Part II: Introduction

Updated: 22 hours ago

Sit Down Before Reading, A Memoir by Dave Bexfield


“I don’t have MS. I have Lyme disease.”


After uttering those words, I could not have imagined, much less conceived, that I had merely opened up another box, only not one with a key inside. Pandora's Box.

Rock cairns in Sedona Arizona

When I wrote in the preface of Sit Down Before Reading that “countless brave and beyond-determined advocates before me have tried to breach the rigid armor of the medical establishment only to see their stones of alarm and outrage harmlessly ping off,” I had no concept of the magnitude of this fight.


How did this happen? How could this happen? A single misdiagnosis can be chalked up as collateral damage, a one-off oopsy falling through the health cracks, an unfortunate consequence of policies enacted to “smartly” avoid overtreating, overspending, all under the guise of evidence-backed guidelines. Guidelines proposed by a narrow group of researchers fueled by questionable science and hubris. Guidelines then enthusiastically embraced for their cost savings by health insurers. Guidelines then guardedly accepted as scientific consensus when actual patient experiences suggest nothing remotely resembling consensus.


Unsurprisingly, I’ve discovered that my case—17 years living under a multiple sclerosis diagnosis that has left me profoundly disabled, requiring me to use a wheelchair for the past dozen years—is nowhere close to a rare, regrettable miss. Nowhere close. Those innocuous Lyme disease guidelines now on official CDC letterhead, buoyed by flawed diagnostic assumptions with vociferous champions barking from their bully pulpits to strangle dissent, have since produced a cascading effect of misinformation with calamitous consequences.


Doctors, from neurologists to infectious disease specialists, unwittingly set up to fail. Medical researchers blindly chasing false leads, red herrings. Clinical trials unknowingly tainted by inappropriate volunteer subjects. Health insurers, who thought they were saving money, duped into overspending untold billions of dollars. Government-funded disability benefits extended to individuals who should have never become disabled. And innocent, often unsuspecting patients with myriad, frustrating health struggles, their lives forever upended, their finances often decimated.


I now feel frighteningly confident that thousands of my friends... have been misdiagnosed.

After 17 years, I finally knew my disease. I knew the treatment that would help heal me. And I knew that I had the staggering potential to be cured. But to have any hope of rising from my wheelchair to walk again, I had to step into the dystopian underworld of a Lyme disease diagnosis—one that is checkered with dismissive doctors, charlatans, and regimens bordering on voodoo magic—to find those courageous specialists willing to risk their professional reputations (and potentially licenses) to help treat those the medical establishment has deemed untreatable. Once I made that commitment, I made a personal promise. That those lost 17 years of good health were going to count for something. That I was going to be the catalyst to right decades of immeasurable wrongs foisted on countless others.


Hope sign in Norway

Now, before you flippantly label me as "just another" delusional, aggrieved, pin-all-my-health-problems-on-Lyme-disease patient, the coming pages will systematically and methodically lay out my case with stark, indisputable proof. But not just my case. While multiple sclerosis is a very real and often debilitating disease affecting more than two million people worldwide, there is a subset of patients diagnosed with MS who don’t have the disease. An uncomfortably large subset.

Dave Bexfield wading through a stream with trekking poles
The last time I walked with just trekking poles: 2009

Because I now feel frighteningly confident that thousands of my friends, specifically and conservatively more than a hundred thousand of my friends, have been misdiagnosed. Why do I believe this? As I waded deeper into the horrifying detritus of other lives crushed by my newly discovered disease, struggling to make sense of my new reality, I inadvertently, fortuitously, unbelievably, uncovered evidence—powerful, compelling evidence—of what could be one of the greatest failures in the history of modern medicine.


It’s inconceivable that one man without any formal medical training or education can rewrite healthcare when so many others have tried without success. Preposterous that one man can avoid the machinations of a fractured medical establishment and all its smothering tentacles to make any substantive impact. But what I do have—to paraphrase a certain Liam Neeson character—are a very particular set of skills, skills I have acquired over a very long career as one of the world’s leading health advocates for multiple sclerosis, skills that make me a nightmare to those who have wronged me or any of my 2.8 million friends currently living with an MS diagnosis.


And I’m not one man. I’ll be bringing that growing army of people incorrectly misdiagnosed with MS with me. Along with those undiagnosed desperately seeking answers. Those diagnosed with Lyme disease, purportedly “cured,” and then forgotten. And the outraged survivors of Lyme disease who’ve already persevered the gauntlet, as well as the friends and family of all of those affected. Do not underestimate my resolve, our resolve.


If you are reading this and you are willing, I’d like to make you my newest recruit. Join me. And if so inspired, please share this as widely as you can. With your medical providers, your health insurers, your fellow warriors and online communities, your Congressional representatives, your friends, your family, your book club, your mountain bike partners, your seatmate on the subway aimlessly scrolling on his or her phone looking for a new cause to get incensed about. The time to make noise is now. Together let’s end this fight. Once and for all.



Reader Notes:

  1. This story is unfolding in near real time and is still being researched, fact-checked and written, as more evidence is being gathered. Thank you for your patience, as I am working as quickly as I can. If you have information, experiences, or expertise relevant to the case I am preparing, please contact me at dave@activemsers.org.

  2. Please know that I will be unable to respond to most personal requests or provide any medical advice. Apologies! I’m beyond busy and I’m not a doctor. However, I strongly encourage you to post public questions and thoughts on our community Misdiagnosed forum at my ActiveMSers website or on any of our social media pages: Facebook, Twitter, or Instagram. Thanks for your understanding.

  3. Next-step recommendations will be forthcoming based on the evidence uncovered and will be revealed in future chapters. Due to standard testing insensitivity (or acceptance of nonstandard diagnostics), immediate testing at this stage for Lyme disease, via blood or spinal fluid, may not be beneficial.

  4. New chapters, along with a preview of the next chapter, are scheduled to release Wednesdays. Expect Part II to consist of approximately 10 chapters. All published chapters can be viewed here. If a release needs to be delayed due to unforeseen circumstances, it will be noted on this page.

  5. The three drawn-to-scale ticks on the original cover immediately below, nearly invisible to the naked eye and easily missed, are the size of a male blacklegged tick, a scant 1/16 of an inch. Part II’s updated cover (scroll down) features the female, who measures a robust 1/8 of an inch, and is in color.

Sit Down Before Reading book cover without ticks


Sit Down Before Reading memoir book cover with ticks

 

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Part I: Preface

Chapter 1: Sit Down Before Reading

Chapter 2: 100 Meters

Chapter 3: Operation Overturn

Chapter 4: The Widow Maker

Chapter 5: Pit of Despair

Chapter 6: Breaking Brain

Chapter 7: Final Hail Mary

Chapter 8: Checkmate

Chapter 9: Fate, Meet Destiny


Part II: Introduction

Chapter 10: Zebra Found

Chapter 11: Crazy Not Crazy

Chapter 12: Roll of the Die

Chapter 13: Joyrified

Chapter 14: A Nobel Act

Chapter 15: Jenga

Chapter 16: Never Ever

Chapter 17: Ipso Facto

Chapter 18: Taking a Stand

Chapter 19: The Writing is on the Wall

Chapter 20: Clear Eyes, Full Heart

Chapter 21: An Improbable Proposal (coming 10/5)