Sit Down Before Reading, A Memoir by Dave Bexfield
I can still recite the TJ Fannon Heating & Cooling-sponsored starting nine from memory. Eddie Bunn pitching, Luis Gonzales catching, his brother Riggo at third, John Schott at short, me at second, Andy (what’s his last name again?) at first. Patrolling the outfield: Jeff Persell, Buck Blackburn, and Joe Hamidi. The coach: Dad. He had the hairbrained idea of assembling a ragtag baseball team of high schoolers in the twilight of their teens—too old for Little League, too young to drink beer and play softball. But boy did we love our national pastime, often practicing until dusk bled to dark, the cleanest of balls our only source of light.
Each player has a story. Eddie’s was one of the craziest. He would go on to moonlight as a repo man while becoming the country’s leading college punter, later getting selected in the third round of the NFL draft. Buck, who struggled with type 1 diabetes, would be the first one to introduce me to international travel, as he allowed me to tag along on a trip to Toronto to see a girl he was crushing on. Then there was Jeff, who coined the title of this chapter and would go on to become the best man at my wedding.
Me and Buck (and his girl crush) in Toronto.
The original “Bexfield twist” was inspired by my lack of fielding prowess on the baseball diamond. Whether Dad hid me at second base or out in right field, pop flies over my head could have been outtakes from Benny Hill as I twisted and turned every which way, corkscrewing myself into an inevitable error to guffaws from teammates. I didn’t mind the gentle teasing—Jeff was my longest-tenured friend by a country mile.
We grew up playing Little League together on ballfields in Monterey, CA, where our dads were stationed, saying our military-brat forever goodbyes in sixth grade after our fathers were transferred. It wasn’t until our moms randomly ran into each other at an Alexandria, VA, sporting goods store that our friendship renewed, 2,908 miles and several years later. Jeff has been a steadfast friend ever since we peach-fuzzed, can’t-wait-to-start-shaving highschoolers reunited. We’ve since needed to lean on each other more than we would prefer. His health issues surfaced first, as he was diagnosed with Hodgkin’s lymphoma, leaving me to be the first to try to find the baseball lost in the sun.
I couldn’t. Just when he needed the support most, I was absent. Living in Albuquerque wasn’t a good excuse. Not having the time to fly home to see him wasn’t a good excuse. Short on funds, short on vacation days, short on whatever weren’t good excuses. I was scared—for him, for us, for our mortality. He survived with the help of a stem cell transplant and has carved out a nice life for his family. Unselfishly, he also carved out time to help me through each stage of my arduous journey with MS/Lyme, even providing pointers when I, too, underwent a transplant.
He's the definition of what it means to be a friend. Buck, too. When I wrote him in those fraught early days of my MS diagnosis, asking what it was like to inject yourself, something he does when he needs insulin, Buck immediately picked up the phone and called. Before talking the other day, we last touched base five years ago, but we’ve been unknowingly thinking about each other. By happenstance, he tried texting photos of our Toronto trip a few months ago to my landline at the same time I was working on my autoimmune chapter, one that portends to change what it means to be a diabetic.
It's funny how the twists and turns of life can be so unexpectedly synergistic. After all, my greatest achievement in science until now was showing up for my 7:30 a.m. Biology 101 class on time, which happened rarely given my grades in that class, an overly generous C. Honestly, I shouldn’t have figured out any of this Lyme stuff. Lyme disease has had unfettered access to our bodies and brains for thousands of years and the table was set for it to march unimpeded for thousands more. Despite the concerted efforts of gaggles of scientists, we only discovered the existence of Borrelia burgdorferi spirochetes barely 40 years ago, a mere blip in the scheme of world history. To date, even the most advanced tests have been unable to reliably detect the all-but-invisible bacteria, allowing it to spread unchecked. The one thing, the absolute one thing those spirochetes couldn’t do: create someone who would have the power to blow their cover. Even then, everything would have to happen just so. Its secret should have been secure for another millennia.
Welp, Lyme disease created me. And everything did indeed happen just so, as I detailed in Chapter 16: Never Ever. Still, to most readers this doesn’t make sense, at least scientific sense. The first rule of my SHARDs doctrine—sound science makes sense—appears to be violated. But appearances can deceive, and to understand that we need to investigate SHARD’s second tenet: history harbors hints. There’s a gobsmacking reason Lyme disease, and by extension autoimmune diseases, are concentrated in first-world, industrialized nations. Fueling these nations’ advancement—an alternative to the theory proposed in the Pulitzer Prize-winning book Guns, Germs, and Steel by Jared Diamond—the unlikely spirochete.
All of you are familiar with the tired trope of the disabled genius. “In the world of fiction, physical impairment = scientific credibility,” explains TVtropes, a website dedicated to such things. “Anyone in a wheelchair will possess super intelligence to compensate for his disability. This allows the character to remain a vital part of the cast without being expected to do anything physical.” Professor X, the bald, wheelchair-using brain behind the X-men, is a fictional one, Raymond from Rain Man is based on a real person, and then there is world-renown ALS legend Stephen Hawking and his voice synthesizer. But there's a reason cripple/mental disorder tropes become tired, overdone, predictable. Because they are not far from the truth.
As I was struggling to understand what was happening to my brain—my dear wife can confirm that while I have elements of cuteness, I don’t give off any vibes of next-level smartness (despite using a wheelchair and having the clear need to compensate for my disability with super intelligence)—I started to research the frequency of sickness with luminaries of the past. I had already discovered that FDR’s polio diagnosis was wrong, and that his “updated” diagnosis of Guillain-Barré syndrome was wrong as well, as I revealed in Chapter 37. But how many other famous leaders—including dictators and tyrants—had been mired with health issues?
Pretty much most of them, with Lyme-like symptoms (or autoimmune-like symptoms, if you prefer), and, without fail, the ailments were “mysterious,” producing a vast array of symptoms. Sickness ripples through US presidents, far too many to list, but typically the sicker, the greater. John F. Kennedy had been awash with debilitating health problems since his youth, eventually getting diagnosed with Addison’s disease, an autoimmune condition, and myriad other ailments, from constant urinary tract infections to agonizing lower back pain. Thomas Jefferson was “the victim of a panoply of disorders including episodic headaches, dysentery, rheumatism, multiple bone fractures, malaria, possibly tuberculosis, dental problems, diabetes and urinary tract obstruction,” report researchers. “Intermittently he experienced anxiety, depression and insomnia; he was an anxious, striving perfectionist, a compulsively controlled man.”
Spin your desk globe, randomly stick a finger on a country where ticks commonly are found, and Google a favorite leading light or notorious evildoer from that area with the search term: “health problems.” Be sure to record your surprised reaction and upload it to your favorite social media platform, #NoWayDave. Nearly everyone is sick, sick, sick. Julius Caesar had “weakness in the limbs, dizziness and headaches” () to go along with his “mercurial personality” and bouts of depression. Adolf Hitler? Predictably a boatload of issues. “Hitler suffered from various ailments like irritable bowel syndrome, skin lesions, cardiac dysrhythmia, coronary arterial disease, syphilis, borderline personality disorder, amphetamine addiction, and importantly, Parkinson's disease.”. All his symptoms are inseparable from Lyme. It doesn’t matter where in time you look, from Napoleon to Churchill to Stalin, sickness is the unmissable common thread.
The striking health pattern extends to the thinkers and creatives. Most of the world’s greatest minds, fueling most of the world’s greatest discoveries, had signs of the greatest imitator of diseases. The same is true for the greatest artists, musicians, writers, and visionaries—sickness follows like a well-heeled dog. Their talent is so well known that their first names aren’t needed: Einstein, da Vinci, Franklin, Michelangelo, Beethoven, van Gogh, Hamilton, Shakespeare, Edison, Joyce, Mozart, Darwin. Charles Darwin was so sick his mysterious ailments earned its own Wikipedia page. Poor Chuck. At least he rationalized that it was helpful in a somewhat demented way….
For much of his adult life, Charles Darwin's health was repeatedly compromised by an uncommon combination of symptoms, leaving him severely debilitated for long periods of time. However, in some ways, this may have helped his work, as Darwin himself wrote: "Even ill-health, though it has annihilated several years of my life, has saved me from the distractions of society and amusement."
I, personally, prefer distractions. And if I had been able to amuse myself snowboarding or trekking to quaint villages in the Alps, rest assured I would not have written this memoir. Laura and I no doubt would be traveling, Wi-Fi would be sketchy, and I certainly would not have found supportive evidence for all those discoveries.
Our longtime friends Fate and Destiny had other plans.
Bad Times
Lyme disease has irreparably shaped society and changed world history—sometimes for the better, sometimes for the worse. And it continues to. You certainly know many of those infected with the disease for their immense, otherworldly talents… and underlying health conditions, conditions that may be so serious that they have warped public opinion and legacies. I won’t name names. Okay, maybe just one name. There is a gentleman diagnosed with autism (no, not that one, but yeah) who uses his talents to play professional poker. Today he is one of the world’s best. The story of Dan Cates was published in May of 2023 in The Washington Post.
When he was 29, Cates was on an airplane watching a time-hopping science-fiction film called “Looper,” in which a character kills himself to spare the world of future misdeeds. He matter-of-factly says he had an epiphany of sorts, suddenly recognizing the connectivity of everything — of people, of their actions, of their energy — even of history. “It just blew my mind. And I had this state of, like, ecstasy,” he says. “I wasn’t on any drugs, but it was very lucid. I could think super clearly for four days straight. This is a natural phenomenon. Apparently, it happens — I looked it up — but it’s very rare.”
I bring this up because what Mr. Cates describes is exactly what it felt like to me when I was under psychosis’s smothering spell for those six unsettling weeks in the fall of 2021. Memoirs about bipolar disorder, those from the perspective of the patient, were so uncannily similar to my own mental break that I nearly strained my neck muscles from nodding repeatedly. I started to tell you about the transformative experience in Chapter 6: Breaking Brain… until my editor wife wisely said to save it for later.
This is later.
My twisted brain wobbled off its traditional axis shortly after my official diagnosis in 2006. I could write a book about all the little clues I overlooked or shrugged off about my hypervigilance, attention to detail, and creativity. There are standout moments, like that game-changing idea I presented to Nissan execs in 2008 (the project died with the Great Recession) or that epic 4-year fight a few years later with my health insurer that ended with a story in The New York Times and $500,000 in my bank account. But there was one moment so mundane, so forgettable, that I remember it like yesterday.
I was preparing breakfast with Laura one workday morning in 2017, sitting on my walker in front of the kitchen sink, when I asked her an odd question.
“Am I getting funnier? I feel like I am getting quicker, snappier.” My wife nodded in agreement. I continued my thought. “MS is supposed to make your brain work slower. But it’s speeding up. Weird….”
The following year my brain often slipped into another gear, churning on problems it had no business trying to solve. I was familiar with that feeling. After my insurance fight, and for weeks after the money had been deposited, I was still looking for that ultimate smoking gun that would remove all doubt that my insurance company had lied to me. Even though I had already won, my brain knew it was there, knew where to look, and it wouldn’t stop until it succeeded. It eventually did, of course, and I celebrated this unnecessary discovery with all the fanfare of a private birthday party you give yourself, only sans candle, sans cake.
I could tell you other crazy stories, a slightly uncomfortable emphasis on crazy, but let’s jump to the unlikeliest of catalysts: the television show Breaking Bad.
I’ve already touched on how the popular TV series and prequel Better Call Saul affected my brain, but I purposely left out some rather key moments on the advice of Laura. Like the fact that after I returned from an overseas trip in 2018, when I came to the realization that the show—and the deceptively alluring draw of New Mexico—was a far bigger deal internationally than anyone realized, I immediately got on the phone and called for an urgent meeting … with my barber. Two days and two sleepless nights later, Joe and his wife were sitting in my living room listening to me wax on about set-jetting, the emerging trend of fans traveling to filming locations of their favorite show. I’ll spare you the details, but my spinning brain had to share this news with literally everyone I knew, Joe—my monthly trusted confidant—was just the first of dozens.
My revved-up brain kept jumping from idea to idea, refining and then refining some more. At one point, around the release of the Breaking Bad film El Camino, it jumped so far off the rails that the obsessiveness became overwhelming. I knew something was off, scary off. It wouldn’t shut down even when I tried to steer its attention to other mundane topics unrelated to the fictional trafficking of methamphetamine. My brain delivered a hard nope. Instead, it churned out an idea for the next installment of the franchise, an idea so mind blowing and original—I couldn’t find a single example of my brainstorm on fan sites—that it will rewrite how studios approach extending established series on television and in the movies. It was so seamless and easy to execute, I was shocked that it had never been done before. I remember thinking, Where the hell did that come from? (I’m happy to share the idea with the show’s creator, Vince Gilligan, if he is interested. Have your people contact my people, not that I have people.)
My frenzied 52-year-old brain eventually reached its breaking point, pun not intended, during that frightening late summer spell of psychosis in 2021. But here’s what I didn’t tell you.
I had already been sharing in meetings the broad idea of the importance of set-jetting with City of Albuquerque and State of New Mexico leaders. Indeed, I was on the cusp of presenting to Sony Entertainment to lobby for a Breaking Bad immersive experience—complete with an interactive museum in the cavernous Machine Shop at the historic Rail Yards (a local architectural firm even created a mock-up to show what the space might look like in the immense building)—when, without hearing the pitch, Sony said they were uninterested in my idea because they were interested only in selling intellectual property (IP) rights.
That evening, demoralized and frustrated, is when my amped-up brain developed a world-beating platform for comprehensive immersive entertainment that took my breath away; it was game-changing storytelling on an entirely different level. No, no, there had to be holes, something I missed. So I poked for weaknesses. And poked. And poked. Nothing. This radically simple idea was unbelievably sound, eminently doable, and, refreshingly, the antithesis of the metaverse and anything related to virtual reality. Done the way I envisioned, it would not only revolutionize intellectual property, event planning, and entertainment, but also benefit the City of Albuquerque and the State of New Mexico in incalculable ways.
The next morning, my mouth filled with cotton, I remember trying to grapple with this new reality. How could I have possibly figured all of that out, in a single night, and with virtually zero experience in the subject matter? HOW?!
At that moment I knew that something very special was happening in my brain. Something very special, but also very frightening and unnerving. Nobody just wakes up with a billion-dollar idea, especially a billion-dollar idea in a field far removed from their areas of expertise. My hands started shaking, my wheelchair hard to roll. I waited to tell Laura about my discovery until after breakfast, until after reading the paper. I grabbed both of her hands, squeezed them tightly, looked her in the eyes, and told her, in as many words, that soon our lives were going to change forever.
As I unpacked my groundbreaking idea, her eyes changed, from curious to resigned. Then did I detect sadness, pity? Maybe I am plumb crazy, I told myself. My closest of friends would set me straight.
“I’ll definitely invest.” Drew was not setting me straight. Neither were any other close friends. So, I unveiled my idea to the Breaking Bad team, one made up of far smarter and savvier business minds. Welp, I didn’t know it was possible to get the equivalent of a full-throated, screaming standing ovation on a Zoom call, one complete with the pounding of desks so fierce that it looked like the Breaking Bad team was in a major earthquake. I still didn’t believe it. So, I decided to reach out to a unique friend in Seattle. As an original employee of Microsoft and veteran of successful tech startups, he would set me straight.
“Dave, I’ve been pitched hundreds of ideas. Hundreds. Only a few had any true potential. But this. This is different…. This is brilliant.” The tech guru and Stanford grad was speechless. “At some point this idea eventually had to get discovered—probably years from now—but you did it… unbelievable.” His voice trailed off. “Wow.” He said no matter what direction I took to bring it to market, the idea was worth countless millions. “Even if someone steals it, you could go the Winklevoss twins route and still get paid.”
Over the coming week, I finetuned a revised presentation to Sony when reality finally set in: I was too sick to see any of it come to fruition unless I felt better. Only then did I steer my white-hot brain, still streaking at a full gallop, to my MS and unexplainable spate of UTIs. That night, in all of five minutes, I made that fateful discovery that I had an active infection, and that MS was not the source of my UTI troubles. The next morning, I miraculously stumbled on Ross Douthat’s column in the NYT about his unexplained illness, and the rest is history. This is how I told the BrBa team.
And in another wholly unexpected update, I also may be in need of finding a new career. Crazy follows me, remember?! I’ve had some recent health issues, issues you may have noticed at the beginning of the month (I wasn’t quite myself). So I furiously trained my brain solely on that and made a shocking discovery over the weekend. I don’t have MS. I was misdiagnosed 17 years ago. I have Lyme disease. If you know of any experts, I’m all ears. Coming to terms with this brand new reality.
A couple months later, resigned, I had to tell them that now was not the time. “As you expected (but stubborn me didn't want to admit), trying to juggle our Breaking Bad endeavors that will one day reshape our city and state with a life-changing misdiagnosis was not terribly practical. My focus near term will remain on my health, and the gains just keep coming. This is really happening.”
In February of 2022 I started penning Sit Down Before Reading, my landmark Breaking Bad/intellectual property brainstorm put on indefinite hold. You’ll know, though, when it resurfaces. Terms like groundbreaking, revolutionary, game-changing, and industry-upending will be used to describe what I’ve developed. It will become a model for others to follow, setting a new standard for studios and streaming platforms to follow, even cities. It will be that big. It will earn billions. The only question that remains: will it be my original idea with a visionary series of unique built-in programs to benefit community, local business, creatives, and society… or a profit-first facsimile geared primarily to aid investors and stockholders?
An HB Explainer
For the record, my “third floor”—how my high school physics teacher Dr. Manu Patel referred to the mind, as in, “David, use your third floor!”—never did fully power down after doxycycline lifted me from the depths of overwhelming mental distress. The antibiotics merely crimped the unsustainable flow of ideas during that frightening time, permitting them instead to leak into my head in a more manageable, and less psychotic, way.
My diseased brain likes to work on problems in the background. Think of a bank of computers painstakingly mining for Bitcoin, only the reward is more tangible and doesn’t require the power consumption equivalent to electrifying an entire town in Belize. In the morning it happens when I’m sipping coffee, reading the paper, glancing at yesterday’s recorded baseball or hockey game. At night, in that familiar limbo between full consciousness and sleep, it’s not uncommon that it spits out a fully formed revelation or two to be vetted the next day.
This sounds whackadoodle absurd, I know. I’m just relaying what the experience of landing on a hallelujah booyah feels like. I like to imagine that Taylor Swift may have even alluded to it in her appropriately titled song Epiphany. According to Wikipedia, her most acclaimed album, Folklore, “was conceived by Swift as figments of mythopoeic visuals in her mind, a result of her imagination ‘running wild’ while isolating herself during the COVID-19 pandemic.”
That brings up another mystery. Where are all the women with epiphanies? Why are men more likely to experience severe psychosis and why do men make up the lion’s share of the shapers—the most noted (or notorious) leaders, inventors, thinkers—of world history? They almost certainly go hand-in-hand, but I’m not sure why. The routine dismissiveness of the opposite sex can’t be the primary reason.
I may have found one. Scientists have tried to identify a unique phenomenon, one that they posited most often happens to a specific subset of the populace. “Savant syndrome is a rare, but extraordinary, condition in which persons with serious mental disabilities, including autistic disorder, have some ‘island of genius’ which stands in marked, incongruous contrast to overall handicap,” reported a 2009 study. By a 6 to 1 ratio, males outnumber females with this condition, exceeding even the male/female 4 to 1 ratio in autism, where an estimated 1 in 10 are thought to have a form of savant syndrome. Researchers point to similar gender discrepancies in other male-dominated disorders such as stuttering, dyslexia, and delayed speech. One hypothesis:
In the male fetus particularly, circulating testosterone, which can reach very high levels, can slow growth and impair neuronal function in the more vulnerably exposed left hemisphere, with actual enlargement and shift of dominance favoring skills associated with the right hemisphere. A ‘pathology of superiority’ was postulated, with compensatory growth in the right brain as a result of impaired development or actual injury to the left brain.
That may explain the preponderance of males, but savant syndrome can be acquired at any time in life, even in 50-year-olds. While savant syndrome is most attached to incredible memory, and often an extraordinary ability to manipulate numbers and dates, the special skills that can present are myriad, particularly in music and art. But then there is the rarest of the rare.
The term prodigious savant is reserved for those very rare persons in this already uncommon condition where the special skill or ability is so outstanding that it would be spectacular even if it were to occur in a non-handicapped person. In such a non-handicapped person the term “genius” would be applied. There are probably fewer than 75 prodigious savants living worldwide at the present time who would meet this high threshold of special skill.
My aptitude and interest in investigative endeavors was clearly not a high priority in my early years.
Could that be what’s happening to me? Only without the mental difficulties? (“Mental difficulties beyond the obvious,” my wife would add). These types of people wouldn’t be research subjects, per se, just labelled as ridiculously smart. However, “ridiculously smart” and “Dave” have never been used in the same sentence to describe yours truly, much less any use of the word used to describe bars in Apple stores. That instead describes my good friend Scott, the Sage Swami of Savants. The friend referenced repeatedly throughout this memoir. The one living in Australia. The one who recently survived a bout with bladder cancer. Bladder cancer—the type of cancer most closely connected to autoimmune disease and, therefore, most closely connected to Lyme.
Well, that explains a lot.
When listening to my outlandish theories, not once did Scott strain a smile and politely nod before scrambling to change the subject. He never rolled his eyes, pointed out that I’m not a medical expert, or joked that, “oh, now everything is Lyme.” That could be because it’s hard to see strained smiles or rolling eyes through a phone receiver, as we almost never link up in video calls, but our conversations about the disease have always been engaging, even challenging. He’ll debate inconsistencies and is unafraid to all-out scuttle an unvetted hypothesis of mine that he finds weak. But it’s that type of back-and-forth that has helped me fine tune and strengthen my positions.
About those positions. Are they mere delusional fantasies, textbook examples of overreach untethered to reality, much less science?
It’s been excruciatingly isolating to write this memoir, because apart from Scott and a handful of others, that’s the general belief among most friends and colleagues, an unsaid undercurrent of dubiousness. (History repeats, as I experienced similar skepticism when I told everyone I knew that my health insurer was going to eventually reimburse me for my stem cell transplant, compensate me for years of lost income, and that the story would make national news. To everyone’s shock but my own, all three came true.) While Sit Down Before Reading is by no means required reading to be a friend of mine, few have read more than a smattering of chapters. Even so, I appreciate the keep-on-truckin’ platitudes and the sympathies shared with Laura for her managing to cope with this Lyme obsession of mine.
I understand and don’t take offense. No one believes they have Lyme. Nah. So why devote hours to reading a book about Lyme? I don’t have the energy to explain the math, that the disease has been spreading sexually and congenitally since the dawn of humanity, making it far more likely than not that Lyme has infiltrated my friend circle with abandon. When an aunt recently told me about her unusual health problems that surfaced after getting breast implants, I didn’t feel the need to unnecessarily enlighten. But I’ll briefly do so here, because stories not far removed from hers are taking place in households everywhere on this planet.
In my aunt’s particular case, she received plastic surgery, which is trauma. So, of course, signs of Lyme in the form of misdiagnosed autoimmune disease litter research studies after such wallops to the immune system. “Compared with women in the general population, women with silicone gel-filled implants were eight times more likely to be diagnosed with Sjögren syndrome; seven times more likely to be diagnosed with scleroderma; and nearly six times more likely to be diagnosed with rheumatoid arthritis.”
The constellation of health problems, which can take days to decades to present, is so common following surgery that it has been given a name: breast implant illness or BII. But it’s not an official diagnosis. You can guess why not. Despite decades of observing the condition, “it’s still not well understood.”
Because there’s no diagnostic test to confirm a BII diagnosis, plastic surgeons may need to order tests and review medical records to rule out other diseases or conditions that might be causing the symptoms. Doctors may check for arthritis, Lyme disease, or thyroid problems, for example, and see if symptoms improve with treatment for those conditions. In some cases, someone might have both BII and a diagnosed autoimmune disease or other conditions.
If you were merely skimming this, it would be easy to overlook the above passing reference to Lyme. It’s always been there if you pay attention. Reliable research repeats, and evidence of lurking Lyme has been infecting scientific studies for decades, centuries. For my discoveries to be believed, I don’t need to browbeat friends and family to “see the truth” (whatever truth that may be), I just need to penetrate the comforting bubble of disbelief shielding scientists and physicians for the entirety of their careers.
Again, if you’ve been paying attention, I’ve been doing that. Except I knew that my powers of persuasion—sciencesplaining to the scientists—wasn’t going to succeed. They couldn’t give a flying duck what a random blogger with a small audience on the interwebs might believe. A change of course would have to come from within. So I did what those researchers and doctors should have done from the beginning, listen.
I listened. And boy did I learn. Given a challenge, my brain lights up and starts trying to make connections, stringing virtual yarn between virtual pushpins until there is an answer or a dead end. Often it is a dead end, but I don’t get there until every plausible path forward is probed and dismissed.
And that’s how I figured out how to get inside the protective ranks of the scientific community.
The Trojan Horse
Horses have been a recurring theme throughout this memoir. Recall that in medical circles, doctors are told to look first for the horse when making a diagnosis, not stretch to identify an unlikely zebra. I initially thought Lyme disease was the zebra, only to discover many chapters later that it was the horse this entire time, deceiving physicians time and again. Our final horse in this memoir embraces Greek mythology, the Trojan Horse.
Many have assumed that I’ve simply cherrypicked supportive studies to include in this memoir while burying in the sock drawer those that conflicted with my hypotheses. After all, it’s essential fertilization for my obvious confirmation bias, right? Everything is Lyme related, as if. A wanna-be Einstein shouldn’t overplay his hand.
Sorry. You might want to look inside that giant wooden horse, the one scientists have been proudly parading about as a crowning trophy to recognize their past accomplishments. I realized early on that the only way to prevent these same scientists from dismantling my theories would be if they were carefully constructed and reinforced with their own research. That horse is stuffed with their original studies, sure, only it’s research that, upon closer inspection, ultimately supports crucial elements of my discoveries, the equivalent of a scientific poison pill.
In order to discredit my findings, scientists would have to destroy their own work. Even investigations that would appear ripe for plundering, like that “can-we-really-trust-it” Chinese-led study that estimated over a billion people on this planet have antibodies to Lyme, isn’t so easy to sink. Their meta-analysis looked not exclusively at research out of China, but at more than seven dozen studies conducted by researchers worldwide. That would mean discrediting a multinational contingent of scientists on a global scale. Although the authors admit that “the publication bias of the included studies should not be overlooked” and “the reported seropositivity rate in the general population may be overestimated and non-representative of the global population,” we’re talking 87 studies authored by a collective of hundreds of researchers. Good luck with that.
The evidence I’ve presented has more support than you would ever realize. You already know from reading previous chapters that I’ve referenced hundreds of studies in Sit Down Before Reading. What you may not know, however, is that I hurt my brain reviewing thousands more, spending hundreds of hours destroying countless budding hypotheses of my own. (I understand that scientists would prefer to see all this work, just as my high school math teacher Mr. Kokonis would have insisted, but that would have turned a 2-year project into one lasting decades, transforming this into an unreadable encyclopedia.)
Either I’ve gotten everything so laughably wrong... or you’re looking at the GMDOAT—the Greatest Medical Discovery Of All Time. There’s not much wiggle room.
At times it turned maddening, as theories that once held great promise turned to dust like an ancient scroll in an Indiana Jones movie. Or, conversely, hypotheses that I considered fringy at best sometimes ascended like a phoenix from remnants of previously discarded research. The process was exhausting.
Some of my earliest hypotheses were so flimsy a fifth grader could have picked them apart. (What is it about fifth graders?) These stabs in the dark— most, thankfully, unpublished—unraveled for reasons they should have: existing studies couldn’t support those positions when new, conflicting evidence was encountered. Remember when I was fixated on proving a 30 percent misdiagnosis rate in MS? Science set me straight. Another time I polled members of ActiveMSers about their “weak” side, wondering if there was a clue buried within. There wasn’t; right- or left-sided weakness is random. That time my own research set me straight.
Then there were those theories that would have no conclusive answer, hypotheses without a home left for future study. For instance, I had buried how mental health issues burrowed into branches of my family tree and pushed aside knowledge that prostate cancer is ubiquitous on my father’s side, never putting two and two together. It’s almost certain that I’ve had lurking, dormant spirochetes the entire time, and it was my 2004 tick bite—and a whole new set of spirochetes—that ultimately supercharged the lot, turning my body into a flesh-and-blood Thunderdome. That would help explain why some people have more aggressive disease, particularly in Lyme endemic areas. It might not just be the individual strain of Borrelia passed down from the mother or picked up from a partner, but also the number of different strains acquired from future partners (or future tick bites, as in my case), doing bonus damage as they corkscrew through the body.
The culled and vetted surviving theories then had to complete a gauntlet of challenges where a single misstep meant starting over. That included answering to the social media gods. Any serious concerns that might rebut my findings from healthcare opinionmakers needed to be addressed. Dr. Brandon Beaber’s popular videos were instrumental in guiding me. For instance, if I couldn’t successfully refute each of his points as to why he believes MS isn’t Lyme, I fail.
But by far, the most challenging aspect of discovery was keeping aloft multiple tenuous theories while simultaneously seeking answers to fundamental questions that could jeopardize the entirety of my findings. For instance, how could my defining hypothesis be true—that Lyme is widespread and at the root of so many illnesses—when the disease was believed to be spread primarily by deer ticks, whose habitat is relatively confined? Critical clues from Puerto Rico and South Africa exposed the potential of acquiring Lyme after travel to endemic areas like the Northeast and Europe, but Australia threw an unwanted, clunky wrench into that hypothesis. Blacklegged ticks are rarely found there. There was far too much illness Down Under for it to be solely attributed to bad luck traveling. Jetting off overseas was one factor in the spread of Lyme, but it couldn’t be the driving factor. Instead of jumping to the easy conclusion—no ticks meant no Lyme—I kept these potentially conflicting theories afloat until the method of transmission revealed itself in research yet to be uncovered.
Alrighty then. This all sounds like the adjectives cockamamie and harebrained hooked up and birthed an unspeakable, bastardized rooster/rabbit hybrid. Like cockahaired. Or harecockabrainie. Trust me, I know. I’ve been struggling to make sense of this myself. Barring something supernatural (that may or may not involve an incident in early 2006 while touring the fabled ancient Mayan city Tikal in Guatemala where scenes from the original Star Wars were filmed), there are only two plausible, rational answers. Either I’ve gotten everything so laughably wrong that I’ve fortuitously laid the groundwork to launch the podcast “Hook, Line & Sucker,” or you’re looking at the GMDOAT—the Greatest Medical Discovery Of All Time. There’s not much wiggle room.
If you ever venture to reread or relisten to this memoir (ack, another 52 chapters!), you’ll get to jump inside my delusional/inspired brain and see just how I approached and worked through countless problems, overcoming innumerable barriers. Because I opted to publish this book in real time instead of editing out all the false starts and missteps, it provides a level of insight to my mental processes that would have been all but impossible to witness otherwise. You’ll see that I didn’t arrive at any of my discoveries by happenstance. I didn’t just court failure, I urged it, pressed for it, pleaded for it. Scientists couldn’t possibly have gotten this so wrong for so long.
But they did.
If one insists otherwise, that all 51 chapters of this memoir published to date are pure poppycock (there’s that word again), then it should be easy to pick apart my conclusions, just as I destroyed the latitude gradient, sunlight, EBV, and other theories held dear by researchers. So easy peasy, lemon squeezy, that an elementary student of a certain aptitude, say between the grades of fourth and sixth, should be able to do it. Right?
Scientists are routinely warned not to get overconfident in their conclusions, the type of confidence that appears to drip off the pages of this memoir, threatening to irrevocably stain its breathless hypotheses. But for all those individuals certain—absolutely, positively, without an iota of doubt, 100% certain—that there is no possible way I have stumbled upon the greatest travesty in the history of medicine, I present in my defense an object that has been used in some form since 6000 BC. A mirror. It’s hard to criticize one’s overconfidence with an equal level of overconfidence.
A Scientific American podcast, “Overconfidence Can Blindside Science and Society Alike,” interviewed C. Brandon Ogbunu, a Yale professor of ecology and evolutionary biology, about how such a wrong like the one I have (purportedly) discovered could persist.
“Science can get things shockingly wrong,” explains Dr. Ogbunu. “It can lead us down really, really bad, incorrect paths that end up causing harm… It can be because other interests, biases that you may not see—your own and society’s—infiltrate the process and steer the process in order to try to get to a product that we oftentimes find out was based on a broken idea.
“The term bias doesn’t even necessarily mean bad or harmful. It means that you are a person..., a sentient individual who has experienced things on the Earth.”
My friend Scott, who, like Dr. Ogbunu, is in academia, reminded me of that when we talked the other day. “These people with PhDs, including respected doctors and scientists, are not necessarily any smarter than the rest of us. But they have been afforded opportunities that most of us will never be given.” And humans get things wrong… because they are human. It’s how we approach those wrongs that separate us, a truth Scott pressed into me tens of thousands of words ago, an opinion shared by the Yale professor.
“Admitting that you’re wrong and explaining what you got wrong is actually a demonstration of your power, knowledge and authority, and demonstrating the wrongness and what you’ve learned is precisely what makes science the greatest knowledge-creation instrument in the history of the universe.”
For the past two years, I’ve been wrong so many times it’s a wonder a capitalized red “X” from the Family Feud doesn’t hover over my head. But it’s experiencing all those wrongs that have helped me to refine, and harden, theories that can deflect the wrecking ball of failure. A wrecking ball loaded with dynamite with a hair trigger so sensitive it’s a wonder it hasn’t gone off and been turned into a meme on TikTok.
I welcome others to try to dismantle my findings—please, help me improve this grand investigation into Lyme’s obliteration of humanity’s health. I’m okay if you find faults in my analysis. I know what failure looks like. And I know too well what it feels like. Which brings us to May 6, 2023.
I didn’t know what I had done wrong, but clearly, undoubtedly, most assuredly, I had done something. Laura was upset with me, and seemingly everything I was doing was compounding the problem, as the hole I was digging for myself kept getting deeper. And wider. And I was clueless as to the reasons why. (It goes without saying that anyone who could put up with me during these past few years deserves a medal of valor, particularly the love of my life who somehow is still by my side.) After an unusually tense evening with my wife, punctuated with terse sentences clipped to subject-verb-period, I was left to reflect and ruminate on my actions. It’s hard to fall asleep when one is ruminating about righting wrongs, particularly unknown wrongs.
Then it happened.
The entire day started replaying in my head. But it didn’t merely recap the highlights, summing up events, it specifically zoomed in on my numerous missteps and regurgitated those moments in vivid, excruciating slo-mo. The only thing missing was a boisterous John Madden and his telestrator, as I watched on in horror my deplorable performance as a husband. The experience was otherworldly.
Wow. I really said that, on the anniversary of her mother’s death? I chose right then to roll my eyes, thinking she wouldn’t notice? I opted to punt on helping her when she’d already done 95% of the work? Again and again, my brain called up, word-for-word, examples of my failings—BOOM!—as I pulled the covers over my head in shame. If anything was unclear, backing up and replaying those instances provided unquestionable clarity. Oh yeah, I effed up, big time.
The next morning, I explained to Laura my epiphany and embarked on my groveling tour, which she appreciated. Then, two days later in the early morning hours of May 8, it happened again. No, not me being clueless and stupid, but my brain did that thing again, only this time it was replaying the surreal moments from a dinner out the night before with friends. The vacant table-of-one with a glass of water waiting for a guest who would never arrive, the well-dressed man sitting nearby with forearms the size of thighs, the 10-year-old playing with a stack of twenties that added up to a conservative $20,000.
I clearly remember thinking that none of this really mattered and that my brain was churning away on a non-problem. That in rare moments like these, it should be working on big-ticket items. Like finding a cure for the ages—a cure for Lyme disease! C’mon brain, do your thing.
I laughed out loud in my darkened bedroom. As if. Even in this elevated state, my brain couldn’t suddenly do calculus, speak foreign languages, or understand Finnegans Wake. If I were a savant, né a prodigious savant, such epiphanies would be child’s play for a so-called über smarty pants. I’m no g-word, at best a sporadically keen observer. But I asked my brain anyway through muffled chuckles. Where, oh where, should I start looking for a Lyme remedy, if one were to even exist? And….
And, shockingly, I got an answer. I stopped laughing.
That night was the last time my brain was swaddled in that epiphanous, borderline euphoric state. Nearly one year later to the day—May 4, 2024—and after repeatedly getting turned around in the Overlook Hotel’s hedge maze (yeah, that one, from The Shining, thanks Mr. King and Mr. Kubrick for the nightmares), I finally found what I was looking for, right where my “third floor” predicted it would be.
The final missing piece to the world’s most epic, vexing puzzle, one with real potential to end this horror story of the ages.
Our final hallelujah booyah. Our final twist.
Look at the date of discovery again, May 4th, Star Wars Day—“May the fourth be with you.” I couldn’t make this up. References to the seminal sci-fi film of my childhood, the first I remember seeing in a movie theater, litter this memoir. Princess Leia and Obi-Wan, Yoda , Chewbacca, Han Solo, the movie itself. But no Luke Skywalker, no Darth Vader and his Death Star, the metaphors conspicuously absent, at least if you routinely pretended exhausted cardboard gift-wrapping tubes were lightsabers when you were nine.
The evil space station had a hidden weakness, a small exhaust port that snaked directly to the Death Star’s core reactor. A direct strike there could cause a chain reaction and destroy it.
I discovered Lyme disease’s Achilles heel, its exhaust port.
Use the Force, Dave.
That force? Science. Ready those torpedoes.