Lyme Disease, Lost Lives, and the Questions We Are Finally Allowed to Ask
- clicks4acause
- Dec 15, 2025
- 5 min read
A Community Education Resource Ahead of the Federal Lyme Roundtable
by Dr. Wendy Jean Schell, FGP | HHC | FN | 4X Lyme Survivor | Global Lyme Advocate
For years, those of us living with Lyme disease have been told some version of the same thing:
“There isn’t enough evidence.”
“Your labs are inconclusive.”
“You should be better by now.”
And yet, our lives told a very different story.
I am one of them.
Before Lyme, I worked, planned, served my community, and trusted my body.
After Lyme, I lost time, health, financial security, and professional credibility—while still being told I was not “disabled enough” to qualify for meaningful recognition or support.
This is not an isolated experience.
It is a pattern.
Lyme Disease Is Not a Rare Inconvenience — It Is a Life-Altering Illness
Lyme disease is the most common vector-borne illness in the United States. But numbers alone do not capture its true cost.
An estimated 40% of people with chronic or persistent Lyme disease are unable to work due to ongoing symptoms such as neurological impairment, pain, fatigue, and cognitive dysfunction. For many missing a diagnosis this stat is sure to be a lot higher.
Many lose careers, homes, savings, and identity—without formal disability recognition.
Patients often cycle through specialists, misdiagnoses, and incomplete treatment while being told their symptoms are “anxiety,” “stress,” or “medically unexplained.”
When an illness can remove a person’s ability to earn a living, think clearly, or function consistently—but still fails to qualify as a disability—the problem is not the patient.
The problem is the system.
Why the “Bioweapon” Conversation Matters — Even If the Answer Is No
Recently, a long-suppressed question has re-entered public discussion:
Did government or military research into tick-borne pathogens play any role in the Lyme epidemic we see today?
This question is not new to patients. What is new is that Congress has finally authorized a formal investigation.
What Changed
A bipartisan amendment, now passed by the U.S. House of Representatives, directs the Government Accountability Office (GAO) to investigate historical U.S. military research involving ticks and tick-borne diseases between 1945 and 1972.
This amendment does not declare Lyme disease a bioweapon.
It does something far more important:
➡️ It allows the question to be examined transparently.
For decades, patients were labeled “conspiracy theorists” simply for asking how a disease could explode so rapidly, spread so widely, and yet remain so poorly acknowledged in policy, disability law, and clinical care.
Whether the answer is yes, no, or inconclusive, truth matters—because truth informs accountability, research priorities, and patient protection.
Congressional documentation: https://chrissmith.house.gov/news/documentsingle.aspx?DocumentID=415162
Check out Bitten : The Secret History of Lyme Disease and Biological Weapons Audible Audiobook – Unabridged Coleen Marlo (Narrator), Kris Newby (Author), HarperAudio (Publisher) - FREE ON AMAZON AUDIBLE
A riveting thriller reminiscent of The Hot Zone, this true story dives into the mystery surrounding one of the most controversial and misdiagnosed conditions of our time—Lyme disease—and of Willy Burgdorfer, the man who discovered the microbe behind it, revealing his secret role in developing bug-borne biological weapons, and raising terrifying questions about the genesis of the epidemic of tick-borne diseases affecting millions of Americans today. While on vacation on Martha’s Vineyard, Kris Newby was bitten by an unseen tick. That one bite changed her life forever, pulling her into the abyss of a devastating illness that took ten doctors to diagnose and years to recover: Newby had become one of the 300,000 Americans who are afflicted with Lyme disease each year.
As a science writer, she was driven to understand why this disease is so misunderstood, and its patients so mistreated. This quest led her to Willy Burgdorfer, the Lyme microbe’s discoverer, who revealed that he had developed bug-borne bioweapons during the Cold War, and believed that the Lyme epidemic was started by a military experiment gone wrong.
In a superb, meticulous work of narrative journalism, Bitten takes readers on a journey to investigate these claims, from biological weapons facilities to interviews with biosecurity experts and microbiologists doing cutting-edge research, all the while uncovering darker truths about Willy. It also leads her to uncomfortable questions about why Lyme can be so difficult to both diagnose and treat, and why the government is so reluctant to classify chronic Lyme as a disease.
A gripping, infectious page-turner, Bitten will shed a terrifying new light on an epidemic that is exacting an incalculable toll on us, upending much of what we believe we know about it.
The Federal Lyme Roundtable — A Turning Point?
On December 15, 2025, the U.S. Department of Health and Human Services will host a public Lyme disease roundtable, with national attention—including participation from Robert F. Kennedy Jr. - titled Invisible Illness — Leading the Way with Lyme Disease, scheduled for
December 15, from 2:00–4:30 PM Eastern Time / 11:00 AM–1:30 PM Pacific Time.
The event will be broadcast live to the public on the HHS YouTube channel:
For many patients, this is not about politics.
It is about finally being heard.
It is about asking:
Why are so many Lyme patients unable to work, yet unable to qualify for disability?
Why are persistent symptoms dismissed when patient data shows long-term impairment?
Why does policy lag decades behind patient reality?
My Story Is Not Unique — And That’s the Problem
I did not stop working because I lacked motivation.
I stopped working because my body could not sustain what my will demanded.
Lyme disease dismantled my health quietly, then completely. I learned—out of necessity—to become my own researcher, advocate, and educator.
Not because I wanted to, but because the system did not leave room for people like me.
When 40% of a patient population cannot work, yet remains largely unrecognized in disability frameworks, we must ask:
What qualifies as “disabled” — and who gets to decide?
Why Community Education Matters
This moment—between the federal roundtable and what comes next—is critical.
Education does not mean jumping to conclusions.
It means connecting dots, honoring lived experience, and refusing to dismiss unanswered questions.
That is why I am hosting a Free Community Lyme Education Event to process what was said, what was avoided, and what it means for patients moving forward.
You Are Invited
Free Community Lyme Education Event
Date: December 17, 2025
Time: 10:00 AM (ET)
Register here:👉 https://www.clicks4acause.com/event-details/free-community-lyme-education-event-after-rfk-jr-roundtable
We will cover:
Key takeaways from the federal Lyme roundtable
What the GAO investigation means—and what it does not
The real-world impact of Lyme on work, disability, and daily function
Practical resources for patients and families navigating next steps
Additional Support
Explore my Lyme Resource Guides — education, tracking tools, and patient-centered support
Schedule a call to learn about Lyme Wellness Protocol appointment if you are navigating symptoms or recovery
Book an appointment to discuss personalized wellness, genetic strategies and advocacy-informed care
Final Reflection
This is not about fear.
It is not about blame.
It is about acknowledging that too many lives have been quietly dismantled for this conversation to remain buried.
If Lyme disease can take a person’s health, livelihood, and future—then the least we can do is ask the hard questions, out loud, together.
Educational & Medical Disclaimer
The information shared in this resource and during associated events is intended for educational and informational purposes only. It is not intended to diagnose, treat, cure, or prevent any disease, nor should it be considered medical, legal, or disability advice.
I am not a medical doctor. I am a Functional Genomics Practitioner, Holistic Health Coach, Functional Nutrition practitioner, and Lyme disease advocate. The perspectives shared reflect lived experience, patient-centered education, and publicly available research and policy discussions.
Lyme disease presentation, progression, and response to care vary widely between individuals. Always consult with a qualified healthcare provider regarding diagnosis, treatment decisions, and disability or employment matters.
References to policy discussions, historical investigations, or government actions are shared to encourage informed dialogue and transparency, not to assert definitive conclusions.
By engaging with this content, you acknowledge responsibility for your own health decisions and understand that education is not a substitute for individualized medical care.
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