Sit Down Before Reading: A Memoir by Dave Bexfield
The raised eyebrows, the disbelieving shaking of heads, the overly dramatic eye rolls. I have a unique skill of eliciting exasperated reactions after doing something moronic. You might call me the Lionel Messi of morons, the G.O.A.T. of being the goat. It is a skill I have developed and honed over the years.
I started young. Like that time in second grade when I faked a fever using the classic thermometer-on-a-hot-lightbulb trick—admittedly brilliant in the ‘70s, considerably less brilliant after the advent of cool-to-the-touch LCD lighting—to avoid completing a banal class art project where you had to make a stupid elf puppet out of paper. After struggling for an hour to merely draw a silhouette of an elf’s head, which was indecipherable from a random Rorschach inkblot, I hatched my brilliant plan to miss school the following day. When I smugly returned, I discovered the other art project I had been working on—a delicate clay Christmas tree destined for Mom that only awaited the pièce de résistance: a final touch of paint—had been completed by another student … in the festive holiday colors of the Pittsburgh Steelers. Today’s art project? Stupid effing paper elf puppet.
There was also that time I reprogrammed a secretary’s computer so that when she next typed into her computer, no matter what she typed, an ominous message would pop up: INCORRECT PASSWORD. PLEASE REMAIN AT YOUR DESK STATION FOR THE APPROPRIATE AUTHORITIES TO REVIEW SECURITY ACCESS, complete with a dramatic countdown clock. In my head, the head of an inexperienced intern just out of high school, I was certain that this was going to be hilarious. But when I rounded the corner and saw her boss, a high-ranking Air Force colonel, looking over her shoulder at said message, it dawned on me that maybe playing practical jokes that involve national security are unappreciated in the Pentagon.
And then there was the time when I had the infamous gout scare. One night I awoke to intense, throbbing pain in a big toe, where even the light brush of a sheet produced agony and waves of misery. Walking was hard, wearing shoes was harder. Dr. Google pinpointed the source of my issues: a classic gout attack. Obviously. My passion for IPAs clearly had doomed me. The ER docs nodded in agreement, as my toe issues looked and quacked like a gout attack.
After living a beer-free life with little improvement and telling friends that they could no longer serve me IPA (tears) or organ meat (whew), I saw my primary care doctor, who was highly skeptical. He said my IPA habit wouldn’t have triggered such an arthritic condition in someone barely 30 and ordered me to get X-rays. By unbelievable happenstance, as I was waiting to get called back, I flipped through a dogeared magazine on medical mysteries and stumbled onto a story about a karate expert who was suffering from mysterious arthritis in his hands. Doctors were stumped. Until one of them overheard the martial artist talk about his favorite hobby: breaking boards. With his fists!
I remember sitting in the waiting room, laughing, thinking what a moron. What a total moron! And then I abruptly stopped laughing. To prepare for the upcoming snowboarding season, a passion of mine on the same level as IPAs, I had been diligently exercising the muscle on the front of my shin, the anterior tibialis, by doing toe raises. But then I had the brilliant idea to amp it up, make it more challenging, by adding resistance. In the form of a 20-lb. dumbbell. On my big toe. And then proceeded to do said brilliant exercise religiously, for weeks. Until one toe cried out for mercy. Christ. Medical mystery solved.
From the eclectic 2002 Bexfield Holiday Letter
There are countless examples of me acting as a moron, so when I see amateurs—rank amateurs—trying to edge onto my turf, it irks me. IRKS in all caps. Enter into evidence the most moronic of wars that don’t involve swords or firearms: the so-called Lyme Wars.
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The Lyme Wars
In 1981, after investigating the woods surrounding Lyme, Connecticut, scientist Willy Burgdorfer made a groundbreaking discovery. Tiny, unassuming deer ticks, no more than the size of sesame seeds, had been causing the rash of unexplained illnesses afflicting families, particularly children, living in the small northeast town just off the Atlantic coast. Lyme disease was officially coined in 1982, but the disease was originally minted years ago. A hella many years ago.
Researchers at the Yale School of Public Health uncovered evidence that Lyme disease tracks back more than 60,000 years in North America, back when the universal language of Earth was Grunt. In Europe, though, the disease is a wee older. University of Bath researchers made the discovery that Lyme originated there before the Ice Age. The Ice Age began 2.4 million years ago, which means Lyme disease has been angling to fudge with our health from a time before humans even existed. It comes as no surprise that Europe’s earliest preserved mummy ever found, Ötzi, also had Lyme disease. Before he was murdered, the original Iceman (sorry, Val Kilmer) lived between 3350 and 3105 BC in the mountains along the border between Austria and Italy, likely spending his last years complaining about being tired and griping to his common-law wife that “something feels off.”
No, “it wasn’t all in his head,” researchers later confirmed after a pair of tourists first stumbled on the frozen dude in September of 1991. Coincidentally, that same year scientists in the United States got busy surveilling and researching Lyme disease with the first federal funding ever allocated to the tickborne illness. The CDC established the 2-tier testing algorithm for the disease just a few years later, the current “gold standard.” And, drumroll, shortly thereafter the pitchforks came out and the Lyme Wars began.
Wars birth books—lots and lots of books—and this topic alone would already fill a wing at a Lyme library. I could go into excruciating Battle-of-the-Bulge detail dissecting every skirmish, but a Tolstoyesque War and Ticks epic would have all the appeal of a 1,000-page tome on which way a roll of toilet paper should hang. I prefer gists.
Generally, there are two opposing camps. First you’ve got the mainstreamers, who believe Lyme disease is a relatively contained regional disease—easily diagnosed and easily eradicated by a short course of antibiotics—that is being blamed erroneously for a myriad of unrelated health conditions, particularly “nonexistent” chronic Lyme. Then you have the bLymies, who argue that Lyme disease is widespread—deeply challenging to diagnose and woefully undertreated—and the source of countless maladies that could be rectified with longer courses of antibiotics.
Predictably, heels were dug in after the first volleys were lobbed decades ago. Sick people demanded answers while doctors pointed to negative test results. Sick people insisted when they did get treatment that it wasn’t long enough while doctors insisted the exact opposite. Sick people railed all hair-on-fire at being ignored while doctors turned up the stereos in their BMWs. The situation soon became intractable.
Competing for Supremacy
Competing for moron supremacy, over the years the two factions kept amplifying their own rhetoric and biased beliefs to ridiculous levels. The more extreme bLymies have peddled conspiracy theories like Girl Scouts hawking Thin Mints: conniving cabals of researchers scheming to hide the truth, Big Pharma colluding to suppress the cure, health insurers conspiring to avoid treating this one disease, and the government concealing secrets of a covert tick experiment gone bad. (Despite Lyme disease being around since before wooly mammoths—imagine being tasked with finding a tick on one of those fuzzy beasts!—the uncontrolled spread has been attributed by some to an escaped military bioweapon from a research base on Plum Island, not coincidentally in the general vicinity where the tick-borne epidemic was first identified.)
The mainstreamers haven’t been any better. Instead of merely dismissing some of these arguments with blunt reasoning—e.g., the pizza parlor doesn’t even have a basement in which to operate a worldwide pedophile ring—they have resorted to mocking, ridiculing, and outright rejecting anyone or any theory remotely questioning the research or the validity of the science surrounding Lyme disease. As the protestors turned up the volume on protesting, researchers cranked out what they crank out best: journal articles, specifically journal articles denigrating and denouncing said protestors as delusional kooks more at home in a cult than a cul-de-sac, a looming threat to public health. Delusional Infestation, a 2009 journal article in Clinical Microbiology Reviews, is but one of countless studies analyzing this puzzling trend of lunacy.
Patients with delusional infestation (DI) pose a truly interdisciplinary problem to the medical system. They avoid psychiatrists and consult dermatologists, microbiologists, or general practitioners but often lose faith in professional medicine. Epidemiology and history suggest that the imaginary pathogens change constantly, while the delusional theme “infestation” is stable and ubiquitous. … The most intricate problem is to engage patients in psychiatric therapy. In primary DI, antipsychotics are the treatment of choice.”
Members of this Lyme “cult” latch on to the unproven because we are all “desperate for an explanation and possible cure” says a report produced for the UK Health Protection Association. In 2011, a veritable who’s who of primo Lyme disease researchers got Antiscience and ethical concerns associated with advocacy of Lyme disease published in The Lancet Infectious Diseases. The entire abstract is nothing short of cherry.
Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.
Even the National Collaborating Centre on Infectious Disease out of Canada chimes in. It’s the activists online that are fueling the crazies.
‘Chronic Lyme’ may be similar to parasitosis, a delusion of persistent and intractable infection; online forums devoted to the subject show the burden of illness, fear, and risk that these patients experience. Many are extremely knowledgeable about highly technical aspects of Lyme disease and different serological approaches; they reject a single fact, their negative diagnosis and the non persistence of infection following treatment.
The long-raging moronic Lyme Wars eventually devolved into essentially one giant pissing contest, if one were to have a pissing contest in a tornado. There have been protests galore, state and federal investigations, congressional hearings. The bLymies have gone so far as to intimidatingly stalk (or plainly reason with, depending on one’s perspective) Lyme disease researchers to such a degree that security guards had to be assigned, predating Dr. Anthony Fauci’s Covid experience with dissenters by decades. Mainstreamers have gone so far as to blacklist and shame physicians who dare sympathize with the bLymies, threatening to pull medical licenses and sanction providers who don’t toe the line.
Then there are the lawsuits. The Infectious Diseases Society of America (IDSA) has been a frequent target, the recipient of class action lawsuits and antitrust investigations, while those doctors who drew up the current testing for Lyme disease have been targeted personally for bias and gross conflicts of interest. Health insurers have been sued as well, accused of conspiring to deny Lyme disease treatment coverage, being called everything from evil to corrupt to the unprintable.
Let’s not leave out the petitions. Change.org seemingly hosts a Lyme disease flavor of the month, everything from “sign here” to demand a congressional investigation to “sign here” to demand Lyme advisory committee members “tell the COMPLETE TRUTH”.
An Olive Branch?
Megaphone-shouted claims from extreme bLymies that all cases of [insert disease of choice here] are in reality just cases of Lyme disease—supported by scant objective evidence—have become as ubiquitous as those “once-in-a-generation” weather events that seemingly have been happening weekly. Then the rhetoric inevitably levels up, as additional shocking claims twist the paranoia knife in deeper, e.g., Lyme disease is spreading uncontrollably as a sexually transmitted disease like its spirochetal cousin, syphilis! But logic often stubs its toe and trips when these types of claims are combined. For instance, if all MS is Lyme, and Lyme spreads in the bedroom, why aren’t the intimate partners of MSers succumbing en masse to mysterious maladies? And don’t say that’s because people diagnosed with MS—or Lyme disease—don’t do the nasty. Oh, trust me, they do.
Likewise, infectious disease doctors embrace the accuracy of Lyme disease test results like a new set of Callaway Strata golf clubs or a bottle of 18-year-old single-malt Scotch. Or both. Simultaneously. But again, logic-faceplant. If these tests were so precise, why has there been an unmistakable avalanche of outrage for decades? There have been thousands of critical books, feature-length movies (most recently The Quiet Epidemic documentary released in 2022), countless personal experiences of misdiagnoses, and a never-ending drumbeat of alarm about false negatives. But these people are all beyond delusional? No other medical test, for any other condition in the world, spurs this kind of visceral reaction, other than perhaps the occasional shocking/not shocking pregnancy test results when we discover who the father is on an episode of Jerry Springer.
And then there are the other mainstreamers outside the medical community, an entire group often overlooked: disbelieving friends, family, colleagues, and fellow patients. Even spouses. Especially spouses.
“To avoid a ruined marriage due to the ‘Cult of Chronic Lyme,’ I'm going to have one final blood test, which I have little hope will show positive, then I'm officially dropping out,” writes a member of ActiveMSers who started on her MS misdiagnosis journey months before I started on mine. “I'm gonna hang up the gloves and accept my fate of slow progression until I die, probably of a chronic UTI that sends one into sepsis, because I think that's the usual way it happens to us.”
There’s an undercurrent of “yeah, sure, whatever” that comes when suspicions of Lyme—unsupported by a positive test—are raised. The disease is now seen as a catch-all for invisible, “psychosomatic” symptoms that, in the opinion of the observer, may or may not be real. Husbands (and wives) will more often than not roll their eyes at the suggestion, friends will debate your supposed “diagnosis” behind your back, and all will silently wonder if you are just “grasping at straws” as you circle the disability drain. Or maybe it’s all in your head and you just need therapy. Poor pathetic you.
What people don’t realize is that we just want the right diagnosis. How hard is that? (Turns out, really hard.)
It’s no wonder that after 40 years of mindless bickering there has been zero compromise, zero bending. Virtually every physician practicing today has grown up in a world where they have been taught to steer clear of the Lyme wackos, a reason few will entertain treating a patient for Lyme without the protective shield of a positive test. To do so would put their entire medical careers in jeopardy. It’s just not worth the risk or hassle, so suffering patients have no recourse other than to raise a stink and, if they can afford to, go off the mainstream grid to find help. Any help. And then worse, when they do, their support system of family and friends often fractures under the weight of decades of biased derision against anything remotely attributed to a tick.
After the most recent failed lawsuit against IDSA, one member recognized the dismissal—in a published May 2022 journal article in the Open Forum of Infectious Diseases—as “a clear and important victory for the IDSA in the decades-long contentious debate over Lyme disease,” while purporting to offer an olive branch. But the branch could not help but have contemptuous offshoots, evidenced by the title alone, Destroying the Village in Order to Save It: Collateral Damage in the Battle Over Lyme Disease. It is the opinion of the author that infectious disease specialists—"experts in history taking, physical examination, and diagnosis”—are the ones “saving” the village, and that their patients should be relieved to know “that their symptoms are not attributable to an incurable spirochete.” He goes on to lament that he feels defeated when he is “unable to convince someone that they don’t need a central line and antibiotic cocktail.”
What if it’s not the patient, but the physician who needs convincing? It’s unfathomable that the test for Lyme disease could be wrong. That copious research behind myriad diseases could be wrong. That the entire panoply of infectious disease experts and autoimmune specialists could be wrong.
How does one tell those who cling to the unfathomable that it’s time to finally fathom? To lay down their arms and put an end to the moronic Lyme Wars? You’ll soon find out.