This week, Terri McCormick joins LymeDisease.org as a writer and advocate. What follows is her first blog for us.

Like so many people in the Lyme community, my path here did not begin with a career plan or an academic interest. It began when my children became sick and no one could explain why.

Our search for answers began when the middle two of my four children were just four and six years old. Over the next decade, I took them to more than twenty specialists and made countless emergency room visits.

As their health steadily declined, they were given an exhausting list of diagnoses, including chronic fatigue syndrome, migraines, fibromyalgia, lupus, POTS, and other autoimmune conditions.

With no clear answers emerging, one of them was repeatedly referred to psychiatry, as if her very real physical symptoms were psychological rather than biological.

Finally, a diagnosis

It took almost 10 years after their initial tick bites before these two were finally diagnosed with Lyme disease and other tick-borne infections.

But just days later, my youngest child, then 10 years old, was also bitten by a tick. Within a short time, he developed chest pain, shortness of breath, and a rapidly spreading, stretch-mark-like rash.

Despite our urgency and recent experience, he was sent home from the emergency room with a single dose of doxycycline. Not a full course of treatment. Just one pill.

In the weeks that followed, his personality changed dramatically, and his perception of reality became distorted. He became fearful, paranoid, and prone to intense anger.

After weeks of worsening symptoms, we finally got him in to see a Lyme-literate physician. Testing revealed Lyme disease and the co-infection Bartonella. That experience permanently changed how I understand Lyme disease and exposed how often it is missed or misunderstood within conventional care.

My deep dive into tick-borne illness

That period marked the beginning of my deep dive into tick-borne illness. Fear, love, and determination pushed me to learn everything I could. I became a voracious student, reading constantly, attending ILADS conferences and educational seminars, and immersing myself in both the science and the lived realities of Lyme disease.

That journey eventually led me to the Trinity School of Natural Health, where I pursued board certifications in holistic health and Lyme disease.

As my knowledge grew, so did the number of people who reached out for help. Over the years, I have mentored countless individuals who were misdiagnosed with chronic illnesses and left without answers.

Many were told their symptoms were autoimmune, neurological, psychiatric, or idiopathic, with no unifying explanation. Understanding Lyme disease as “the great mimicker” helped me guide people toward clinicians trained to recognize the complex, multi-system nature of tick-borne illness.

I also served as a Lyme disease support group leader in Illinois, helping create spaces where patients and families could learn, connect, and feel less alone. Through that work, I saw firsthand how often people are dismissed or left to navigate complex illness on their own, and how powerful it can be when patients are believed, and their experiences are taken seriously.

A systemic problem

Listening to these stories, again and again, made one thing clear. The problem was not rare. It was systemic.

Those stories ultimately led me to write a book. Being Misdiagnosed: Stories That Reveal the Hidden Epidemic of Lyme Disease shares twelve real-life stories of people who were given chronic disease diagnoses, only to later discover that tick-borne infections were driving their illness.

Scheduled for release in early 2026, the book aims to shine a light on the diagnostic blind spots that continue to harm patients and families.

Lyme disease changed the course of my life in ways I never expected. While my children are doing better today, the impact of watching them suffer for so many years without answers has never fully left me.

Once you have lived through repeated misdiagnosis and watched your children struggle, it becomes impossible to stay silent. Sharing what I have learned feels less like a choice and more like a responsibility.

Working with LymeDisease.org

That is why LymeDisease.org matters so deeply to me. I am proud to be working with an organization that is truly patient-powered. Through MyLymeData, more than 20,000 patients have shared their lived experiences, helping build one of the largest patient-driven Lyme disease research registries anywhere.

As MyLymeData marks its tenth anniversary, it stands as a powerful example of what happens when patients are placed at the center of research, education, and progress.

As a writer and advocate with LymeDisease.org, my goal is simple. I want to keep learning and sharing what I learn with you. I hope to provide clear, trustworthy information that helps people make informed decisions about their health, while shining a light on illnesses that continue to be misunderstood and misdiagnosed.

Above all, I hope to bring clarity, compassion, and understanding to this community and amplify the voices of patients and caregivers who are too often unheard. I am deeply grateful to be here, and I look forward to learning alongside you.

You can find out more about Terri’s forthcoming book at her website.