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.
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.
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.
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.