Sit Down Before Reading: A Memoir by Dave Bexfield
Laura buried her head between her knees to keep from throwing up. We were already an hour into our flight from Albuquerque to Houston on our way to MD Anderson Cancer Center, and she was only on page two of the consent form.
“No one has cancer, no one’s dying,” I said, tucking her hair behind an ear. “It’s just a screening visit. We don’t have to go through with this.” I wasn’t sure what to say—I was wholly unfamiliar at being in the role of caregiver. I tried to change the subject.
“Where do you want to go next… Paris?” We’d traveled the world but had been saving the romantic city for a special occasion. “Okay then, Paris. I promise.” I wasn’t helping.
“Shut. Up.” Laura was in no mood to talk or to listen. She was stuck on paragraph six. The “risky treatment” with “very serious complications including death” part. We meant our wedding vows when we said them nearly 20 years earlier, but we never expected to face that potential reality before entering our forties.
We survived that incredible hardship—a pointless stem cell transplant to treat my fictional MS—with such aplomb that an optimist with a skewed sense of humor might even conclude that it was ultimately beneficial. After all, since my immune system was wiped clean, HSCT got rid of my miserable seasonal allergies! And I kept my promise. I always keep my promises. In the spring of 2012, we walked along the banks of the Seine at sunset, sipped espresso in the shadow of Notre Dame, climbed (some of) the stairs of the Eiffel Tower, and marveled at the Mona Lisa in the Louvre. With me being a wheelchair user, the ropes were lifted and we were permitted to see her eye-to-tracking-eye from a mere arm’s length away.
By the time that we were deep into the fight for treatment of my Lyme disease, we had been weathering every storm together for nearly thirty years. But this latest tempest was different. Chronic illness can overrun the strongest of bulwarks, dooming the tightest of relationships. The waves were breaching our fortifications, and lashing ourselves to the mast felt like a desperate option of last resort. Survival was no longer a given.
Laura didn’t need to tell me what was wrong. She didn’t need to deliver the “us” talk. I knew. For weeks, months, I had been semi-present, a shell of a partner. She rightly felt she had transitioned from a wife and care partner to a nurse, a maid, a cook, a servant, a chauffeur. All of my energies had been so focused on getting treated and on penning this memoir, that my quest to right a tragic wrong no matter the cost had become not only unsustainable but also self-defeating. I was taking for granted my best friend and life partner sitting on the couch cushion next to me, something I swore I would never let happen.
“I don’t know what to say, and I don’t have any excuse, and you are right to be disappointed in me,” I said. “I am also not going to promise you that I will try harder. I will show you.”
There was one thing, though, that I refused to show her, at least not yet. Unbeknownst to Laura, for weeks I had been working on another project, a personal letter to UNM Health with a final appeal to get IV antibiotics. Laura was skeptical. Deeply skeptical.
“They’ve flat-out refused to treat you for over a year—I don’t have high hopes,” said Laura. “But whatever. They can just say no. Again.”
That afternoon, without the cautious, sensible input of my irreplaceable and never-to-be-overlooked-again spouse—the one who has edited every page of this memoir, calculated every math problem, doublechecked every obscure reference, and cross-examined the author on every questionable detail—I dropped the letter into an email, cc’ed the world, and clicked send.
The Letter
December 15, 2022
Attn: CEO UNM Hospitals Kate Becker, UNM President Garnett Stokes, and UNMH and UNM Regents
CC: Sen. Heinrich, Rep. Stansbury, Gov. Lujan Grisham, Mayor Keller
RE: UNMH Denial of Care After Being Misdiagnosed for 17 Years with Multiple Sclerosis
Dear Ms. Becker, Ms. Stokes, and Regents, my name is Dave Bexfield of Los Ranchos de Albuquerque, and I am reaching out to you and the leadership at UNM Health Sciences, UNM Hospital, and UNM for assistance as a measure of last resort after having exhausted all practical means for getting treated for a treatable disease in New Mexico.
Briefly, I was diagnosed with multiple sclerosis in 2005/06 by [UNMH’s] and New Mexico’s leading MS specialist. Over the next 17 years as my personal neurologist, he supported everything possible to slow the progression of my aggressive and refractory MS: 7 disease modifying therapies, 5 clinical trials, and a stem cell transplant that required three weeks of hospitalization and a year-long recovery. All ultimately met with failure. For good reason. A year ago, I made the most unlikely of discoveries: I had unknowingly been fighting a rare form of Lyme disease the entire time, not MS.
In late fall of 2021, my primary care physician prescribed oral antibiotics to prevent further progression and, after observing a windfall of gains, clinically diagnosed me with Lyme encephalomyelitis. He quickly reached out to the state’s leading infectious disease specialists at UNMH for assistance, as the recommended treatment for neurological forms of Lyme is IV ceftriaxone, considered by most health insurers and Lyme disease specialists as medically necessary. And therein lies the issue. While my clinical presentation for Lyme disease could not be any more definitive (see right), without a confirmed positive laboratory test—a known issue with Lyme neuroborreliosis—none of your ID doctors have been willing to see me.
I have exhibited an inordinate amount of patience and professionalism in attempting to get appropriately treated, but after a full year of refusals by your infectious disease department to evaluate my case—much less treat me—this is my final recourse. And this is where my story unexpectedly and wildly diverges from predictable outrage and threats of massive lawsuits. Because shortly after I unearthed the source of my disability, I made an even more unbelievable discovery. My case is in no way an outlier, a rare example of an unfortunate misdiagnosis due to doctor oversight or error. Tragically, I’ve uncovered convincing proof that the laboratory tests for Lyme disease—those approved and promoted by the CDC and infectious disease societies around the world—cannot detect Lyme encephalomyelitis, which can seamlessly imitate every aspect of MS, from symptoms to diagnostic markers to laboratory findings.
As one might expect, the results have been calamitous, a confluence of perfect storms. Of the 900,000 people in the United States believed to have multiple sclerosis, I have overwhelming evidence that approximately 250,000 have been misdiagnosed and are instead afflicted with Lyme disease (worldwide those misdiagnosis numbers more than triple). And while Lyme disease is thought to cost Americans upwards of $1 billion a year, my research suggests the true financial cost in the US exceeds a staggering $15 billion annually. The human cost in terms of lives forever upended? Incalculable.
I fully acknowledge that it appears incongruous that an ordinary patient without any medical education or training—living in New Mexico, where ticks and Lyme disease are rare—has single-handedly uncovered one of the largest failures in modern medicine, a discovery that would be worthy of a Nobel Prize. And by incongruous, I mean utterly and inconceivably ridiculous. I agree. But there are other forces at work here. And I am not an ordinary patient.
After my MS diagnosis in 2006, I founded ActiveMSers.org, a not-for-profit, science-based website to help others manage the disease. Today it is one of the longest running and largest MS websites in the world and I am recognized as a leading health advocate. I have been featured in The New York Times, promoted in The Wall Street Journal, and landed on the covers and in the pages of countless health publications. In addition to this advocacy, I have a long and deep relationship with New Mexico. I helped launch the state’s first regular business newspaper, worked with many of its leaders (including regent chair Douglas Brown when I was with United Way), and I was crowned the state’s “Ultimate Insider” by NM’s Tourism Department after an international contest. Most recently, I have been donating my time and expertise working with leaders of both the State and the City of Albuquerque on a major project I developed that will one day reshape New Mexico and our city for generations.
There’s more. I also happen to be a journalist and professional writer with a deep proficiency for parsing and analyzing medical research. And that brings me to the other reason I am reaching out to the highest levels at the hospital, university, City of Albuquerque, and State of New Mexico. As my discovery of rampant misdiagnoses required copious amounts of supportive evidence to be believed, a tidy 3-page article was not going to be sufficient to convey the breadth and consequences of this travesty. So, since May of this year I have been writing and publishing a medical memoir of my experience in near real-time: Sit Down Before Reading.
The ongoing book already has tens of thousands of readers, and that audience is growing with every chapter release (22 and counting). An audio book featuring all available chapters is currently in production and will be streaming online soon. Moreover, fans of all ages have emerged worldwide, eager for answers to this misdiagnosis puzzle of puzzles and rooting for me and my recovery. A five-year-old even created a miniature book in my honor, her request clear: “I hope you will be out of your wheelchair soon” complete with a kid-appropriate backward “s” in “soon.” I do, too, Zoey.
There’s a final wrinkle. One of the emerging co-stars in this epic is University of New Mexico Health. The number of roadblocks I've had to endure to get treated for one of the most widespread bacterial infections in the world has been inexplicable and UNMH will soon be at the epicenter of this too-common travesty. What you have been reading is not only a direct appeal to you, but also a very public appeal in the form of [Chapter 30: Denial of Care]. Although I unquestionably need help from the leading healthcare and medical research institution in the state at this very moment, this is far bigger than me and my health. The extended MS and Lyme disease communities are counting on you as well. And when this chapter is released shortly, collective breaths will be held awaiting to read about your decision.
I understand the contents of this letter appear to be an unwelcome early Christmas present, like a pair of gently used black compression socks, but there is mildly good-ish news. While your nationally recognized UNMH neurologist perhaps made some avoidable missteps early in my MS diagnosis and currently finds himself “challenged” with how to cope with my misdiagnosis, I am prepared to offer a mulligan. That’s because based on the research that is being released next in my memoir, every healthcare organization will soon be facing a similar MS misdiagnosis crisis, some significantly worse than others, and the fault for this crisis stretches far beyond the off-white walls of a neurologist’s office.
Because Lyme encephalomyelitis looks identical to multiple sclerosis, no doctor, even the world’s leading experts, can reliably tell the two apart. Unfortunately, any patient with this type of Lyme—thought to be exceedingly rare, as it is virtually never seen in practice—is then met with a similar, guaranteed, unavoidable fate when the test comes back inevitably negative: an unwarranted diagnosis of multiple sclerosis. And since the existing tests for Lyme disease cannot detect Lyme encephalomyelitis—and one cannot get treated for Lyme encephalomyelitis without a positive test—there is little recourse. Not for me, not for the quarter million Americans unknowingly afflicted with the disease, and not for the near million living with a misdiagnosis of MS worldwide.
That’s beyond unacceptable. As a health advocate with a platform and an unprecedented opportunity, I feel I have an outsized responsibility to do everything in my power to support the extended community of those who have been misdiagnosed with MS like myself. These people need a hero, a champion. Alas, they are stuck with me, an optimistic misfit named Dave who can be a bit of a goof.
A hero, an optimist, and a goof. An optimistically goofy hero?
(Now for a necessary aside, the kind a dear friend might resort to in order to imbue a buddy with some sage advice before they invest their life savings in a startup called Theranos and book VIP tickets to the Fyre Festival. I’m not going to say my case is on par with a once-in-a-generation Bill-Gates-getting-denied-a-NM-bank-loan moment that will directly impact the future of our state… but I’m not going to say it’s not. So please, hear me out.
One of two things must be true: either 1) I’ve just wasted an entire year of my life researching and writing a wildly delusional memoir chasing a hairbrained theory, blowing up 17 years of advocacy, epically embarrassing myself and my family, and unwittingly entering the 2022 Shockingly-How-Is-He-Still-Alive Darwin Awards (a new category established in my honor)—all while shattering any remaining shards of hope for countless thousands afflicted with MS, or 2) I’m right. Let’s play these scenarios out.
If you pass on assistance and I am proven wrong, it’ll make for some fun anecdotes over margaritas and provide a memorable cautionary tale about over-zealous patients. In contrast, if you provide assistance and I am proven wrong, oops. I was briefly overtreated with antibiotics and you’ve dropped an insignificant pittance on pointless therapy on a patient who ultimately hoodwinked you. But at least he had an entertaining story, you can tell yourself over margaritas. Then you can smile in self-satisfaction at my very public implosion.
As for if you pass on assistance and I am proven right, that gets a touch more complicated. Because if I am right, the discovery would then be one of the most monumental revelations in modern medicine, an actual Nobel Prize becomes an actual possibility, and the dropped ball will have even Bill Gates smacking his forehead in disbelief. Worse than denying treatment to a future Nobel laureate, UNMH misses the opportunity to help society and patients desperate for correct diagnoses. Outrage ensues. Elementary schools worldwide initiate a heart-wrenching letter-writing campaign, #SaveDave starts trending on social media, and supporters line Central Avenue with signs that shout SAVE DAVE, HE’S OUR FAVE!!
Artwork credit from left: Nathan (age 5); Lindsey (age 8); Charlotte (age 2)
Then Scott Pelly of 60 Minutes shows up with his camera crew, UNM and the health center become the butt of Stephen Colbert jokes, and Congress calls for an explanation, live, in-person, on Capitol Hill, demanding justification as to why your experts inexplicably are pushing to spend yet another $100K on yet another aggressive MS therapy destined to fail—risking more irreversible damage atop a mountain of physical disability—rather than spending a few thousand dollars on far-safer antibiotics that have the very real possibility of patient recovery with the added benefit of the discontinuation of government disability benefits. Then there will be follow up: the movies, the books, the exposés, the podcasts, the miniseries, all recapping your egregious decision for years and years to come. Oxford even adds unmeduh (/yo͞oˈinˈemˈəˈdʌ/) to its dictionary—when a prestigious institution makes a decision that defies all logic, which then ends up backfiring in predictable, catastrophic fashion, hence the “duh”— and awards it Word of the Year for 2023, narrowly besting joyrified (re: Chapter 13, SDBR).
Or you treat me, I’m proven right, and the opposite of the above paragraph happens—let your imagination run wild with the enormous possibilities. And then breathe a sigh of relief that when Sit Down Before Reading becomes mandatory reading for all future doctors at med schools, UNMH will ultimately have been part of the solution, helping to right an epic wrong. Aside over.)
If you question the veracity of my discovery, please understand that for the past year I’ve been trying relentlessly to poke holes in my findings, even if it meant discrediting them altogether. I’ve only managed to further strengthen my case. If you question my resolve, please refer to the NYT piece recapping my 4-year quest to right another wrong; spoiler: it did not end as planned for my health insurer. And if you question my motivations, financial or otherwise, please know that I have never sought to profit from my advocacy or volunteerism. My memoir is available to be read for free at SitDownBeforeReading.com; I think you’d enjoy it.
Before closing, I realize the timing of my request may not be ideal with the busyness of the holidays, the current trifecta of illnesses, and the recent discouraging UNMH coverage in the Albuquerque Journal. But I urge you to put yourself in my shoes, which conveniently are in near mint condition as I have been using a wheelchair since 2010. For the last two years, I also haven’t been able to use a public bathroom, drive, take a shower, cook a meal, dress myself, or perform countless other mundane daily tasks without the superhuman dedication and assistance of my wife. Her name is Laura. And I made a promise that I would be starting on appropriate treatment before our 30th wedding anniversary. We were married on January 23, 1993. I keep my promises.
Thank you for your time and for considering my proposal. I expect to hear from you or someone from UNMH within the week.
Regards,
Dave Bexfield
p.s. Governor, Mayor, I am the civilian who developed and spearheaded the innovative project presented to your cabinet and staff in 2019/20 and 2021. I remain confident it will ultimately reshape Albuquerque and our state and look forward to assisting when my health improves. Sorry for the delay.
A Painless Choice
On the evening of 8/8/88 I was at Grant Park in Chicago, sardined under a tent with hundreds of soaked, ticketless Chicago Cub fans, waiting for the end of a rain delay that would never come. There I ran into a young woman. We joked that someone didn’t want to see Wrigley Field enter the 20th century and host its first ever night game.
I spent my last hours as a teenager with her, effortlessly blocking out the impatient swarm and the ‘80s shouting match between wet perms and Drakkar Noir. Eventually the big screens went dark and we shared a brief cab ride before parting ways, trading phone numbers and addresses and almost a kiss. I swore I’d see her before I left Chicago, except there was one problem: I had tickets to the following evening’s game, what was now going to be the first official home night game in Cubs history. On my 20th birthday. I had to make a painful choice.
Destiny ensured that I never saw her again.
Four days later and 704 miles removed from The Windy City I met my future wife in that shoebox of a greeting card store in Alexandria, Virginia. Laura and I have been obnoxiously inseparable ever since, still teenagers in love in our 50s minus the decorated lockers and teddy bears named after players on the Washington Capitals (it’s a long story). But now it was my turn to be sick, as I tucked my head between my legs to settle my twisting stomach.
Right then I wanted to remind Laura about that funny story when I got sick all those years ago. That time I couldn’t bear to be apart from her on what was to be our first Christmas together when—in an act of desperation for a young lover—to meet up with her and her family in Florida, I embarked on a solo 32-hour bus ride … with a stomach virus. I wanted to hear her laugh again at how I threw up in my seat, upchucking into the first thing I could grab—a used plastic grocery bag—and how I cinched it tight to carry the warm contents back to the bus’s toilet. And then my surprise when I got there to find it virtually empty but for a few large chunks, as I had squeezed it hard enough that I had inadvertently created a portable puke fountain, one that elegantly sprayed out arcs of barf through the bag’s previously unnoticed pinholes onto every passenger unfortunate enough to have an aisle seat. Worse? The Greyhound had only just left DC.
I so wanted to remind her. But I knew my powers as a storyteller, my talents as a wordsmith, and my deep library of lame jokes to brighten the darkest of her days were going to be of little help at that moment. She didn’t need any of that. She just needed her husband back. And his health.
Lyme disease had already stolen so much away from my life. I was not going to let it steal the most important thing in it. Fate had always worked in our favor before. It had to once again. It absolutely had to.
