Episode 602: When Lyme Disease Is Misdiagnosed: 12 Stories of Hope – Terri McCormick | LIVE from ILADS

What happens when a child spends 10 years searching for a diagnosis, sees 21 doctors, and continues getting sicker while medical tests come back negative?

For author and Lyme disease advocate Terri McCormick, this isn't a hypothetical question. It's part of her family's story—and the experience that inspired her to help others navigate the devastating consequences of delayed and missed diagnoses.

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Terri to discuss her book, Being Misdiagnosed: Stories That Reveal the Hidden Epidemic of Lyme Disease, which shares 12 real-life stories of people whose illnesses were initially attributed to other medical conditions.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores the limitations of Lyme disease testing, the emotional toll of medical dismissal, neurological and psychiatric symptoms, and the importance of finding knowledgeable healthcare professionals.

Terri also shares her experiences advocating for two seriously ill daughters, the challenges of navigating multiple medical specialists, and why families need to understand that a negative test doesn't always provide a complete answer.

At the heart of this conversation is a message for patients and caregivers who feel unheard: Your symptoms deserve to be taken seriously, and you are not alone in searching for answers.

Meet Terri McCormick: Mother, Author, and Lyme Disease Advocate

Terri McCormick is an author, speaker, patient advocate, and ILADS Ambassador whose work focuses on improving awareness of Lyme disease and other tick-borne illnesses.

Her advocacy began when her own children developed serious health problems that remained unexplained for years.

Terri describes navigating countless appointments, researching possible explanations, and struggling to find physicians who could connect her daughters' seemingly unrelated symptoms.

What began as a mother's determination to help her children eventually became a broader mission to support families facing similar challenges.

Today, Terri helps people find educational resources and connect with healthcare professionals experienced in tick-borne diseases.

She also serves as an Illinois State Co-Leader for the Center for Lyme Action and contributes to LymeDisease.org.

Her experiences inspired her to write Being Misdiagnosed, a collection of patient stories intended to raise awareness about diagnostic delays and the human consequences of medical uncertainty.

A Mother's 10-Year Search for Answers

One of the most emotional parts of this interview is Terri's account of her daughters' illnesses.

Her older daughter developed increasingly debilitating symptoms, including:

• Severe, recurring migraines
• Extreme fatigue and prolonged periods in bed
• Difficulty walking and dragging her legs
• Unusual rashes on her hands
• Significant swelling in her hands
• Symptoms that fluctuated unpredictably

Terri explains that repeated Lyme disease tests came back negative.

Despite her daughter's worsening condition, the family struggled to find a clear explanation.

Some physicians recommended psychiatric evaluations, leaving Terri frustrated that her daughter's physical symptoms were not being adequately addressed.

Her younger daughter experienced a different combination of symptoms, including cardiac concerns, skin problems, and similar hand rashes.

Her illness eventually became so debilitating that she missed approximately 60% of a school year.

Determined to continue her education, she listened to classroom lectures remotely from bed.

Terri recalls consulting numerous medical specialists, including neurologists and rheumatologists.

She describes seeing 21 doctors during the family's search for answers.

Eventually, the family connected with a practitioner who ordered testing through IGeneX, which Terri says helped establish a Lyme disease diagnosis for one of her daughters.

Their experience illustrates how difficult it can be for families when symptoms cross multiple medical specialties and no single clinician has a complete picture.

Why Can Lyme Disease Be Difficult to Diagnose?

Rich and Terri spend considerable time discussing one of the Lyme community's most persistent concerns: diagnostic uncertainty.

Many commonly used Lyme disease tests measure antibodies produced by the immune system in response to infection.

These tests can be useful, but their accuracy depends on several factors, particularly the timing of testing.

Early in infection, a person may not yet have developed detectable antibodies.

This means a negative test does not always exclude Lyme disease, especially when symptoms and exposure history strongly suggest an early infection.

Terri describes her frustration when negative test results became the primary reason clinicians dismissed Lyme disease as a possibility.

She believes doctors should evaluate the full clinical picture, including symptoms, medical history, possible tick exposure, and appropriate laboratory findings.

The interview also highlights the challenges associated with interpreting specialized testing and evaluating patients who have been ill for extended periods.

For additional information about available testing methods and their limitations, explore Tick Boot Camp's Lyme Disease Testing Guide.

When a Negative Test Becomes a Barrier to Care

One of Rich's central observations is that negative test results can influence more than medical decisions.

They can also affect whether patients are believed.

When a person continues experiencing serious symptoms despite inconclusive testing, they may encounter skepticism from healthcare professionals, family members, employers, or friends.

Terri explains that this can be especially difficult for people whose symptoms fluctuate.

Someone may feel well enough to participate in an activity one day but be unable to get out of bed the next.

Without understanding that symptoms can change over time, others may mistakenly question the severity of the illness.

Rich and Terri discuss how this dynamic can leave patients feeling isolated, discouraged, and uncertain about their own experiences.

Their message is that persistent symptoms deserve thoughtful evaluation, even when the initial medical investigation does not produce a clear answer.

A negative Lyme test does not prove that someone is healthy, but it also does not establish that Lyme disease is the cause of their symptoms. A comprehensive evaluation should consider both tick-borne infections and other possible explanations.

Being Misdiagnosed: 12 Stories That Reveal the Hidden Epidemic of Lyme Disease

Terri's book, Being Misdiagnosed: Stories That Reveal the Hidden Epidemic of Lyme Disease, brings together 12 real-life accounts of people who experienced prolonged diagnostic journeys.

The book explores how symptoms associated with tick-borne illness may overlap with those of other medical conditions.

Among the diagnoses discussed are:

• Amyotrophic lateral sclerosis (ALS)
• Multiple sclerosis (MS)
• Alzheimer's disease
• Chronic fatigue syndrome
• Sleep disorders
• Psychiatric illnesses, including schizophrenia
• Other neurological and complex chronic conditions

Terri hopes the stories will encourage patients, caregivers, and medical professionals to ask additional questions when an illness remains unexplained or a diagnosis does not fully account for someone's symptoms.

The book also addresses the emotional and social consequences of prolonged illness, including family relationships, medical uncertainty, and the importance of advocacy.

Publication update: Although Terri discussed a planned January 2026 release during this October 2025 interview, Being Misdiagnosed has since been published and is available through her official website.

The Story of David: Decades Without Answers

Terri shares the story of David, one of the individuals featured in her book.

According to Terri, David began experiencing serious health problems around age 10, when he received a diagnosis of spondylitis.

As he grew older, his condition continued to deteriorate.

He underwent repeated medical evaluations, yet his symptoms progressed.

By age 42, Terri explains, David had accumulated an extensive list of diagnoses and was living with significant chronic illness.

She wonders whether earlier recognition of an underlying tick-borne infection could have changed the course of his medical journey.

David's experience raises an important question: What happens when physicians treat individual symptoms and diagnoses without reconsidering whether a broader explanation may be missing?

His story reflects the book's emphasis on persistence, reevaluation, and the importance of listening to patients whose health continues to decline.

When Lyme Disease Symptoms Resemble ALS or Other Neurological Conditions

Another story Terri highlights involves a woman who received an ALS diagnosis.

According to Terri, the woman was evaluated by neurologists, including specialists at Mayo Clinic, and was given a limited life expectancy.

Her daughter subsequently researched other possibilities and helped her pursue an evaluation for Lyme disease.

Terri reports that the woman received a positive Lyme test and underwent treatment.

She describes substantial improvement, explaining that the woman later returned to working approximately 50 hours per week.

Terri presents this experience as an example of why patients facing serious diagnoses may benefit from a careful review of their medical histories and potential alternative or coexisting conditions.

Importantly, this individual story does not establish that Lyme disease causes ALS or that Lyme treatment reverses confirmed ALS. Neurological symptoms can overlap across conditions, and accurate diagnosis requires appropriate specialist evaluation.

The story illustrates the importance of investigating potentially treatable conditions without assuming that every neurological illness is caused by infection.

Neuropsychiatric Lyme Disease and Mental Health Symptoms

Terri also discusses the neurological and psychiatric manifestations that may occur in some people with Lyme disease and other infections.

While Lyme disease is commonly associated with fatigue, joint pain, and other physical symptoms, certain neurological complications can affect cognition, mood, and nervous system function.

Terri explains that two stories in her book involve prominent neuropsychiatric symptoms.

One particularly difficult chapter describes a young man who experienced rapidly worsening psychiatric problems and multiple psychiatric hospitalizations.

Terri believes the possibility of an underlying infectious illness was not adequately investigated early enough.

The story is especially painful because it does not have the hopeful outcome described in many of the other chapters.

Rich connects the discussion to Tick Boot Camp's previous conversations with neuropsychologist Dr. Leo Shea III, whose work includes the cognitive, emotional, and behavioral effects of Lyme disease.

The interview raises questions about the relationship between infection, inflammation, neurological function, and psychiatric symptoms.

Certain infections can cause neuropsychiatric complications, but conditions such as schizophrenia, bipolar disorder, and other mental illnesses have multiple possible causes. They should not automatically be attributed to Lyme disease.

People experiencing new or severe neurological or psychiatric symptoms deserve timely, comprehensive medical evaluation.

Why Family Support Matters During a Diagnostic Journey

Rich suggests that one of the most important audiences for Terri's book may be the families of people living with unexplained chronic illness.

When medical testing is inconclusive, loved ones may struggle to understand why someone remains sick.

Parents may question a child's symptoms.

Spouses may become frustrated by unpredictable limitations.

Friends may withdraw because they do not understand why someone repeatedly cancels plans.

Terri explains that these experiences can intensify the isolation already associated with chronic illness.

She hopes her book will help families recognize the emotional burden of searching for answers and encourage them to respond with greater understanding.

For caregivers, the message is particularly important.

You do not need to have every medical answer to believe that someone is suffering and deserves support.

The Power of Community and Lyme Disease Support Groups

Terri shares that she previously helped run Lyme disease support groups and continues to speak with people searching for information and encouragement.

She describes how meaningful it can be when someone finally encounters another person who understands their experience.

For people who have spent years explaining symptoms to skeptical listeners, hearing someone acknowledge what they are going through can provide tremendous relief.

Terri explains that she regularly receives messages from people asking for guidance.

Her advocacy often begins by listening.

The conversation reinforces the importance of patient communities, peer support, and opportunities to connect with people who have navigated similar challenges.

Support groups cannot replace medical care, but they can help reduce isolation and provide emotional encouragement.

Why Lyme Disease Is Called the Great Imitator

Rich and Terri discuss Lyme disease's reputation as the great imitator.

The phrase reflects the fact that Lyme disease can produce symptoms that overlap with those of other medical conditions.

These may include neurological, musculoskeletal, constitutional, and, in certain cases, cardiac manifestations.

The diagnostic challenge becomes greater when symptoms fluctuate, evolve, or affect several body systems.

Terri's book uses patient experiences to illustrate how complicated these presentations can become.

Rich also shares a memorable phrase from LymeLight Foundation founder Phyllis Bedford, who described Lyme as the "supermarket disease."

Her observation was that people sometimes receive more recognition of their symptoms from others in their community than they do during medical appointments.

The phrase captures a painful reality for some patients: they may feel more understood by people with lived experience than by the professionals they turn to for help.

Terri connects with this perspective because she has witnessed the value of patient-to-patient education throughout her advocacy work.

Helping Patients Find Knowledgeable Lyme Disease Doctors

As an ILADS Ambassador, Terri helps direct people toward educational resources and healthcare professionals with experience in Lyme disease and other tick-borne infections.

She explains that finding an appropriately trained clinician can be difficult, particularly in areas with limited specialist availability.

Even when knowledgeable practitioners are nearby, long waiting lists may delay appointments.

Terri believes medical education is essential to improving this situation.

She discusses the role of ILADS conferences in bringing together clinicians, researchers, and advocates who want to improve the recognition and treatment of tick-borne illnesses.

Patients seeking care can explore the ILADS website for educational resources and information about finding healthcare professionals.

When choosing a clinician, patients should consider professional credentials, diagnostic methods, treatment recommendations, and whether the provider offers an evidence-informed approach that respects patient concerns.

Why Terri Believes Awareness Is Creating Hope

Despite the difficult experiences described throughout the interview, Terri and Rich conclude on an optimistic note.

Rich reflects on changes he has witnessed during years of interviewing Lyme disease patients, physicians, researchers, and advocates.

He explains that he now encounters more people actively working to improve awareness, education, testing, and treatment.

Terri shares his optimism.

She believes patient advocacy, public education, and storytelling can help families recognize when further medical evaluation may be necessary.

Her book is part of that effort.

By sharing the experiences of people who struggled for years before receiving additional answers, she hopes to encourage more informed conversations between patients, families, and healthcare professionals.

The message is not that every unexplained illness is Lyme disease.

It is that patients deserve careful investigation, compassion, and the opportunity to pursue answers when their symptoms remain unexplained.

Key Takeaways

• Delayed diagnosis can have serious consequences. Terri's family spent years searching for explanations while her daughters experienced worsening symptoms.
• Lyme disease testing has limitations. Test results must be interpreted in the context of symptoms, exposure history, timing, and other clinical information.
• Medical dismissal can deepen suffering. Patients may experience isolation and loss of support when their symptoms are questioned.
• Lyme disease can affect multiple body systems. Some manifestations overlap with neurological, rheumatological, and other conditions.
• Families play an important role. Understanding and believing that a loved one's symptoms are real can make a meaningful difference.
• Patient stories can encourage further investigation. Terri's book highlights the importance of considering additional explanations when a diagnosis remains uncertain.
• Community provides validation. Support groups and patient advocates can help people feel less alone.
• Education and advocacy create opportunities for change. Terri hopes her work will improve awareness and encourage earlier recognition of tick-borne illnesses.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

Rich interviews Terri McCormick about her family's diagnostic journey, her work as an ILADS Ambassador, and the experiences that inspired Being Misdiagnosed.

The interview explores the challenges of Lyme disease testing, medical dismissal, neurological symptoms, caregiver support, and the importance of patient advocacy.

It also highlights the role of community and storytelling in helping people navigate complicated medical experiences.

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