Tick Boot Camp is a Lyme disease and tick-borne illness podcast featuring interviews with leading doctors, researchers, scientists, patients, advocates, and experts. Explore Lyme disease symptoms, testing, diagnosis, treatment, recovery, chronic Lyme disease, coinfections, PANS/PANDAS, MCAS, neurological symptoms, emerging research, and the latest advances in tick-borne disease care. Through expert education and powerful patient stories, Tick Boot Camp provides hope, validation, practical information, and a community for people navigating Lyme disease and complex chronic illness.
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Données mises à jour le 08/11/2026
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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.
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 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.
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:
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.
Episode 622: 12 Steps to Healing from Chronic Lyme Disease – Dr. Chris Winfrey on Faith, Trauma & Community | LIVE from ILADS
Saison 1 · Épisode 622
vendredi 6 novembre 2026 • Durée 25:51
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
A Tick Boot Camp Fan Favorite Returns
How Dr. Winfrey's Grandmother Shaped His Understanding of Faith
What Addiction Recovery Taught Dr. Winfrey About Chronic Illness
Fight-or-Flight vs. Rest-and-Digest: Understanding the Nervous System
Dr. Chris Winfrey's 12 Steps for Chronic Illness
Step 1: Acceptance
Step 2: Finding Meaning and Purpose
Step 3: Surrender
Step 4: Self-Reflection
Step 5: Sharing the Struggle
Step 6: Willingness to Change
Step 7: Self-Compassion and Grace
Step 8: Healing Relationships
Step 9: Making Amends and Setting Boundaries
Step 10: Daily Check-Ins
Step 11: Mind, Body, and Spirit Connection
Step 12: Service and Community
How Lyme Disease May Affect Identity and the Brain's Default Mode Network
Why Community Matters in Chronic Illness Recovery
Faith, Spirituality, and the Chronic Illness Journey
Does Nervous System Regulation Help Lyme Disease Recovery?
Why Dr. Winfrey Wants to Make Lyme Education More Accessible
What's Next for Dr. Winfrey and Tick Boot Camp?
Key Takeaways
Learn More About Dr. Chris Winfrey
About This LIVE from ILADS Interview
Episode 621: Morgellons Disease, Lyme & Medical Gaslighting – Cindy Casey-Holman | LIVE from ILADS
Saison 1 · Épisode 621
jeudi 5 novembre 2026 • Durée 23:17
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
What Is Morgellons Disease?
Common Morgellons Symptoms
Painful, Slow-Healing Skin Lesions
Severe Itching and Burning
Crawling Sensations Beneath the Skin
Fibers or Filaments Associated With Skin Lesions
Emotional and Social Isolation
Is Morgellons Disease Connected to Lyme Disease?
Could Morgellons Be a Manifestation of Lyme Disease?
What Are the Fibers Associated With Morgellons?
Morgellons, Medical Gaslighting, and Psychiatric Diagnoses
When Medical Professionals Become Patients
How Cindy's Husband Inspired the Charles E. Holman Foundation
Why Morgellons Research Matters
What Does Current Research Say About Morgellons?
Cindy's Experience With Long-Term Antibiotic Treatment
Could Tick Saliva Help Explain Morgellons Symptoms?
Why Morgellons Patients Need Compassion and Community
How to Support Morgellons Research and Advocacy
Key Takeaways
About This LIVE from ILADS Interview
Episode 620: How to Find the Right Lyme Disease Doctor: Integrative Medicine & Patient Advocacy – Dr. Marina Rasnow-Hill | LIVE from ILADS
Saison 1 · Épisode 620
mercredi 4 novembre 2026 • Durée 19:59
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.
Why an Integrative Medicine Physician Attended ILADS
Treating Complex Chronic Illness One Layer at a Time
From Conventional Medicine to Integrative Medicine
What Is Integrative Medicine?
Why Medical School May Not Prepare Doctors for Every Chronic Illness
What Happens When Doctors Don't Have All the Answers?
Why Patients Need Confidence and Honesty From Their Doctors
Understanding Medical Gaslighting and Patient Frustration
Why the Doctor-Patient Relationship Is a Partnership
Why Communication Matters in Chronic Lyme Disease Care
Three Ways to Build a Better Relationship With Your Lyme Disease Doctor
1. Understand That Complex Chronic Illness Care Is a Process
2. Organize Your Medical History and Participate in Your Care
3. Don't Give Up If a Doctor Isn't the Right Fit
Why Patients and Doctors Both Need Empathy
The Importance of Continuing Medical Education
How to Work With Dr. Marina Rasnow-Hill
Key Takeaways
About This LIVE from ILADS Interview
Episode 619: Sequential Antibiotic Therapy for Chronic Lyme Disease – Dr. Louis Teulières | LIVE from ILADS
Saison 1 · Épisode 619
mardi 3 novembre 2026 • Durée 16:07
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?
Meet Dr. Louis C. Teulières, MD, PhD
What Is Sequential Antibiotic Therapy for Lyme Disease?
Why Dr. Teulières Questions Long-Term Continuous Antibiotics
Borrelia Persistence: Round Bodies, Biofilms, and Tissue Survival
Round-Body Forms
Biofilms
Tissue Localization
Antibiotic Resistance vs. Bacterial Persistence
Why Dr. Teulières Recommends Treatment Breaks
1. Allowing Time for Recovery
2. Evaluating Treatment Response
3. Adjusting Antibiotic Combinations
What Happens When Antibiotics Kill Bacteria?
Bacteriostatic vs. Bactericidal Antibiotics
Bacteriostatic Antibiotics
Bactericidal Antibiotics
Why Combine Both Types?
Selecting Antibiotics Based on Tissue Penetration
Neurological Lyme Disease and the Blood-Brain Barrier
Oral vs. Intravenous vs. Intramuscular Antibiotics
Protecting the Gut Microbiome During Lyme Disease Treatment
Treating Lyme Disease and Co-Infections
Can Antibiotics Have Antiviral Effects?
Intravenous Immunoglobulin and Complex Chronic Illness
Sequential Antibiotics and the Rehabilitation Process
How Does Dr. Teulières' Approach Compare With Lyme Disease Guidelines?
Learn More About Dr. Louis Teulières' ILADS Presentation
Key Takeaways
About This LIVE from ILADS Interview
Episode 618: Are Lyme Herxheimer Reactions Necessary for Healing? Dr. Casey Kelley | LIVE from ILADS
Saison 1 · Épisode 618
lundi 2 novembre 2026 • Durée 20:24
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 , a Chicago-area practice focused on complex chronic illnesses.
Case Integrative Health Is Expanding
What Is a Jarisch-Herxheimer Reaction?
Is Herxing a Good Sign That Lyme Treatment Is Working?
Can You Recover From Lyme Disease Without Herxing?
How Much Herxing Is Too Much?
Why More Aggressive Treatment Is Not Always Better
Why Dr. Kelley's Personal Lyme Disease Experience Matters
Why Lyme Disease Recovery Is Not Linear
Introducing Tick Boot Camp's PARM Healing Framework
P — Prehabilitation
A — Assist
R — Rehabilitate
M — Maintenance
Celebrating Recovery: Dr. Kelley's Disco Balls
Recovering From POTS: Learning to Trust the Body Again
Fear of Relapse After Lyme Disease
Neuroplasticity and Brain Retraining During Rehabilitation
Why Medical Validation Matters When Discussing Brain Retraining
Finding Purpose After Chronic Illness
How to Learn More About Dr. Casey Kelley
Key Takeaways
About This LIVE from ILADS Interview
Episode 617: Healing Chronic Lyme: Mind-Body Connection & Nervous System Regulation – Dr. Jacey Goddard | LIVE from ILADS
Saison 1 · Épisode 617
dimanche 1 novembre 2026 • Durée 20:06
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.
When Even a Doctor Is Told There's Nothing More to Do
Lyme Disease in Maine: Borrelia, Bartonella, and Babesia
What Is Terrain Theory, and How Does It Relate to Lyme Disease?
Understanding Threat, Vulnerability, and Chronic Illness
Nervous System Dysregulation and Chronic Lyme Disease
Are We Becoming Disconnected From Our Bodies?
Your Body Is Not Your Enemy
Mind-Body-Spirit Healing: Treating the Whole Person
Mindfulness or Bodyfulness? Learning to Be Present
Neuroplasticity: Can We Change Our Patterns?
Why Healing Is Not One-Size-Fits-All
Medical Trauma and Feeling Dismissed by Healthcare Professionals
Trauma, Stress, and the Healing Process
The Art & Science of Healing from Within
How Osteopathic Medicine Fits Into Her Approach
How to Work With Dr. Jacey Goddard
Key Takeaways
About This LIVE from ILADS Interview
Episode 616: How Tick Bites Cause Disease: Monica Cipriani on Lyme Disease, Alpha-Gal & Tick Saliva
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.
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?
Tick Saliva: An Evolutionary Tool for Feeding
Why Tick-Borne Disease Is About More Than Lyme
Alpha-Gal Syndrome and the Lone Star Tick
Lyme Disease, Research, and the Questions Patients Are Asking
Why Better Tick Research Matters
From the Field to the Tick Boot Camp Studio
Tick Boot Camp Resources
Episode 615: From Chronic Lyme to Lyme Disease Advocacy – Eva Scarano of LymeLnk | LIVE from ILADS
Saison 1 · Épisode 615
vendredi 30 octobre 2026 • Durée 21:22
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.
A Textbook Lyme Disease Diagnosis in 2016
When Symptoms Returned After Moving to San Francisco
Reaching Her Lowest Point During Graduate School
Turning Pain Into Purpose Through Parsons School of Design
Why Eva Founded LymeLnk
The ABCs of Lyme Disease Awareness
Why Patient Compassion Matters as Much as Awareness
Storytelling as a Public Health Education Strategy
What Is Community-Centered Design?
Why LymeLnk Launched in San Diego
Lyme Disease and Tick Exposure in Southern California
The San Diego Launch Event: Bringing the Community Together
A Tick Encounter at a La Jolla Coffee Shop
Climate Change, Habitat Changes, and Tick Populations
Measuring Whether Lyme Disease Education Works
Bringing Tick Prevention Education Into Schools
Scaling Lyme Disease Education One Community at a Time
Why Collaboration Is Essential
Key Takeaways
About This LIVE from ILADS Interview
Episode 614: Long COVID or Lyme Disease? The Hidden Infection Connection – Dr. Ben Sinclair | LIVE from ILADS
Saison 1 · Épisode 614
jeudi 29 octobre 2026 • Durée 23:59
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 , a multidisciplinary private healthcare practice serving patients with complex chronic illnesses, including long COVID and suspected tick-borne infections.
When a Doctor Becomes the Patient: Dr. Sinclair's Long COVID Journey
From Long COVID to a Lyme Disease Diagnosis
Can COVID-19 Trigger or Reactivate Other Infections?
The Three Bs: Borrelia, Bartonella, and Babesia
Borrelia: The Bacteria Associated With Lyme Disease
Bartonella: A Group of Bacterial Infections
Babesia: A Tick-Borne Parasite
Why Tick-Borne Diseases May Be Increasing in the UK
Deer, Sheep, Migratory Birds, and Tick Exposure
Why Tick Prevention Matters Beyond the Woods
A Multidisciplinary Approach to Complex Chronic Illness
Medical Trauma, Stress, and the Nervous System
Breathwork, Dysautonomia, and Long COVID Recovery
Nutrition, Sleep, and Immune Health
Treating Housebound and Bedbound Patients
Children, Long COVID, and Complex Illness
Lyme Disease Recognition and Treatment in the United Kingdom
Why Dr. Sinclair Attends ILADS
How to Work With Dr. Ben Sinclair
Key Takeaways
About This LIVE from ILADS Interview
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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:
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.
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.
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.
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.
Cindy describes several symptoms that patients report.
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.
Patients may experience intense itching, irritation, and pain.
These symptoms can interfere with sleep, concentration, and daily activities.
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.
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.
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.
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.
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.
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 disagreement illustrates why carefully designed research, appropriate sampling methods, and independent replication are important.
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.
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.
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.
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.
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 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.
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.
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.
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.
Patients and caregivers can also explore the foundation's educational resources and community initiatives.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
A central feature of Dr. Teulières' proposed strategy is incorporating planned intervals between antibiotic courses.
He identifies three potential advantages.
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.
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.
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.
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.
Dr. Teulières explains why he considers the mechanisms of different antibiotics when selecting treatment combinations.
Bacteriostatic antibiotics primarily inhibit bacterial growth under particular conditions.
Some interfere with bacterial protein synthesis.
Dr. Teulières discusses azithromycin as an example.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Rich and Dr. Sinclair discuss three pathogen groups frequently mentioned in the Lyme disease community.
Borrelia burgdorferi and related bacteria cause Lyme disease.
Infections can produce symptoms involving the skin, joints, nervous system, and cardiovascular system.
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 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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