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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Episode 627: Why Lyme Patients Feel Dismissed: How to Get Doctors to Listen – Dr. Kirsten FitzGerald | LIVE from ILADS
Season 1 · Episode 627
Thursday, November 12, 2026 • Duration 30:50
What do you do when you're sick, your Lyme disease test comes back negative, and your doctor tells you everything is fine—even though you know something is wrong?
For many people living with Lyme disease, tick-borne infections, and complex chronic illness, the search for answers can involve years of unexplained symptoms, multiple specialists, frustrating medical appointments, and feeling dismissed by the healthcare system.
But what if improving the patient-doctor relationship could become one of the most important steps toward finding answers?
In this LIVE from ILADS episode of the Tick Boot Camp Podcast, co-host Rich Johannesen sits down with Dr. Kirsten P. FitzGerald, DNP, FNP-BC, a board-certified family nurse practitioner and functional medicine provider based in Ridgefield, Connecticut, to discuss Lyme disease awareness, missed diagnoses, patient advocacy, and the importance of building collaborative relationships between patients and healthcare professionals.
Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, this conversation explores how Dr. FitzGerald transitioned from conventional primary care into functional and integrative medicine after recognizing that some patients with persistent symptoms were not finding the answers or support they needed.
Dr. FitzGerald shares her experiences working with patients affected by Lyme disease, long COVID, mast cell-related concerns, and pediatric neuroinflammatory conditions, including PANS and PANDAS.
Together, Rich and Dr. FitzGerald develop a practical framework for helping patients prepare for medical appointments, communicate more effectively, participate in treatment decisions, and work with their providers toward better health outcomes.
Their central message: Patients deserve to be heard, and meaningful progress often begins when patients and clinicians work together as partners.
Meet Dr. Kirsten P. FitzGerald, DNP, FNP-BC
Dr. Kirsten P. FitzGerald is a Doctor of Nursing Practice and board-certified Family Nurse Practitioner with more than 25 years of healthcare experience.
She is the founder of FitzGerald Health and Wellness, an integrative and functional medicine practice in Ridgefield, Connecticut.
She also collaborates with the team at New Frontiers Functional Medicine & Nutrition, led by Dr. Kara Fitzgerald in Sandy Hook, Connecticut, and works alongside pediatric naturopathic physician Dr. Lindsey Wells, ND, in Trumbull, Connecticut.
Her clinical interests include:
Lyme disease and tick-borne infections
Persistent and complex chronic symptoms
Long COVID and post-infectious illness
Functional and integrative medicine
Mast cell activation syndrome (MCAS)
PANS and PANDAS
Metabolic health and lifestyle medicine
Patient education and collaborative care
Dr. FitzGerald grew up on a trout farm in Connecticut and has spent much of her life around animals, including horses, chickens, cats, and dogs.
Despite living in a region historically associated with Lyme disease, she explains that her understanding of the complexity of tick-borne illness changed significantly after attending a professional presentation.
That experience ultimately helped redirect her medical career.
From Conventional Primary Care to Functional Medicine
Dr. FitzGerald describes a pivotal moment at an advanced practice registered nurse (APRN) conference in Connecticut.
A presentation by fellow clinician Pam Cipriano challenged her understanding of Lyme disease and prompted her to reconsider patients she had previously encountered.
She began thinking about people whose Lyme disease test results had been negative despite symptoms and exposure histories that continued to raise clinical questions.
Dr. FitzGerald explains that conventional primary care often relies on established diagnostic pathways, laboratory testing, and specialist referrals.
These tools are essential, but she became increasingly concerned about patients whose symptoms remained unexplained after multiple evaluations.
During the COVID-19 pandemic, she encountered additional patients struggling with persistent symptoms, including long COVID.
One experience was particularly influential.
A patient who was also a nurse became emotional during an appointment and asked Dr. FitzGerald to stop sending her to additional specialists.
The patient wanted someone to take responsibility for understanding her overall health picture rather than continuing a cycle of referrals without satisfactory answers.
For Dr. FitzGerald, that conversation reinforced the need to expand her knowledge and explore different approaches to complex chronic illness.
She eventually transitioned toward functional and integrative medicine, including working with Dr. Kara Fitzgerald's New Frontiers team.
The conversation illustrates why continuity of care, clinical curiosity, and thoughtful follow-up matter when patients experience symptoms that do not fit neatly into one diagnosis.
Why Lyme Disease Can Be Difficult to Recognize
Dr. FitzGerald expresses frustration that Lyme disease and other tick-borne illnesses are not always considered during evaluations of patients with unexplained symptoms—even in Connecticut.
She describes how patients may visit several specialists for seemingly unrelated problems without anyone initially recognizing a possible connection.
Symptoms discussed include:
Persistent fatigue
Brain fog and cognitive difficulties
Headaches and migraines
Tremors and neurological complaints
Joint and muscle pain
Changes in mood or irritability
Symptoms initially attributed to aging or menopause
Other unexplained changes in physical functioning
Dr. FitzGerald explains that patients may see orthopedic specialists for pain, neurological specialists for tremors, and other providers for fatigue or cognitive concerns.
Each specialist may focus on a particular symptom or organ system.
Her concern is that clinicians can sometimes miss the broader pattern.
Could several seemingly unrelated symptoms have a common explanation?
Lyme disease and other tick-borne infections are among the conditions that may warrant consideration when a patient's history and clinical findings support that possibility.
However, these symptoms are not specific to Lyme disease. Many other medical conditions can produce similar complaints, and appropriate evaluation should consider alternative explanations.
Dr. FitzGerald's message is not simply to test everyone for Lyme disease, but to remain attentive to exposure history, symptom patterns, and unresolved clinical questions.
For more information about the strengths and limitations of available tests, explore Tick Boot Camp's Lyme Disease Testing Resource.
When Lyme Disease Tests Are Negative but Symptoms Continue
One of the challenges discussed in the episode is the interpretation of Lyme disease testing.
Dr. FitzGerald recalls patients whose initial tests were negative even though she remained concerned about the possibility of tick-borne illness.
Rich and Dr. FitzGerald discuss the frustration patients can experience when a negative test result ends the conversation despite ongoing symptoms.
Lyme disease testing has important limitations, particularly early in infection, when antibodies may not yet be detectable.
At the same time, persistent symptoms and negative testing do not automatically establish an undiagnosed Lyme infection.
The appropriate next step depends on the patient's symptoms, exposure history, examination, timing of testing, and other potential diagnoses.
This episode encourages patients to ask informed questions about test results rather than assuming that one result always tells the complete story.
Why Dr. FitzGerald Attends ILADS Conferences
Dr. FitzGerald explains that attending the ILADS conference helps her expand her understanding of tick-borne illnesses and connect with healthcare professionals who encounter complex cases.
She values opportunities to learn from other clinicians, explore research, and discuss diagnostic challenges.
She also hopes to bring information back to her colleagues in conventional medical settings.
Throughout the interview, Dr. FitzGerald emphasizes that changing medical practice requires education, open dialogue, and a willingness to consider new evidence.
She believes that increasing awareness among primary care providers, nurse practitioners, pediatricians, and other healthcare professionals can help patients receive more informed evaluations.
The conference also provides an opportunity to connect with clinicians who share her interest in patient-centered care.
The Patient-Doctor Relationship: A Partnership, Not a One-Way Conversation
The conversation takes an important turn when Rich asks Dr. FitzGerald a question that patients do not always hear:
What can patients do to help their doctors provide better care?
Rather than focusing exclusively on the shortcomings of the healthcare system, Rich suggests that patients may benefit from approaching medical appointments as active participants.
Dr. FitzGerald agrees.
She explains that patients can contribute valuable information that may not be immediately apparent from laboratory results or a brief office visit.
Together, they discuss how a collaborative relationship allows both the patient and clinician to make better use of their time, knowledge, and resources.
This does not mean patients are responsible for diagnostic errors, inadequate access to care, or dismissive treatment.
Instead, the conversation offers practical ways for patients to strengthen communication and advocate for themselves within the healthcare system.
Step 1: Prepare Thoroughly Before Your Medical Appointment
Dr. FitzGerald explains that her initial consultations typically last at least two hours and sometimes extend to three hours.
Before those appointments, she asks patients to complete detailed medical history and intake forms.
She acknowledges that this paperwork can feel overwhelming, particularly for patients already struggling with fatigue, brain fog, or other symptoms.
However, she explains that comprehensive intake information helps her begin understanding the patient's health history before they meet.
The forms may reveal important details about previous illnesses, symptoms, medications, treatments, and medical events.
They also allow her to identify questions she wants to explore during the appointment.
Rich shares his own experience completing extensive intake paperwork before seeing a Lyme-focused physician.
Initially, he found the process frustrating.
But as he worked through the forms, he began recalling medical events and health concerns he had not previously considered relevant.
The experience changed how he approached his medical care.
Instead of arriving at an appointment expecting the doctor to gather all the information and provide an immediate solution, he began seeing himself as an active partner.
Dr. FitzGerald encourages patients to approach medical history forms thoughtfully.
Practical Ways to Prepare
Before an appointment, consider organizing:
A timeline of symptoms and when they began
Previous diagnoses and medical evaluations
Important laboratory results and imaging reports
Current medications and supplements
Previous treatments and responses
Relevant travel, tick exposure, and environmental history
Changes in physical, cognitive, or emotional functioning
Questions and concerns you want to discuss
A trusted family member or caregiver may be able to help patients who have difficulty organizing information because of illness.
The goal is not to create a perfect medical record. It is to help your healthcare provider understand your experience as accurately as possible.
Step 2: Share Your Complete Story Without Embarrassment
Dr. FitzGerald offers one of the episode's most important messages:
“Don't hold back. Put it all on the table.”
She encourages patients to discuss their symptoms openly, even when those symptoms feel embarrassing, confusing, or difficult to explain.
She wants to know how patients feel physically and emotionally, what has changed over time, and what they have experienced during previous medical evaluations.
Dr. FitzGerald acknowledges that many patients arrive at her office after disappointing encounters with other healthcare professionals.
Some are exhausted.
Others are frustrated or fearful.
Some become emotional while describing years of illness.
She explains that these reactions are welcome in her office and that she keeps tissues available for patients who need them.
Patients should not feel pressured to minimize symptoms, hide concerns, or present themselves as doing better than they actually are.
Honest communication helps clinicians understand both the medical and personal impact of illness.
For people who have repeatedly felt dismissed, finding a healthcare professional who listens can be an important part of rebuilding trust.
Step 3: Participate in Developing Your Treatment Plan
Rich and Dr. FitzGerald agree that patients should be involved in decisions about their healthcare.
A treatment plan should not simply be a collection of instructions handed to someone at the end of an appointment.
Instead, patients should understand what is being recommended, why it is being recommended, and what outcomes they should monitor.
Important questions may include:
What diagnoses are we considering?
What is the purpose of this test or treatment?
What benefits and risks should I understand?
What alternatives are available?
How will we measure progress?
What should I do if symptoms change?
When should I follow up?
Dr. FitzGerald emphasizes that patients need to understand their responsibilities and feel comfortable participating in decisions.
Rich describes this as a partnership in which both sides contribute.
The clinician brings medical training, diagnostic reasoning, and professional judgment.
The patient brings personal experience, symptom history, preferences, and feedback about how treatment affects daily life.
Working together can help create a plan that is both medically appropriate and realistic for the individual.
Step 4: Follow Through—and Speak Up When Something Isn't Working
Dr. FitzGerald explains that medical appointments are only one part of the care process.
Patients spend most of their time outside the clinic, where they must manage medications, follow recommendations, and monitor changes in their health.
She discusses the importance of following agreed-upon treatment plans, including lifestyle recommendations when appropriate.
However, she also stresses that patients should not continue suffering silently when a treatment is not helping.
If symptoms worsen, side effects develop, or a plan becomes difficult to follow, patients should contact their healthcare provider.
Rich and Dr. FitzGerald emphasize that follow-up communication is an essential part of the partnership.
Patients should share both improvements and setbacks.
Dr. FitzGerald recalls how meaningful it can be when someone contacts her simply to say they are feeling better.
These updates provide feedback about the patient's experience and help clinicians understand how their recommendations are working.
Progress should be evaluated through ongoing communication—not assumptions.
Why Lyme Patients May Need Additional Support
Rich asks whether people with Lyme disease should approach medical appointments differently from other patients.
Dr. FitzGerald explains that many people seeking care for suspected tick-borne illness have already experienced years of frustration.
Some have been told their symptoms are caused by stress, aging, menopause, or other conditions.
Others have visited multiple specialists without finding a clear explanation.
These experiences can make patients hesitant to trust another healthcare professional or share their complete history.
Dr. FitzGerald encourages patients to describe their symptoms comprehensively rather than presenting each concern as an isolated problem.
She believes that understanding the full pattern can help clinicians determine whether Lyme disease, another tick-borne illness, or a different condition warrants investigation.
For patients who have struggled to find answers, she emphasizes the importance of working with someone willing to listen, explain their reasoning, and consider appropriate next steps.
Lyme Disease, Brain Fog, and Neuropsychiatric Symptoms
Another important discussion involves the neurological and psychological dimensions of Lyme disease and complex chronic illness.
A polymicrobial, multisystemic, chronic infectious or post-infectious disease.
Dr. FitzGerald responds positively but suggests that neurological and neuropsychiatric symptoms deserve greater emphasis.
She discusses concerns involving cognition, mood, and neurological functioning.
Rich acknowledges the importance of these symptoms and explains how Tick Boot Camp's understanding has evolved through interviews with patients and healthcare professionals.
The conversation raises broader questions about how clinicians distinguish active infection, post-infectious symptoms, other tick-borne diseases, and unrelated medical conditions.
Neurological manifestations of Lyme disease are recognized, and some patients experience persistent symptoms after recommended treatment. However, the mechanisms and appropriate management of persistent symptoms remain areas of ongoing research and clinical discussion.
Tick Boot Camp's proposed description is an advocacy framework discussed during the interview, not an established consensus medical definition.
PANS, PANDAS, and Pediatric Complex Chronic Illness
Dr. FitzGerald also discusses collaborating with Dr. Lindsey Wells, ND, in Trumbull, Connecticut.
Their work includes supporting families navigating PANS and PANDAS.
These conditions involve sudden-onset or significant neuropsychiatric symptoms in children and can present complex diagnostic and treatment challenges.
The interview does not explore pediatric testing or treatment protocols in detail, but Dr. FitzGerald's collaboration reflects her interest in the relationship between physical illness and neuropsychiatric symptoms.
Dr. FitzGerald describes how her interest in complex chronic illness expanded during the COVID-19 pandemic.
She encountered patients experiencing persistent symptoms after infection and became increasingly interested in understanding why some individuals were not recovering as expected.
She also identifies mast cell-related conditions among her clinical interests.
Lyme disease, long COVID, and other chronic conditions may share symptoms such as fatigue, cognitive difficulties, sleep disturbances, and reduced physical functioning.
These similarities can complicate diagnosis.
The presence of overlapping symptoms does not mean the conditions share the same cause or require the same treatment.
The discussion reinforces the importance of individualized evaluation and careful consideration of alternative diagnoses.
Why Tick Prevention Must Become Part of Everyday Life
Toward the end of the interview, Rich shares stories about growing up on Long Island in a family that practiced routine tick checks.
He recalls how his mother required the children to check for ticks before entering the main living areas of their home.
Although some of the tick removal methods used decades ago were based on outdated advice, the family's commitment to regular tick checks became a lifelong habit.
Rich explains that he continues checking for ticks regularly and has passed these habits along to his family.
Dr. FitzGerald relates to this experience because she grew up in Connecticut around animals and outdoor environments where ticks are common.
They discuss how families can make tick prevention part of everyday routines.
Important prevention practices include:
Checking yourself, children, and pets for ticks after outdoor exposure
Using appropriate EPA-registered tick repellents
Wearing protective clothing in tick habitats
Using veterinarian-recommended tick prevention products for pets
Removing attached ticks promptly with fine-tipped tweezers
Seeking medical advice when a tick bite presents a meaningful risk or symptoms develop
Do not use petroleum jelly, heat, matches, or burning to remove attached ticks. These methods are not recommended.
Rich's experience also illustrates why tick identification matters: different tick species are associated with different health risks.
Testing a removed tick may identify organisms in that tick, but it cannot determine whether a person has become infected and should not replace clinical evaluation.
Rich shares a personal story about discovering an engorged tick and seeking medical care.
At the time, he had already been involved in helping a friend navigate serious challenges related to chronic Lyme disease.
His friend's experience had motivated him to learn more about tick-borne illness.
When Rich later found a tick attached to his own body, he became concerned about the possibility of infection.
He describes difficulty obtaining a timely appointment and frustration with the medical advice he received.
The tick was eventually identified as a lone star tick.
Rich also recounts sending the tick for laboratory analysis and receiving a report identifying an infectious organism.
His experience reinforced how important it is for patients and clinicians to understand tick species, potential infections, testing limitations, and appropriate post-bite care.
The story also helped motivate the creation of Tick Boot Camp as a platform dedicated to Lyme disease awareness, education, and patient advocacy.
Lone star ticks are associated with several health concerns, including ehrlichiosis and alpha-gal syndrome, but are not established vectors of the bacterium responsible for classic Lyme disease.
Additionally, finding a pathogen in a tick does not establish transmission to the person bitten.
Changing the Conversation About Lyme Disease
Throughout the interview, Dr. FitzGerald expresses appreciation for Tick Boot Camp's efforts to educate patients and healthcare professionals.
She believes greater awareness can help people recognize potential tick exposures, ask better questions, and seek appropriate medical evaluation.
Rich emphasizes that Tick Boot Camp was built around patient experiences and a desire to improve the way people navigate complex chronic illness.
Their conversation moves beyond identifying problems in healthcare and toward practical solutions.
How can patients prepare more effectively?
How can clinicians listen more carefully?
How can both sides communicate with greater honesty and respect?
And how can education help prevent future tick-borne infections?
For Dr. FitzGerald, these questions are central to improving patient care.
Key Takeaways From Dr. Kirsten FitzGerald
Negative Lyme disease testing does not always end the diagnostic discussion. Test timing, exposure history, symptoms, and alternative diagnoses all matter.
Patients deserve to be heard. Persistent symptoms should be taken seriously, even when the cause is not immediately clear.
Prepare before medical appointments. A detailed medical history can help clinicians identify patterns and make informed testing decisions.
Be open about your symptoms. Patients should feel comfortable discussing physical, cognitive, and emotional concerns.
Build a collaborative relationship. Patients and healthcare providers can work together to understand treatment options and establish realistic goals.
Understand your care plan. Ask questions about recommendations, potential risks, and how progress will be assessed.
Communicate changes. Report improvements, worsening symptoms, side effects, and treatment difficulties rather than waiting silently for the next appointment.
Look at the complete clinical picture. Symptoms affecting different parts of the body may require coordinated evaluation.
Consider neurological and cognitive symptoms. Brain fog, headaches, and other neurological complaints deserve appropriate medical assessment.
Healthcare professionals benefit from continued education. Dr. FitzGerald values conferences and collaboration as opportunities to strengthen clinical knowledge.
Tick prevention is a lifelong skill. Regular tick checks and evidence-based prevention strategies can reduce exposure risks.
Hope and advocacy can coexist. Patients can seek answers, advocate for better care, and work toward improved health without carrying responsibility for failures of the medical system.
This episode was recorded at the 2025 ILADS Conference in San Antonio, Texas, where Tick Boot Camp co-host Rich Johannesen interviewed Dr. Kirsten P. FitzGerald, DNP, FNP-BC, a Connecticut-based family nurse practitioner specializing in functional and integrative medicine.
Their conversation explores Lyme disease awareness, diagnostic challenges, patient dismissal, long COVID, neurological symptoms, PANS/PANDAS, the patient-provider relationship, medical appointment preparation, shared decision-making, and tick prevention.
The episode also features Rich's personal experiences navigating medical care after a tick bite and his reflections on how patient advocacy helped inspire Tick Boot Camp.
If you've ever left a doctor's appointment feeling unheard, confused, or unsure what to do next, this conversation offers practical ideas for becoming a more informed, confident participant in your healthcare.
You deserve a healthcare relationship built on listening, respect, and collaboration. And you are not alone in your search for answers.
Episode 626: Why Treating Lyme Disease Requires More Than Antibiotics – Dr. Sigrid Blehle | LIVE from ILADS
Season 1 · Episode 626
Wednesday, November 11, 2026 • Duration 19:42
What happens when Lyme disease treatment focuses on infections, but patients continue struggling with debilitating symptoms? Could mold exposure, gut health, immune dysfunction, or other underlying health challenges be complicating recovery?
In this LIVE from ILADS interview, Tick Boot Camp co-host Rich Johannesen welcomes Dr. Sigrid Blehle, MD, MBA, PhD, Medical Director of Alviasana in Augsburg, Germany, to explore her integrative approach to Lyme disease, chronic infections, and complex chronic illness.
Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, this conversation examines why Dr. Blehle believes that identifying and treating infections is only one part of helping patients with complicated medical histories.
Dr. Blehle discusses her approach to evaluating environmental exposures, mold, heavy metals, gut microbiome health, immune function, nutritional status, and possible tick-borne infections before developing individualized treatment plans.
She also shares her experience with antibiotic therapy, herbal medicine, intravenous treatments, and other integrative interventions, while explaining how her multidisciplinary clinic works with patients from Europe, the United States, Africa, and Asia.
One of her most striking examples involves a patient who had already consulted 48 physicians before arriving at her clinic.
The central message of this interview is that patients with complex symptoms deserve careful listening, comprehensive medical histories, and individualized evaluation rather than assumptions about what is causing their illness.
Meet Dr. Sigrid Blehle: Lyme Disease Physician in Germany
Dr. Sigrid Blehle, MD, MBA, PhD, is a German physician and Medical Director of Alviasana, an integrative medical clinic based in Augsburg, Germany.
When You're the 49th Doctor: The Challenges of Complex Chronic Illness
Why Dr. Blehle Believes Lyme Disease Treatment Requires a Broader Approach
Step One: A Comprehensive Patient History
Mold Exposure and Environmental Factors in Chronic Illness
Does Mold Exposure Affect Lyme Disease Treatment?
Heavy Metals, Genetic Factors, and Metabolic Health
Gut Microbiome Health and Lyme Disease
How Does Dr. Blehle Test the Gut Microbiome?
Fecal Microbiota Transplantation: Could Restoring Gut Bacteria Help?
Evaluating Liver, Kidney, Thyroid, and Nutritional Health
Testing for Lyme Disease and Tick-Borne Coinfections
Tick-Borne Bacteria and Parasites
Other Bacterial Infections
Viral Infections
Other Potential Conditions
Why Dr. Blehle Uses ArminLabs for Lyme Disease Testing
Building an Individualized Lyme Disease Treatment Plan
Antibiotics vs. Herbal Treatments for Chronic Lyme Disease
IV Antibiotics, Infusions, and Integrative Therapies
What Does Recovery From Lyme Disease Look Like?
Tick Boot Camp's PARM Framework for Healing
P — Prehabilitation
A — Assist
R — Rehabilitation
M — Maintenance
The Importance of International Collaboration Through ILADS
International Lyme Disease Care at Alviasana
Key Takeaways From Dr. Sigrid Blehle
Resources Mentioned in This Episode
About This LIVE from ILADS Episode
Episode 625: 25 Doctors, 10 Misdiagnoses: From Lyme Patient to Advocate – Melinda Elliott Sander | LIVE from ILADS
Season 1 · Episode 625
Tuesday, November 10, 2026 • Duration 25:22
After seeing 25 doctors, receiving 10 misdiagnoses, and facing the possibility of ALS, multiple sclerosis, or early-onset Alzheimer's disease, Melinda Elliott Sander finally discovered that tick-borne illness was behind her devastating health journey. Today, she's helping change the future of Lyme disease advocacy across America.
In this LIVE from ILADS interview, Tick Boot Camp co-host Rich Johannesen welcomes Melinda Elliott Sander, a Missouri Lyme disease patient advocate and Community Engagement Fellow withCenter for Lyme Action, to discuss her journey from seriously ill mother of three to national advocate fighting for improved Lyme disease research, awareness, funding, and patient protections.
Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, this conversation explores the challenges of diagnosing tick-borne diseases in the Midwest, the growing impact of alpha-gal syndrome, and how grassroots advocacy is influencing federal legislation.
Melinda shares how she began contacting lawmakers while bedridden, eventually becoming involved in a national movement that grew from approximately 30–40 early advocates to more than 10,000 participants at the time of the interview.
Rich and Melinda also discuss five federal legislative proposals designed to improve tick-borne disease research, prevention, public health infrastructure, patient protections, and access to information.
Their message is empowering: You don't have to be healthy, wealthy, or politically connected to make a difference. Even when chronic illness has taken so much from you, your voice can help create meaningful change.
Melinda Elliott Sander is a Lyme disease patient advocate from north-central Missouri who has spent approximately a decade raising awareness about Lyme disease and other tick-borne illnesses.
25 Doctors, 10 Misdiagnoses, and Eight Medical Specialties
Why Lyme Disease Awareness Matters in Missouri
Alpha-Gal Syndrome: A Major Public Health Concern in Missouri
Melinda's Personal Experience With Alpha-Gal
Why the Lone Star Tick Is an Important Public Health Concern
From Bedridden Lyme Patient to Congressional Advocate
What Is Center for Lyme Action?
How Federal Advocacy Helps Lyme Disease Patients
1. Increasing Funding for Lyme Disease Research
2. Giving Patients a Voice
3. Supporting Research, Medical Education, and Patient Access
Five Federal Tick-Borne Disease Bills Discussed at ILADS 2025
1. Kay Hagan Tick Act Reauthorization
2. Alpha-gal Allergen Inclusion Act
3. Stamp Out Lyme Disease Act
4. BITE Act
5. Tick Identification Pilot Program Act
Why Tick Identification Matters
Meghan Bradshaw and the Growth of Federal Lyme Advocacy
How Lyme Disease Patients Can Get Involved in Advocacy
Why Patient Stories Matter
Returning to School After Chronic Illness
Key Takeaways
Learn More and Get Involved
About This LIVE from ILADS Interview
Episode 624: FDA-Cleared Lyme Disease Testing: What's New at IGeneX? – Dr. Jyotsna Shah | LIVE from ILADS
Season 1 · Episode 624
Sunday, November 8, 2026 • Duration 14:59
Could a major breakthrough in Lyme disease testing help more patients get answers sooner? What does FDA clearance mean for people who have struggled with negative Lyme tests despite ongoing symptoms?
In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reunites with Dr. Jyotsna Shah, PhD, President and Laboratory Director of IGeneX, to discuss an important development in Lyme disease diagnostics: FDA clearance of the iDart Lyme IgM and IgG ImmunoBlot test kits.
Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores how expanded Borrelia antigen coverage, updated antibody interpretation criteria, and single-step immunoblot testing could improve access to Lyme disease diagnostics.
Dr. Shah also discusses the importance of testing for additional tick-borne infections, including Babesia, Bartonella, Anaplasma, Ehrlichia, and Rickettsia.
The interview addresses several questions that matter to the Lyme disease community:
What does FDA clearance mean for IGeneX Lyme disease testing?
Why are Lyme Western blot bands 31 and 34 important?
How do IGeneX ImmunoBlot tests differ from conventional two-tier Lyme testing?
What is the difference between Lyme Borrelia and tick-borne relapsing fever Borrelia?
Why might someone with Lyme-like symptoms test negative for Lyme disease?
Are Babesia and other tick-borne infections becoming more common?
Will FDA clearance make specialized Lyme testing easier to obtain through insurance?
The biggest takeaway: Dr. Shah believes broader diagnostic tools and improved access to testing could help more patients receive timely answers and appropriate medical care.
Meet Dr. Jyotsna Shah, PhD
Dr. Jyotsna S. Shah, PhD, is President and Laboratory Director of IGeneX, a specialty laboratory based in Milpitas, California, focused on diagnostic testing for Lyme disease and other tick-borne infections.
FDA Clearance for Lyme IgM and IgG ImmunoBlot Tests
What Is a Lyme Disease ImmunoBlot?
Why Lyme Disease Testing Bands 31 and 34 Matter
Single-Step Lyme Testing vs. Traditional Two-Tier Testing
Why IGeneX Uses Antigens From Multiple Borrelia Species
Lyme Borrelia vs. Tick-Borne Relapsing Fever Borrelia
Could Tick-Borne Relapsing Fever Be Missed in Patients With Lyme-Like Symptoms?
Why Lyme Disease Testing Should Consider Co-Infections
Is Babesia Becoming More Common?
Dr. Shah's Role in Babesia Testing in New York
What Animals Carry Babesia?
Why FDA Clearance Could Improve Access to Lyme Testing
The Importance of Early and Accurate Diagnosis
Key Takeaways
Learn More About IGeneX and Lyme Disease Testing
About This LIVE from ILADS Interview
Episode 623: From Bed-Bound to Ms Great Britain: Kirstie Haysman’s Lyme Disease Recovery Story
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.
When Lyme Disease Affected Her Brain
The Stranger Who Changed Everything
Traveling to Mexico for Answers
Stem Cells, Plasmapheresis, Ozone and Antibiotics
From Wheelchair and Bed-Bound to Rebuilding Her Life
Primal Trust, Nervous-System Regulation and Self-Hypnosis
“Bed Bound to Beauty Queen”
Turning the Crown Into Lyme Disease Advocacy
Lymelight: Making Disability Visible
Lyme Disease Across Generations
Finding Purpose After Chronic Illness
In This Episode, You’ll Learn
Connect With Kirstie Haysman
More From Tick Boot Camp
Episode 622: 12 Steps to Healing from Chronic Lyme Disease – Dr. Chris Winfrey on Faith, Trauma & Community | LIVE from ILADS
Season 1 · Episode 622
Friday, November 6, 2026 • Duration 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
Season 1 · Episode 621
Thursday, November 5, 2026 • Duration 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
Season 1 · Episode 620
Wednesday, November 4, 2026 • Duration 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
Season 1 · Episode 619
Tuesday, November 3, 2026 • Duration 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
Season 1 · Episode 618
Monday, November 2, 2026 • Duration 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
Her clinical interests include:
Lyme disease and other tick-borne infections
Complex and persistent symptoms following infectious illnesses
Post-COVID conditions
Environmental exposures, including mold
Heavy metal exposure
Mast cell activation syndrome (MCAS)
Gut microbiome health
Nutritional and metabolic concerns
Genetic and immune-related factors
Dr. Blehle describes her clinic's approach as comprehensive, emphasizing that patients frequently arrive with overlapping health concerns rather than a single clearly identified diagnosis.
She explains that many of her patients have already visited numerous physicians, undergone extensive testing, and tried multiple treatments before seeking care at Alviasana.
For these patients, her goal is to investigate potentially relevant contributors to their symptoms and develop a personalized treatment strategy.
Early in the conversation, Dr. Blehle shares the story of a patient who had already seen 48 doctors before visiting her clinic.
Dr. Blehle became the patient's 49th physician.
The example illustrates a familiar experience for many people living with persistent, unexplained symptoms: years of medical appointments, conflicting explanations, unsuccessful treatments, and uncertainty about what to do next.
Dr. Blehle believes that patients with complex chronic illness often require a broader assessment of their health history.
Rather than assuming that every symptom has the same cause, she considers possible infections alongside environmental, nutritional, immune, and other medical factors.
Rich and Dr. Blehle discuss why listening carefully to the patient's experiences is an essential first step.
For people who have struggled to find answers, a comprehensive evaluation can provide an opportunity to revisit overlooked questions and identify areas that may warrant additional investigation.
One of the interview's central themes is Dr. Blehle's belief that treating suspected infections alone may not address every factor contributing to a patient's illness.
She explains that her clinical approach considers the broader health picture, including possible environmental exposures and underlying medical conditions.
For example, a patient may have a history of tick exposure while also experiencing gastrointestinal problems, nutritional deficiencies, or symptoms associated with another illness.
Dr. Blehle believes these issues should be considered together when developing a treatment plan.
Her approach reflects her clinical experience and treatment philosophy. The interview does not establish that all the factors discussed cause persistent Lyme disease symptoms or that treating them improves outcomes for every patient.
Before ordering laboratory tests, Dr. Blehle begins with an extensive medical history.
She wants to understand not only the patient's symptoms, but also their environment, travel history, previous illnesses, and treatment experiences.
Questions may include:
Where does the patient live?
Have they experienced known or suspected tick bites?
Have they been exposed to mosquitoes or other biting insects?
Have they traveled internationally?
Did symptoms begin after an infection or travel?
Have they lived or worked in buildings with water damage or visible mold?
Have they received antibiotics or other treatments?
What medical diagnoses have previously been considered?
Which symptoms have persisted or changed over time?
Dr. Blehle describes how travel history can provide important clues.
For example, a patient may have become ill during or after traveling abroad, with symptoms continuing long after returning home.
She believes that understanding the timing and circumstances of symptom onset helps determine which diagnostic tests may be appropriate.
Her guiding principle is to use the medical history to select targeted investigations rather than ordering the same extensive laboratory panel for every patient.
Rich asks Dr. Blehle about the relationship between environmental exposures and chronic symptoms.
In particular, they discuss mold exposure in homes and workplaces.
Dr. Blehle explains that she asks patients about their living environments and considers possible mold exposure during the initial assessment.
When environmental concerns arise, she may recommend investigating the home for moisture damage or visible mold, including areas behind wallpaper or walls.
She also discusses using laboratory testing in her clinical evaluation.
Rich emphasizes the importance of identifying and reducing ongoing environmental exposures rather than focusing exclusively on testing the patient.
Dr. Blehle shares her clinical belief that addressing suspected mold-related problems before antimicrobial treatment may improve the effectiveness of her broader treatment plan.
She describes using a similar sequence when she suspects heavy metal-related concerns.
These are her reported clinical practices, not established evidence that mold or heavy metal treatment improves Lyme disease outcomes.
Mold exposure can contribute to recognized health problems, particularly respiratory symptoms and allergic conditions. However, testing for mold-related illness is complex, and some commercially marketed body tests have not been validated for diagnosing illness caused by indoor mold.
The conversation raises important questions about environmental health while highlighting the need for appropriate medical assessment and evidence-based testing.
In addition to mold, Dr. Blehle discusses investigating potential heavy metal exposures and selected genetic or metabolic concerns.
She explains that testing depends on the patient's history and clinical presentation.
Her approach includes considering whether certain medical conditions or exposures may be contributing to symptoms.
Rich asks whether she evaluates the body's ability to process or eliminate substances.
Dr. Blehle describes using genetic testing in selected circumstances rather than routinely ordering it for everyone.
This portion of the interview highlights the importance of distinguishing between documented toxic exposures, established medical conditions, and unproven explanations for chronic symptoms.
Heavy metal testing and treatment should be guided by clinically meaningful exposure histories and validated methods.
One of the most detailed sections of the interview focuses on the gut microbiome, the community of microorganisms living in the digestive tract.
Dr. Blehle explains that many of her patients have previously undergone antibiotic treatment.
Because antibiotics can affect intestinal bacteria, she considers gastrointestinal health when planning additional treatment.
She believes the gut microbiome is an important part of evaluating patients with complex chronic illness.
Research has established connections between the intestinal microbiome and immune function, although the clinical significance of many commercial microbiome test results remains uncertain.
Dr. Blehle describes using stool testing to evaluate aspects of intestinal microbial composition.
She also discusses measuring substances such as histamine in stool samples.
She explains that she may address identified gastrointestinal concerns before beginning additional antimicrobial treatment.
Her goal is to consider digestive health and previous treatment effects as part of the overall care plan.
However, there is currently no universally accepted stool microbiome profile that defines optimal immune health or reliably predicts Lyme disease treatment outcomes.
The interview presents Dr. Blehle's clinical approach rather than establishing that routine microbiome testing is necessary for Lyme disease patients.
Rich asks Dr. Blehle about fecal microbiota transplantation (FMT), a procedure that transfers processed stool-derived microorganisms from a donor into a recipient's gastrointestinal tract.
Dr. Blehle shares that she has treated one patient who underwent the procedure and appeared to benefit.
She emphasizes that this experience involved only one patient.
Rich also recalls interviewing patients who described improvements after undergoing fecal microbiota transplantation during their recovery journeys.
The discussion raises questions about the relationship between the gut microbiome, antibiotic exposure, and long-term health.
FMT has established clinical applications for selected cases of recurrent Clostridioides difficile infection. It is not an established treatment for Lyme disease or post-treatment Lyme disease symptoms, and it carries infectious and other risks.
Dr. Blehle's anecdote should not be interpreted as evidence that FMT is effective for Lyme disease.
Dr. Blehle explains that her initial evaluation commonly includes laboratory testing to assess general health and organ function.
Depending on the patient, this may involve:
Liver function tests
Kidney function tests
Complete blood count
Differential white blood cell count
Vitamin and nutritional assessments
Thyroid-related testing
Selected metabolic or genetic investigations
She also describes using an electrocardiogram (ECG) and abdominal ultrasound as part of her clinic's evaluation.
These assessments can provide information about a patient's overall medical condition and help clinicians consider treatment risks.
Dr. Blehle emphasizes that she wants a broad understanding of each patient's health before making treatment decisions.
After reviewing the patient's history and general health, Dr. Blehle discusses testing for infections.
She explains that she considers a variety of bacterial, viral, fungal, and parasitic conditions depending on the patient's symptoms and exposure history.
Organisms and infections discussed include:
Borrelia species, associated with Lyme disease and other borrelial infections
Babesia species, which can cause babesiosis
Bartonella species
Ehrlichia species
Anaplasma species
Yersinia
Chlamydia pneumoniae
Chlamydia trachomatis
Campylobacter
Epstein-Barr virus (EBV)
Cytomegalovirus (CMV)
Human herpesvirus 6 (HHV-6)
Parvovirus
Toxoplasmosis
Selected parasitic infections
Candida-related conditions
Dr. Blehle explains that she does not routinely order one standardized infectious disease panel for every patient.
Instead, she selects tests based on her assessment of the patient's medical history and symptoms.
An important distinction: Not every organism mentioned is transmitted by ticks, and a positive antibody test does not necessarily establish an active infection. Test results must be interpreted alongside symptoms, exposure history, examination findings, and the known accuracy of the test.
Rich asks Dr. Blehle which laboratories she uses when evaluating Lyme disease and potential coinfections.
She explains that she frequently works with ArminLabs, a laboratory based in Germany.
Dr. Blehle describes having a longstanding professional relationship with the laboratory and familiarity with its testing methods.
She also uses other laboratories when additional information is needed.
Rich shares his positive experiences speaking with Dr. Armin Schwarzbach and expresses appreciation for his work in tick-borne disease diagnostics.
The conversation highlights the importance of understanding which tests are being ordered, what they measure, and how their results inform clinical decisions.
Different laboratory methods have different strengths, limitations, and levels of clinical validation. Patients should discuss the implications of testing with qualified healthcare professionals.
Once the medical history, examination, and testing have been completed, Dr. Blehle schedules a follow-up discussion to review the results.
She explains that the next step is developing a personalized treatment plan.
Depending on her assessment, the plan may include:
Prescription antimicrobial medications
Herbal treatments
Nutritional support
Selected supplements
Management of identified medical conditions
Monitoring of symptoms and laboratory findings
Additional interventions offered at her clinic
Dr. Blehle describes preparing separate plans for prescription medications and supplements when appropriate.
She also explains that treatment decisions are discussed with other members of her clinical team.
The goal is to tailor care to the patient's presentation rather than assume that everyone requires the same treatment.
Rich asks Dr. Blehle how she approaches antimicrobial treatment.
She explains that her clinic uses both prescription antibiotics and herbal treatments.
According to Dr. Blehle, some patients receive antibiotic-based treatment plans, while others pursue herbal approaches.
She describes her typical treatment timelines as:
Antibiotic-based approaches: Approximately 8–12 months
Herbal approaches: Approximately 18–24 months
These durations represent Dr. Blehle's reported clinical practices, not standard treatment recommendations or evidence that prolonged therapy is effective for every patient.
Established antibiotic regimens for Lyme disease are generally substantially shorter and depend on the specific clinical manifestation.
Prolonged antimicrobial treatment can carry important risks, and the evidence does not support routinely extending antibiotics for persistent nonspecific symptoms after recommended Lyme disease treatment.
Likewise, herbal products vary in composition, safety, and supporting clinical evidence.
Patients should discuss treatment decisions with appropriately qualified clinicians.
Dr. Blehle describes several interventions available at Alviasana.
These include:
Intravenous antibiotic treatment in selected cases
Vitamin C infusions
Amino acid infusions
Ozone therapy
Magnetic field therapy
Light-based therapies
Other individualized supportive treatments
She also mentions a temperature-based treatment transcribed as “hypothermia.” The recording does not make clear whether she intended to describe hypothermia or hyperthermia, so the exact intervention would need confirmation.
Dr. Blehle explains that she does not believe every patient requires intravenous antibiotics.
She reserves them for selected situations based on her clinical assessment.
It is important to distinguish between therapies with established medical indications and experimental or insufficiently validated approaches.
For example, IV antibiotics may be indicated for certain manifestations of Lyme disease, but they are not automatically necessary for persistent symptoms. Ozone therapy and magnetic field therapies are not established treatments for Lyme disease.
The interview provides an overview of services described by Dr. Blehle rather than evidence that each intervention is safe or effective for Lyme disease.
Toward the end of the interview, Rich asks Dr. Blehle how her team determines whether a patient has recovered.
She explains that her clinic considers both symptoms and follow-up testing.
Dr. Blehle describes using a period of at least four months without symptoms and with negative test results as part of her clinic's approach to assessing recovery.
She also discusses patients returning periodically for additional testing because they fear their infections may return.
However, Lyme disease antibody tests can remain positive for months or years after successful treatment, and repeat serology is not a validated test of cure.
Consequently, Dr. Blehle's described testing criteria should not be treated as a universally accepted definition of Lyme disease recovery.
The discussion nevertheless highlights an important patient concern: How can someone regain confidence in their health after years of debilitating symptoms and uncertainty?
Rich introduces Dr. Blehle to Tick Boot Camp's PARM framework, developed from patterns observed across hundreds of patient interviews.
PARM stands for:
Preparing the body and mind for the recovery process.
This phase emphasizes understanding the patient's health status and addressing barriers that may affect their ability to participate in care.
Using appropriate medical treatment and supportive strategies to address diagnosed infections and other relevant health concerns.
Supporting recovery of physical function, cognitive abilities, and overall quality of life.
Depending on the patient's needs, rehabilitation may involve physical therapy, occupational therapy, cognitive rehabilitation, or other individualized interventions.
Maintaining healthy habits, monitoring for new concerns, and reducing the risk of future tick exposure.
This includes practical prevention strategies to help protect against reinfection.
Dr. Blehle explains that the general structure is consistent with the way she approaches her patients.
She also describes using an additional period of herbal treatment toward the end of some treatment plans.
Her endorsement reflects her clinical perspective. PARM is a patient-informed framework for organizing recovery experiences, not a validated medical protocol.
For practical tick prevention and post-bite guidance, visit Tick Boot Camp's Tick Bite Blueprint.
Dr. Blehle explains that she has attended approximately 10 ILADS conferences in the United States and Europe.
She values the opportunity to learn from physicians and researchers who work with patients experiencing complex symptoms.
At the 2025 conference, she was particularly interested in presentations addressing:
Mold and environmental exposures
Brain metabolism
Neurological function
Emerging clinical and scientific perspectives
Education for physicians treating tick-borne diseases
Dr. Blehle also discusses her efforts to expand physician education in Germany and other European countries.
She believes that more doctors need opportunities to learn about tick-borne diseases and complex chronic illness.
Her goal is to help build a larger network of clinicians who can recognize relevant conditions, evaluate patients thoroughly, and provide appropriate care.
Although Dr. Blehle practices in Augsburg, Germany, she explains that Alviasana works with patients from around the world.
Her clinic has welcomed individuals from:
Germany and other European countries
The United States
Africa
Asia
She notes that the clinic's website is available in multiple languages, including English, German, and French.
Patients interested in learning more about her medical practice can visit the Alviasana official website.
The interview does not establish whether particular treatments are available or appropriate for every international patient. Individuals considering care abroad should evaluate the provider's credentials, proposed treatment evidence, risks, costs, and follow-up arrangements.
A detailed medical history matters. Dr. Blehle begins with patients' symptoms, exposures, travel, previous diagnoses, and treatment experiences.
Complex symptoms may have multiple contributors. She evaluates potential infections alongside other medical and environmental concerns.
Mold and environmental exposures deserve appropriate consideration. The interview explores how living conditions may affect health, while the effectiveness of mold-directed treatments for Lyme disease remains unproven.
Gut health is part of her clinical approach. Dr. Blehle considers gastrointestinal symptoms, previous antibiotic use, and stool testing.
Infectious disease testing should be individualized. She selects tests based on patient history rather than relying on one standard panel.
Not every positive infectious disease test indicates active illness. Clinical interpretation is essential.
Treatment decisions vary among patients. Dr. Blehle discusses antibiotics, herbal medicine, and other interventions offered at her clinic.
Prolonged treatment requires careful evaluation. Her reported treatment timelines are not standard recommendations and must be considered in light of available evidence and potential risks.
Recovery involves more than a laboratory result. Symptoms, function, quality of life, and clinically appropriate follow-up all matter.
Physician education is important. Dr. Blehle works to expand professional learning opportunities in Germany and Europe.
International collaboration can encourage new research questions. ILADS brings together clinicians and researchers from different countries.
Patients deserve to be heard. Her story about becoming one patient's 49th physician underscores the challenges faced by people seeking answers.
Recorded at the 2025 ILADS Conference in San Antonio, Texas, this episode features Dr. Sigrid Blehle, MD, MBA, PhD, Medical Director of Alviasana in Augsburg, Germany.
Together with Tick Boot Camp co-host Rich Johannesen, Dr. Blehle explores comprehensive patient evaluations, Lyme disease testing, tick-borne coinfections, mold exposure, heavy metals, gut microbiome health, immune function, antibiotic and herbal treatment approaches, and the importance of individualized care.
The conversation also examines Tick Boot Camp's PARM framework and the need for continued physician education and international collaboration.
For patients who have visited countless doctors without finding answers, this episode reinforces an important message: Your symptoms deserve thoughtful investigation, your experiences deserve to be heard, and meaningful improvements in health and quality of life remain possible.
She serves as a Community Engagement Fellow with Center for Lyme Action, a national advocacy organization dedicated to increasing federal funding and advancing policy solutions for Lyme disease, alpha-gal syndrome, and other tick-borne conditions.
Melinda has participated in Center for Lyme Action's advocacy efforts since the organization's early days in 2020.
She now works to strengthen state-level advocacy teams, connect patients with opportunities to participate in public policy, and help expand the organization's national network.
At the time of the interview, Melinda was completing a public health degree at Western Governors University.
Her mission is deeply personal.
After experiencing years of debilitating illness and struggling to obtain an accurate diagnosis, she committed herself to helping other patients avoid the same challenges.
Approximately 10 years before this interview, Melinda became seriously ill while raising three young children.
Her symptoms were severe, but physicians struggled to determine what was causing them.
During her diagnostic journey, she consulted:
25 physicians
Eight medical specialties
10 different diagnoses
Doctors considered serious neurological conditions, including ALS, multiple sclerosis, and early-onset Alzheimer's disease.
Melinda describes how frightening this experience was, especially while caring for her children and trying to maintain hope for her future.
Eventually, she learned that tick-borne illness was involved.
The diagnosis surprised her.
She had already considered and ruled out numerous possibilities, and tick-borne disease was not something she initially believed could explain her symptoms.
Her experience illustrates the emotional and physical toll of a prolonged diagnostic journey.
It also highlights the importance of comprehensive medical evaluation when patients experience persistent, unexplained symptoms.
Melinda lives approximately 30 miles north of Columbia, Missouri.
She explains that people in her region are sometimes told Lyme disease does not exist in their state.
Yet Missouri has extensive outdoor activity involving farming, hunting, hiking, and recreation.
Residents regularly encounter ticks in fields, forests, backyards, and other everyday environments.
Melinda believes greater awareness of tick-borne diseases is needed among healthcare professionals and the public.
Rich contrasts her experience with living on Long Island, New York, where Lyme disease is widely recognized.
He explains that patients in highly endemic areas may face different diagnostic challenges than patients in regions where Lyme disease is considered less common.
Importantly, tick-borne disease risks vary by geography and tick species. Missouri is associated with several significant tick-borne health concerns, including ehrlichiosis, spotted fever group rickettsioses, and alpha-gal syndrome.
Melinda's message is that tick exposure should not be dismissed simply because someone lives outside a traditionally recognized Lyme disease hotspot.
For guidance following a tick bite, explore Tick Boot Camp's Tick Bite Blueprint.
One of the most important topics in this interview is alpha-gal syndrome (AGS), a potentially serious allergy associated with certain tick bites.
In the United States, alpha-gal syndrome is strongly associated with bites from the lone star tick.
The condition involves an immune response to alpha-gal, a sugar found in most non-primate mammals.
People with alpha-gal syndrome may experience allergic reactions after consuming certain mammalian foods or encountering other products containing alpha-gal.
Symptoms can include:
Hives and itching
Gastrointestinal distress
Swelling
Breathing difficulties
Severe allergic reactions, including anaphylaxis
Melinda describes Missouri as a significant area of concern for alpha-gal syndrome.
She discusses how the condition can affect farmers, hunters, and families whose livelihoods involve livestock.
Some people may experience serious lifestyle changes as they learn to navigate food ingredients, medications, and other potential exposures.
Melinda reveals that she also developed alpha-gal syndrome.
After years of dealing with Lyme disease and other tick-borne illnesses, she noticed alpha-gal-related symptoms following a COVID-19 infection.
She discusses her physician's hypothesis that changes in immune function may have contributed to the timing of her symptoms.
However, the interview does not establish that COVID-19 caused her alpha-gal syndrome.
Her experience reinforces the importance of further research into tick-associated allergies and immune responses.
Rich and Melinda discuss the aggressive behavior of lone star ticks.
Unlike some tick species that primarily wait on vegetation for a host, lone star ticks can actively move toward potential hosts.
Rich recalls observing this behavior firsthand after removing a lone star tick from his body.
He describes placing the tick on his bathroom sink and watching it repeatedly move toward him.
The conversation highlights why tick prevention matters even during ordinary outdoor activities.
Lone star ticks are associated with several health concerns, including ehrlichiosis and alpha-gal syndrome.
Their expanding geographic distribution has increased attention to prevention, surveillance, and public education.
One of the most inspiring parts of Melinda's story is how she began advocating while severely ill.
She recalls lying in bed and writing letters to elected officials.
Even when she lacked the energy to travel or participate in traditional advocacy activities, she found ways to make her voice heard.
She contacted senators, representatives, and public health officials to explain the challenges patients were experiencing.
Eventually, Melinda traveled to Washington, D.C., to participate in congressional meetings.
She remembers feeling nervous during her first visits.
However, an interaction with former Missouri Senator Roy Blunt helped reinforce the importance of her work.
He encouraged her by explaining that lawmakers need to hear directly from constituents about the challenges affecting their communities.
That experience strengthened Melinda's commitment to advocacy.
Today, she encourages other patients and caregivers to share their stories with elected officials.
If lawmakers don't hear about the problems patients face, they may never fully understand the need for change.
Center for Lyme Action is a national advocacy organization working to increase federal funding and advance policy solutions for Lyme disease, alpha-gal syndrome, and other tick-borne conditions.
Its work focuses on:
Increasing federal investment in tick-borne disease research
Improving diagnostic tools and treatment options
Supporting prevention and public health surveillance
Educating members of Congress
Advocating for patients and caregivers
Strengthening state-level advocacy networks
Encouraging collaboration among researchers, healthcare professionals, and policymakers
Melinda explains that Center for Lyme Action began with approximately 30–40 advocates participating in its early congressional outreach efforts.
By the 2025 ILADS Conference, she reports that the network had grown to more than 10,000 advocates nationwide.
She now helps organize and strengthen those state-level teams.
The organization's goal is to turn individual patient experiences into coordinated national advocacy.
Rich asks an important question: How does federal advocacy actually help individual patients get better?
Melinda explains that advocacy can influence patient care in several ways.
Federal funding supports scientific investigations into Lyme disease and other tick-borne illnesses.
Research can contribute to improvements in:
Diagnostic testing
Understanding persistent symptoms
Treatment approaches
Prevention strategies
Disease surveillance
Medical education
Recognition of additional tick-borne conditions
Melinda discusses the substantial growth in federal attention and research funding that advocates have helped encourage.
She references cumulative investments approaching half a billion dollars, although the interview does not specify the exact programs or years included in that figure.
Her larger point is that organized patient advocacy can help direct public resources toward scientific questions that matter to patients.
Melinda believes advocacy provides patients with an opportunity to influence the systems that affect their lives.
People who feel isolated by chronic illness can connect with others who understand their experiences.
They can share stories, contact lawmakers, and participate in efforts to improve public policy.
For some patients, advocacy becomes an important source of purpose and connection.
Rich discusses the challenges physicians may face when caring for patients with complex or persistent symptoms.
He expresses concern that professional, regulatory, and legal uncertainty may discourage some clinicians from working with these patients.
Melinda agrees that advocacy is important at both the state and federal levels.
Their discussion explores how research, medical education, and healthcare policy can influence clinical practice.
The goal is to improve access to informed, compassionate, evidence-based care while maintaining appropriate patient safety protections.
Melinda explains that Center for Lyme Action was supporting five major legislative proposals during the 2025 congressional session.
She describes the simultaneous consideration of these bills as an important moment for the tick-borne disease community.
H.R. 4348 — Kay Hagan Tick Act Reauthorization
The original Kay Hagan Tick Act established a federal framework for improving the prevention and control of vector-borne diseases.
The reauthorization proposal aimed to continue and strengthen these efforts.
Key priorities included:
Supporting a national vector-borne disease strategy
Continuing regional Centers of Excellence
Providing grants to state and local health departments
Strengthening disease surveillance
Improving prevention and public health responses
Melinda emphasizes the importance of directing resources to state health departments and research institutions.
Update since the interview: The Kay Hagan Tick Act reauthorization was signed into law on September 30, 2026, extending relevant programs through 2030.
H.R. 1178 — Alpha-gal Allergen Inclusion Act
This legislation addresses challenges faced by people with alpha-gal syndrome.
The proposal seeks to expand federal allergen-labeling requirements to include alpha-gal.
Melinda explains that people with alpha-gal syndrome may encounter mammalian-derived ingredients in foods, medications, cosmetics, and other products.
Improved labeling could help patients identify relevant ingredients and make more informed decisions.
H.R. 4981 — Stamp Out Lyme Disease Act
The Stamp Out Lyme Disease Act proposes creating a special postage stamp to generate funding for Lyme disease research.
Revenue from the semipostal stamp would support research through the National Institutes of Health.
Melinda and Rich discuss the proposal as a creative way to raise awareness while generating additional research funding.
H.R. 4980 — Battling Infections Transmitted by Ticks and Exposure Act
The BITE Act proposes improving public awareness of tick-borne and other vector-borne disease risks.
Melinda describes the possibility of location-based alerts that could notify people when they enter areas associated with increased tick exposure.
The proposed system would help communicate relevant public health information and support prevention efforts.
H.R. 4979 — Tick Identification Pilot Program Act
This proposal would support state-level tick identification programs.
Such programs could help residents identify ticks and better understand potential exposure risks.
Rich connects the legislation to existing educational resources, including the University of Rhode Island's TickEncounter Resource Center.
He also discusses Tick Boot Camp's Tick Bite Blueprint, which provides practical guidance for people who discover an attached tick.
The discussion highlights the value of making tick identification and prevention resources more widely available.
Different tick species are associated with different pathogens and health risks.
For example:
Blacklegged ticks: Associated with Lyme disease, anaplasmosis, and babesiosis.
Lone star ticks: Associated with ehrlichiosis and alpha-gal syndrome.
American dog ticks: Associated with certain spotted fever group infections.
Identifying a tick can help guide conversations with healthcare professionals.
However, tick identification does not establish that a tick transmitted an infection.
Similarly, a negative test of a removed tick does not necessarily rule out exposure to another infected tick.
The interview emphasizes education, prevention, and informed medical decision-making.
Melinda credits Meghan Bradshaw, Executive Director of Center for Lyme Action, with helping lead the organization's federal advocacy efforts.
She describes Meghan as a central presence in Washington, D.C., building relationships with lawmakers and coordinating legislative priorities.
Melinda also explains that continued organizational growth requires additional resources.
As more patients become involved, Center for Lyme Action needs stronger infrastructure, sponsorships, and additional staff to support its state teams and federal initiatives.
The organization's long-term goal is to transform grassroots participation into sustained public policy change.
Tick Boot Camp was built around the belief that sharing patient experiences can educate, validate, and inspire others.
Rich explains that storytelling serves two important purposes.
First, it helps people recognize that they are not alone.
Second, it gives individuals an opportunity to contribute to something larger than their own illness.
Melinda agrees that personal stories are essential to advocacy.
Lawmakers may review statistics and funding requests, but hearing directly from constituents helps them understand how public policy affects real families.
Her experience illustrates how a personal health crisis can eventually lead to public service and meaningful change.
Toward the end of the interview, Melinda discusses her decision to continue her education.
She is completing a public health degree at Western Governors University.
After years of illness and cognitive challenges, returning to school represents an important personal milestone.
Melinda explains that continuing to learn helps her challenge assumptions about what she can accomplish.
She also believes additional education will make her a more effective advocate.
Rich connects her academic journey to the broader concept of purpose.
As Melinda gains knowledge, she develops new ways to serve patients and improve public health.
Her story demonstrates that chronic illness can change someone's path without eliminating the possibility of future achievement.
Melinda Elliott Sander experienced a prolonged diagnostic journey. She consulted 25 physicians across eight specialties and received 10 diagnoses before identifying tick-borne illness.
Missouri patients face distinctive challenges. Tick exposure is common, but the recognition and distribution of specific tick-borne diseases vary by region.
Alpha-gal syndrome is a significant public health concern. Melinda discusses its impact on patients, farmers, and families.
Advocacy can begin from home. Melinda started contacting lawmakers while bedridden.
Center for Lyme Action has built a nationwide network. Melinda reports growth from approximately 30–40 early advocates to more than 10,000.
Federal funding supports research and prevention. Advocates are working to improve diagnostics, treatments, and public health infrastructure.
Five major legislative proposals were highlighted at ILADS 2025. They address research, prevention, tick identification, exposure alerts, and alpha-gal labeling.
The Kay Hagan Tick Act reauthorization became law in September 2026. The remaining proposals were discussed as pending legislation at the time of recording.
Patient stories can influence policy. Personal experiences help lawmakers understand gaps in healthcare.
Research and advocacy work together. Scientific evidence can inform clinical practice and future policy.
Chronic illness does not eliminate purpose. Patients can contribute to advocacy in ways that match their abilities.
Education can be part of rebuilding life after illness. Melinda's return to school reflects her commitment to continued learning and service.
Explore these resources to learn more about Lyme disease advocacy, tick-borne illness prevention, and the legislation discussed:
Recorded at the 2025 ILADS Conference in San Antonio, Texas, this conversation features Melinda Elliott Sander, a Missouri Lyme disease patient advocate and Community Engagement Fellow with Center for Lyme Action.
Rich and Melinda discuss her journey through 25 physicians and 10 misdiagnoses, the challenges of tick-borne illness awareness in Missouri, alpha-gal syndrome, federal research funding, and the growing movement to improve Lyme disease policy.
They also examine five federal legislative proposals and the role of patients in shaping the future of tick-borne disease prevention, diagnosis, and treatment.
Melinda's story demonstrates that even when chronic illness changes everything, your experiences and your voice can help create a better future for others.
Explore more conversations with patients, physicians, researchers, and advocates through the Tick Boot Camp Podcast.
She has spent decades working to advance laboratory methods for detecting infectious diseases, including Borrelia and Babesia.
Dr. Shah has also been involved in developing and evaluating immunoblot testing, fluorescence in situ hybridization (FISH), and other laboratory techniques.
Her work includes efforts to improve the detection of tick-borne pathogens that may not be identified through commonly used testing approaches.
During this interview, she shares updates on IGeneX's diagnostic technology, FDA clearance, and efforts to expand testing availability.
An immunoblot is a laboratory test that detects antibodies directed against specific proteins, called antigens.
When someone is exposed to Borrelia bacteria, their immune system may produce antibodies against different bacterial proteins.
An immunoblot measures antibody reactivity to selected antigens.
Dr. Shah discusses two major antibody classes:
IgM antibodies: Often appear earlier during an immune response.
IgG antibodies: Generally develop later and may remain detectable long after an infection.
Both can provide useful information when interpreted in the context of symptoms, exposure history, and other clinical findings.
However, antibody results alone cannot reliably determine whether an infection is currently active, and IgM results can be misleading when used to evaluate symptoms of long duration.
One of the most important developments discussed is the inclusion of bands 31 and 34 in the FDA-cleared immunoblot kits.
These bands correspond to Borrelia outer surface proteins:
Band 31: Outer surface protein A, or OspA
Band 34: Outer surface protein B, or OspB
Dr. Shah explains that IGeneX has long considered these bands important when evaluating Lyme disease antibody responses.
She emphasizes that the FDA-cleared tests include these antigens in their interpretation criteria.
The kits use antigen-group interpretation rules rather than simply adopting conventional CDC-associated Western blot band counts.
This is significant because different diagnostic methods may recognize different antibody patterns.
However, no individual band establishes a Lyme disease diagnosis by itself.
Positive antibody findings must be interpreted alongside clinical information, and some bands can have limitations involving cross-reactivity or prior vaccination.
Rich asks Dr. Shah to explain how the new immunoblot approach differs from conventional Lyme disease testing.
Traditional standard two-tier testing generally involves two sequential steps.
The first test screens for antibodies.
If the screening result meets the laboratory's criteria, a second test is performed.
Depending on the testing algorithm, that second test may be an immunoblot or another antibody assay.
Dr. Shah explains that the FDA-cleared iDart ImmunoBlot kits are designed to function as stand-alone antibody tests within their authorized intended use.
This means a laboratory does not necessarily need to follow the same two-step workflow when using these particular kits.
She believes this could simplify testing and make broader diagnostic technology available to additional laboratories.
Single-step testing does not eliminate the possibility of false-negative or false-positive results, and test selection should remain guided by clinical circumstances.
Dr. Shah emphasizes the importance of recognizing diversity among Borrelia bacteria.
Lyme disease is associated with multiple Borrelia species, including species found in North America and Europe.
Different species and strains may vary in their antigenic characteristics.
Dr. Shah explains that IGeneX incorporates antigens from multiple species and strains to broaden antibody recognition.
She describes the laboratory's approach as particularly relevant for patients with potential exposure in different geographic regions.
The conversation also distinguishes Lyme disease Borrelia from tick-borne relapsing fever Borrelia.
These are related groups of bacteria, but they are associated with distinct infections and require appropriate diagnostic interpretation.
During the interview, Dr. Shah describes IGeneX testing for two different groups of Borrelia.
Lyme disease Borrelia: She discusses testing that incorporates antigens representing nine Borrelia species associated with Lyme disease.
Tick-borne relapsing fever Borrelia: She describes a separate testing approach involving eight species.
Together, these represent 17 species considered across the two testing categories discussed in the interview.
Dr. Shah emphasizes that patients with similar symptoms may have different infections.
She also explains that some people with tick-borne relapsing fever Borrelia may not describe the classic recurring fever pattern traditionally associated with the disease.
An important distinction is that the FDA-cleared Lyme ImmunoBlot kits should not be described as one FDA-cleared test that detects all 17 species.
The interview discusses separate Lyme disease and relapsing fever testing categories.
Dr. Shah describes her laboratory's experience evaluating patients who have symptoms suggestive of tick-borne illness but negative Lyme disease testing.
She explains that some have shown evidence of exposure to relapsing fever Borrelia.
The conversation also touches on laboratory findings involving selected patients reporting Morgellons symptoms.
Dr. Shah describes identifying relapsing fever Borrelia-related findings in some of these patients.
These observations are part of her laboratory experience and do not establish that relapsing fever Borrelia causes Morgellons or explains persistent symptoms in all patients.
They do, however, highlight why clinicians may consider alternative diagnoses when evaluating unexplained symptoms and relevant exposure histories.
Rich and Dr. Shah discuss the growing recognition of infections that can occur alongside Lyme disease.
A tick may carry more than one pathogen, and people may also experience multiple exposures over time.
Dr. Shah explains that patients with suspected tick-borne illness may need evaluation for additional pathogens depending on their symptoms and risk factors.
She discusses several groups of organisms:
Borrelia: Bacteria associated with Lyme disease and relapsing fever.
Babesia: Parasites that infect red blood cells and cause babesiosis.
Bartonella: Bacteria associated with several human diseases, although the role of ticks in transmitting human Bartonella infection remains unproven.
Anaplasma: Bacteria responsible for anaplasmosis.
Ehrlichia: Bacteria responsible for ehrlichiosis.
Rickettsia: Bacteria associated with several tick-borne illnesses, including spotted fever group infections.
Dr. Shah believes broader testing panels can help identify infections that might otherwise be overlooked.
However, comprehensive panels are not automatically necessary for every patient.
Testing decisions should reflect symptoms, geographic exposure, clinical findings, and the performance characteristics of each assay.
One of the most interesting discussions concerns Babesia, a parasite that infects red blood cells.
Rich shares observations from Tick Boot Camp interviews suggesting that Babesia is being discussed more frequently among patients with complex tick-borne illnesses.
Dr. Shah agrees that Babesia has become increasingly important in laboratory testing.
She references data from the IGeneX patient population in which Babesia findings were particularly common.
These laboratory observations do not necessarily represent prevalence in the general population.
Rich asks whether the apparent increase reflects more infections or improved testing.
Dr. Shah believes both may contribute, but emphasizes that improved diagnostic methods have helped identify infections that were previously overlooked.
Dr. Shah shares a story about her work with Dr. Richard Horowitz around 1999.
She recalls helping bring greater attention to Babesia in New York through laboratory testing.
At that time, she was working with Babesia FISH testing, a technique designed to identify genetic material within organisms in patient samples.
She describes discussing Babesia findings with researchers familiar with the parasite.
Her experience illustrates how diagnostic methods and scientific collaboration can contribute to increased recognition of tick-borne diseases.
Dr. Shah believes that improved testing remains an important factor in identifying Babesia infections.
Rich asks Dr. Shah about the relationship between Babesia and wildlife populations.
The conversation includes deer, horses, sheep, dogs, cats, and other animals.
Dr. Shah explains that Babesia organisms occur in multiple animal species.
However, different Babesia species have different host relationships.
For human babesiosis caused by Babesia microti in the northeastern United States, white-footed mice and certain other small mammals are important reservoir hosts.
Deer play an important role in supporting blacklegged tick populations, but they are not considered the primary reservoir for B. microti.
This distinction matters when discussing how babesiosis is maintained and transmitted in the environment.
Near the end of the interview, Rich asks whether FDA clearance could make IGeneX testing more accessible through health insurance.
Dr. Shah explains that obtaining clearance was an important step toward expanding availability.
She discusses efforts to secure billing codes and work with Medicare and other insurers.
At the time of recording, these efforts were ongoing.
Dr. Shah hopes the technology will eventually become available through more local laboratories rather than requiring patients to rely exclusively on specialized testing facilities.
This could potentially reduce barriers involving geography, laboratory access, and insurance reimbursement.
However, FDA clearance does not automatically guarantee insurance coverage.
Coverage depends on factors including the insurer, medical necessity policies, billing codes, laboratory participation, and the specific test ordered.
Dr. Shah repeatedly emphasizes the importance of identifying Lyme disease and other tick-borne infections as early as possible.
Earlier diagnosis can help patients receive appropriate treatment and reduce the risk of certain complications.
She believes diagnostic tools that recognize a broader range of antibody responses may contribute to that goal.
At the same time, no Lyme antibody test can detect every infection, particularly in the earliest stages before antibodies have developed.
Patients with a clinically characteristic erythema migrans rash may be diagnosed and treated without waiting for laboratory confirmation.
Testing is one part of a broader medical evaluation.
IGeneX-associated Lyme ImmunoBlot technology achieved FDA clearance. The iDart Lyme IgG kit was cleared in 2024 and the IgM kit in 2025.
Bands 31 and 34 are included. These represent OspA and OspB antigens used in the tests' interpretation.
The kits use antigens from multiple Borrelia species and strains. This is intended to broaden antibody detection.
The FDA-cleared kits are designed as stand-alone immunoblot tests. They differ from traditional two-tier testing workflows.
Lyme disease and tick-borne relapsing fever are distinct infections. Dr. Shah discusses separate testing approaches for these Borrelia groups.
Babesia remains an important diagnostic consideration. Dr. Shah believes improved testing has contributed to increased recognition.
Other infections may coexist with Lyme disease. Clinical evaluation may include Anaplasma, Ehrlichia, Babesia, and other pathogens when appropriate.
Multiple tick exposures can complicate medical histories. Some patients may acquire different infections over time.
FDA clearance does not guarantee insurance reimbursement. Dr. Shah describes ongoing efforts to expand coverage.
Earlier diagnosis matters. Dr. Shah hopes wider access to diagnostic technology will help patients receive timely care.
For additional information about the technologies discussed in this interview, explore:
Recorded at the 2025 ILADS Conference in San Antonio, Texas, this interview features Dr. Jyotsna Shah, PhD, President and Laboratory Director of IGeneX.
Rich and Dr. Shah discuss the FDA clearance of Lyme ImmunoBlot test kits, the significance of bands 31 and 34, differences between traditional two-tier testing and stand-alone immunoblots, expanded Borrelia antigen coverage, and the importance of considering additional tick-borne infections.
They also explore Babesia testing, the role of wildlife in tick-borne disease transmission, and the possibility of broader access to specialized testing through insurance and local laboratories.
Discover more interviews with leading physicians and researchers through Tick Boot Camp's LIVE from ILADS podcast series.
Better testing can help create a path toward earlier answers, informed treatment decisions, and better patient care.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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