Sit Down Before Reading: A Memoir by Dave Bexfield
>> If you are just joining us, you’ve only missed 22 white-knuckle chapters of Sit Down Before Reading, an epic tale-of-tales medical memoir. Briefly, I was diagnosed with multiple sclerosis 17 years ago. And in those 17 years I failed 7 disease modifying therapies, participated in 5 clinical trials, and underwent a life-risking stem cell transplant that required nearly a month of hospitalization, a boatload of chemotherapy, and more than a year of isolation. In total, more than $2 million has been spent on me and my care, all in a fruitless attempt to stave off drowning in disability. No treatment could slow down my harrowing disease, as it stole my legs, robbed me of most of my strength, and left me largely reliant on the care of others as a profoundly disabled wheelchair user. Just one problem: this entire time we’d been treating the wrong illness. I was misdiagnosed. It had been Lyme disease the entire time. I unearthed the error in the most unbelievable of ways that to recap that discovery here in a paragraph would do the saga a monumental injustice. But I get it. You want deets NOW now on how I broke through the seemingly impenetrable wall of getting a Lyme disease diagnosis despite more than a half dozen “negative” diagnostic tests. So by all means, skip to the front of the line, but I highly recommend starting from the Preface.
Inconceivable. Grasp that concept. It’s the only way to prepare yourself for what you are about to learn, and with each revelation on the coming pages, repeat that to yourself—inconceivable—as though you are recreating a scene from The Princess Bride. Part III is truly inconceivable, and the reason even close friends are reticent to read any more of this memoir, peering through fingers to shield their eyes at the very real possibility of a very public implosion. A Nobel Prize? The most significant discovery in modern medicine? Misdiagnoses galore? Discovered by Dave? Our Dave?!? Puh-leeze.…
I know, I’m right there with you. I’ve stopped going into details with friends, and I have even had to rehearse how to divulge my latest revelations to the one person who believes in me most, my wife Laura. On more than one occasion she has stopped me midsentence with, “Okay, now you really are sounding crazy.” Until I start sharing evidence, and then more evidence, and then more until my scientist-of-a-wife is (mostly) satisfied that her husband hasn’t slipped back into psychosis harboring some hairbrained scheme to conjure Agatha Christie in games of Ouija for help in cracking fantastical medical whodunits.
As we plunge into Part III of this memoir, I must provide a clear, unambiguous warning to my readers: THIS IS GOING TO BE HARD. On patients. On their families and friends. On doctors. On researchers. On countless others whose lives and careers have been, or will soon be, forever impacted. There is a darn good reason I titled my memoir Sit Down Before Reading. Because you really ought to.
As this mystery unravels, I have an outsized favor to ask. Instead of outright dismissing this amateur sleuth, search for holes in my research, pick apart my findings, outright destroy them. Pretty please. Try. I double dog dare you. No wait, let’s boldly skip past that and the notorious triple dare right to the ultimate of all dares: the TRIPLE DOG DARE. For anyone who was once a child (or watched A Christmas Story’s tongue-stuck-to-flagpole scene), there is no taller challenge, no higher bar to clear. But a wee bit of warning.
Finding serious flaws in my discovery will be as hard as finding a tick on a Wookiee, and good luck locating that tiny little nymph deer tick—the size of a single poppy seed—without getting an arm pulled out of its socket. (An ironic aside: I came up with that metaphor—deemed by me as my favorite metaphor, if one can have a favorite metaphor—years before I discovered that I had been given Lyme disease by a tick.)
Now, if this triple dog dare sounds suspiciously too much like a setup, a foregone conclusion, well, spoiler alert: it is. That’s because I’ve spent the better part of the past year trying to obliterate my own conclusions, convinced there was no way I could be right while an army of PhD-laden medical researchers could be so wrong. But then every one of my “crap, there goes my hypothesis” gasps got subsequently dispatched upon closer inspection, only further strengthening my case.
Sorry, I know that what lies ahead is going to be unsettling. That’s why I asked my US-now-Australian friend Scott (the stupid-smart pubescent PhD) for advice on how he handles being (hushed voice) wrong. “People don’t generally like being told that they’re wrong,” says Scott, who despite years of living Down Under still retains his American accent. “I find this frustrating, because I actually don’t mind being told I’m wrong. It’s a gift of sorts, because once you know you’re wrong, you can fix things, and you don’t have to be wrong anymore.”
There you go! To those who dabble in the professional medical environs, appreciate what I’m providing to you as a gift, a present (or prezzie for those from Australia or the UK). And yes, there’s going to be a boatload of fixing ahead. Critically, as frustrating as the failures I’m about to reveal are, society is urgently going to need help precisely from those shareholders who are chiefly responsible for these failures.
Dana Parish, best-selling author of Chronic and one of the countless health advocates who laid valuable cairns for me to follow to reach my discovery, recently reminded her followers on Twitter what Lyme disease champion Dr. Ken Liegner once said.
“In the fullness of time, the mainstream handling of Chronic Lyme will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government, and virtually the entire insurance industry have colluded to deny a disease.”
That fullness of time, incredibly, inconceivably, is now. Right now. I am now beyond confident in my research that hundreds of thousands of people infected with Lyme disease have been misdiagnosed with MS worldwide—a number growing with every passing day, the result of not one perfect storm, but a confluence of unimaginable perfect storms violently colliding. The rarest of storms. The immaculate storm.
As the coming pages of Sit Down Before Reading slowly unfurl the stark, shattering, overwhelming evidence of this unspeakable travesty, I’ll try to make sense of it all. When it all began. Who is most likely affected, along with the unmistakable red flags of misdiagnosis. Where these individuals live (or lived or travelled). Why it came to this and how it could continue unabated and unchecked for all these years. And then what, in God’s name, the future holds for all of us.
When you begin to grasp the gravity of what I’m revealing, I expect a number of those in the orbit of health and medicine will experience what so many of us have suffered through with our own (mis)diagnoses. Denial. “Dave is wrong!” Then anger. “Dave is an ass!” Then bargaining. “But Dave, we were just trusting the science!” Then depression. “How can I face my patients, Dave?” Finally, acceptance. “I look forward to watching you get knighted as Sir Dave.”
Denial; anger; bargaining; depression; acceptance (and victory!)
Kind thoughts, but since King Charles isn’t my head of state as I am an American, the title would be merely honorary unless I go through the rigmarole of applying for dual citizenship to become a British national. After losing 17 years to a misdiagnosis and then another one to fighting to get treatment, Laura and I are not looking for rigmaroles. “Dave” will do just fine.
One final word. Despite all my admittedly bloviating boastful braggadocio—and by now you know just how obnoxiously thick I can lay down those triple Bs—the “discoveries” I’ve made are not exactly new or particularly revolutionary. I just happen to be the one to put the puzzle pieces together with the necessary evidence to back it up. On that note, uh yeah. I believe I have undersold my discovery. On December 18, 2022, I woke realizing it is even bigger. Way bigger. That has even me in a state of speechless wonder, disbelief. Me? Speechless? Inconceivable, indeed.