Chapter 22: Iceberg Right Ahead

Updated: Oct 19

Sit Down Before Reading: A Memoir by Dave Bexfield


Sometime in the early 2000s, maybe 2004, flawed science ruined one of my life’s all-time favorite guilty pleasures: LAY’S Flamin’ Hot Flavored Potato Chips. No, this isn’t the current scandal where they inexplicably added lime flavor, which inspired a change.org petition that drew over 23,000 signatures to get that revision reversed. It’s far worse.


In years past, if a bag of Flamin’ Hots entered our household it was doomed to be consumed within a day, two or three max if it was a party-sized pounder. To prevent wanton snacking by unauthorized visitors, also known as “Dad,” I kept my LFH stash safely hidden in my desk drawer for emergencies, aka “the munchies.” But then one fateful afternoon, as I opened a fresh bag with the combined anticipation of a school-full of kids on Christmas morning, I noticed something was off, wrong. I willingly could put the bag down and stop eating. What. The. Hell.


My father to this day still uses his desk drawer to squirrel away his favorite goodies (M&Ms). Thankfully, in stark contrast to his candy hoarding, he routinely shares his beer, as this 2004 photo illustrates—weeks after my fateful tick bite.


They had removed a key flavor-boosting ingredient: monosodium glutamate, merely sodium and glutamate, an amino acid found in nature. Why? Blame an off-the-cuff letter from a random doctor that had somehow gotten published in the New England Journal of Medicine in 1968. He wrote that he had experienced odd symptoms after eating Chinese food—heart palpitations, a painful sensation in his arms, weakness—and mused that maybe it was from too much salt, or wine, or MSG. Despite half a century of thorough debunking, this myth refuses to die, fueled by misinformation often spread by food manufacturers themselves. Frito-Lay proudly devotes a whole page on its website to boast of its MSG-free products, even though they admit that “glutamate may occur naturally in some of the ingredients.”


It's crazy how seemingly minor missteps in science can change the entire future of countless lives. But unlike tastebuds forever robbed of authentic Flamin’ Hot flavor, the consequences can be much graver. Like the repercussions of relying on the common benchmark tests used to diagnose Lyme disease worldwide—antibody blood and spinal fluid tests that purport to be take-it-to-the-bank accurate—tests that have repeatedly appeared to be anything but accurate.


But appearances matter only so much. The Atlanta Falcons appeared to have 2017’s Super Bowl LI in hand with a 28-3 lead midway through the 3rd quarter… until they didn’t. La La Land the movie appeared to have won Best Picture in an upset at the 2017 Oscars… until it didn’t. And it appeared that I had cracked my own impossible case of living nearly two decades with untreated Lyme disease misdiagnosed as MS… until no one would believe me.


Sounding the Alarm

The Patriots needed a game-winning TD drive in OT, Moonlight needed a show-stopping correction, and I needed unassailable, overpowering proof that the testing for Lyme disease is irrevocably flawed. Only then would doctors be forced to begrudgingly concede, “Okay, Dave, I guess you really do have Lyme after all and we should probably treat you—sorry for the doubts and delay, our bad.” So really, I just needed to do something that countless people have tried and failed to do for the past 30 years. That’s all.


Those “crazy Lyme zealots” just may have been right all along.

Now, I had planned to focus on fully unearthing this groundbreaking evidence—evidence needed to change disbelieving minds—after I had started receiving proper treatment for my Lyme disease. I had even investigated long-term stays at top-notch rehabilitation facilities for those recovering from spinal injuries and the like. How cool would it have been for me to stand up out of my wheelchair as further testimony of my misdiagnosis? Yeah, pretty freaking cool! But since I couldn’t get the “medically necessary” treatment for my condition—IV antibiotics that cross the blood-brain barrier—I was left with no choice but to revise tactics.


Dial back lofty rehab goals. Reset my aggressive memoir timeline. Commit more time to landmark research. Done, done, and done. With the generosity of a forgiving wife who let dirty dishes linger a wee bit longer than typically permitted—in between writing chapters of this memoir and my daily therapy—I was able to carve out just enough hours to parse scientific studies to gather the needed telltale clues to support my hypothesis. At times those discoveries became so exciting that I couldn’t contain it to myself. Followers of ActiveMSers, who have been getting weekly Sit Down Before Reading updates this entire time through my long-running newsletter [subscribe], learned pretty much the moment I solved a particularly major MS enigma by reading the postscript from my June 8 newsletter:


p.s. If you heard whoops and hollers of excitement emanating out of Albuquerque recently, don’t be alarmed. That was just me finding another important puzzle piece as I continue to unravel one of MS’s greatest mysteries.


Over the course of the next month, that solution to one big MS mystery in turn helped to unravel a host of other MS conundrums, as the tumblers on the previously uncrackable Mysteries of MS safe miraculously and effortlessly clicked into place. Nope, I hadn’t discovered a couple of worthless, dust-covered empty bottles of hooch errantly stashed inside a long-abandoned Al Capone vault. No, this was closer to unearthing King Tut’s tomb, finding the Titanic, or discovering the Ark of the Covenant without the hazard of having your face melt off.


I had hoped to share my findings with researchers when I had everything wrapped up so tightly that I could tie up the compelling proof with a fancy ribbon and top it with a pretty bow—sans Lexus, sorry—but timing was now crucial, not only for my care but for others unknowingly trapped in the same misdiagnosis quicksand. Once I reached 100% confidence in my discovery in July of ’22, I had to sound the official alarm; the medical community needed to prepare for the iceberg right ahead or there was going to be a disturbing level of confusion and chaos in MS communities as word of my discoveries circulated. With thoughtful preparation, that could be contained and mitigated. I began by reaching out personally to four of the most visible and vocal MS specialists on the internet, all of whom I considered to be friendly and supportive colleagues.



Doctors, Dave Bexfield from ActiveMSers. If you are not yet aware, I was misdiagnosed 17 years ago and I am writing a near real-time memoir, Sit Down Before Reading. Today in Chapter 9 I revealed the cause of my disability—Lyme disease—hence the reason for me contacting you directly. You four are all-stars in the MS community, highly respected, and need to be looped in. In short order, my case is going fundamentally change the MS landscape, directly affecting virtually every practice, research effort, and person living with the disease. That’s because I’ve made the most unbelievable of discoveries and I have evidence to back it up (not to worry, it’s not “all MS is Lyme” or that “Lyme disease causes MS,” which Dr. Beaber addressed quite well in a 2019 video). As my book progresses, I could use your help and expertise. If interested, we should set up a conference call. Thanks for the consideration, Dave


Did you know that the Hoh Rain Forest in Washington state’s Olympic Park is one of the quietest places in the United States? Its Zen-like stillness is profound, mesmerizing, a pocket of peace in a tumultuous world. Laura and I can attest that its tranquility is entrancing. My message inbox was quieter.



Those acclaimed MS neurologists apparently weren’t interested in my discovery, even though I had worked with or directly conversed with all of them. It appears that anything involving Lyme disease was a bridge too far, even for colleagues who had, at least to date, respected and applauded my science-first advocacy work for years. I similarly reached out to leading Lyme disease researchers, most of whom were at least aware of my case. I could count all of their responses using a single number from the basic two-digit language computers speak. Hint: it wasn’t a “1.”


Missing Misdiagnoses

After whiffing so many times that I had practically screwed myself into the ground like a human-sized spirochete, I even resorted to contacting a renowned multiple sclerosis researcher whose specialty is in dissecting MS misdiagnoses. I made my reasoning for emailing him directly so crystal clear it could have been mistaken for sparkling glassware at a ritzy ball in an episode of Downton Abbey. “I recently discovered in a most spectacular fashion that I was misdiagnosed. Worse, I have unearthed compelling, overwhelming evidence that the disease I have—Lyme encephalomyelitis—is catastrophically being missed by neurologists. And it has been for decades. And I can prove it.” A ballsy statement from a patient without a pedigree in medicine, much less medical research.


He was the only doctor to write me back. The only one. He took valuable time out of his day and was thoughtful in his response, even offering to review parts of my work for accuracy. But I had uttered the word. That word. Lyme.


It’s hard to know how to respond regarding Lyme as I don’t want you to feel I’m dismissing your diagnosis or findings. I certainly can’t speak to your specific experience. As I’m sure you are well aware, diagnosis and testing is a contentious and confusing topic (especially if it involves IgeneX, or what some people call chronic Lyme disease). I think many of us frequently meet patients with MS concerned that they instead have Lyme. … There is no doubt Lyme is vastly under-diagnosed, though I’m uncertain based on much of the data we have so far how much CNS involvement of Lyme disease may actually mimic MS in its radiographic and CSF findings (though there is symptom overlap).…


At this point I’d now reached out to more than a dozen of the best-of-the-best doctors and researchers in multiple sclerosis and Lyme disease, worldwide, without success. I was no longer surprised, even mildly. Why would any respecting research specialist risk his or her professional medical career by entertaining a theory by yet another person spouting “nonsense” about a connection between MS and the most contentious and disputed of diseases? They’ve heard it all before. For years. With scant evidence to support any of the innumerable, supposedly outrageous claims. It’s a no-win situation for them. Either I’m wrong, and they look like gullible suckers for carving out precious time to listen to hokum. Or I’m right, and every diagnosis, decades of research, countless clinical trials, and their pedigree of published research studies are instantly threatened.


There was only one other individual on the planet who might have an inkling of the challenges I was now facing: a 70-year-old professor and senior principal research fellow at the University of Western Australia in Perth. I do have a history of harassing Nobel laureates, as poor Desmond Tutu would attest if he were still alive; our paths crossed in Cape Town, South Africa, during the last throes of Apartheid.


Dave with Archbishop Desmond Tutu in South Africa

So I emailed a desperate request for advice to Dr. Barry Marshall, that Dr. Marshall, winner of the 2005 Nobel Prize in Medicine.


Subject: An unbelievable request for assistance


From: Dave Bexfield, ActiveMSers.org


Dr. Marshall, I’m writing you today with the most unlikely and unbelievable of requests. As a Nobel laureate for making the groundbreaking discovery that ulcers are caused by bacteria, not stress—a concept that was initially heavily dismissed and ignored—you are the only person in the world who might have any idea of what I am up against. And I could use your advice. Or, frankly, just a pep talk.


I am confident I’ve made a similar landmark discovery involving multiple sclerosis and the third rail of infectious diseases: Lyme disease. (Indeed, you yourself may already be rolling your eyes.) After failing to find any researcher to even listen to my findings, I have resorted to publishing a near real-time memoir about my investigative breakthrough, made more incredible by the fact that I am a health advocate, a blogger, one with zero official medical education.


I’m not going to rehash my story here—it’s so insanely crazy it would take an entire book. But conveniently, it can be read online, for free, here: https://www.activemsers.org/sit-down-before-reading. Spoiler alert: your experience has already made my pages (Chapter 14: A Nobel Act), as I’ve audaciously told readers that I’ll be joining you as a laureate. My memoir will reach its bombshell conclusion in November with frightening parallels to your harrowing tale—infectious disease doctors and their fears of overprescribing antibiotics—and I’m mildly freaking out.


Any words of wisdom you can impart before I make that cliff dive would be immensely appreciated. Thank you for the time.


- Dave


At this point it was clear. If I was going to get properly treated for Lyme encephalomyelitis, all I must do is conclusively show that my "negative" test results are dead wrong by providing overwhelming evidence that the existing Lyme disease testing is patently flawed.


Okay.


[The above “okay” should be a shoulder-shrugging nonchalant “okay,” much like Pete Davidson’s response when playing Chad on Saturday Night Live, best illustrated by his performance in Chad Horror Movie, a welcome 3-minute diversion from this real-life horror story.]

But that is only the beginning. Not only is a “negative” test result for Lyme disease absolutely worthless, it might help if I provide indisputable evidence that chronic Lyme disease exists—that it absolutely exists. Okay, can do.


Also, maybe show that Lyme disease is now a worldwide crisis, one that has been dismissed and mocked with disastrous consequences for decades? And that those “crazy Lyme zealots” just may have been right all along? Why not.


While I'm at, folks prolly want me to spill the beans on the cavalcade of multiple sclerosis mysteries I've promised to solve, the kind of mysteries that have left MS researchers befuddled for years. Oh, sure.


Then, for good measure, it might be helpful to get a general idea of just how big this medical misdiagnosis kerfuffle is going to be in the MS community alone, along with ample evidence to back that up as well—your standard numbers, percentages, and bottom lines. Insurance companies and shareholders love things quantified in black and white (or black and red as the case may be). So be it.


So to sum up, I just needed to make one of the most monumental discoveries in modern medical history. The kind that wins Nobel Prizes.


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Okay.


Even though I’m mildly freaking out, emphasis on mildly I keep telling myself, it’s time to do this. The conclusion to this tale of tales is now inevitable, inescapable. Clear eyes, full heart, can’t lose.


 

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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

Chapter 22: Iceberg Right Ahead

Author's Note