Sit Down Before Reading, A Memoir by Dave Bexfield
As a cub reporter for a freshly launched business newspaper, I was responsible for digging up scoops— think Woodward, Bernstein, Watergate. Then stop thinking that because it was 1994, I was barely in my mid-20s, and living in Albuquerque, New Mexico, where headlines like “Balloon Lands on Highway,” “Tumbleweeds Bury House,” and “Governor Signs Bill Recognizing Smell of Roasting Green Chiles as Official State Aroma” pull in readers. I originally tried to land a copyeditor position at the area’s biggest paper, The Albuquerque Journal, but failed the test they give all job applicants to weed out the uninformed. I was summarily weeded. I was not, and still am not, a good speller. I am fastidiously fudgy with grammar rules. And when they asked me to identify Stoney Case, UNM’s star quarterback at the time, I wrote something akin to, “a heavy and unwieldy briefcase made of rock known to damage toes if accidentally dropped.”
I didn’t get the job. But I did land the business paper gig, and one of my first assignments was to cover a speech that media mogul and rancher Ted Turner was giving about being a steward of the land. (Today he is the state’s largest private landowner, with more than 1 million acres, and has been “converting the historic properties he owns into nature reserves to share with the public.”) I scrambled to arrange an interview with his handlers. He was pretty busy, they said. Translation: No. What if I talked really fast and made it super quick? No. What if I talked really fast, made it super quick, and conducted the entire interview during the 10-minute limo ride from the airport? Still no.
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As I sat in my assigned seat, picking on the overdressed banquet salad and contemplating my dwindling options, I noticed from across the room that Mr. Turner had arisen from his chair—my golden opportunity!—so I followed him from a nonchalant, totally cool, safe distance. I was still planless and now, apparently, also clueless. My golden opportunity was turning literally golden, as I found myself walking past his stern, arms-crossed security guard into a semi-private room. The restroom.
How in God’s name does one interview a billionaire in the bathroom? I pondered that exact question, penis in hand, as I tucked into a urinal next to the man and pretended to pee. That uncomfortable, urgently pressing scenario is what I imagine it feels like right now to many of you, pants down, exposed, as your world is violently rocking like a seriously out-of-balance washing machine. What now? What the hell now??
Every bone in your body, even my body, is screaming THIS CAN'T BE HAPPENING. And every brain cell embracing logic is screaming back OF COURSE THIS IS HAPPENING. Sound science makes sense, and this makes sense. All of it.
Scientists have been unable to find the source of a single autoimmune disease—more than 100 have been thought to exist—despite more than a century of dedicated, exhaustive, but ultimately fruitless, searching for a cause. Of course.
Scientists have known for decades, with 100 percent certainty, that near impossible-to-detect spirochetes can cause cancer, trigger psychosis, and fuel countless health issues—much of this learned from the tragic 40-year study of 399 Black men with untreated syphilis in Tuskegee, Alabama—but have insisted that a bacterial infection couldn’t possibly be at the root of such carnage. Of course.
Examination & blood draw, Tuskegee Syphilis Study (public domain)
Scientists have attempted to create accurate diagnostic tests to better identify and predict myriad health conditions from autoimmune diseases to cancer—fine tuning blood tests, looking for telltale signatures in MRIs, searching for markers in cerebral spinal fluid, trying to glean genetic clues—but rarely have ever come close to finding anything definitive. Of course.
Scientists have tried to develop effective treatments for these health issues and chronic conditions, conducting countless clinical trials, experimenting on millions of people, and publishing hundreds of thousands of studies, all under the now-laughable auspices of “do no harm,” to no avail. Of course.
Scientists have continually poo-pooed and dismissed unexpected positive results when these patients, sporadically, suddenly get better, even cured, after being treated with antibiotics that traditionally are used to vanquish Lyme, bartonella, and other bacterial infections. Of course.
Scientists have produced a pair of blood tests to recognize the presence of Lyme disease antibodies—the ELISA and Western blot—for evidence that the body is fighting the bacterial infection. Except they’ve known since their development that the tests are woefully deficient at flagging neurological cases of the disease, the most common form. Of course.
And then, with more than 20,000 journal articles on the topic, scientists have long insisted that these very tests are deeply flawed because they produce too many unexpected results: positives. “Lyme serologies are notorious for false-positive results from numerous reported causes,” including syphilis, rheumatoid arthritis, lupus, and subacute bacterial endocarditis—yet they blindly trust negative tests. Of course.
What did you think was going to happen, when scientists don’t trust their own science, refusing to believe in the existence of a very real and obscenely destructive disease??
It would be convenient to justify the rote dismissiveness of academics, researchers, and physicians if it were restricted to laypersons proffering unsubstantiated opinions about Lyme. These laypersons, at best amateur health sleuths with degrees in non-STEM fields like history and English, are not medical authorities after all, a fact one member of ActiveMSers made when unsubscribing before the memoir’s biggest reveals: “I prefer expert opinions on MS.”
I understand the sentiment. When I started writing this memoir in the spring of 2022, I certainly didn’t expect to upstage the experts. I initially thought my case of Lyme was a rare outlier—an obscure version called Lyme encephalomyelitis, which so closely mimics multiple sclerosis that it’s virtually impossible to tell them apart—that tragically got overlooked and subsequently was misdiagnosed as MS. My original plan: get to the bottom of how that craptastic blunder materialized so that it wouldn’t happen ever again. Then I discovered that Lyme was broader than that, with at least 30% of people diagnosed with MS having a version of the disease, while still almost scoffing at the idea that it was more widespread—Lyme was just in a subset of MS patients, I theorized. Yet as I was strengthening that case, I kept finding evidence that it was broader still, causing me to revise my expectations yet again. It absolutely, positively, couldn't extend to all autoimmune diseases, I reasoned, and even then, why couldn’t someone have both an autoimmune disease and Lyme?
For months I tried to make that math work, trying to create a scenario where both coexisted. I couldn’t. Science kept rewriting and refining my hypotheses. Eventually, I just let it guide me, and did it ever, leading me to all those revelations despite me kicking and screaming in disbelief. Today, now, the science supports the entirety of my findings.
Surprisingly, indeed shockingly, another entity does, too.
Scientists.
Following the Cairns
As I’ve said many times before, I didn’t climb this impossibly steep mountain solo. Few of “my” discoveries are truly novel—instead, cairns left by past summiting attempts were invaluable guideposts that I dutifully followed. Like Rose Ichelson’s groundbreaking discovery of spirochetes in the spinal fluid of MS patients, a story I retold in Chapter 32. But as helpful as these trailblazers were, I made a concerted effort not to be swayed by the flag-waving groupthink of faithful believers.
In my quest to avoid being influenced by the hypotheses of other fervent Lyme advocates, I never, not once, submersed myself in web forums, Facebook pages, or Reddit threads dedicated to the topic. (Fun fact: I once briefly was the top-trending topic on Reddit for my NYT stem cell transplant fight, so I have a soft spot for that intelligent, inquisitive group.) I also purposefully wore blinders around sweeping claims and seminal books. Only in the last breaths of this memoir did I venture to explore them in any depth. And when I did, I made another unexpected (but totally expected) discovery: I had achieved a rare full McConaughey….
Those hypotheses of mine, refined over the course of 48 chapters? They’re spot on—alright, alright, alright!
To my relief, many of my discoveries seamlessly align with others, so much so that initially I was taken aback at seeing such support of my theories spelled out by medical professionals. It wasn’t just the scientists of the past—thanks, Dr. Ichelson and other vanguards who suspected spirochetal involvement, you were correct, it was Lyme (and related coinfections) all along—but scientists of the present, too.
Steven Phillips, MD, the coauthor of Chronic, wrote in his book that he strongly suspected that a number of autoimmune diseases were mislabeled cases of Lyme+ (his novel way to identify both Lyme and/or similar infections). Then, in a December 2023 video on X, he reinforced the autoimmune and long Covid connection to Lyme with the affirming clarity of a prestigious, Yale-trained doctor. That led to a predictable follow up in March, when he posted that his “office has treated tons of Long Covid patients & we're finding evidence of activated vector-borne infections in the large majority,” and “they respond to antimicrobials similarly to my average patient.”
Dr. Phillips, incidentally, is the Connecticut physician who ultimately pulled New York Times columnist Roth Douthat—the writer who aided me at the beginning of my Lyme journey—out of his own terrifying bout with the disease. He and all those brave souls who came before me deserve kudos and heaps of praise for standing up for what they believed in no matter the cost. And those costs were, and still are, steep.
When anyone in the medical community has made observations about Lyme disease remotely similar to my own, they have been immediately labeled as kooks and castigated by colleagues before being ostracized to the fringes. Despite being proven right again and again, Dr. Phillips, according to “the internet,” is a quack. (Search for him by name and Google autocompletes with the duck sound as its top recommended search for the man.) Even if physicians fully believe in the Lyme epidemic, it would be career suicide to make that known, forcing even the most respected doctors into the underground network of rebels to bide their time and wait out the knuckle draggers. It’s a known problem.
There’s a reason the adage “science progresses one funeral at a time” exists. In 1950, German theoretical physicist Max Planck famously said that “a new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” Research studies investigating this depressing phenomenon support Planck’s Principle. Until an acclaimed scientist passes away, “researchers within a subfield largely tend to cite each other and stick to collaborating with one another,” forming tired echo chambers where inspiring science goes to die.
The debris field of brave doctors who have dissented with mainstream ideas surrounding Lyme disease is littered with those who dared to deviate from accepted dogma.
Retired Mayo-Clinic trained physician Dr. Alfred Miller, who has been questioning, for years, the existence of autoimmune disease, earned his own authorless diatribe on LymeScience.org, which claims to unmask charlatans in the Lyme world by using “science.” The website regurgitates steaming pile after steaming pile—expectorating frightful terms like “misinformation,” “sham infections,” and “quackery”—attacking doctors who suggest Lyme is widespread and isn’t easily cured by a short course of antibiotics. Dr. Miller, who once pulled his daughter-in-law out of an ALS diagnosis, regularly tries to get attention on social media—“MS is caused by BORRELIA INFECTION !!!!!!!!”—but despite using all caps and 8 exclamation points, his March 9, 2024 post garnered as much attention as a dropped penny in a tip jar.
Then you have Ivy-League educated Dr. Alan MacDonald, a now retired pathologist who first reported the involvement of spirochetes in Alzheimer’s patients in the 1980s and discovered convincing evidence that Lyme disease could be passed down from mother to child. He laid out the connection between autoimmune diseases, dementia, and Lyme disease in the movie Under Our Skin, released in 2008. The movie, of course, was labeled “propaganda,” and Dr. MacDonald's opinions were summarily dismissed as such.
Over the years, countless well-meaning doctors have raised legitimate questions and concerns about Lyme disease being overlooked as a significant source of health problems only to be squelched, silenced, or sanctioned. Or all three. Dr. Daniel Cameron, a two-time past president of the International Lyme and Associated Diseases Society (ILADS) and author of “An Expert's Guide on Navigating Lyme Disease”, is regarded, depending on who you ask, as either a leading Lyme expert with more than 30 years of experience or an egregious purveyor of bogus treatments to cure a “fake disease.”
None of this is surprising. History is awash with people initially mocking landmark scientific discoveries as pure quackery: Galileo, Darwin, Einstein, Copernicus. “Nearly all great scientists start out as heretics nailing their theories to the door of conventional scientific wisdom,” reads the lead of a Wired magazine article.
Our Australian Nobel Prize winner Dr. Barry Marshall knows that game plan well. As he recounted in a 2010 interview with Discover magazine, his findings were such a reach, so “weird,” that “to gastroenterologists, the concept of a germ causing ulcers was like saying that the Earth is flat.” Frustrated at his theories being scoffed at and ignored, to prove his case unequivocally, he famously infected himself with the bacteria, a hugely risky tactic of self-experimentation that has killed scientists in the past. But Dr. Marshall’s discovery had another complication—it threatened to cost his colleagues serious money, undermining a $3 billion industry. “There was no incentive to find a cure.”
Sound a wee bit familiar? Only instead of just billions being spent to ineffectively treat a treatable disease, the stakes in the autoimmune universe alone are in the hundreds of billions. Or more. Thank goodness Dr. Marshall’s discovery promptly nipped that colossal turd sandwich in the bud. “No, it sat there as a hypothesis for another 10 years,” Dr. Marshall told Discover. “Some patients heard about it, but gastroenterologists still would not treat them with antibiotics. Instead, they would focus on the possible complications of antibiotics.”
How quaint, the concerns about “antibiotic complications” trumping a cure and preventing a lifetime of progressive health issues or death. He wrapped up his interview with the science magazine by circling back to his discovery, the heart of which was an elusive spirochete. “Helicobacter made us realize that we can’t confidently rule out infectious causes for most diseases that are still unexplained.” Dr. Marshall even postulated recently that a spirochete could, gasp, be at the root of long Covid. How prescient. And yet, even though the article reminded readers that “in an age when many doctors dismiss unexplained conditions as ‘all in the head,’ Marshall’s story serves as both an inspiration and an antidote to hubris in the face of the unknown,” antidotes are worthless if they gather dust on the shelf. Or remain unread in a memoir in a distant corner of the internet.
Scott, my ridiculously smart friend now living in Australia, had an opinion of how Sit Down Before Reading would be received based on his decades of working with others who had PhDs. Besides my wife, he’s the only one to preview nearly the entirety of SDBR, and refreshingly assured me that it wouldn’t take anywhere close to the ten years it took Dr Marshall to see my discoveries accepted. “I’m thinking ’24 or ’25,” he said. He then clarified his answer. “2224 or 2225.” Two hundred years from now. Thanks, Scott. Thanks so much for the pep talk. In the past he might have been right.
But if you can’t find fault with my conclusions, sitting back passively is unacceptable... Don’t defer this responsibility. Defend me. Now. Loudly.
When doctor after doctor raised the alarm of an ongoing Lyme disease epidemic, it didn’t matter—no one listened. When desperate parents of sick children alerted physicians of an ongoing Lyme disease epidemic, it didn’t matter—no one listened. When health advocates breathlessly told the NIH, CDC, and government representatives about the horrors of an ongoing Lyme epidemic, it didn’t matter—no one listened. When sufferers of Lyme disease protested on the streets, made movies, wrote books, and screamed from the rooftops about an ongoing Lyme epidemic, it didn’t matter—no one listened.
But here’s the thing. It all finally mattered—and dismissive scientists finally have no choice but to listen.
Paying the Piper
So here we all are, in an epic fight to save humanity… a fight with the doctors meant to heal us, the pharmaceutical companies meant to treat us, the governments meant to serve us, and even doubting friends and family meant to support us. It would appear to be unwinnable, with the CDC going out of its way to warn away anyone who might dare to question the findings of the experts.
A Word of Caution: If you are experiencing fatigue, body aches, or difficulty thinking, it is important to know that there are many possible causes for these symptoms other than Lyme disease. These include other infections, medications, depression, diabetes, and cancer. It is especially unlikely that Lyme disease is the cause of prolonged or recurring symptoms if you tested negative for Lyme disease using a recommended test or have not lived in or traveled to areas where Lyme disease is common.
We now know none of that is true. None of it. The CDC even goes so far as to discourage use of the term chronic Lyme disease because “it implies that prolonged symptoms are caused by an ongoing bacterial infection.” Until there is conclusive evidence to the contrary, I think we must imply just that—that infections not only are ongoing but raging. And for damn good reason.
Despite two years of treatment, my spirochetal invaders are still very much alive and return to their marauding ways whenever the opportunity presents. Any antibiotic pause lasting longer than a couple of weeks tempts disaster, as issues with my bladder leak to the forefront and the smothering seeds of paranoia from Lyme-induced psychosis start sprouting anew. The laughable suggestion that my continued disability is merely the residual remnants of a past infection cured long ago is fanciful thinking. Post-treatment Lyme disease, or PTLD, is clearly not a thing—it’s just stubborn Lyme disease, grinding on in perpetuity.
But that is not the scariest part. Without serious, immediate change, it’s going to get worse. For all of us.
Way, way, way worse.
Now 25, Sara Kays released a song in 2022 called “Math” that struck a nerve. It begins, “My teachers were right, I use math every day of my life,” she sings, reflecting on her days in high school. “I add, subtract, divide, and most of the time it makes me want to die.” The math of this unfolding Lyme epidemic is going to make most of us relish the peace of resting six feet under.
For millennia, Lyme disease has been swirling around like the tornadoes of the Midwest, causing the sporadic decimation of health, sure, but on a scale that is digestible, akin to the accepted costs of living and growing older in Tornado Alley. That is changing, and quickly. Fortuitously, or terrifyingly, the in-utero transmission of Lyme has exposed another unmissable pattern, leading us face first into an absolute behemoth of a hallelujah booyah. We now have a rational, clear explanation for the steady rise of autoimmune disease diagnoses and other conditions, particularly since 1990.
It’s generational.
While climate change may be contributing to the spread of infected ticks, as Lyme disease gets passed down through generations—and those infected children have children of their own—the disease spreads menacingly just as it has for centuries. But as the global population has expanded and its residents have relocated, the spread of Lyme has accelerated organically and far beyond endemic areas. Supercharging that spread? The trisection of three perfect storms all occurring around the same timeframe: World War II, the Baby Boom, and air travel.
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World War II, the Baby Boom, and air travel. Left: Heavy infantry guns in the forest of Hürtgen, Germany; photo credit: Jager (22 Nov 1944). Center: Baby Boomer children playing with toys, public domain. Right: Boeing 707 "Stratoliner", 3rd 707-121 production airplane, N709PA, later delivered to Pan Am on 15 August 1958. Public domain.
Flying overtook train travel in the U.S. in 1955, and flying overtook ocean liners for crossing the Atlantic in 1957, not even a full three generations ago. But it was the return of GIs from the European theater—a theater conveniently populated with Lyme-infected ticks and similarly infected young women—that has helped drive this latest surge. Beginning around 1945, a bevy of newly circulating cases of mostly dormant Lyme disease started spreading, brought home by soldiers. And we all know what came next: babies. Lots and lots of babies. After a couple generations—with Lyme stealthily spreading—the bill to humanity’s health started coming due, as a swell of sickness began to rise, notably, in the 1990s.
But the part that is most horrifying? You might have skipped over the foreshadowing in the hallelujah booyah chaos of Chapter 48, the part about health issues “rising in young adults” and “major increases in risk between successive generations.”
We currently are deep into generation three, transitioning to a fourth, which means that the prevalence of autoimmune conditions, mental illnesses, and a swath of cancers and other health issues should now be breaching the levees, worrying scientists and the public alike.
Based on all available data, we’ve clearly reached the flood stage. And, oh yeah, people are freaking the hell out.
“Autoimmunity is reaching epidemic levels, with some studies estimating an increase of 3-12% annually,” warns Molly Murray, President and CEO of the Autoimmune Association. She then highlights outright terrifying trends. Type 1 diabetes has nearly doubled in the past 40 years, celiac disease has increased fivefold in the last 30 years, MS worldwide has increased 30% since 2013, and inflammatory bowel disease has jumped 46% in 15 years.
Last year, Dr. F.W. Miller, the former head of the Environmental Autoimmunity Group for the NIH, put out an urgent call to action to address the increasing prevalence of autoimmunity and autoimmune disease, writing in Scientific American:
Our recent research indicates that one type of autoantibody called antinuclear antibodies increased nearly 50 percent in the U.S. in less than 30 years. This is not simply because we are screening more people. Even more concerning, teenagers in the study experienced a nearly 300 percent increase between 1988 and 2012. Many of these children might not ever achieve their full potential, because battling chronic illness will alter their lives.
But, for gosh sakes, don’t panic. Dr. Miller and the experts are pretty confident that they know just what to blame for this rising scourge.
“Both autoimmunity and autoimmune diseases are dramatically increasing in many parts of the world, likely as a result of changes in our exposures to environmental factors,” says Dr. Miller. “Current evidence implicates the momentous alterations in our foods, xenobiotics, air pollution, infections, personal lifestyles, stress, and climate change as causes for these increases.”
All the usual suspects. But infections? I’ll give that a weak, incomplete McConaughey—a single alright. Heck, roll enough bowling balls and you are bound to eventually avoid the gutter and hit a pin or two. It’s not so much “momentous” alterations, just Lyme and math. But speaking of hitting some pins, let’s start knocking down all ten at once, because now, evidence of that predicted Lyme surge is swamping research and spilling into every corner of society.
A large-scale 2022 study out of China confirms this predestined wave of illness. “Patients with five major autoimmune diseases [including rheumatoid arthritis, lupus and Sjögren's syndrome] in China had an increased risk of developing cancer, with a predominance in women and younger patients.” A 2019 meta-analysis out of South Korea discovered the same association with gastric cancers, identifying “significant associations for autoimmunity overall,” as well as an ominous sign. These types of cancers had been steadily declining after the discovery of the H. pylori by oft-mentioned Dr. Marshall, who confirmed that the spirochete caused cancer. “However, cancer registration data indicate unexpected increases among recent generations in many parts of the world, implying etiologic factors other than H. pylori may be responsible.”
Unexpected increases among recent generations.
A 2021 study concluded as much in terms that couldn’t have been much starker.
The rise in incidence of autoimmune diseases parallels the rise in incidence of their respective cancers, such as autoimmune gastritis and gastric cancer or inflammatory bowel diseases and colon cancer. The increased incidence of these cancers is especially conspicuous in adults younger than 50 years of age and, in the case of gastric cancer, the increase disproportionately affects females. This epidemiological evidence suggests that autoimmunity might be a cause of cancer.
Breast, prostate, lung, and colorectal cancers are the most common in the world, with breast, thyroid, and colorectal cancers making up the largest numbers of early onset cases. According to an August 2023 story in The Washington Post, “the biggest increases were seen in women and in younger people diagnosed with gastrointestinal and breast cancers.”
A 2024 study confirmed that breast cancer rates were indeed rising dramatically in young women. They also confirmed the distinct rise between generations. “The researchers also found differences in breast cancer risk by year of birth… the most dramatic difference was a greater than 20% increased risk of breast cancer among women born in 1990 compared with women born in 1955.”
If men think they are in the clear, um, yeah, no. The Lancet published a hair-raising warning in its April 2024 issue concerning prostate cancer, “the most common cancer in men in 112 countries, [which] accounts for 15% of cancers.” And calling it hair raising might be underselling it. They report that cases are expected to more than double worldwide by 2040—and they believe it’s unstoppable due to its assumed heritability. “This surge in cases cannot be prevented by lifestyle changes or public health interventions alone, and governments need to prepare strategies to deal with it.” A global challenge that needs an all-hands-on-deck approach. “Without urgent action, these trends will cause global deaths from prostate cancer to rise rapidly.”
What else is skyrocketing? Neurological disorders, says a breathtaking study published in the April 2024 issue of The Lancet Neurology.
“The number of people living and dying with such conditions as Alzheimer's disease, other dementias, meningitis, and stroke has risen ‘substantially’ over the past three decades, an international collaborations of researchers reported,” says a Newsweek article covering the research. “Their analysis revealed that, in 2021, 3.4 billion people suffered from a neurological condition—this is roughly 43 percent of the world's entire population. … The team found an 18 percent increase in disability, illness and premature death caused by these conditions over a 31 year-period.” The most common neurological health disorders discovered? “Stroke, brain injury, Alzheimer's disease and other dementias, migraines, nerve damage, meningitis, epilepsy, autism spectrum disorder and nervous system cancers.”
The article concludes with a common refrain: “The new study greatly emphasizes the need for more research into these conditions. However, neurological conditions are famously hard to treat.”
Well, duh.
Because “the experts” all have no friggin clue that they are dealing with a stealthy bacterial infection and its band of seedy brothers. But it’s not just the experts who have made fateful assumptions. It’s all of us, me included.
Righting Wrongs
For 15 years, I preached from my ActiveMSers pulpit about everything from the importance of exercise in multiple sclerosis to the absolute moronacy of eschewing FDA-approved treatment.
"Be active - stay fit - keep exploring" was my ActiveMSers mantra.
I was wrong. And for better or worse, I have lots of company.
We’ve been on the cusp of breaking the Lyme epidemic case wide open for years, but scientists have never quite connected the final dots. Journalists have been regaling us with these health stories of promise that just skirt the true answer so many times it hurts the soul. (Don’t get me started on those “medical mystery” tales, many of which are not so mysterious after all.)
Take the February 2024 feature “Long covid is not the only chronic condition triggered by infection” in The Economist. World-renowned Johns Hopkins researcher Dr. John Aucott—who wrote me that dear John Johns’s John letter when he informed me that he was unable to take on my case back in Chapter 17—made a stunningly revealing observation, reported the magazine. Dr. Aucott was “struck (‘shocked’, he said), when reading an early paper on long covid, by how similar a chart of its principal symptoms was to one he had published on [Lyme].”
We now know, of course, why the two conditions appear identical—they are the same thing. That makes it so much harder for me personally. Knowing what I know, and knowing what’s around the corner, it’s impossible to read the paper or catch the news, or even watch TV these days without peering through a wall of fingers. It has turned so overwhelming, so cacophonous, that I have resorted to emailing myself these stories to keep track before they get overwritten in my memories. The article in The Washington Post about the “burst of POTS cases” in young females that “has puzzled doctors” is one of over 1,500 emails waiting in my inbox. I can’t escape the onslaught.
When the Sunday New York Times ran the May 5, 2024, front-page piece “Thousands Believe Covid Vaccines Harmed Them,” paragraphs bled with agonizing confirmation of my theory that vaccines can awaken dormant Lyme disease, with a “variety of symptoms following vaccination, some neurological, some autoimmune, some cardiovascular.”
The following day, the paper ran a painful story about how, “in recent years, mental health has become a central subject in childhood and adolescence,” which could be “leading them to over-interpret their symptoms and see themselves as more troubled than they are.” Gaslighting symptoms, because why else would mental health issues be rising so alarmingly, especially in the young?
As discussed extensively in the previous chapter, cancer is another affliction seeing an unwanted renaissance. “Breast cancer rates among women in their 40s are on the rise, increasing by 2 percent a year between 2015 and 2019,” warns an April 30 piece in the Times, as experts are recommending regular mammography screening a full decade earlier than the longstanding benchmark of 50.
I can’t even enjoy the mindless escape of low-stress reality TV. When I caught a contestant on the latest season of The Amazing Race telling a heartbreaking story about first losing her mother to breast cancer at 17, then her father to non-Hodgkin's lymphoma that same year, I nearly lost it. Lyme disease is implicated in both cancers and can spread sexually. Their fates were all but unavoidable.
Spiking cases of mental illness in the young. The alarming rise of autoimmune disease in the young. Shocking rates of cancers in the young. All unexplained, the articles always lament. Maybe it’s connected to the pressures of social media or the consumption of Western vices or something in the environment, doctors always hypothesize. More research is urgently needed, the panicked scientists always say.
The drumbeat of our engulfing Lyme epidemic is going to turn booming. Did anyone read the May 16 piece in Time, “Long Dismissed, Chronic Lyme Disease Is Finally Getting Its Moment,” about a 20-year quest to unearth the disease in one patient with a case that eerily resembles my own, all the way down to a tick discovered on the scalp and a subsequent MS misdiagnosis? There is no safe haven, no harbor of respite. From paupers to princesses, all of us are at risk.
Time Magazine article, "Long Dismissed, Chronic Lyme Disease Is Finally Getting Its Moment" by Jamie Ducharme, photographs by Jiatong Lu. May 16, 2024.
Despite the impending conclusions of conspiracy theorists worldwide, people in white coats ignoring me or any of the other Lyme advocates over the years wasn’t a grand scheme to hide the truth of a parasitic epidemic. There’s no evil cabal of infectious disease doctors, no Big Pharma collusion to bury Lyme treatment, no subterfuge among health insurers to keep people sick, no underhanded cover up and purposeful malevolence on the part of the Federal government (regardless of whether or not they conducted experiments on ticks on an island off the East Coast, a popular belief among some).
I’ve already spelled out in detail how this all innocently, and tragically, unfolded. Everyone missed it. Again and again and again and again and again. It’s everywhere you look.
There aren’t enough sports cliches—stubbing that two-foot putt, missing that yawning empty net, shanking that chip shot from the five-yard line, clanking that wide-open layup—to do these perpetual close calls justice. Worse, some involve me directly. If even a single researcher or doctor had taken me seriously and entertained one of my hypotheses—after I asked, always nicely, politely, and professionally, for help—he or she might be joining me at a ceremony in Sweden. Instead, they are left looking at ignored messages from a pleading guy named Dave, contemplating what might have been.
As gratifying as it is to have the science confirm my findings, it has been surprisingly rewarding to find answers to other obscurities.
My favorite confirming research study has to be the one released in October 2023 concerning the benefits of taking Viagra, a drug that I’ve noticed has an effect on my Lyme disease. Researchers from Mount Sinai Medical Center in New York found that the erectile dysfunction pill lowered the risk of Alzheimer’s disease an incredible 62% in men, and an equally stunning 47% in women. Meanwhile, study findings presented at the 2023 annual meeting of the American Urological Association found that ED drugs lowered the risk of heart failure in men up to 33%, reduced the risk of early death by up to 41%, and aided other common heart issues.
Chronic heart issues and dementia are intimately associated with Lyme disease.
There is one more piece of business I need to attend to before I close this chapter. I did, after pretending to do my business at the urinal, manage to conduct a short interview with Mr. Turner at the restroom sink. I even got to meet his then-wife Jane Fonda, who I also briefly interviewed. I asked her what she enjoyed most about my home state, New Mexico. She said, “The light.” I asked her to expand, as it is hard to write an entire article based on a two-word sentence. “The light,” she repeated.
My story about meeting those two never ran in the paper; I quit shortly thereafter. Chasing down interview subjects into bathrooms just wasn’t for me. But I kept writing and evolved into a tenacious scribe when the facts didn’t add up. Think of the honey badger, crowned in 2002 by the Guinness Book of World Records as “the most fearless animal in the world.”
In the preface of Sit Down Before Reading, I told readers that I would almost certainly need their help before I was finished. I was prepared to do the hard sell, imploring those moved by my story to take action, any action. Spread news of my memoir on social media, inform their doctors about the unrealized risk of Lyme disease, and share my discoveries with family and friends. That was all before I had written a single chapter, when I thought my misdiagnosis was an anomaly, my audience finite.
Last month, my memoir and SitDownBeforeReading.com website received a record number of curious readers, besting the record set the month before, which bested the record set the month before that. This month will set another record, so will the next.
You’re already witnessing the beginnings of one reckoning, as sickness from untreated Lyme skyrockets. But there is another reckoning on the horizon equally concerning. The tsunami of outrage from all walks is gathering, the warning signs everywhere.
The fifth and final tenant in my SHARDs doctrine is dismantle or defend, don’t defer. This seems like a good time to remind readers what I wrote in Chapter 37.
I invite all readers, particularly those with degrees attached to their names, to strip down and try to take apart what I’ve written in these pages. Dismantle my research and Ginsu it into tiny digestible bits that you can enjoy with a nice glass of Chianti, fava beans optional. But if you can’t find fault with my conclusions, sitting back passively is unacceptable. Follow the lessons imparted by history—the decades it took before doctors accepted the idea of germs and handwashing, the years it took for ulcers to be recognized as an infection—and take action. Don’t defer this responsibility. Defend me. Now. Loudly.
It’s going to turn thunderous, ear-splitting, deafening. It will become so cacophonous that the mere act of thinking will be hard. I urge everyone to prepare yourselves.
Then again, never mind.
With what’s to come on the following pages, you can’t.
