able to do next.

Belief alone isn't a Lyme disease treatment.

But hope, self-talk, nervous-system regulation, and the belief that improvement is possible can matter deeply during a long recovery journey.

About Dr. Vy Simeles

Dr. Vy Simeles, ND, LAc is a naturopathic physician and licensed acupuncturist at Restorative Health Clinic in Oregon.

Her work focuses on complex chronic illness, including Lyme disease, mold illness, MCAS, dysautonomia, and other multifactorial conditions. Her clinical approach integrates naturopathic medicine, Chinese medicine, nutrition, detoxification, somatic therapies, and Cell Membrane Therapy.

Dr. Simeles and Dr. Melanie Stein have also taught together on lipid replacement therapy and restoring membranes, mitochondria, and autonomic stability in chronic inflammation.

Key Topics in This Episode

Lyme disease, chronic Lyme disease, Dr. Vy Simeles, cell membrane therapy, lipid replacement therapy, treatment sensitivity, multiple chemical sensitivity, neuroinflammation, brain fog, anxiety, depression, neuropsychiatric Lyme disease, nervous-system dysregulation, cell danger response, MCAS, mast cell activation, phospholipids, phosphatidylcholine, DHA, EPA, omega-3 fatty acids, plasmalogens, ProdromeGlia, mitochondrial dysfunction, ATP, chronic fatigue, Lyme disease nutrition, healthy fats, SOT, Supportive Oligonucleotide Therapy, nervous-system regulation, NLP, integrative medicine, naturopathic medicine, and Lyme disease recovery.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations — shorter, focused, and surrounded by the energy and activity of ILADS.

This conversation is a natural companion to Tick Boot Camp's LIVE from ILADS interview with Dr. Melanie Stein, which explores the same emerging cellular-health model from a complementary perspective.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Hear more conversations with Lyme disease doctors and healthcare professionals about complex chronic illness, treatment, nervous-system regulation, and recovery.

For more on nervous-system regulation, listen to Cathleen King's conversation about Primal Trust.

For more discussions involving SOT, visit Dr. Hank Sloan's Tick Boot Camp page.

Explore the Tick Boot Camp Podcast for patient stories and conversations with doctors, researchers, advocates, and other members of the Lyme disease and tick-borne illness community.

When Julia Bruzzese became seriously ill and lost the ability to walk, her brother James was beginning his medical education. Rather than allowing his family’s experience to drive him away from medicine, it gave him a new purpose: to become the kind of doctor his sister and other complex Lyme disease patients desperately needed.

In this deeply personal Tick Boot Camp Podcast episode, special guest co-host Nicole O'Donnell, co-hosts Rich Johannesen and Matt Sabatello welcome Dr. James Bruzzese, MD, founder of Bruzzese Medical. They are joined by returning guest and Lyme advocate Nicole O’Donnell, who brings her perspective as a patient, mother, and member of a family affected by tick-borne illness.

Julia’s story reached people around the world in 2015, when Pope Francis approached and blessed her on the tarmac at JFK Airport. She later appeared in the Lyme disease documentary The Quiet Epidemic. Behind the public moments was a close-knit family navigating medical uncertainty, debilitating illness, insurance barriers, and the painful experience of watching Julia’s symptoms be misunderstood.

James was present through it all. He attended appointments, accompanied Julia to hospitals, studied medical research, and advocated for her care. Those experiences shaped how he now listens to patients, evaluates complex symptom patterns, and approaches Lyme and tick-borne disease.

When Lyme Disease Becomes Personal

Dr. Bruzzese explains that he had already entered an accelerated medical program before Julia became critically ill. At the time, he was still questioning whether medicine was truly his calling.

Watching his sister become paralyzed, lose her independence, and struggle to obtain answers removed that uncertainty. He describes how helplessness and anger became motivation to study Lyme disease, challenge incomplete assumptions, and advocate for patients whose experiences were being dismissed.

The conversation also explores the effects of chronic illness on the entire family. While one person carries the physical burden of disease, parents and siblings may become caregivers, researchers, advocates, and witnesses to tremendous suffering.

Why Doctors May Miss Lyme Disease

Dr. Bruzzese offers an inside look at how Lyme disease is addressed during conventional medical training. He recalls receiving approximately two hours of Lyme education and being taught to consider other explanations before Lyme disease when evaluating symptoms such as a swollen joint.

He argues that medical education relies heavily on pattern recognition. That can help physicians work efficiently, but it becomes dangerous when doctors were never taught to recognize the shifting, multisystem patterns that can accompany Lyme and other tick-borne infections.

The result may be a patient whose fatigue, pain, neurological symptoms, dysautonomia, cognitive difficulties, or migrating symptoms are divided among specialists without anyone examining the complete clinical picture.

Medical Gaslighting, Bias, and the Patient Experience

Nicole O’Donnell shares what it felt like to remain sick while doctors and family members questioned whether Lyme disease explained her symptoms. The group considers whether clinicians deliberately gaslight patients or whether inadequate education, institutional pressure, limited appointment time, and rigid diagnostic frameworks produce an experience that feels like gaslighting.

Dr. Bruzzese discusses how patients, particularly women with complex combinations of pain, fatigue, dysautonomia, neurological symptoms, or autoimmune diagnoses, can become labeled as difficult before their complete histories are investigated.

Whatever the intent, the consequences are real. Patients may feel disbelieved, families may begin questioning them, and necessary evaluation or treatment may be delayed.

Building a Different Model of Lyme Care

Dr. Bruzzese describes his vision for Bruzzese Medical, a virtual practice focused on Lyme disease, tick-borne infections, and complex chronic presentations.

His goal is to provide individualized, patient-centered care that considers:

• Lyme disease and common tick-borne co-infections
• Multisystem and neurological symptoms
• Mold exposure and heavy-metal toxicity
• Immune, inflammatory, hormonal, and nutritional contributors
• Medication and supplement interactions
• Chronic and neuropathic pain
• Dysautonomia and peripheral neuropathy
• Quality of life during longer-term treatment

Rather than applying the same protocol to every person, Dr. Bruzzese emphasizes listening to the patient’s full story, studying how symptoms developed over time, and adjusting care according to individual response.

He also discusses the value of coordinated treatment planning. His family once had to determine how to organize and separate the more than 80 pills Julia was taking each day. He believes patients experiencing brain fog, exhaustion, and neurological symptoms should not be left to navigate complicated medication and supplement schedules by themselves.

Treating Pain While Addressing the Underlying Illness

Pain management is an especially important part of Dr. Bruzzese’s vision. His anesthesia training and work as a pain medicine fellow give him a perspective that is not always incorporated into Lyme disease care.

He explains that addressing an underlying infection and improving a patient’s immediate quality of life do not have to be competing priorities. Some people need relief from neuropathic pain, anxiety, sleep disruption, or other disabling symptoms while their medical team continues investigating and treating deeper contributors.

The discussion includes neuromodulation, chronic pain signaling, neuropathy, and why every intervention must be selected for the individual rather than offered as universal advice.

Expanding the Next Generation of Lyme-Literate Providers

Dr. Bruzzese does not want his work to stop with the patients he can personally see. Bruzzese Medical uses a team-based model with nurse practitioners, allowing additional clinicians to learn how to care for people with Lyme and tick-borne illnesses while expanding appointment availability.

His clinical perspective was influenced by extensive exposure to Lyme patients and training with physicians including Dr. Richard Horowitz and Dr. Somer DelSignore.

His message to patients is simple but powerful: whether someone has experienced a recent tick bite or has remained sick after visiting numerous doctors, their story deserves to be heard and investigated.

Key Topics Discussed

• How Julia Bruzzese’s illness affected James and his entire family
• Julia’s meeting and blessing from Pope Francis
• Her appearance in The Quiet Epidemic
• Why James pursued medicine and Lyme disease care
• Gaps in medical-school education about tick-borne disease
• The limitations of diagnosis through pattern recognition
• Why complex patients may feel dismissed or gaslit
• The effects of insurance and institutional pressures on care
• Clinical evaluation when testing does not provide a complete answer
• Lyme disease co-infections and environmental contributors
• Individualized treatment instead of blanket protocols
• Medication and supplement coordination
• Neuropathic pain and neuromodulation
• The role of anesthesia and pain medicine in chronic illness care
• Bruzzese Medical’s team-based virtual practice
• Training more healthcare professionals to serve the Lyme community
• Why patients need validation, communication, and continued hope

Work With Dr. James Bruzzese

Bruzzese Medical currently offers virtual appointments when appropriate and permitted by state regulations. The practice is private-pay and does not accept insurance for appointments.

Patients can learn more, request an appointment, and access the practice’s booking portal through the Bruzzese Medical website.

Additional Resources

• Find Lyme-literate doctors featured by Tick Boot Camp
• Learn about Lyme disease testing
• Explore the Tick Boot Camp Podcast
• Watch The Quiet Epidemic

LIVE from ILADS: Tick Boot Camp welcomes back Dr. Melanie Stein, ND for an update on her approach to chronic Lyme disease and complex illness — and the release of her book, Breaking Through Chronic Illness: The Science of Cellular Repair and the Path to Lasting Recovery.

Why do some people continue struggling after months or even years of Lyme disease treatment?

Dr. Stein believes part of the answer may be found at the cellular level. In this short-form conference conversation, she explains her clinical model of repairing cell membranes, supporting mitochondrial function, reducing inflammation, calming an overactive nervous and immune system, and rebuilding the foundations of health so the body may be better prepared for treatment and recovery.

Rather than waiting until the end of Lyme treatment to focus on repair, Dr. Stein makes a different argument:

Repair may need to begin at the beginning.

This interview was recorded live at the ILADS conference, so you may hear some of the energy and background activity of the event throughout the conversation.

Why Can Lyme Recovery Stall?

Dr. Stein begins with a familiar problem in the Lyme community.

A patient is diagnosed with an infection. Treatment begins. Yet months or years later, that person may still experience fatigue, brain fog, neurological symptoms, immune dysfunction, or other persistent problems.

Dr. Stein's clinical model asks whether focusing primarily on killing or reducing pathogens overlooks another important part of recovery:

What condition is the body in while we're treating the infection?

She discusses oxidative stress, mitochondrial dysfunction, impaired cellular communication, inflammation, and damage to cell membranes as factors she believes can help keep chronically ill patients stuck.

Her book, Breaking Through Chronic Illness, expands on this idea by focusing on cellular repair as part of the recovery process.

Treat the Body, Not Just the Bug

This conversation connects directly with a recurring Tick Boot Camp observation.

People who recover from complex Lyme disease often appear to need more than an antimicrobial strategy.

Tick Boot Camp discusses its PARM framework:

• Prehabilitation
• Assist
• Repair
• Maintenance

Dr. Stein agrees with the importance of repair but proposes an important modification:

Don't wait until the repair phase to start repairing.

She argues that improving the body's cellular environment earlier may help prepare patients for subsequent interventions and make treatment more tolerable or effective.

It's a shift from asking only, "How do we kill the pathogen?"

Instead, the question becomes:

"How do we help the body become healthier while we're addressing the pathogen?"

What Happens to Cells During Chronic Illness?

Dr. Stein describes cell membranes as essential structures that help regulate what enters and leaves a cell and facilitate communication between cells.

She discusses phosphatidylcholine and other lipids as important components of those membranes.

Within her model, oxidative stress associated with infection can damage these fats and disrupt membrane function, cellular communication, mitochondrial function, and immune signaling.

The science can become complicated quickly, so the conversation develops a much simpler metaphor.

The Castle & Moat Metaphor

Imagine the cell is a castle.

Surrounding that castle is a moat — the cell membrane.

The moat helps determine what enters and leaves while also participating in the castle's communication and defenses.

Dr. Stein explains that when the membrane becomes damaged, the system may no longer operate normally.

The drawbridge doesn't work properly.

Communication systems can become impaired.

Defenses may become less effective.

The goal of cellular repair, in her framework, is to restore that protective environment so cellular communication and function can improve.

It's an intentionally simple analogy for a complicated biological concept, but it helps explain why Dr. Stein places so much emphasis on cell membrane health.

Phosphatidylcholine & Cell Membrane Support

One intervention discussed in the episode is phosphatidylcholine.

Dr. Stein describes phosphatidylcholine as an important fatty component of cell membranes and discusses replenishing healthy lipids as part of her approach to cellular repair.

She also discusses butyrate, a short-chain fatty acid naturally produced by gut bacteria, within her broader cellular-health protocols.

These therapies aren't presented here as universal Lyme disease treatments.

They are components of Dr. Stein's clinical approach to patients with complex chronic illness and should be considered with an appropriately trained healthcare professional based on an individual's medical needs.

ILADS has also featured Dr. Stein teaching on lipid replacement therapy and cellular restoration in tick-borne disease. (pathlms.com)

Calm the Body Before Pushing Treatment

Before getting into advanced cellular therapies, however, Dr. Stein emphasizes something more fundamental:

Help the body feel safe again.

Many chronically ill patients describe feeling stuck in a state of hypervigilance or fight-or-flight.

Dr. Stein discusses several tools she uses clinically to address that state, including:

• Nervous-system regulation
• Limbic-system retraining
• Mast-cell support
• Anti-inflammatory strategies
• Sleep
• Breathing exercises
• Gentle foundational interventions

She references programs including DNRS, Gupta, and Primal Trust while acknowledging an important reality: some severely ill patients may initially be too symptomatic or overwhelmed to participate in an intensive brain-retraining program.

The approach therefore needs to meet the patient where they are.

For more Tick Boot Camp conversations on nervous-system regulation, explore Primal Trust with Cathleen King.

Sleep & Digestion Come First

For all the sophisticated science discussed in the interview, Dr. Stein's first priorities for a new patient are surprisingly basic.

Sleep and bowel function.

She emphasizes sleep because the body needs restorative time to regulate, integrate, and recover.

If someone isn't sleeping adequately, she argues that adding increasingly complicated interventions may accomplish little because the body isn't operating in an environment conducive to healing.

Dr. Stein also discusses evaluating patients for sleep disorders rather than assuming insomnia is simply another unavoidable symptom of Lyme disease.

That can include investigating:

• Sleep apnea
• REM sleep disorders
• Circadian disruption
• Cortisol dysregulation
• Poor sleep hygiene

She notes that sleep apnea isn't limited to people who fit the stereotype of an older or overweight patient and says she refers patients for sleep studies when appropriate.

Practical Strategies for Better Sleep

Dr. Stein discusses several approaches she may use or recommend depending on the patient, including:

• Consistent sleep routines
• Reducing television and screens before bed
• Creating a dark sleeping environment
• Sleep masks
• Breathing exercises
• Meditation
• Gradually shifting a delayed sleep schedule
• Evaluating possible sleep disorders

She also discusses L-theanine, GABA, magnesium, and low-dose melatonin within her clinical practice.

The larger message is more important than any individual intervention:

Don't overlook the foundations while pursuing advanced Lyme treatment.

Nutrition as Cellular Medicine

Food provides the raw materials cells need to function.

Dr. Stein emphasizes nutrient-dense foods and healthy fats as part of her cellular-repair philosophy.

She personally favors a lower-carbohydrate, ketogenic-style approach for many patients — not necessarily with the goal of maintaining nutritional ketosis, but as a way of emphasizing healthy fats alongside organic vegetables and nutrient-dense foods.

Diet, however, should be individualized.

The important principle in this conversation is that sophisticated therapies cannot replace the basic nutrients required for normal biochemical processes.

As Dr. Stein explains later in the episode, everyday choices influence biochemistry.

Movement Doesn't Have to Mean Exercise

For someone severely ill with Lyme disease, the word exercise can be intimidating — and in some situations inappropriate.

Dr. Stein instead talks about movement at the level a patient's body can currently tolerate.

That could mean something as simple as moving the legs while lying in bed.

Her goal is to gradually support circulation, oxygenation, mitochondrial activity, and energy production without demanding more from the body than it can currently handle.

Recovery doesn't have to begin with a workout.

It can begin with the smallest movement the body safely permits.

Mitochondria & Energy Production

Mitochondria produce ATP, the energy cells use to perform their functions.

Dr. Stein connects mitochondrial dysfunction with common chronic illness complaints such as fatigue, poor stamina, cognitive dysfunction, and difficulty recovering from stress.

But mitochondrial support can't exist in isolation.

If a patient remains chronically stressed, poorly nourished, sleep-deprived, or otherwise physiologically dysregulated, Dr. Stein argues that even sophisticated mitochondrial interventions may have difficulty producing durable improvement.

That brings the conversation back to the foundations:

Sleep. Nutrition. Movement. Nervous-system regulation. Cellular support.

The advanced protocols are built on top of those fundamentals — not instead of them.

Cellular Repair Before, During & After Lyme Treatment

One of the biggest takeaways from this interview is that healing doesn't necessarily have to follow a rigid sequence.

The traditional mental model might look like:

Kill the infection → repair the damage → rehabilitate the patient.

Dr. Stein proposes something more integrated.

Support the patient before antimicrobial treatment.

Continue supporting cellular health during treatment.

Repair throughout the process.

Then continue rebuilding and maintaining health afterward.

In Tick Boot Camp language, prehabilitation, assistance, repair, rehabilitation, and maintenance can overlap rather than existing as completely separate boxes.

Breaking Through Chronic Illness

Dr. Stein's book, Breaking Through Chronic Illness: The Science of Cellular Repair and the Path to Lasting Recovery, expands on the concepts introduced in this interview.

She wrote the book for both patients and practitioners.

Her goal is to translate complicated cellular science into language people living with chronic illness can understand while also encouraging clinicians to think beyond antimicrobial treatment alone.

The book explores her cellular-repair framework and the idea that persistent illness can involve dysfunction in cell membranes, mitochondria, energy production, detoxification, immune regulation, and cellular communication.

Learn more about Breaking Through Chronic Illness and Dr. Stein's cellular-healing approach.

About Dr. Melanie Stein

Dr. Melanie Stein, ND is a licensed naturopathic physician and founder of Restorative Health Clinic in Portland, Oregon.

Her clinical work focuses on complex chronic illnesses including Lyme disease and other tick-borne infections, mold-related illness, MCAS, POTS, chronic fatigue, environmental illness, and cellular dysfunction.

Dr. Stein's interest in complex chronic illness is also personal. She has publicly described developing Lyme disease and Bartonella and experiencing severe neurological illness, including paralysis, before ultimately receiving answers. That experience helped shape her focus on patients with difficult-to-diagnose and persistent illnesses.

ILADS identifies Dr. Stein as a clinician specializing in vector-borne illness and complex chronic conditions who integrates environmental medicine, chronic infection management, and individualized therapies. (ilads.org)

Key Topics in This Episode

Chronic Lyme disease, Lyme disease recovery, Dr. Melanie Stein, cellular repair, cell membrane therapy, mitochondrial dysfunction, mitochondrial health, phosphatidylcholine, butyrate, oxidative stress, chronic inflammation, chronic fatigue, brain fog, cellular communication, nervous-system regulation, limbic-system retraining, DNRS, Gupta Program, Primal Trust, MCAS, mast cell activation, sleep, sleep apnea, Lyme disease nutrition, movement, ATP production, prehabilitation, chronic illness recovery, integrative medicine, naturopathic medicine, and Breaking Through Chronic Illness.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Dr. Stein was among the clinicians featured by ILADS at the conference, where her work focused on vector-borne illness, complex chronic disease, and cellular health.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations — shorter, focused, and surrounded by the energy and activity of ILADS.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Explore more conversations with Lyme disease doctors and healthcare professionals about testing, treatment, cellular health, nervous-system regulation, and recovery.

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LIVE from ILADS: Tick Boot Camp sits down with Dr. Somer DelSignore, DNP, BC-PNP, founder of Hudson Valley Integrative Health in Beacon, New York, for a wide-ranging conversation about pediatric Lyme disease, congenital tick-borne infections, autism spectrum symptoms, PANS/PANDAS, autoimmune encephalopathy, developmental delays, behavioral changes, and the importance of investigating potential biological contributors to neuroimmune dysfunction.

Dr. DelSignore practices integrative pediatrics with a focus on children experiencing complex chronic illness and neuroimmune symptoms. Rather than stopping at a behavioral or developmental diagnosis, she describes a root-cause approach that asks a deeper question:

What biological processes could be contributing to this child's symptoms?

The conversation explores some challenging and evolving areas of medicine, including possible relationships among infections, inflammation, immune dysfunction, neurological development, and behavioral symptoms. Dr. DelSignore shares observations from her clinical practice and argues for more comprehensive biomedical evaluation of children with complex or atypical presentations.

This interview was recorded live at the ILADS conference, so you may hear some of the energy and background activity of the event throughout the conversation.

Looking Beyond a Pediatric Diagnosis

Dr. DelSignore describes treating children who don't always fit neatly into one diagnostic category.

Some arrive with:

• Autism spectrum diagnoses or symptoms
• Developmental delays
• Behavioral changes
• Cognitive difficulties
• Motor delays
• Speech and language delays
• PANS/PANDAS
• Autoimmune or neuroimmune symptoms
• Suspected congenital Lyme disease
• Other tick-borne infections

A pattern she says sometimes catches parents' attention is an unexpected improvement when a child receives treatment for an unrelated infection.

Parents may report that their child temporarily gains language, motor, behavioral, or other skills while taking an antibiotic, only to regress after treatment ends.

For Dr. DelSignore, observations like these are clues that warrant further investigation rather than immediate conclusions.

Root-Cause Medicine for Children

Dr. DelSignore describes her work as a form of detective work.

A diagnosis describes what clinicians are observing, but she wants to investigate why those symptoms are occurring.

When a child presents with neurological, developmental, behavioral, or immune dysfunction, she evaluates possible contributors and works backward from the symptoms.

That may involve extensive history-taking, laboratory evaluation, the child's medical history, environmental factors, immune function, infections, inflammation, genetics, and sometimes the parents' medical histories.

Once potential contributors are identified, her goal is not only to address them but also to support the immune and neurological systems as the child progresses.

Learn more about Dr. Somer DelSignore and Hudson Valley Integrative Health.

Congenital Lyme & Tick-Borne Infections

One of the most important subjects in this conversation is congenital or maternal-fetal transmission of tick-borne infections.

Dr. DelSignore discusses evaluating both children and their parents when the child's presentation suggests that infection or immune dysfunction could have begun during pregnancy or early development.

She specifically discusses Borrelia, Bartonella, and Babesia — the pathogens Tick Boot Camp often refers to as the Three B's — in the context of her clinical work.

Dr. DelSignore also discusses another possibility: even when direct transmission isn't established in an individual case, maternal infection and inflammation during pregnancy could potentially influence fetal immune or neurological development.

These are complex and evolving areas of research, and determining what occurred in an individual child requires careful clinical evaluation rather than assuming that every developmental or neuroimmune condition has an infectious cause.

Why Family History Matters

With very young patients, Dr. DelSignore says the parents' history can become especially important.

She asks mothers questions such as:

• Were you exposed to ticks?
• Did you experience unexplained symptoms before or during pregnancy?
• Did you have unusual illnesses earlier in life?
• Did you struggle with immune dysfunction?
• Do you have autoimmune conditions?
• Were there infections or inflammatory problems during pregnancy?

For an infant who cannot describe symptoms, family history may provide clues that aren't available from the child alone.

Dr. DelSignore combines that history with clinical presentation and diagnostic testing when deciding what warrants further investigation.

What Might Lyme Disease Look Like in a Young Child?

Young children present a unique diagnostic challenge.

They cannot necessarily explain that they are exhausted, experiencing pain, having temperature changes, or feeling neurologically different.

Dr. DelSignore describes seeing infants with findings such as hypotonia — unusually low muscle tone — along with feeding and sleeping difficulties that extend beyond what would ordinarily be expected.

As children grow, additional clues may emerge.

Clinicians and parents can begin evaluating whether a child is:

• Sitting appropriately
• Crawling
• Developing speech
• Gaining words
• Building sentences
• Developing motor skills
• Interacting socially
• Meeting expected developmental milestones

Dr. DelSignore emphasizes that none of these signs by themselves diagnose Lyme disease or another tick-borne infection.

Instead, they may be reasons to investigate further when considered alongside medical history, exposures, physical findings, and other symptoms.

Behavioral Symptoms in Toddlers & Children

In toddlers and older children with tick-borne illness, Dr. DelSignore says the presentation can become heavily neurological or behavioral.

She discusses symptoms including:

• Irritability
• Impulsivity
• Poor sleep
• Delayed speech
• Social difficulties
• Auditory sensitivity
• Visual sensitivity
• Anxiety
• Depression
• OCD-like behaviors
• Rage
• Fatigue
• Sweating
• Temperature dysregulation

The difficulty is obvious: many of these symptoms overlap with other pediatric neurological, developmental, psychiatric, and medical conditions.

A nonverbal child also may not be able to report fatigue, pain, headaches, sensory changes, or other physical symptoms.

That overlap is one reason Dr. DelSignore argues against trying to identify tick-borne illness from behavior alone.

Autism, Lyme Disease & an Important Distinction

A substantial portion of this conversation explores autism and possible biological contributors to autism-spectrum presentations.

This requires an important distinction.

Autism is not synonymous with Lyme disease, and an autism diagnosis by itself does not establish the presence of a tick-borne infection.

Dr. DelSignore's position is that some children diagnosed with autism or presenting with autism-like symptoms may also have infections, inflammation, autoimmune processes, or other biomedical issues that deserve investigation.

She describes autism as a syndrome diagnosed from patterns of behavior and development rather than through a single definitive laboratory test. From her root-cause perspective, she therefore asks what potentially modifiable biological factors might coexist with or contribute to an individual child's presentation.

This distinction is especially important because the scientific questions surrounding infection, immune activation, neurodevelopment, and autism remain complex and actively studied.

Can Treating an Infection Change Developmental Symptoms?

Dr. DelSignore shares clinical experiences in which she says children experienced substantial developmental and behavioral improvement after underlying infections and immune dysfunction were addressed.

She discusses one case involving a nonverbal child with significant autism-spectrum symptoms whom she says tested positive for Borrelia, Bartonella, and Babesia in the context of suspected maternal transmission.

Following treatment, she reports that the child progressed dramatically and was functioning much more typically by school age.

This is a clinical case described by Dr. DelSignore, not evidence that tick-borne infections explain autism broadly or that antimicrobial treatment is an established autism treatment.

What it illustrates is the central argument she makes throughout this episode:

When a child's presentation is unusual or complex, clinicians should remain curious about potentially treatable medical contributors.

The Neuroimmune Connection

Dr. DelSignore encourages clinicians to think about some pediatric presentations through a neuroimmune lens.

The nervous system and immune system don't operate independently.

Infection can trigger immune activity and inflammation, and immune dysfunction can have neurological consequences.

Dr. DelSignore discusses evaluating children for both infections and evidence of autoimmune activity when clinically appropriate.

Rather than attempting to draw a clean line between a behavioral diagnosis and an infectious diagnosis, she looks at the entire clinical picture and asks what combination of processes could be affecting that individual child.

PANS/PANDAS & Autoimmune Encephalopathy

This same framework is relevant to Dr. DelSignore's work with PANS, PANDAS, and autoimmune encephalopathy.

Children with these conditions can experience dramatic neuropsychiatric or behavioral changes associated with immune activation.

Dr. DelSignore's clinical focus includes identifying possible infectious and inflammatory triggers and then addressing both the trigger and the downstream immune or neurological dysfunction.

Her work therefore overlaps infectious disease, immunology, neurology, psychiatry, and developmental pediatrics rather than remaining confined to a single specialty.

ILADS identifies Dr. DelSignore's areas of focus as neuroimmunology, autism spectrum disorder, PANS/PANDAS, and chronic/congenital Lyme disease.

Why Comprehensive Evaluation Matters

One of Dr. DelSignore's strongest messages is that children with complex developmental or behavioral presentations deserve a thorough medical evaluation.

She says older children often reach her practice after seeing numerous providers while their symptoms have been characterized primarily as behavioral or psychiatric.

By the time they arrive, some families have spent years searching for explanations.

Dr. DelSignore advocates looking more broadly at potential contributors, including infection, immune dysfunction, inflammation, environmental exposures, genetics, nutrition, and other biological factors when clinically indicated.

The goal isn't to assume every child has Lyme disease.

It's to ask enough questions before deciding that nothing else is contributing to the child's symptoms.

Psychiatric Symptoms Can Have Medical Contributors

The conversation also examines the relationship between physical health and psychiatric symptoms.

Dr. DelSignore describes situations in which she believes infection-driven immune activation and neuroinflammation may contribute to anxiety, depression, irritability, OCD-like behaviors, rage, and other neuropsychiatric symptoms.

She argues for investigating potential biological contributors rather than automatically treating every behavioral presentation as an isolated psychiatric problem.

At the same time, the conversation acknowledges that psychiatric medications can be appropriate and important for some patients.

The larger message is individualized care: evaluate the whole child and determine what combination of supports that particular patient needs.

No Single Cause of Autism

Near the end of the interview, the conversation turns to claims about acetaminophen/Tylenol use during pregnancy and autism.

Dr. DelSignore rejects the idea that there is a simple, single explanation for autism.

She describes autism as potentially involving many interacting factors and argues that research findings about individual exposures need to be interpreted in context rather than reduced to a headline claiming one substance "causes autism."

Her broader point aligns with the philosophy she describes throughout the interview:

There is no simple answer for a complex biological system.

Instead, she looks for what she describes as a "stacking" of contributing factors that may differ substantially from one child to another.

Can Women with Lyme Disease Have Children?

The interview closes on a question that creates tremendous fear for many young women diagnosed with Lyme disease:

Can I safely have a child?

Tick Boot Camp raises the importance of helping women understand congenital Lyme disease, pregnancy, treatment before conception, care during pregnancy, and what parents and clinicians should consider after birth.

Dr. DelSignore agrees that these questions deserve much deeper discussion.

The existence of congenital transmission concerns should not be interpreted as meaning that someone with Lyme disease cannot have a healthy pregnancy or healthy child.

Instead, it reinforces the value of working with knowledgeable healthcare professionals to develop an individualized plan before and during pregnancy.

For a deeper Tick Boot Camp conversation with Dr. DelSignore, listen to Pediatric Lyme, Autism Regression, PANS/PANDAS & Root-Cause Healing.

About Dr. Somer DelSignore

Dr. Somer DelSignore, DNP, BC-PNP is a board-certified pediatric provider and founder of Hudson Valley Integrative Health in Beacon, New York.

Her clinical work focuses on complex chronic illness in children, including neuroimmunology, PANS/PANDAS, autoimmune encephalopathy, autism-spectrum presentations, Lyme disease, and congenital tick-borne illness.

She completed graduate and doctoral education at the University of Pennsylvania and SUNY Upstate Medical University and has pursued advanced mentorship and training in integrative medicine, Lyme disease, PANS, and autism. She developed the R.E.S.E.T. Protocol, a root-cause framework for addressing immune dysfunction.

Dr. DelSignore is also a member of the ILADS Pediatric Committee.

Key Topics in This Episode

Pediatric Lyme disease, congenital Lyme disease, Dr. Somer DelSignore, autism and Lyme disease, autism spectrum disorder, PANS, PANDAS, autoimmune encephalopathy, neuroimmune dysfunction, neuroinflammation, Borrelia, Bartonella, Babesia, Three B's, developmental delays, speech delay, hypotonia, behavioral symptoms, pediatric tick-borne disease, maternal-fetal transmission, congenital tick-borne infections, root-cause medicine, integrative pediatrics, biomedical evaluation, immune dysfunction, psychiatric symptoms, pregnancy and Lyme disease, and pediatric Lyme testing.

About This LIVE from ILADS Interview

This conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations — shorter, focused, and surrounded by the activity of one of the world's major gatherings of Lyme and tick-borne disease clinicians, researchers, advocates, and innovators.

Dr. DelSignore was also a speaker at the conference, where ILADS highlighted her work in integrative pediatrics and personalized treatment for children.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Watch or listen to Tick Boot Camp's long-form interview with Dr. Somer DelSignore for a deeper exploration of pediatric Lyme disease, congenital infection, autism regression, PANS/PANDAS, and root-cause healing.

Hear more conversations with Lyme disease doctors and healthcare professionals, or explore the Tick Boot Camp Podcast for hundreds of patient stories and interviews with doctors, researchers, advocates, and other voices throughout the Lyme disease community.

LIVE from ILADS: Tick Boot Camp sits down with Mindy Tobin Daigle, MSN, APRN-BC, a nurse practitioner whose approach to Lyme disease and complex chronic illness was profoundly shaped by her own experience as a patient.

Before treating people with Lyme disease, Mindy lived it. After years of misdiagnosis, she was diagnosed with Lyme disease in 2010 following earlier tick exposures. Her illness became multisystemic and severe, affecting her heart, brain, joints, gastrointestinal system, bladder, skin, muscles, and more. At her sickest, she describes being bed-bound, wheelchair-bound, experiencing seizures and aphasia, and dependent on others for basic care.

That experience gave her a mission: become the healthcare provider she needed when she was sick and searching for answers.

This conversation goes far beyond Lyme disease treatment. Mindy and Tick Boot Camp explore medical gaslighting, listening to patients, compassion versus empathy, realistic expectations for chronic illness recovery, the importance of self-compassion, finding your physical and emotional "edges," and why progress is often measured in inches rather than feet.

This interview was recorded live at the ILADS conference, so you may hear some of the energy and background activity of the event throughout the conversation.

A Nurse Practitioner Who Became the Patient

Mindy was already a trained medical professional when she became seriously ill.

Her first reported tick bite occurred in South Africa in 1997, followed by additional exposures while she was working as a nurse in Minnesota and Wisconsin.

Despite her medical training and access to healthcare, Lyme disease wasn't initially identified as the explanation for her growing collection of symptoms.

Mindy describes repeatedly mentioning her history of tick bites only to have the possibility dismissed.

Eventually, during a severe pain crisis, physician Dr. Ted Gillespie spent significant time listening to her history and asked a simple question:

What about Lyme disease?

Testing through Labcorp produced a positive Western blot, but Mindy says that even with that result, she continued encountering resistance to the diagnosis.

Eventually, she found her way to Dr. Patricia Salvato in Houston and began treatment.

Becoming the Practitioner She Needed

Mindy made herself a promise during her illness:

If she recovered, she would become the practitioner she had needed when she was lost and sick.

That commitment eventually brought her to ILADS.

At her first ILADS conference in 2013, Mindy heard the late Dr. Christine Green speak. The following week, she cold-called Dr. Green's office in San Francisco and asked if she could shadow her.

That decision turned into a professional relationship lasting more than a decade.

Mindy says her personal development as a Lyme patient became inseparable from her professional development as a clinician.

From Sympathy to Empathy to Compassion

One of the most powerful themes in this conversation is the evolution from sympathy to empathy to compassion.

Mindy describes having sympathy as a young nurse and developing greater empathy with experience.

After becoming seriously ill herself, she says she developed something deeper: compassion.

Her definition of compassion centers on being willing to sit with another person's pain without judgment, interference, or adding to their suffering.

For a Lyme patient who has spent years being dismissed, questioned, rushed, or told symptoms are unexplained, simply encountering a practitioner who genuinely listens can be meaningful.

What Compassionate Lyme Care Looks Like

Compassion isn't simply being nice to patients.

For Mindy, it changes how she practices.

When a patient arrives overwhelmed, crying, angry, frustrated, struggling with technology, or simply exhausted from managing chronic illness, her first goal isn't to rush through a checklist.

She meets the patient where they are.

She tells patients:

We're not in a rush.

The goal is to take the time needed to understand the person in front of her and determine what needs attention.

That approach can be particularly important for patients with complex chronic illnesses who may arrive at an appointment carrying years of symptoms, medical records, failed treatments, fear, and frustration.

Medical Gaslighting & the Importance of Listening

Mindy also discusses the medical dismissal she experienced during her own illness and what patients often describe as medical gaslighting.

The conversation explores why healthcare professionals may dismiss patient experiences even when a patient presents with a complicated history or evidence that warrants further investigation.

Mindy emphasizes something deceptively simple:

Remain curious.

A practitioner doesn't have to immediately know every answer.

But when something doesn't make sense, curiosity can keep the diagnostic process moving instead of shutting the patient down.

For Mindy, listening and believing that a patient is genuinely experiencing what they describe are foundational to the therapeutic relationship.

The Last Five Minutes

Mindy has developed a practice she calls The Last 5 Minutes: 8 Concepts and Contemplations in Healing.

After spending most of an appointment discussing symptoms, medical decision-making, treatment, and care planning, she reserves the final minutes for something different:

Healing.

It's a moment to put the metaphorical pencils down and talk heart-to-heart about what the patient is experiencing beyond laboratory results and treatment protocols.

Her eight concepts and contemplations include:

1. Keyhole Sunset
2. Progress is made in inches, not feet
3. Awareness, Acceptance, Compassion
4. Pain is Information
5. This is your Hero's Journey
6. Healing is possible, with or without a cure
7. Find a micron of joy and build on it
8. Do what you need to do, rest when you need to rest, force nothing

Mindy's original essay on the eight concepts offers a deeper exploration of the philosophy she discusses during this interview.

Progress Is Made in Inches, Not Feet

People with chronic Lyme disease are understandably in a hurry.

They want their health back.

They want their careers, relationships, independence, energy, and lives back.

But recovery doesn't always move at the speed a patient wants.

Mindy prepares patients for the possibility of a long process in which progress isn't perfectly linear.

There can be improvements followed by setbacks.

Instead of interpreting every setback as failure, she encourages patients to recognize that regression can sometimes occur within a larger pattern of progression.

Mindy expands on this philosophy in Progress Comes in Inches, Not Feet.

Self-Compassion During Lyme Recovery

Chronic illness can create a destructive cycle of self-blame.

Patients may think:

Why aren't I better yet?

Did I do something wrong?

Why can't my body handle this?

Why can't I do what I used to do?

Mindy explains that even an excellent medical treatment plan doesn't automatically resolve the patient's relationship with themselves.

Healing may also require learning to stop being at war with your own body.

That doesn't mean giving up on improvement.

It means learning how to pursue improvement without constantly punishing yourself for where you are today.

Her writing on self-compassion and healing explores this balance between accepting present limitations and continuing to move forward.

Finding Your Edges

One of Mindy's most useful metaphors is finding your edges.

After extensive treatment, she reached a point where she could no longer tolerate additional treatment in the same way.

She learned to recognize the boundaries of what her body could currently handle.

Rather than treating those boundaries as permanent walls, she describes living as well as possible within her edges — and periodically testing whether those edges can expand.

If you can stand and wash dishes for five minutes, perhaps eventually you try seven.

Small improvements matter.

Progress in inches can eventually create meaningful change.

Sometimes Progress Means Rest

Pushing isn't always the answer.

Sometimes the next productive step is doing less.

Mindy distinguishes genuine restorative rest from simply lying down while remaining mentally stimulated by television, phones, scrolling, or other distractions.

The challenge is learning when to push an edge and when the body genuinely needs recovery.

That requires awareness, patience, and wisdom.

For a practitioner, it also means understanding that two patients with similar diagnoses may need very different guidance at a particular moment.

A Biopsychosocial Approach to Lyme Disease

Mindy describes her clinical approach as biopsychosocial.

That means considering the patient's:

• Biology
• Psychology
• Social environment
• Physical limitations
• Emotional health
• Relationships
• Stressors
• Daily circumstances

Complex chronic illness doesn't occur in isolation from the rest of a person's life.

Treatment may target infections and physical dysfunction, but healing can also involve how someone relates to their illness, themselves, and the world around them.

Mindy's own experience as both patient and practitioner gives her a particularly personal perspective on those intersections.

Can Having Lyme Disease Make Someone a Different Practitioner?

The conversation explores a provocative question:

Does personally experiencing Lyme disease change someone's ability to care for Lyme patients?

Mindy says her own illness gave her an understanding she didn't have beforehand.

She can recognize nuances between different kinds of fatigue, pain, and physical limitations because she has experienced them.

At the same time, she points to her longtime mentor Dr. Christine Green as an example of an accomplished Lyme clinician who did not personally have Lyme disease.

The distinction isn't that someone must have Lyme disease to become an excellent practitioner.

Rather, lived experience can provide another form of knowledge — one that can complement medical education and clinical expertise.

Working with Ravel Health

At the time of this interview, Mindy had recently begun working with Ravel Health, a virtual care platform focused on complex chronic illness.

She explains that the model gives her greater flexibility to structure her schedule around both her patients' needs and her own ongoing health limitations.

That matters because Mindy continues to manage symptoms herself.

The flexibility allows her to dedicate significant attention to a patient while also building recovery time between demanding appointments.

For Mindy, finding a sustainable way to practice is another extension of the same compassion she encourages patients to develop for themselves.

The Human Capacity to Overcome

The interview ends with hope.

Despite everything Mindy has personally experienced — and everything she sees among people living with complex chronic illness — what repeatedly impresses her is the human capacity to overcome adversity.

She watches patients face enormous physical and emotional challenges, adapt, continue forward, and sometimes emerge with a different understanding of themselves and their lives.

That doesn't minimize how difficult Lyme disease can be.

It recognizes that even within an extraordinarily difficult journey, healing, growth, purpose, and progress remain possible.

About Mindy Tobin Daigle, MSN, APRN-BC

Mindy Tobin Daigle, MSN, APRN-BC is an adult health nurse practitioner with decades of nursing and clinical experience. She has worked extensively with people navigating Lyme disease, vector-borne illness, chronic fatigue, chronic pain, and other complex chronic conditions.

For more than a decade, she collaborated with Lyme disease specialist Dr. Christine Green at Green Oaks Medical Center. Her professional work has been profoundly influenced by her own experience as a Lyme disease patient.

Read Mindy's The Last 5 Minutes: 8 Concepts and Contemplations in Healing and her related writings about progress in chronic Lyme disease and self-compassion during healing.

Key Topics in This Episode

Lyme disease, chronic Lyme disease, Mindy Daigle, Lyme disease nurse practitioner, Lyme disease recovery, medical gaslighting, patient validation, compassion in healthcare, empathy, self-compassion, chronic illness recovery, Lyme disease misdiagnosis, Lyme disease treatment, healing from chronic illness, progress in inches, finding your edges, biopsychosocial medicine, patient-centered care, chronic fatigue, chronic pain, Lyme disease advocacy, Ravel Health, Christine Green, and ILADS.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations — shorter, focused, and surrounded by the activity of one of the world's major gatherings of Lyme and tick-borne disease clinicians, researchers, advocates, and innovators.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Hear more conversations with Lyme disease doctors and healthcare professionals about diagnosis, treatment, recovery, and complex tick-borne illness.

Explore the Tick Boot Camp Podcast for patient stories and conversations with doctors, researchers, advocates, and other members of the Lyme disease community — all designed to educate, validate, build community, and reinforce that healing is possible.

LIVE from ILADS: Tick Boot Camp reconnects with Nicole Bell, CEO of Galaxy Diagnostics, for a focused conversation about one of the biggest challenges in Lyme disease and tick-borne illness: getting an accurate diagnosis.

Bell breaks down the differences between antibody testing, antigen testing, and PCR-based direct detection while explaining why stealth pathogens such as Borrelia, Bartonella, and Babesia can be so difficult to find. She also introduces Galaxy's BBB Direct Detect digital PCR testing, discusses emerging findings involving Babesia species, and explains why a negative antibody test doesn't always tell the entire story.

For Bell, the mission is deeply personal. Her husband, Russ, initially tested negative for Lyme disease and was later diagnosed with Alzheimer's disease before his family ultimately discovered tick-borne infections were part of his complex illness. That experience helped redirect Bell's engineering and medical technology background toward improving diagnostics for other patients searching for answers.

This interview was recorded live at the ILADS conference, so you may hear some of the energy and background activity of the event throughout the conversation.

Why Can Lyme Disease Testing Be So Difficult?

Bell begins by explaining one of the fundamental problems with diagnosing Lyme disease and other tick-borne infections: many of the pathogens clinicians are searching for can be difficult to detect.

Some occur at low levels in the bloodstream. Others may migrate into tissues or circulate intermittently.

Historically, much of tick-borne disease testing has therefore relied on indirect detection — looking for the patient's immune response rather than directly detecting the organism.

Antibody testing can provide useful information, but Bell explains why interpretation can become complicated.

A patient's antibody response can vary depending on factors including:

• Timing of infection
• Individual immune response
• Immune suppression or dysregulation
• Previous exposure
• Previous treatment
• Medications that suppress immune activity
• Cross-reactivity
• Whether an infection is current or historical

This is why Bell views antibody testing as one tool rather than the entire diagnostic toolbox.

Antibody Testing: Detecting the Immune Response

Antibody testing is an indirect testing method.

Instead of looking for Borrelia itself, for example, the test looks for evidence that the patient's immune system has responded to it.

Bell discusses IgM and IgG antibodies and why timing matters.

IgM antibodies are generally associated with an earlier immune response, while IgG responses can take longer to develop. In Lyme disease, that delay creates a particular challenge because early diagnosis and treatment can be especially important.

Some infected patients may mount a strong measurable antibody response, while others may produce a weaker or delayed response.

Bell points to research showing how dramatically immune responses can differ even under controlled experimental conditions.

This creates an important distinction:

A test of the immune response is not necessarily the same thing as a test for the pathogen itself.

When Antibodies Don't Tell the Whole Story

Bell uses her husband's experience to illustrate the stakes.

Russ had likely been ill for years before his most significant symptoms emerged. By then, Bell says his immune system was dysregulated and his overall antibody levels were low.

His Lyme testing was negative, and his worsening cognitive symptoms ultimately led to an Alzheimer's diagnosis.

There is also another side to antibody testing.

A person may have antibodies because of a previous infection even when the original infection is no longer active. That can make it difficult to determine whether persistent symptoms are associated with an ongoing infection, an undiagnosed coinfection, immune dysregulation, or another process.

Bell's point is not that antibody testing has no value. It is that complex tick-borne illness may require more than one diagnostic tool.

Antigen Testing: Looking for Evidence of the Pathogen

The conversation then moves from indirect testing to direct detection.

One method is antigen testing.

Rather than measuring the immune system's response, an antigen test searches for a component associated with the pathogen itself.

Bell discusses Galaxy's work with a urine-based Lyme disease antigen approach designed to capture and concentrate a protein shed by Borrelia.

Why urine?

Bell explains that Lyme-causing Borrelia may not remain abundantly present in the bloodstream. A pathogen-derived protein, however, may be filtered through the kidneys and become detectable in urine.

Galaxy continues to work on direct-detection approaches to Lyme disease testing as it pursues broader clinical adoption and regulatory pathways.

PCR Testing: Searching for Pathogen DNA

Another form of direct detection is PCR testing.

PCR looks for genetic material from the pathogen rather than relying on the patient's antibody response.

Galaxy uses PCR-based approaches for pathogens including:

• Borrelia
• Bartonella
• Babesia

But direct detection presents its own challenge.

These organisms may occur at extremely low levels in a sample.

A patient can be infected while very little pathogen DNA happens to be circulating in the particular blood sample collected that day.

That is where digital PCR, or dPCR, becomes especially interesting.

The Three B's: Borrelia, Bartonella & Babesia

Bell introduces Galaxy's approach to what Tick Boot Camp often calls the Three B's:

Borrelia. Bartonella. Babesia.

As patient and clinician awareness of tick-borne illness has evolved, these three pathogens have become increasingly important to the conversation around complex cases.

Galaxy's BBB Direct Detect digital PCR testing is designed to directly detect DNA from Borrelia, Bartonella, and Babesia.

Unlike an antibody test asking whether the immune system has responded to a pathogen, direct PCR testing asks a different question:

Can we find genetic evidence of the organism itself?

How Digital PCR Searches for Low-Abundance Pathogens

Bell gives a simple analogy for understanding digital PCR.

Imagine searching for a needle in a haystack.

Traditional PCR is trying to identify a tiny amount of pathogen DNA — the needle — among an enormous amount of human genetic material — the haystack.

Digital PCR effectively divides that haystack into thousands of much smaller piles and examines them individually.

That partitioning can make it easier to detect extremely small amounts of genetic material.

Galaxy also uses a culture-enrichment step for Bartonella. The blood sample is placed in an environment designed to encourage Bartonella growth before PCR analysis, increasing the amount of target material available for detection.

Learn more about Galaxy Diagnostics' direct-detection technology and its approaches to Borrelia, Bartonella, and Babesia testing.

Why Are We Seeing So Many Coinfections?

Tick Boot Camp and Bell also discuss an observation that has become increasingly common in patient interviews: many people with complex chronic tick-borne illness aren't reporting only Lyme disease.

Instead, patients frequently describe combinations involving the Three B's and other infections.

Why?

Bell says several factors may contribute.

Diagnostic technology has improved. Clinicians have become more aware of coinfections. Ecological research indicates ticks can carry multiple pathogens.

But Bell raises another important possibility: patients carrying multiple pathogens may also be among those who become the sickest and therefore are disproportionately represented within chronic illness communities.

That distinction matters.

Observing many coinfections among severely ill patients doesn't necessarily mean every tick-borne disease patient has the same microbial picture.

Bartonella, the Immune System & the Tipping Point

Bell discusses Bartonella as an example of the complexity surrounding infection and illness.

Exposure may be more common than many people realize, and Bartonella has multiple potential vectors and reservoirs.

Bell describes a hypothesis in which some people may harbor an infection while their immune system keeps it under control.

Then another infection, environmental exposure, significant stressor, or other immune-disrupting event may alter that balance.

A person who had previously remained relatively healthy may cross what Bell describes as a tipping point and begin experiencing significant illness.

This raises questions researchers are still working to answer.

Were multiple infections transmitted simultaneously?

Did they occur through separate exposures?

Was one infection already present before another destabilized the immune system?

Bell emphasizes that the answer may differ from patient to patient.

Emerging Questions About Babesia

Some of the most intriguing discussion in this interview involves Babesia.

Bell explains that research associated with the North Carolina State University team has identified Babesia species in complex patients beyond the organisms traditionally emphasized in U.S. human babesiosis.

She specifically discusses findings involving Babesia odocoilei and Babesia divergens-like organisms and contrasts those findings with expectations surrounding Babesia microti and Babesia duncani.

Bell also discusses the possibility of low-level parasitemia — infections involving pathogen levels that may be much lower than the classic severe presentation clinicians associate with babesiosis.

These emerging observations raise important research questions about Babesia species, their prevalence, their role in human disease, and whether existing diagnostic assumptions capture the full picture.

Bell is careful in the interview to distinguish between what Galaxy's current assay detects and what researchers may suspect based on sequencing and related scientific work.

Nicole Bell's Personal Mission

Bell's work in tick-borne disease diagnostics grew out of an experience no family wants to have.

Her husband, Russ, developed neurological and psychiatric symptoms, including cognitive problems, anxiety and hallucinations. Despite Bell specifically requesting Lyme disease testing early in his illness, his initial test was negative and his diagnostic journey eventually led to an Alzheimer's disease diagnosis.

Bell later documented her family's experience in her memoir, What Lurks in the Woods.

Today, she brings her engineering background and personal experience together in an effort to improve the diagnostic tools available to clinicians and patients.

From MIT & Duke to Galaxy Diagnostics

Nicole Bell is CEO of Galaxy Diagnostics and an engineer with extensive experience in medical devices and diagnostics.

She earned bachelor's and master's degrees in Materials Science and Engineering from MIT and a master's degree in Biomedical Engineering from Duke University. Before joining Galaxy, she worked in technology and medical-device development, including leadership roles involving diagnostic platforms and FDA submissions.

Bell became CEO of Galaxy Diagnostics in 2024, bringing together her professional background in engineering and diagnostics with the lessons learned through her husband's illness.

The State of Lyme Disease Research

Bell is also the primary author of The State of Lyme Disease Research in the United States for the Center for Lyme Action.

The paper examines gaps in Lyme disease research and outlines recommendations involving fundamental science, diagnostics, prevention, treatment, and research infrastructure.

In this interview, Bell references one particularly important issue explored in that work: delays in Lyme disease diagnosis and treatment are associated with a greater risk of patients experiencing persistent symptoms.

Better testing isn't simply about producing a more sophisticated laboratory report.

It's about helping clinicians get patients appropriate answers earlier.

Key Topics in This Episode

Lyme disease testing, Lyme diagnostics, Nicole Bell, Galaxy Diagnostics, Borrelia testing, Bartonella testing, Babesia testing, Three B's, BBB Direct Detect, digital PCR, dPCR, PCR testing, antibody testing, antigen testing, direct detection, indirect testing, stealth pathogens, Lyme disease antibodies, coinfections, polymicrobial tick-borne disease, low-abundance infections, Bartonella culture enrichment, Babesia microti, Babesia duncani, Babesia odocoilei, Babesia divergens, chronic Lyme disease, diagnostic delays, and tick-borne disease research.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations — shorter, focused, and surrounded by the activity of one of the world's major gatherings of Lyme and tick-borne disease clinicians, researchers, advocates, and innovators.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Hear more conversations with Lyme disease doctors and healthcare professionals about testing, diagnosis, treatment, and complex tick-borne illness.

Explore the Tick Boot Camp Podcast for interviews with patients, doctors, researchers, advocates, and innovators working to improve understanding of Lyme disease and help people move toward recovery.

LIVE from ILADS: Tick Boot Camp reconnects with Dr. Alexis Chesney, MS, ND, LAc for a focused conversation about babesiosis, Lyme disease, coinfections, diagnostic challenges, herbal medicine, recovery, rehabilitation, and what it means to treat the whole person rather than a single infection.

Dr. Chesney is a naturopathic physician and acupuncturist specializing in Lyme disease and other tick-borne illnesses. In this short-form conference interview, she explains why Babesia deserves more attention, how the clinical picture of tick-borne disease has become increasingly complex, and why successful treatment often requires much more than simply targeting microbes.

This interview was recorded live at the ILADS conference, so you may hear some of the energy and background activity of the event throughout the conversation.

Why Babesia Deserves More Attention

One of the main focuses of this conversation is babesiosis, a tick-borne infection caused by Babesia parasites.

Dr. Chesney explains that Babesia differs fundamentally from Lyme disease because the organism infects red blood cells. That difference affects both how the disease presents and how practitioners approach diagnosis and treatment.

Symptoms discussed in the interview include:

• Night sweats
• Air hunger
• Heart palpitations
• Fatigue
• Symptoms related to red blood cell involvement
• Persistent symptoms that remain after other infections have been addressed

Dr. Chesney emphasizes that a patient may improve from treatment directed at Borrelia while continuing to experience symptoms that point toward Babesia or another coinfection.

A Naturopathic Approach to Babesiosis

Dr. Chesney recently published The Diagnosis and Treatment of Babesiosis: A Naturopathic Approach to an Emerging Tick-Borne Disease.

Her article examines babesiosis from an integrative perspective, including epidemiology, clinical presentation, testing, pharmaceutical treatment, botanical medicine, and supportive naturopathic care.

In the interview, she discusses combining conventional and natural approaches rather than viewing them as mutually exclusive.

She describes using pharmaceutical therapies such as atovaquone and azithromycin when appropriate, followed by or combined with botanical strategies intended to address Babesia and support the patient's overall physiology.

Herbal Medicine & Supporting the Body

Dr. Chesney's approach goes beyond simply trying to eliminate an organism.

She discusses botanical medicine that may help address Babesia while also supporting the red blood cells and other systems affected by infection.

Her broader point is that treatment should consider both sides of the equation:

How do we reduce the microbial burden, and how do we help the body function better while we do it?

That whole-person approach is a central theme of naturopathic and integrative medicine.

Dr. Chesney's published work discusses botanical options including Japanese knotweed, cryptolepis, Artemisia annua, Chinese skullcap, Bidens pilosa, and Sida acuta, along with supportive strategies intended to address detoxification, immune function, and tissue protection.

Lyme Disease Is Increasingly a Polymicrobial Picture

Tick Boot Camp and Dr. Chesney also discuss how the clinical picture of Lyme disease has changed.

Increasingly, patients are not presenting with only Borrelia.

Instead, clinicians may encounter combinations involving:

• Lyme disease
• Babesiosis
• Bartonellosis
• Anaplasmosis
• Other tick-borne infections
• Reactivated or latent viruses
• Long COVID
• Immune dysfunction
• Overlapping chronic conditions

Dr. Chesney explains that these overlapping illnesses can produce similar symptoms, making careful clinical investigation especially important.

This is one reason experienced practitioners matter.

Testing can be useful, but the clinical picture remains an essential part of diagnosis and treatment planning.

Babesia Testing & the Clinical Picture

The conversation also explores the limitations of testing.

Dr. Chesney discusses using different diagnostic tools depending on the situation, including PCR, antibody testing, and Babesia FISH testing.

She emphasizes that laboratory results must be interpreted alongside symptoms, history, exposure, and the patient's response to treatment.

For example, a patient who continues to experience night sweats, air hunger, or palpitations after other aspects of treatment may warrant further evaluation for Babesia even when earlier testing has been inconclusive.

The message is not that patients should diagnose themselves.

It is the opposite: complex tick-borne illness often requires an experienced clinician who understands both the strengths and limitations of available diagnostics.

Why Patients Shouldn't Have to Become Their Own Doctors

One important part of the interview addresses a common experience in the Lyme community: patients often become extremely educated because they have struggled to find appropriate care.

That education can be empowering, but Dr. Chesney and Tick Boot Camp emphasize that patients should not be forced to manage complex infectious disease on their own.

Lyme disease and associated infections can involve multiple pathogens, immune dysfunction, overlapping symptoms, changing clinical presentations, and imperfect diagnostic tools.

Finding an experienced practitioner who understands these complexities can make a tremendous difference.

Dr. Chesney describes spending substantial time gathering patient history and looking for patterns rather than simply treating laboratory values.

A Whole-Person Recovery Framework

The conversation then moves beyond diagnosis and antimicrobial treatment into the broader recovery process.

Tick Boot Camp shares its PARM framework:

• Prehabilitation
• Assist
• Rehabilitation
• Maintenance

Dr. Chesney discusses how this framework aligns with what she sees clinically.

Not every patient is physically ready to begin aggressive antimicrobial therapy immediately.

Some patients may first need support involving:

• Nutrition
• Sleep
• Movement
• Stress reduction
• Immune support
• Detoxification pathways
• Liver support
• Lymphatic support
• Kidney support

For people who have been chronically ill for years, strengthening the body before more intensive treatment can be an important part of the process.

Rehabilitation After Chronic Lyme Disease

Getting through antimicrobial treatment does not necessarily mean recovery is finished.

Dr. Chesney discusses the importance of rehabilitation and reconditioning, especially for patients who have spent months or years significantly limited by illness.

Physical therapy can become an important tool for patients who have lost strength, endurance, mobility, or confidence in their bodies.

The conversation highlights a reality that many recovering patients discover:

There can be a period between treating illness and fully returning to life.

That phase deserves attention too.

Maintenance, Prevention & Avoiding Reinfection

Recovery also includes learning how to protect the progress that has been made.

Dr. Chesney has made tick-bite prevention a major focus of her work after repeatedly seeing patients recover from Lyme disease only to experience another tick bite and a new infection.

Her book, Preventing Lyme & Other Tick-Borne Diseases, is designed as a practical field guide covering tick identification, tick-bite prevention, landscape strategies, what to do after a bite, and information about common tick-borne diseases.

The goal is not to create fear around the outdoors.

It is to help people enjoy life while understanding how to reduce risk.

Lifestyle, Resilience & Long-Term Health

The final portion of the conversation expands even further.

Dr. Chesney and Tick Boot Camp discuss how recovery from chronic illness can become an opportunity to reevaluate the foundations of health.

That may include:

• Better nutrition
• Consistent sleep
• Exercise and movement
• Stress management
• Reducing unnecessary exposures
• Rebuilding strength
• Supporting emotional health
• Supporting spiritual health
• Developing sustainable habits

For many people, recovering from Lyme disease is not simply about returning to exactly who they were before becoming sick.

It can become a process of learning the body more deeply and building a healthier life moving forward.

About Dr. Alexis Chesney

Dr. Alexis Chesney, MS, ND, LAc is a naturopathic physician, acupuncturist, author, and educator specializing in Lyme disease and other tick-borne illnesses.

She trained with Dr. Richard Horowitz and has spent years treating patients with Lyme disease, babesiosis, Bartonella, and other complex vector-borne conditions.

Dr. Chesney has also served in leadership roles with the International Lyme and Associated Diseases Society, including work with its Naturopathic Medicine Committee and physician training programs.

She is the author of Preventing Lyme & Other Tick-Borne Diseases, a practical guide to tick identification, prevention, tick bites, and tick-borne illness.

Read Dr. Chesney's article The Diagnosis and Treatment of Babesiosis: A Naturopathic Approach to an Emerging Tick-Borne Disease for a deeper look at the subject discussed in this episode.

Key Topics in This Episode

Lyme disease, babesiosis, Babesia, Bartonella, tick-borne disease, coinfections, Dr. Alexis Chesney, naturopathic medicine, herbal medicine, Babesia treatment, Babesia testing, Babesia FISH, atovaquone, azithromycin, botanical medicine, immune support, detoxification, chronic Lyme disease, polymicrobial infection, tick prevention, Lyme disease prevention, physical rehabilitation, whole-person medicine, integrative medicine, functional medicine, Lyme recovery, and tick-bite prevention.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations — shorter, focused, and surrounded by the activity of one of the world's major gatherings of Lyme and tick-borne disease clinicians and researchers.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Hear more conversations with Lyme disease doctors and healthcare professionals about testing, treatment, recovery, and complex tick-borne illness.

Explore the Tick Boot Camp Podcast for interviews with patients, doctors, researchers, advocates, and others working to improve understanding of Lyme disease and help people move toward recovery.

Read transcript

LIVE from ILADS: Tick Boot Camp sits down with David W. Kazarian, RPh, pharmacist and founder of Infuserve America, for a focused conversation recorded in person at the ILADS Annual Scientific Conference.

In this short-form conference interview, Kazarian explores how compounding pharmacy can give practitioners additional options for Lyme disease and tick-borne illness patients dealing with medication sensitivities, reactions to fillers and excipients, alpha-gal syndrome, absorption challenges, and other complexities. With decades of experience working with the Lyme community, he explains why changing the formulation of a medication — not just the active ingredient — can sometimes become an important part of individualized care.

This interview was recorded live on the conference floor, so you may hear some of the energy and background activity of ILADS throughout the conversation.

What Is Compounding Pharmacy?

Kazarian describes compounding as both a science and an art.

Commercial medications generally come with predetermined doses, capsules, fillers, dyes, and delivery methods. Compounding gives a pharmacist, working with a prescribing practitioner, the ability to customize certain aspects of a medication for an individual patient's needs.

Depending on the prescription and patient, that can include changes to:

• Medication strength or dosage
• Fillers and excipients
• Capsule materials
• Carrier oils
• Route of administration
• Release characteristics
• Topical or oral formulations
• Sterile or non-sterile preparations

For people navigating complex Lyme disease and other tick-borne illnesses, those details may become particularly important when medication sensitivities develop or change over time.

Excipients, Fillers & Medication Sensitivities

One of the most important topics in this conversation is excipients — ingredients in a medication other than its primary active pharmaceutical ingredient.

Kazarian discusses patients who may have difficulty tolerating ingredients such as dyes, magnesium stearate, titanium dioxide, gelatin capsules, certain carrier oils, animal-derived ingredients, and other fillers.

For a highly sensitive patient, the question may therefore extend beyond "Can I tolerate this medication?" to "Can I tolerate this particular formulation of the medication?"

A compounding pharmacist may be able to work with the prescribing practitioner to explore alternative formulations when appropriate.

Alpha-Gal Syndrome & Animal-Derived Ingredients

The conversation also explores alpha-gal syndrome, a tick-associated allergy that can make mammalian-derived ingredients problematic for some patients.

Kazarian uses capsules as one example. Traditional gelatin capsules may contain animal-derived materials, while alternative formulations can use vegetable-based capsules.

He also discusses carrier oils and other excipients, including MCT, almond, and olive oils, illustrating how even the inactive components of a medication may need to be considered for an individual patient.

For people experiencing unexplained new sensitivities, the discussion provides an important takeaway: the active medication isn't necessarily the only ingredient worth investigating.

Why Can Medication Tolerance Change?

Many people living with Lyme disease and other complex chronic illnesses report becoming sensitive to foods, supplements, medications, or other substances they previously tolerated.

Kazarian discusses immune dysfunction as one possible piece of this complicated picture and explains why changing medication tolerance deserves investigation.

This is especially relevant for Lyme patients who experience symptoms that change, migrate, or seem disconnected from one another.

Rather than automatically dismissing a new reaction because a medication was previously tolerated, the episode explores why practitioners may need to look more closely at both the patient's changing health and the medication's ingredients.

Lyme Disease, Coinfections & Complex Illness

Kazarian prefers looking broadly at tick-borne illness rather than focusing exclusively on Borrelia.

The conversation discusses the polymicrobial nature of tick-borne disease, including coinfections and the potential involvement of immune and inflammatory processes.

That complexity leads to one of the central themes of the interview:

There isn't necessarily one recipe for every patient.

Patients can present differently, tolerate treatments differently, and require different approaches as their health changes.

Carrier Oils, Microemulsions & Medication Absorption

Kazarian also explains the role of carrier oils and what he describes as microemulsions.

Depending on the medication and formulation, these techniques may be used to influence delivery, absorption, or gastrointestinal tolerance.

He describes the concept simply as surrounding a drug with fat and explains why understanding the chemistry of both the active medication and its delivery system can be an important part of pharmaceutical compounding.

Thyroid Medication as an Example of Precision Medicine

Kazarian uses thyroid medication to demonstrate how individualized investigation and compounding can work together.

The discussion touches on TSH, T3 and T4, free T3 and free T4, reverse T3, iodine, ferritin, medication ingredients, animal-derived ingredients, bioidentical formulations, and sustained-release compounding.

The thyroid discussion serves as a larger example of the questions that can arise with a complex patient: Is the medication itself the problem? Could an inactive ingredient be contributing? Is the formulation appropriate? Is something else in the patient's clinical picture being overlooked?

These are questions for the patient's healthcare team to investigate rather than assuming there is a one-size-fits-all answer.

Precision Medicine & the Pharmacist's Role

A major theme throughout the interview is precision medicine.

Kazarian describes the compounding pharmacist as another resource for the treating practitioner when conventional medication options create challenges.

Depending on the individual situation, a pharmacist and prescribing clinician may consider a different formulation, excipient, dosage form, route of administration, release method, or active ingredient when clinically appropriate.

Kazarian is also clear about something important: the pharmacist does not replace the patient's practitioner.

Instead, the pharmacist can become another member of the team, helping the practitioner explore additional options when they encounter a medication-related obstacle.

Sterile & Non-Sterile Compounding

Infuserve America provides both sterile and non-sterile compounding.

Non-sterile compounding can include customized capsules, tablets, topical preparations, and other formulations. Sterile compounding includes preparations requiring specialized sterile environments and procedures, including certain injectable and intravenous medications.

With Infuserve America's background in home infusion, Kazarian also discusses prescribed IV therapies, PICC lines and ports, intravenous medications, nutritional IV preparations, Myers' cocktails, and high-dose vitamin C.

Giving Practitioners More Tools

Perhaps the most important message from Kazarian is that compounding isn't about replacing the doctor or allowing patients to prescribe for themselves.

It's about giving practitioners more tools.

Kazarian describes receiving calls from practitioners who have reached a difficult point with a patient and want to know what other options may be available.

Could an excipient be changed? Could another route of administration work? Could the medication be prepared differently?

Those conversations between practitioners and pharmacists can create possibilities that aren't available with an off-the-shelf medication.

Patients interested in exploring compounding with their healthcare provider can learn more about working with Infuserve America.

About David W. Kazarian, RPh

David W. Kazarian, RPh is a registered pharmacist and founder of Infuserve America with decades of experience in pharmacy, home infusion, sterile and non-sterile compounding, and working with the Lyme disease community.

His approach emphasizes collaboration between the pharmacist, practitioner, and patient to identify individualized solutions when conventional medication formulations present challenges.

Key Topics in This Episode

Lyme disease, tick-borne illness, compounding pharmacy, David Kazarian, Infuserve America, medication sensitivities, medication intolerance, excipients, fillers, alpha-gal syndrome, precision medicine, personalized medicine, immune dysfunction, carrier oils, microemulsions, thyroid medication, medication absorption, sterile compounding, home infusion, IV therapy, and practitioner-pharmacist collaboration.

About This LIVE from ILADS Interview

This short-form interview was recorded in person at the 2025 International Lyme and Associated Diseases Society (ILADS) Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Tick Boot Camp was onsite interviewing doctors, researchers, healthcare professionals, advocates, and innovators working across Lyme disease and vector-borne illness.

Explore all Tick Boot Camp LIVE from ILADS interviews to hear more conversations from the conference.

More from Tick Boot Camp

Hear more conversations with Lyme disease doctors and healthcare professionals about testing, treatment, complex chronic illness, and emerging approaches to tick-borne disease.

Explore the Tick Boot Camp Podcast for interviews with patients, doctors, researchers, advocates, and other members of the Lyme disease and tick-borne illness community.

What happens when a conventionally trained physician watches someone he loves struggle with years of unexplained, multisystem illness—and eventually discovers that Lyme disease and Bartonella may have been part of the picture all along?

In this episode of the Tick Boot Camp Podcast, hosts Matt Sabatello and Rich Johannesen sit down with Raphael “Tito” Balbino, MD, a physician trained in Family Medicine and Geriatrics who now leads Mandarin Wellness Center, a functional and integrative medicine practice in Jacksonville, Florida.

Dr. Balbino’s path into Lyme disease and complex chronic illness was not planned.

Born and raised in Rio de Janeiro, Brazil, Dr. Balbino moved to the United States as a teenager. His fascination with anatomy eventually led him to study human biology at UC San Diego, attend medical school at the University of Illinois Chicago, and complete postgraduate training in Family Medicine and Geriatric Medicine in North Carolina.

But while his medical career was developing, something much more personal was happening at home.

When His Wife’s Illness Changed Everything

Throughout medical school and residency, Dr. Balbino watched his wife experience a changing collection of symptoms including headaches, brain fog, sleep problems, gastrointestinal issues, anxiety, fatigue, and gallbladder attacks.

The symptoms appeared across different systems and at different times. Yet despite interacting with the conventional medical system, no one seemed able to step back and identify a unifying explanation.

Dr. Balbino describes watching his wife being treated as a collection of individual problems rather than as one interconnected patient.

Eventually, she began doing her own research and exploring nutrition, gut health, anti-inflammatory strategies, and functional medicine. Dr. Balbino credits that work—particularly addressing the gut and inflammation—with helping her become substantially more functional.

Years later, Dr. Shirley Hartman helped them investigate another possibility. Testing reportedly identified evidence consistent with multiple Borrelia strains as well as Bartonella, providing a new framework through which they could reconsider decades of seemingly disconnected symptoms.

That experience would ultimately transform not only his wife’s health journey, but Dr. Balbino’s approach to medicine.

Why Lyme Disease Can Be So Difficult to Recognize

Dr. Balbino reflects on how little emphasis tick-borne disease received during his conventional medical education.

He remembers learning the classic associations—tick exposure, characteristic rashes, acute presentations—but says there was little emphasis on the epidemiology or the complicated, multisystem presentations he would later encounter in practice.

During residency, he treated a patient with an acute presentation of Rocky Mountain spotted fever, including a characteristic rash and treatment with doxycycline. Looking back, he contrasts cases like that with patients whose symptoms develop gradually, migrate, fluctuate, or involve multiple systems.

Today, Lyme-related referrals are the largest referral source at Mandarin Wellness Center, where Dr. Balbino sees patients ranging from those who have no idea why they are chronically ill to experienced Lyme patients searching for additional options.

For more conversations with physicians working in Lyme and tick-borne disease, explore the Tick Boot Camp Doctors Podcast Directory.

Lyme Disease Beyond the Northeastern United States

The conversation also explores an important misconception: that Lyme disease is primarily a Northeastern U.S. problem.

Dr. Balbino discusses his Brazilian background, his wife’s childhood exposure to rural environments in Brazil, and how learning about Lyme cases in Brazil expanded his understanding of the global nature of tick-borne illness.

He specifically references a previous Tick Boot Camp interview about Lyme disease in Brazil that helped change his perspective.

Gut Health, Inflammation, and the Nervous System

One of the most personal portions of the interview involves Dr. Balbino’s description of his wife’s experience with years of intrusive anxiety and worrisome thoughts.

He explains that counseling and other approaches did not seem to resolve those symptoms, but that significant improvement followed her work on gut health and an anti-inflammatory diet.

The conversation expands into the complex relationship between:

• gut health
• inflammation
• immune regulation
• autoimmunity
• mast cell activation
• the nervous system
• chronic stress
• neurological symptoms

More recently, Dr. Balbino says his wife has also made additional progress through nervous system training and regulation.

For listeners interested in this area, Tick Boot Camp has also explored nervous system regulation and neuroplasticity with Cathleen King of Primal Trust and Lindsay Mitchell of Vital-Side.

Building an Individualized Lyme Disease Treatment Strategy

Dr. Balbino emphasizes that patients arrive at his practice at very different stages and therefore may require very different approaches.

For acute presentations, he discusses situations where antibiotics can play an important role. For chronic and complex patients, his approach may also incorporate herbal protocols, detoxification support, organ support, nutrition, vitamins, minerals, and other functional medicine strategies.

Rather than presenting one treatment as appropriate for everyone, the discussion highlights the need to understand the individual patient, their history, their tolerance for treatment, and the factors that may be keeping them stuck.

SOT / Q-REstrain for Lyme and Tick-Borne Infections

The conversation takes a deeper dive into Supportive Oligonucleotide Therapy (SOT), which Dr. Balbino discusses under the newer name Q-REstrain.

He explains why his practice became interested in the therapy, including exposure through ILADS education and conversations with patients and families who reported significant improvements.

Matt and Rich ask Dr. Balbino to explain the therapy, how it differs from antibiotics and herbal approaches, and where he believes it may fit within a broader treatment strategy.

Listeners interested in another physician’s perspective can also hear Tick Boot Camp’s discussion of SOT with Dr. Hank Sloan.

Frequency Specific Microcurrent (FSM)

Another major portion of the episode explores Frequency Specific Microcurrent (FSM).

Dr. Balbino explains the concept of pairing specific frequencies with targeted tissues or physiological processes. He discusses using customized programs intended to address issues such as inflammation, pain, joints, ligaments, adhesions, and other patient-specific concerns.

He contrasts FSM with technologies such as TENS units and Rife-type devices and describes how patients may use programmed frequency combinations over a set period of time.

Dr. Balbino also shares patient experiences from his practice, including a nurse with longstanding pain and arthritis who incorporated FSM into her care.

TruDOSE Platelet IV Therapy and Regenerative Medicine

The conversation also explores TruDOSE Platelet IV Therapy, a regenerative therapy Dr. Balbino has incorporated into his practice.

Dr. Balbino explains that the treatment uses a patient’s own blood, which is processed to concentrate platelets before the platelets are administered intravenously. He discusses platelets not simply in the context of blood clotting, but as carriers of growth factors and signaling molecules involved in inflammation, repair, and healing.

One aspect that particularly interests Dr. Balbino is the attempt to standardize the platelet dose. Rather than simply preparing platelet-rich plasma without knowing the exact concentration being delivered, he describes the TruDOSE process as measuring platelet levels before and after processing to provide a more individualized dose.

Dr. Balbino shares several memorable patient experiences that have shaped his interest in regenerative medicine, including patients dealing with traumatic brain injury, neurological dysfunction, chronic pain, PTSD-like symptoms, and vision problems.

One case involved a patient with longstanding neurological injuries who reported unexpected changes after treatment, including improvements in areas that had not been the original focus of therapy. Another patient with a history of traumatic brain injury and significant visual impairment reported improvements in vision following treatment.

These individual patient experiences have challenged some of Dr. Balbino’s previous assumptions about what may be possible for people dealing with longstanding dysfunction.

For a physician who originally trained in geriatrics—where much of medicine can involve managing decline—seeing patients report improvements in functions they believed were permanently lost has helped reshape the way he thinks about aging, chronic illness, repair, and healing.

From Conventional Geriatrics to Complex Chronic Illness

Dr. Balbino’s professional transformation is one of the central themes of this episode.

His wife’s health journey first opened his mind to approaches outside his conventional training. Later, his relationship with Dr. Shirley Hartman exposed him more deeply to Lyme disease, functional medicine, and complex chronic illness.

Dr. Hartman had practiced for decades before preparing for retirement, and Dr. Balbino eventually stepped into the practice she had built.

Following her passing, he describes initially feeling the enormous weight of continuing the work of a physician whose patients would tell him that she had “saved” their lives.

Over time, that pressure evolved into something different: a commitment to continue serving the community and carrying forward what he learned from her.

A Physician’s Mission to Serve

Near the end of the interview, Dr. Balbino explains how working with chronically ill patients has fundamentally changed his relationship with medicine.

Patients with Lyme disease and complex chronic illness often arrive after years of suffering, failed treatments, unanswered questions, and feeling unheard.

That experience has created what Dr. Balbino describes as almost a family environment within his practice—a community connected by a shared understanding of suffering.

His philosophy today is simple: his job is to serve the person sitting in front of him.

And if he is not the right person to help them, he wants to help connect them with someone who may be.

For patients who have spent years searching for answers, that willingness to listen, remain curious, and continue looking for options can itself be powerful.

Topics Discussed

• Dr. Raphael “Tito” Balbino’s journey from Brazil to the United States
• Medical school and training in Family Medicine and Geriatrics
• His transition from conventional medicine to functional and integrative care
• His wife’s decades-long chronic illness journey
• Lyme disease and Bartonella
• Migrating and multisystem symptoms
• Why Lyme disease can be missed in conventional medical settings
• Lyme disease and tick exposure in Brazil
• Gut health and the immune system
• Anti-inflammatory nutrition
• Intrusive thoughts, anxiety, and inflammation
• Nervous system regulation
• Mast cell activation and immune dysregulation
• Antibiotics versus herbal Lyme protocols
• Detoxification and organ support
• Supportive Oligonucleotide Therapy (SOT)
• Q-REstrain
• Frequency Specific Microcurrent (FSM)
• Chronic pain and inflammation
• TruDOSE Platelet IV Therapy
• Platelets, growth factors, and regenerative medicine
• Systemic inflammation and tissue repair
• Traumatic brain injury and neurological symptoms
• Vision changes discussed in patient experiences
• Dr. Shirley Hartman’s influence and legacy
• Physician burnout and caring for complex patients
• Faith, service, purpose, and healing
• Why individualized care matters in chronic Lyme disease

Could Lyme disease and other chronic inflammatory triggers play a role in Alzheimer’s disease—and could addressing those underlying factors change measurable Alzheimer’s biomarkers?

In this episode of the Tick Boot Camp Podcast, Dr. Richard Horowitz returns to discuss a provocative new case report he published exploring the relationship between Lyme disease, neuroinflammation, Alzheimer’s disease biomarkers, and dapsone combination therapy.

The conversation centers on a patient with a long history of Lyme disease who had an elevated phosphorylated tau 217 (p-tau217) level, an increasingly important blood biomarker associated with Alzheimer’s disease. After completing a nine-week dapsone combination protocol, the patient’s p-tau217 declined by approximately 63% and returned to the normal range. Her amyloid-beta 42/40 ratio also moved in a favorable direction, and she reported improved cognitive clarity.

This case provides a new research question: Could infections, toxins, metabolic dysfunction, sleep disorders, microbiome disturbances, and other inflammatory drivers contribute to Alzheimer’s pathology in subsets of patients—and could identifying and addressing those drivers change the course of the disease?

Read the Published Study

Read Dr. Horowitz’s published study on SAGE Journals

The case report provides the scientific foundation for much of the discussion in this episode, including the changes in p-tau217 and amyloid biomarkers following treatment.

In This Episode, You’ll Learn Lyme Disease and Alzheimer’s Disease

Dr. Horowitz reviews research that has investigated possible relationships between Borrelia burgdorferi, neuroinflammation, amyloid, phosphorylated tau, and Alzheimer’s pathology.

Much of the earlier work examining spirochetes and Alzheimer’s disease involved brain tissue and postmortem studies. Dr. Horowitz explains why he believes studying Alzheimer’s biomarkers in living Lyme disease patients may provide another way to investigate these questions.

The discussion also explores an important distinction: finding an association between infection and Alzheimer’s pathology does not mean every case of Alzheimer’s disease is caused by Lyme disease.

The Patient Who Sparked the New Case Report

Dr. Horowitz describes a longtime patient with Lyme disease whose p-tau217 was substantially elevated despite her perception that her cognition was relatively good.

After the patient underwent his nine-week dapsone combination protocol, repeat testing showed a substantial reduction in p-tau217, bringing the biomarker into the normal range.

Dr. Horowitz also discusses changes in the patient’s amyloid-beta 42/40 ratio, rheumatoid factor, and subjective cognitive function.

The case led him to ask whether treatment directed at persistent infection and inflammation could influence biomarkers normally associated with Alzheimer’s disease.

What Is p-Tau217?

A major portion of the interview focuses on the emerging use of blood-based biomarkers for evaluating Alzheimer’s pathology.

Dr. Horowitz discusses four primary biomarkers:

• p-tau217 – phosphorylated tau 217
• p-tau181 – phosphorylated tau 181
• Amyloid-beta 42/40 ratio
• Neurofilament light chain (NfL)

He also discusses GFAP (glial fibrillary acidic protein) and the potential relevance of APOE genetics.

Dr. Horowitz describes p-tau217 as one of the most sensitive and specific currently available blood biomarkers associated with Alzheimer’s disease pathology.

Amyloid May Be More Than Just “Plaque”

Why does amyloid accumulate in the brain in the first place?

The episode explores the concept of amyloid-beta as an antimicrobial peptide and the hypothesis that amyloid production may, in some circumstances, be part of the brain’s response to biological threats.

Dr. Horowitz discusses research examining potential infectious and environmental contributors to amyloid production, including:

• Borrelia and other bacteria
• Viral infections
• Fungal organisms
• Other microbes
• Environmental toxins

The conversation then explores how a response that may initially be protective could potentially become harmful when amyloid accumulates and interferes with normal neuronal function.

Amyloid, Tau and Neurodegeneration

Dr. Horowitz breaks down two major features associated with Alzheimer’s disease.

Amyloid-beta plaques accumulate outside neurons and are associated with disrupted communication between brain cells.

Tau proteins normally help stabilize structures inside neurons. Abnormally phosphorylated tau can become associated with neuronal dysfunction and neurodegeneration.

The discussion also explores why some patients may have abnormal tau biomarkers without corresponding abnormalities in amyloid markers—and why much more research is needed to understand these patterns in people with chronic Lyme disease.

Dapsone Combination Therapy and Cognitive Symptoms

Dapsone has been a major focus of Dr. Horowitz’s research into persistent Lyme disease.

In this episode, he explains that his protocols involve combination therapy rather than dapsone alone and discusses his previous published work examining dapsone combination therapy in patients with persistent Lyme disease symptoms.

According to Dr. Horowitz, improvements in memory, concentration, cognition, and word-finding difficulties have repeatedly been among the most notable improvements reported in his patient cohorts.

He believes this observation deserves greater attention now that blood-based Alzheimer’s biomarkers make it possible to investigate biological changes alongside cognitive symptoms.

Dapsone, the Brain and the NLRP3 Inflammasome

The discussion goes beyond dapsone’s antimicrobial activity.

Dr. Horowitz explains his interest in the NLRP3 inflammasome, an inflammatory pathway implicated in neuroinflammation and studied in relation to Alzheimer’s disease.

He proposes that dapsone could potentially have more than one relevant effect—targeting certain microorganisms as part of combination therapy while also influencing inflammatory pathways.

This remains an area requiring further clinical investigation.

Alzheimer’s Disease May Have Multiple Drivers

One of the most important themes of the interview is that Alzheimer’s disease is unlikely to have a single universal cause.

Dr. Horowitz applies his 16-point MSIDS (Multiple Systemic Infectious Disease Syndrome) model to cognitive decline and Alzheimer’s disease.

Potential contributors discussed include:

• Lyme disease and other infections
• Mold and mycotoxin exposure
• Heavy metals and environmental toxins
• Chronic inflammation
• Insulin resistance and blood sugar dysregulation
• Sleep disorders and sleep apnea
• Gut microbiome dysfunction
• Nutritional deficiencies
• Mitochondrial dysfunction
• Cardiovascular and metabolic factors
• Other sources of systemic inflammation

Rather than focusing exclusively on amyloid or tau, Dr. Horowitz argues for investigating what may be driving those abnormalities in an individual patient.

Lyme Disease Is Not the Only Possible Infectious Trigger

The episode also examines the broader question of infection and neurodegeneration.

Dr. Horowitz discusses scientific literature investigating organisms and infections beyond Borrelia, including Chlamydia pneumoniae, Helicobacter pylori, Coxiella burnetii, herpesviruses, and other microbial exposures.

His central argument is not that every Alzheimer’s patient has an infection. Instead, he believes clinicians and researchers should investigate whether infectious, toxic, metabolic, environmental, and inflammatory factors may coexist and contribute differently from patient to patient.

The Challenge of Lyme Disease Testing

The conversation also addresses limitations surrounding Lyme disease diagnostics.

A negative standard Lyme disease test does not necessarily answer every clinical question surrounding prior exposure or persistent symptoms. The hosts and Dr. Horowitz discuss why testing methodology, timing, immune response, strain diversity, clinical history, and other factors may need to be considered when evaluating a complex patient.

Dr. Horowitz also explains how he combines laboratory findings with clinical history and his MSIDS framework when evaluating patients.

Why More Data Is Critical

A single case can generate a hypothesis. It cannot establish a treatment standard.

Dr. Horowitz repeatedly emphasizes the need for:

• Additional documented cases
• Standardized biomarker testing
• Long-term patient follow-up
• Larger patient cohorts
• Collaboration among Lyme-literate physicians and neurologists
• Shared research databases
• Multicenter studies
• Randomized controlled clinical trials

The episode explores the possibility of physicians systematically collecting Alzheimer’s biomarkers before and after treatment of specific MSIDS factors to determine which interventions, if any, consistently change those biomarkers.

That type of data could help researchers move beyond individual clinical observations toward testable conclusions.

Could Patient Data Accelerate Lyme and Alzheimer’s Research?

Matt and Dr. Horowitz discuss the potential for a secure research repository where physicians could contribute standardized patient data.

For example, researchers could track a patient’s infections, mold exposure, metabolic factors and other MSIDS variables alongside p-tau217, p-tau181, amyloid-beta 42/40 and NfL measurements.

Repeating those measurements after individual interventions could help researchers identify patterns that would otherwise take years to discover through isolated clinical practices.

Dr. Horowitz Is Developing an MSIDS App

Dr. Horowitz also shares a major project currently in development.

He says he is working with researchers from the University of California, Irvine on an application designed to translate his MSIDS framework into a digital tool.

The goal is for users to enter information based on the MSIDS questionnaire and other health data, allowing the software to help guide them through the framework.

Dr. Horowitz also discusses how a sufficiently large and secure database could eventually create opportunities for collecting real-world patient data and generating new research hypotheses.

Lifestyle, Metabolic Health and Brain Health

Not every potential driver discussed in this episode is infectious.

Dr. Horowitz highlights several established areas of brain-health research, including:

• Mediterranean/MIND-style dietary patterns
• Regular physical activity
• Healthy blood sugar and insulin regulation
• Cardiovascular health
• Adequate sleep
• Addressing sleep apnea
• Omega-3 fatty acids
• Nutritional status
• Gut and microbiome health

This reinforces one of the episode’s central messages: cognitive decline may result from multiple interacting biological pressures rather than one isolated mechanism.

Ending Chronic Illness

The discussion also previews Dr. Horowitz’s upcoming book, Ending Chronic Illness, scheduled for publication on October 13, 2026.

The book expands on his 16-point MSIDS model and explores how overlapping infectious, inflammatory, environmental, metabolic, immune, neurological, and lifestyle factors may contribute to chronic disease.

A separate Tick Boot Camp interview dedicated to the new book will be released this fall.

Learn More About Dr. Richard Horowitz

Dr. Richard Horowitz is one of the best-known physicians in the Lyme disease community and has spent decades treating patients with Lyme disease, tick-borne infections, and complex chronic illness.

Tick Boot Camp has interviewed Dr. Horowitz multiple times about Lyme disease, Babesia, Bartonella, dapsone combination therapy, MSIDS, chronic inflammation, and emerging research.

Visit Dr. Richard Horowitz’s Tick Boot Camp page for all of our interviews, articles, and resources

Additional Resources

Explore all Tick Boot Camp interviews and information

Key Topics

Richard Horowitz, MD; Lyme disease; Alzheimer’s disease; Alzheimer’s biomarkers; Lyme disease and Alzheimer’s; Lyme disease and dementia; cognitive decline; neuroinflammation; p-tau217; p-tau181; phosphorylated tau; amyloid beta; amyloid-beta 42/40 ratio; neurofilament light chain; NfL; GFAP; APOE4; Borrelia burgdorferi; chronic Lyme disease; persistent Lyme disease; dapsone; dapsone combination therapy; MSIDS; Multiple Systemic Infectious Disease Syndrome; biofilms; persister bacteria; brain inflammation; memory problems; brain fog; cognitive dysfunction; mold toxicity; mycotoxins; microbiome; infections and Alzheimer’s disease; tick-borne disease; Lyme disease research; dementia research; Alzheimer’s research.

What if some of the most powerful tools for controlling chronic bacterial infections are already living inside the human body?

In this episode of the Tick Boot Camp Podcast, hosts Matt Sabatello and Rich Johannesen sit down with Dr. David A. Jernigan, DNM, DC, founder of the Biologix Center for Optimum Health, for a deep exploration of Lyme disease, bacteriophages, chronic infection, biological medicine, and his development of Induced Native Phage Therapy (INPT).

Dr. Jernigan has worked with people experiencing Lyme disease and complex chronic illness since the 1990s. His journey into the Lyme world began unexpectedly when a mother and her twin sons came to his Kansas practice with Lyme disease. At a time when Lyme disease knowledge was far more limited, the experience pushed him into decades of clinical work, research, writing, and experimentation focused on understanding why some patients remain chronically ill.

Today, one of the central areas of his work is bacteriophages—viruses that infect bacteria—and a therapeutic model he calls Induced Native Phage Therapy.

What Are Bacteriophages?

Bacteriophages, commonly called phages, are viruses that infect bacteria.

They exist throughout nature and are also found in enormous numbers within the human body. Unlike broad-spectrum approaches that may affect many different microorganisms, phages can have highly specific relationships with particular bacteria.

During the interview, Dr. Jernigan explains the relationship between bacteria and bacteriophages and introduces listeners to the phageome—the vast community of phages living in and around the human microbiome.

He describes how certain phages can enter a lytic cycle, ultimately destroying their bacterial host, while others can exist in a more dormant or lysogenic relationship with bacteria before environmental conditions trigger a change in their behavior.

This bacterial-phage relationship forms the foundation for Dr. Jernigan's work with INPT.

What Is Induced Native Phage Therapy (INPT)?

One of the most important distinctions in this conversation is the difference between conventional phage therapy and Induced Native Phage Therapy.

Traditional phage therapy generally involves identifying phages capable of attacking a particular bacterium and introducing those phages into a patient.

Dr. Jernigan's approach is fundamentally different.

Rather than administering externally sourced bacteriophages, INPT is designed around the idea of influencing native phages that are already present within the body.

Dr. Jernigan describes his approach as using electromagnetic or bioresonance-based information intended to influence phages associated with targeted microorganisms and encourage a shift toward bacterial destruction. He explains that development of the process took approximately five years and grew out of his earlier work with bioresonance and biological medicine.

Matt and Rich push Dr. Jernigan throughout the conversation to explain exactly what he believes is happening biologically, how targeted phages are distinguished from the enormous number of phages within the body, and how this approach differs from simply attempting to kill microorganisms directly.

Why Phages Could Matter in Lyme Disease

The discussion then turns specifically to Borrelia burgdorferi, other Borrelia species, and Lyme disease.

Dr. Jernigan argues that bacteria and their associated phages have coexisted for an extraordinarily long time and that bacteria entering the human body may already exist within complex relationships with bacteriophages.

Instead of searching externally for a single phage capable of targeting Borrelia, his research asks a different question:

Can the phages already present within a patient or associated with a microorganism be influenced to help control that organism?

That question sits at the center of INPT.

The conversation also explores monovalent versus polyvalent phages, bacterial specificity, intracellular microorganisms, and the potential ability of phages to interact with bacteria residing in difficult-to-reach environments.

Lyme Disease Is More Than One Infection

This episode extends far beyond phage therapy.

Dr. Jernigan explains how his understanding of Lyme disease has evolved dramatically since he began treating patients in the 1990s.

Early in his career, much of the Lyme community was focused primarily on finding and killing Borrelia burgdorferi. Over time, he became increasingly convinced that chronic illness could not be adequately explained by one microorganism alone.

He describes what he calls Multi-Microbial Activation Syndrome, a model in which Lyme disease may occur alongside or contribute to changes involving numerous microorganisms and physiological systems.

The conversation explores:

• Borrelia burgdorferi and other Borrelia species
• Bartonella and Babesia
• Other tick-borne infections
• Mold and environmental exposures
• Microbial interactions
• Toxins
• Metabolic dysfunction
• Immune dysregulation
• Mast cell activation
• Inflammation
• Individual biological terrain

This leads to one of the central themes of the episode: two people can carry similar microorganisms yet experience dramatically different levels of illness.

Dr. Jernigan therefore argues that treating a diagnosis alone can miss the larger biological picture of the person experiencing the disease.

Treating the Infection vs. Repairing the Damage

Dr. Jernigan uses a memorable termite analogy to explain chronic Lyme disease.

If termites are discovered before they have caused significant structural damage, eliminating them may largely solve the problem.

But if termites have been damaging a house for years, killing the termites does not rebuild the house.

The same concept, he argues, may apply to chronic illness.

Reducing microbial burden may be important, but a person may still be dealing with neurological, metabolic, inflammatory, structural, immune, or other dysfunction that developed during years of illness.

That distinction becomes particularly important when evaluating whether a treatment has worked. A reduction in infection does not necessarily mean that years of physiological damage or dysregulation immediately disappear.

Why Every Lyme Patient May Require a Different Approach

Matt and Rich discuss Tick Boot Camp's view of Lyme disease as a polymicrobial, multisystemic, chronic infectious or post-infectious illness, and Dr. Jernigan explains why his clinical experience has led him toward a similarly individualized model.

Every patient enters illness with a different history, microbiome, microbial exposures, environmental exposures, physiology, and accumulated biological stress.

For that reason, Dr. Jernigan challenges what he describes as "cookbook" medicine—the idea that every patient carrying the same diagnosis should receive essentially the same protocol.

Instead, his model attempts to identify what is dysfunctional in the individual patient while simultaneously reducing infectious burden and supporting the body's ability to repair itself.

Phages, Biofilms, and Intracellular Bacteria

Another major portion of the interview explores two difficult problems in chronic infection: biofilms and intracellular bacteria.

Dr. Jernigan discusses research showing that certain bacteriophages can interact with or penetrate bacterial biofilms, potentially giving phage-based approaches characteristics that differ from conventional antimicrobial strategies.

The discussion also examines whether phages can reach bacteria residing inside cells.

These questions are particularly relevant to Lyme disease because persistence, bacterial morphology, biofilms, tissue environments, and intracellular localization are frequently discussed as possible contributors to treatment difficulty.

Dr. Jernigan explains why he believes native phages may be capable of reaching microorganisms in environments that can present challenges for other therapeutic approaches.

Herxheimer Reactions: Does Feeling Worse Mean Treatment Is Working?

The episode also challenges one of the most familiar ideas in the Lyme community:

Do patients have to feel worse before they feel better?

Many Lyme patients are familiar with the Jarisch-Herxheimer reaction, often shortened to "Herxing," in which symptoms can temporarily intensify during antimicrobial treatment.

Dr. Jernigan discusses his belief that effective treatment should not necessarily require significant suffering.

He connects this idea to his model of phage-mediated bacterial destruction and explains why he believes INPT may behave differently from therapies that produce large amounts of inflammatory bacterial debris.

Matt and Rich dig into this distinction and the potential relationship between microbial die-off, cytokines, inflammation, mast cells, and worsening symptoms.

MCAS, Immune Activation, and Treatment Sensitivity

The conversation also addresses why some people with chronic Lyme disease become extraordinarily sensitive to medications, supplements, foods, environmental exposures, and other treatments.

Dr. Jernigan discusses macrophages, inflammatory cytokines, histamine, mast cell degranulation, and mast cell activation syndrome (MCAS) as part of the larger chronic illness picture.

Rather than viewing these problems as completely separate diagnoses, he encourages looking for the biological processes that may be driving multiple downstream symptoms.

This reflects another recurring theme throughout the episode: identifying and addressing upstream contributors rather than continually treating individual symptoms in isolation.

Antibiotics, Resistance, and the Search for New Approaches

Matt, Rich, and Dr. Jernigan also have an extended discussion about antibiotics and antimicrobial resistance.

Dr. Jernigan is strongly critical of long-term reliance on antibiotics and argues that bacterial adaptation and antibiotic resistance make alternative antimicrobial strategies increasingly important.

The conversation examines doxycycline, broad-spectrum antibiotics, environmental antibiotic exposure, bacterial adaptation, and why phage research has regained scientific interest as antimicrobial resistance becomes an increasingly important global challenge.

Dr. Jernigan also makes an important distinction between his approach and conventional phage therapy, which itself is an active area of scientific research.

Dr. Jernigan's Published INPT Research

Dr. Jernigan discusses several publications related to his work, including his 2021 retrospective review of Induced Native Phage Therapy for Lyme disease and relapsing fever and subsequent work expanding the concept into treatment-resistant illnesses involving multiple microorganisms.

He intentionally made his peer-reviewed publications open access so patients, practitioners, and researchers could review the work without encountering a paywall.

During the interview, he also acknowledges the importance of additional independent research and the challenges involved in funding and validating emerging therapeutic approaches.

INPT remains an emerging and unconventional approach. The mechanisms and clinical claims discussed in this episode should therefore be understood as Dr. Jernigan's research, hypotheses, clinical observations, and interpretations rather than established standards of Lyme disease treatment.

From "Chasing Bugs" to Biological Medicine

Perhaps the most important evolution in Dr. Jernigan's career is his movement away from simply "chasing bugs."

His earliest Lyme work focused heavily on identifying and addressing microorganisms.

After decades of treating complex patients, his philosophy expanded toward simultaneously considering two questions:

What microorganisms are creating a burden, and what is preventing this particular person's body from returning to healthy function?

That means considering infections alongside neurological function, metabolism, immune regulation, inflammation, environmental exposures, structural problems, the microbiome, and other biological systems.

For patients who have spent years moving from treatment to treatment, that broader question may be one of the most valuable takeaways from this conversation.

Topics Discussed

• Dr. David Jernigan's introduction to Lyme disease in the 1990s
• Congenital and persistent Lyme disease
• Early Lyme disease testing
• Natural and biological medicine
• Borrelia burgdorferi
• Bartonella, Babesia, and other tick-borne infections
• Polymicrobial illness
• Multi-Microbial Activation Syndrome
• Bacteriophages and the human phageome
• How bacteriophages infect bacteria
• Lytic and lysogenic phage cycles
• Conventional phage therapy
• Induced Native Phage Therapy (INPT)
• Native versus externally administered phages
• Monovalent and polyvalent phages
• Bioresonance and electromagnetic signaling
• Phages and bacterial biofilms
• Intracellular bacteria
• Antibiotic resistance ( View Antibiotic Effectiveness Chart )
• Doxycycline and antimicrobial treatment
• Jarisch-Herxheimer reactions
• Cytokines and inflammation
• Macrophages and immune dysfunction
• MCAS and treatment sensitivity
• Mold and environmental illness
• Microbial terrain
• Personalized Lyme disease treatment
• Treating infection versus repairing physiological damage
• Biological and bioregulatory medicine
• Emerging research into phage-based therapies

About Dr. David Jernigan

Dr. David A. Jernigan, DNM, DC, is an author, researcher, clinician, and founder of the Biologix Center for Optimum Health in Franklin, Tennessee.

He has worked with people experiencing Lyme disease and complex chronic illness for decades and has written extensively about Lyme disease, biological medicine, natural approaches to chronic illness, bacteriophages, and related topics.

His more recent research has focused on Induced Native Phage Therapy, an approach designed to influence naturally occurring bacteriophages within the body rather than administering externally sourced phages.

Learn more about Dr. David Jernigan, INPT, his Lyme disease work, publications, and the Biologix Center.

Work With Dr. David Jernigan

Patients interested in learning more about Dr. Jernigan, the Biologix Center for Optimum Health, and opportunities to work with him can visit: Biologix Center for Optimum Health – Dr. David Jernigan

INPT Information for Doctors and Healthcare Providers

Healthcare professionals interested in learning more about Induced Native Phage Therapy or becoming an INPT provider can visit PhaGenCorp: PhaGenCorp – Induced Native Phage Therapy

Learn More About Lyme Disease

Explore more Tick Boot Camp conversations with physicians working with Lyme disease and complex tick-borne illness: Tick Boot Camp Doctors