Sit Down Before Reading: A Memoir by Dave Bexfield
Demi Moore was just going to have to wait for me, I wrote in a 2016 blog post. In fact, I didn’t even know she was there, much less an arm’s length away, which was probably a very good thing. See, at the time, I was descending some extremely precarious steps at Machu Picchu… on my rear end, one slow butt scooch at a time. And Laura definitely did not want to hear my final words be a surprised celebrity-induced exclamation “HEY, AREN’T YOU THE ACTRESS DEMI MOOooooooooore” as I plunged off a precipice, fortunate to be wearing bright prisoner-orange pants so my body would be easier to recover.
I tend to stand out, and not just because of my questionable choices when dressing. Few people who explore Machu Picchu do so in a wheelchair, and far, far fewer are given the opportunity to photobomb Ms. Moore’s vacation photos, which I most certainly did. “OMG, is that a dude in a wheelchair?” her friends no doubt have chimed when flipping through her pictures. “And sad, the poor guy has zero fashion sense.” Given that an image of little me likely adorns a scrapbook in Demi’s home, as do images of her in mine, I recently considered DMing her, not about our shared adventure, but about her ex-husband, Bruce Willis. But after my failed outreach to future US Senator John Fetterman last summer, I thought better of it.
When news broke of then-Lt. Gov. Fetterman’s stroke in 2022, it was background noise to me. But then I read about his swollen feet, need for a pacemaker, and his depression, all symptoms of Lyme carditis. And he lived in the epicenter of Lyme disease in the US: Pennsylvania. So, I did what I do—I wrote him and his staff, with a classic Dave introduction: “What I'm about to say is going to sound positively wackadoodle.” I warned him that untreated Lyme carditis can cause atrial fibrillation, potentially triggering a stroke and requiring a pacemaker. Worse, it could necessitate a heart transplant due to cardiomyopathy. And even worse, no infectious disease doctor or cardiologist would ever find it or even think to look for it without a positive test.
“Cerebral vasculitis and stroke due to LNB should be considered, especially in patients who live in or have come from areas with high prevalence of tick-borne diseases,” cautioned a 2017 study. Ischemic stroke is the most common heart issue in Lyme disease, appearing in 76% of cases reviewed by the study, the same type that Mr. Fetterman experienced. The Senate candidate should get tested, I urged. His life might depend on this information, I warned. I never heard back.
Armed with only attitude and a half-written memoir, I knew that I'd face the same degree of dubiousness from Ms. Moore. Even though her ex was diagnosed with rapidly progressive frontotemporal dementia—a known side effect of Lyme disease—and grew up and worked in New Jersey and New York, a megawatt celebrity was unlikely to be receptive to a random, potentially mentally unstable dude trying to slide into her DMs. I considered reaching out to Wendy Williams, who was recently diagnosed with the same disease as Mr. Willis. Unsurprisingly, she has all the warning signs of lurking Lyme: in 2018 she was diagnosed with Graves’ disease, an autoimmune condition affecting the thyroid, and has lymphedema that has caused her ankles to swell. (Sound familiar?!) Her “cankles” even have their own TikTok page and have gotten so much press they might need their own agent one day. For a moment I pondered contacting singer Céline Dion about her recent stiff person syndrome diagnosis, an extremely rare autoimmune disease that also has a history of being confused with Lyme. After other people with far more clout than I have made that same association publicly on Twitter, I opted not to.
Without the damning evidence from future, yet-to-be-written chapters of Sit Down Before Reading, I was powerless.
Not anymore.
Exhibit A
Over the past four years, the scientific community has coalesced around a single malady, Covid-19, conducting medical research with unquestionable vigor. The result has been breathtaking and swift, leading to the rapid development of vaccines, novel treatments, and an intimate understanding of the viral infection. There remains just one last steep hill to climb: answers to long/post Covid, which occurs in 10-20% of cases of the coronavirus. In March of 2023, The Lancet published an editorial, Long Covid: 3 Years In, decrying the “excruciatingly slow” progress, lack of attention and resources, and absence of treatments.
The desperation of patients can be seen everywhere, amplified when they read that experts expect the “studies will likely take place for many years to help us better understand how to diagnose and treat long COVID.” Many years. One poster on X, formerly known as Twitter, was resigned. “Every single time I see a doctor for my ongoing long Covid, I come away from the appointment utterly disheartened and forlorn. Any sense of hope—of treatment on the horizon—is completely crushed. It makes me realize that we truly have been thrown on the scrap heap. No one cares.”
That’s not the worst of it. Editorials are going to keep on decrying, forever. Patients are going to keep on suffering, forever. Unbeknownst to researchers, without an entirely different approach and mindset, that steep hill harboring the answers is unclimbable. I’ve seen it before.
In 2013, in a darkened room at a Hamburg art museum, Laura and I sat transfixed watching a video of a vintage red VW Beetle struggling to get up a dusty hill in rural Mexico. For 30 minutes. With each attempt it got closer, chugging full steam past stray dogs and decaying cars, until gravity and reality intervened, forcing the wheezing VW to back down and try again anew. Alas, Belgian-born, Mexico-based artist Francis Alÿs never lets viewers see the Bug crest that hill in his piece titled El ensayo (The Rehearsal). Long Covid researchers might as well have been behind the wheel.
To understand how it could be that long Covid is an extension of undiagnosed Lyme disease (or a coinfection), it helps to lean into the guidance of SHARDs, heavily. Recall that history harbors hints, and since Lyme disease has been around since before recorded history, classic symptoms of Lyme (aka long Covid) should have surged after every major illness going back in time. They do—do they ever. Pick your pandemic poison, grab your jump rope, and join the schoolgirls singing on playgrounds past.
I had a little bird
And its name was Enza
I opened the window
And in-flew-Enza.
Swine flu from 2009, SARS from 2003, the 1968 Hong Kong flu, the 1918 Spanish flu, outbreaks of the Russian flu in the late 1800s, it doesn’t matter. A 2022 New York Times piece on Long Covid reported that, “the scientists Oliver Sacks and Joel Vilensky warned in 2005 that a future pandemic could bring waves of illness in its aftermath, noting ‘a recurring association, since the time of Hippocrates, between influenza epidemics and encephalitis-like diseases’ in their wakes.”
Encephalitis-like diseases are distinctly Lymey. And notably, psychosis is a frequent thread of these past illnesses. “A review of the medical history and epidemiology of past pandemics and epidemics in modern literature identifies common long-term post-infectious disorders, with the common finding of altered cognition,” found one study. After the Spanish flu, “first time asylum hospitalizations in Norway with mental disorders attributed to influenza increased” more than sevenfold over the coming six years, reported another. Sevenfold is not a coincidence.
The aftermath of the Russian flu in the 1890s provided the first flushed out, well-documented preview of long Covid. “As with COVID-19, the diversity of these post-influenza symptoms and their unpredictability baffled contemporary medical observers and provoked lengthy disquisitions in The Lancet and other medical journals,” reports a 2020 Lancet study. Classic symptoms of late-stage, disseminated Lyme disease dominate the discussion. Relentless fatigue, psychosis, numbness, weakness, insomnia, and pain, so much pain. Suicide rates spiked, as England was swallowed by sickness long after the flu had departed, many of its citizens “too debilitated to work or return to daily routines, and plagued with mysterious and erratic symptoms and chronic illnesses.” The lingering symptoms even attacked the heart, the lungs, and digestive system. It was so confounding, one doctor said that this “influenza is the very Proteus of diseases, a malady which assumes so many different forms that it seems to be not one, but all diseases epitome.”
Lyme disease in a nutshell—the epitome of all diseases.
The research on long Covid is exhaustingly reaffirming. Even though headlines lament that “the NIH has poured $1 billion into long Covid research—with little to show for it,” it’s this research that finally has exposed the underbelly of Borrelia infections. Everything aligns. Always. There are no speed bumps that give pause, no findings that clash with a Lyme disease diagnosis, no nuggets of evidence that point in a different direction. None.
Indeed, when researchers posited that patients with Borrelia burgdorferi antibodies might get more severe forms of Covid, they tripped into a puddle drenched with evidence that the Borrelia antibodies aren’t restricted to Wally’s namesake.
Interestingly, in many patients we observed antibodies targeting different species (e.g. B. burgdorferi sensu stricto, and at the same time B. afzelii, and/or B. garinii). This may reflect some cross-reactivity of antibodies, but likely it may result from co-infections with more than one species, which according to the literature may also occur. Also, severe COVID-19 patients demonstrated significantly higher levels of IgG specific to Anaplasma, which is often co-transmitted with Borrelia by ticks. This further supports the suggestion that increased risks in COVID-19 are linked to a history of tick bites and related infections.
But it’s the tsunami of long Covid studies, extensive analysis, and detailed reporting that leave no doubt, power washing away any lingering questions of Borrelia’s involvement. It’s on every page. Literally, every page.
Take the feature “Long COVID Now Looks like a Neurological Disease, Helping Doctors to Focus Treatments” from the March 2023 issue of Scientific American. IVIg and rituximab maybe offer hope, they report—two common avenues of aid often used for autoimmune conditions, er, Lyme. “Long Covid is an umbrella, and I think there are multiple diseases under that umbrella,” says one researcher interviewed about the randomness of symptoms it inflicts on a patient, like postural orthostatic tachycardia syndrome, or POTS, the racing heart condition common in Lyme and one that I experienced. Like in Lyme, brain fog is another wildly common issue with long Covid. It all aligns seamlessly, even the obligatory dismissiveness, the dismissiveness Lyme patients know all too well. “I can’t tell you the number of times I was told it was in my head,” said one long Covid patient through tears.
That’s from just one article. Now take a random, innocuous September 2023 study of California farmworkers. Practicing their trade exclusively outdoors in an area known to have ticks that carry Lyme disease, farmworkers, many of whom are migrant workers, should be at high risk for Lyme disease, and therefore, at high risk for long Covid. Ding, ding, ding! Researchers found that cases of the extended, lingering illness, as expected, are “elevated” in this population—in the sense that one might describe the Empire State Building as “tallish.” Instead of cresting a few percentage points above 10-12%—the prevalence of long Covid “for workers from public-facing industries in the UK, such as teaching and education, social care, health care, civil service, retail, and transport”—more than 60% of these farmworkers diagnosed with Covid now struggle with long Covid, an astounding discrepancy. A discrepancy that can only point in one direction: the long form of the disease is fueled by something in the environment.
Farmworkers in Fort Valley, Georgia; 7 May 2019. Photo credit: US Department of Agriculture/public domain [flickr].
Public notices from major medical groups ooze with Lymeness. Not long ago, the American Medical Association sent an urgent warning to its members to be watchful of emerging psychiatric symptoms in patients with long Covid; as many as 1-in-5 may be affected. In June of 2023, the U.S. Department of Health and Human Services followed that warning with a new advisory about mental health conditions associated with long Covid, including suicide—survivors of Covid-19 who slip into this patient population have a 10-15-fold higher risk of taking their own life. Psychosis and Lyme are so ubiquitous that, during a bout of my own craziness, I believe I tried to legally marry the pair using my powers as an ordained minister.
Of course Lyme disease can emerge without the patient contracting Covid, which means that suspected cases of long Covid are going to—shockingly!—also surface among those who never tested positive for Covid. And that, it turns out, is a major problem, as “roughly two-thirds of Covid-19 clinics in the country do not accept long Covid patients without a known diagnosis of the virus.” Researchers out of Northwestern examined those who tested negative and found that more than 40% in their study appear to suffer from “post-viral syndrome (PVS),” with evidence suggestive of a past Covid infection, deemed PVS+. But the other 60% who also are experiencing long Covid symptoms despite a negative test and no markers of the virus, labelled PVS-? OMG, the stars aligned for the discovery of a lifetime with clues that point DIRECTLY at the culprit.
Between PVS+ and PVS– groups, the only difference in symptoms was numbness and tingling being more common in the PVS– group. Interestingly, PVS– subjects were the only cases with a medical history of Lyme disease, Chikungunya infection, and traumatic brain injury predating the onset of suspected COVID-19. While this only encompasses one-third of this group, these preexisting conditions may contribute to persistent neurologic symptoms and could potentially have been exacerbated by another viral infection. Our data show no evidence that these individuals were exposed to SARS-CoV-2.
Yes, yes, yes, oh God YES! That Meg Ryan scene from When Harry Met Sally in the diner—yeah, that one—had to have been replaying in downtown Chicago at the university as its researchers pounded the table, celebrating the breakthrough. Is what should have happened. Instead of addressing this anomaly, the scientists dutifully droned on, dropping “groupwise” and “normative” into further unrelated analysis. The topic was abandoned.
This is turning ridiculous. Even bizarre long Covid anecdotes line up. Struggling patients desperate for relief have been sharing tips about treatments that may help. One post on X, formerly known as Twitter, made me stand at attention (ahem), as it affirmed my own experiences. “I've heard from several people with long COVID and ME/CFS who reported their symptoms moderately to vastly improved following Viagra use. Are these just wacky anecdotes or is there a scientific basis for these positive effects? Answer: the latter.”
At this point, those who have given up hope and resigned themselves to a lifetime of disability, being forced to retire due to persisting long Covid symptoms—hello, hockey superstar Jonathan Toews and so, so many others—maybe it’s time to rethink your future.
Exhibit B
With hundreds of thousands of published papers on the topic, scientists now have at their disposal so much evidence that Lyme and related bacterial infections are at the root of long Covid that any judge overseeing this case, by now tired of the overwhelming evidence, would take his or her gavel and start rapping the knuckles of researchers while urging them to get an effing clue.
Let me assist. But instead of using a small wooden mallet, I’ve got a hammer, the big kind. No, bigger, think carnival strongman big. Because the flamethrower of Covid-19 didn’t just awaken dormant Lyme disease to the tune of long Covid. Don’t forget, Lyme produces a symphony of other illnesses, and Covid inspired its opus, a masterpiece of worldwide infection. It might help to listen to Rossini’s The Barber of Seville, or better yet, the Rabbit of Seville, as you digest what you are about to learn. Our first overture is dedicated to a frequent subject of this medical memoir.
Recall that I made the outrageous claim that autoimmune diseases, every last one, are the creative creations of researchers eager to give disparate, often mysterious symptoms an official label. That they are all just variations of Lyme disease and related bacterial infections. For that hypothesis to hold up, doctors should have witnessed a shocking rise in autoimmune diseases fueled by the Covid-19 flamethrower. Not in just a handful of them, suggesting that Lyme is only mistaken for a few conditions, but in all of them. Every bloomin’ last one of them.
In January of 2023 researchers from Taiwan and Harvard conducted a retrospective Covid study published in The Lancet involving nearly 4 million participants, about 1 million cases and 3 million controls. The Covid-19 arm was swamped with subsequent autoimmune diagnoses, exhibiting “significantly higher risks of rheumatoid arthritis, ankylosing spondylitis, systemic lupus erythematosus, dermatopolymyositis, systemic sclerosis, Sjögren's syndrome, mixed connective tissue disease, Behçet's disease, polymyalgia rheumatica, vasculitis, psoriasis, inflammatory bowel disease, celiac disease, type 1 diabetes mellitus and mortality.” In sum, “COVID-19 was associated with increased risks of all autoimmune diseases.”
Then in June of 2023, German researchers also published a study looking at the association of Covid-19 and the development of autoimmune diseases, analyzing the health records of more than 640,000 patients as compared to 1.5 million controls. “We found a 42.63% higher likelihood of acquiring autoimmunity for patients who had suffered from COVID-19. This estimate was similar for common autoimmune diseases… patients with a more severe course of COVID-19 were at a greater risk for incident autoimmune disease.”
Drilling into the details was so painful that it felt like getting repeated root canals. In each one of my teeth. If I was a giant armadillo with 100 teeth. No, wait, a shark with 3,000 teeth. No, no, a sea slug! Those gastropods have a whopping 750,000 teeth. Everything lines up. It always lines up. Autoimmune disease first timers were joined by veterans who saw additional conditions added to their medical charts. Common diseases became more common, rare diseases less rare. (Now sufferers of Wegner’s disease, Behcet’s disease, sarcoidosis, and the like have unexpected company, at least temporarily.) Women predictably led the charge, outnumbering men 2-to-1.
The bottom line, confirmed and reconfirmed by countless studies: “Viral infections are a major trigger of autoimmunity,” concluded a team of researchers out of Qatar. You don’t even need Covid to demonstrate that, as that deduction was made in 2019, a year before the pandemic. The Qatari scientists pitched a few hypotheses as to why this was happening. “Current data suggests that viruses can initiate autoimmunity via several pathways including molecular mimicry, epitope spreading, bystander activation and/or immortalization of infected B cells.” Although that all sounds oddly like a randy mix of cosplay, tantric sexual positions, and idolized threesomes, it appears the Qatari scientists, and all the other researchers who have posited similar theories, Ueckered that hypothesis—juuust a bit outside.
Instead of regurgitating study after study to reinforce the simple fact that long Covid is merely Lyme disease, that autoimmune diseases are instead just cases of Lyme grouped together by common symptoms as determined by well-meaning but misguided scientists, and that psychosis is an inexorable companion of Lyme disease and its common coinfections, we need to move forward, and swiftly. People are sick. People are desperate. And I am one of those people.
After UNMH declined to offer me additional treatment, my New York Lyme specialist, Dr. Deadpan, switched up my antibiotics in the hope that they would better attack the bacterial boogers that had been causing my feet to swell. Two months later, my swollen ankles have improved and the pain in my left arm has started to subside, a little, much to Laura’s relief. I still lack the coordination to reliably fire my two middle finger guns that my disease so dearly deserves, but I'll get there. Hell yes, I'll get there.
As I write this, I am sailing blindfolded, unaware of the reception to these latest chapters as they barrel toward the conclusion of this memoir. The seas, though, must be churning, frothy. When we began this odyssey 45 chapters ago, I promised a reckoning. I promised a story to end all stories. And I promised twists that would revise the understanding of disease, dividing medical history into two—everything before this memoir and everything after.
I keep my promises. And I am not finished.
