Sit Down Before Reading: A Memoir by Dave Bexfield
The mid-1970s were awash in memorable firsts for this writer. The first, and so far only, time that the Secret Service had to come to my rescue at the White House. (Even First Lady Betty Ford couldn’t assuage a sniffly second grader who, all alone and momless for the evening, cared not one lick about the special Christmas party being thrown for the children of diplomats.) My first official kiss, at least in my starry third-grader eyes. (A decidedly platonic peck on the cheek from Ms. Joyce DeWitt of Three's Company fame after a play performed at the Kennedy Center.) And my first Agatha Christie movie, Death on the Nile, released in 1978.
Left: Publicity photo of the roommates from the television program Three's Company; from left: Joyce DeWitt (Janet}, Suzanne Sommers (Chrissy), John Ritter (Jack). 8 March 1977; public domain. Center: The original British poster for the 1978 film Death on the Nile. 1978; Wikipedia. Right: Invitation from Mrs. Ford to attend a children's Christmas Party in 1974.
I was shocked by what I saw, but not by what was on the big screen. A handful of moviegoers with notepads got up and left right as the murderers were being revealed. I asked Dad what was going through their delusional minds—they were going to miss the ending and lose a whole dollar! He explained that they were going to try to solve the mystery on their own and come back later to watch another viewing to see if they got it right. The mere idea blew my fourth-grade, budget-conscious mind. Besides, cracking the case was futile. Of all the near dozen potential killers, I could eliminate only two suspects who had airtight alibis.
The pair turned out to be the murderers. Of course.
Not every medical mystery requires a cunning detective with a celebrated, upward-curled mustache to crack the case. But, as Ms. Christie is quick to point out, any coincidence is worth noting, even the far-fetched ones. I should have paid better attention. And so should have medical researchers.
Let’s briefly review the five most critical truths we’ve discovered about Lyme disease in these pages.
First, at least 1 in 7 people worldwide have antibodies to the disease, making it among the most common, widespread illnesses on the planet.
Second, no region is spared. Even though people often get infected after living in or visiting an endemic area for the disease, the Borrelia burgdorferi spirochetes are widespread.
Third, it is frequently a deceptively latent infection, often laying mostly dormant in the host for months, years, even decades until it wakes up.
Fourth, it requires a disturbance in the immune system to be triggered; trauma and stress are known initiators, but most often that trigger is an illness.
And fifth, it presents with a vast array of symptoms that may or may not be diagnosed as one or more autoimmune diseases. Over time and with a large enough patient population, every one of these diverse symptoms will arise either on its own or as an autoimmune misdiagnosis. Every. Single. One.
Conveniently, numerous outlets have assembled comprehensive lists of Lyme disease symptoms, and the breadth of areas affected is breathtaking—as in, there is no way to recap them all in a single breath or two. It seems as if no part of the body is spared. Brain and nerves, eyes, ears, smell and taste, neck, lungs, heart and blood, kidneys, hands, legs and feet, reproductive systems, digestive systems, bladder and bowel, skin and hair, muscles and bones. For each affected area, the symptomology further expands, exposing a raft of health issues so vast that if one were to lash them all together it would be more akin to an aircraft carrier than a raft.
The CDC tried to put out an abridged list. Tiredness or fatigue that interferes with daily life, fever, respiratory and heart symptoms, chest pain, fast-beating or pounding heart, neurological symptoms, difficulty thinking or concentrating, headache, sleep problems, pins-and-needles feelings, change in smell or taste, depression or anxiety, digestive symptoms, joint or muscle pain, rash, and more. And these are just the most common ones, as the CDC makes a point to say “not a comprehensive list.”
Round about this time is when Ms. Christie’s Belgian detective Hercule Poirot (pronounced hur-kyool pwaa-row) and his meticulously groomed mustache would reveal, with flourish, his dramatic findings during the case’s denouement. “Ze list of symptoms for Lyme disease is quite long and unique, no,” he would say in his Belgian/country French accent. “Zer is nothing else like it. Except…”
Suspenseful pause.
“Zis is not ze CDC’s description for Lyme disease.”
Anomaly Awareness
I imagine sharp readers, particularly those who use microscopes or stethoscopes at work, have had questions welling over the last few chapters. Me too. And it starts with multiple sclerosis. If answers await in the anomalies, how do I explain the contradictions in the demyelinating disease?
With more than 20 types of disease modifying treatments, MS is a rare “autoimmune” disease with a plethora of treatment options. It’s also a relative outlier in studies, showing up less frequently as a partner with other autoimmune diseases. Even the lead author of the UK study that found 1 in 10 residents suffered from one or more autoimmune diseases noticed the discrepancy. “We observed that some autoimmune diseases tended to co-occur with one another more commonly than would be expected by chance or increased surveillance alone,” said Dr. Nathalie Conrad. “But this phenomenon was not generalised across all autoimmune diseases—multiple sclerosis for example, stood out as having low rates of co-occurrence with other autoimmune diseases, suggesting a distinct pathophysiology.”
Dr. Conrad's findings reinforce mine. Something about MS is different. I’m confident that 30% of those diagnosed with MS have a form of Lyme disease, one that appears to be aggressive. And evidence continues to mount that autoimmune diseases may not be what they purport to be. But the remaining 70% of MS patients, what do they have? For much of this memoir I had been under the assumption that MS, the real deal, existed, but now that belief smacks headfirst into the “S” of the SHARDs tenet. It makes little sense that of the more than 80 autoimmune diseases identified, MS, and MS alone, is a rare authentic one… and that, oh yeah, it also, by amazing coincidence, happens to share most symptoms with Lyme disease. My virtually concussed brain cannot make that connection, one that stretches the bounds of plausibility.
Ah, crap…. I’m an idiot! Dave, Dave, Dave. I’ve been following the same tired path of past research, the same research that I’ve been dismantling in these pages. I’d been abiding by the idiom “the devil is in the details,” convinced that if I paid better attention to the minutia, they would reveal answers that have escaped scientists for decades. But that idiom can be read in other ways. While details can elucidate, they can also distract and deceive, blurring the big picture. The very devil can lurk within the details, spewing inconsequential noise, leading those hunched over magnifying glasses to find largely meaningless connections.
Let’s try another hypothesis on for size. That the “other” MS, the other two thirds, is merely another version of Lyme that just presents and reacts differently. After all, although MS technically boasts lots of treatment options, many have such similar mechanisms of action that they are more one-off copycats than novel. Worse, the most promising drug in the MS pipeline in years—the BTK inhibitor evobrutinib—just failed a pivotal late-stage trial. And the overall performance of even the best drugs is viewed as “meh” by top neurologists.
“MS drugs aren’t really that effective,” admits acclaimed MS specialist Dr. Brandon Beaber in a September 2023 video. While newer drugs prevent relapses and lesions on MRI, “in terms of preventing long term accumulation of disability, the data are less robust.” At the conclusion of the video, he sums up his experience treating patients appropriately. “The variation and the natural history of the disease is so significant that it's ultimately better to just be lucky and have milder MS.”
The idea that a different variety of Lyme exists in MS cases has more than just merit. As luck would have it, around the same time that Dr. Beaber’s “Hot Takes on MS” was posted, new research was released with confirming evidence that other strains of Lyme disease are in play around the world. On the final day of August 2023, a consequential study dropped, revealing the most comprehensive genome sequencing of Borrelia burgdorferi to date.
The research highlights how evolution, geography, and differences in strain genetic diversity contribute to clinical manifestations and infections throughout the United States and Central Europe, laying the foundation for further research into, and treatment of Lyme disease. For example, Lyme arthritis is more often reported in the US compared to Europe, likely because the infection in the US is derived mostly from the B. burgdorferi strains which are more arthritogenic. The study also showed that strains with OspC, (a protein on the surface of the bacteria) type A appear to be common among patients in the Northeastern US.
Randall the actuary, who lives in the Pacific Northwest, has long wondered about his own case of the tickborne disease and its relentlessness. (He continues to improve, incidentally, as his muscles awaken.) Now he gets some clarity. That aggressive strain isn’t confined to the Northeast. “In a previous study, approximately 90% of Northern Californian patients were infected with B. burgdorferi OspC type A, and these patients presented with more severe disease.”
Proof that these varying strains exist helps explain not only the virulent form of Lyme that I previously associated with 30% of MS diagnoses, but also may explain other niggling anomalies that don’t line up just so with my hypotheses. You do not have to have a PhD to understand that different strains simply produce different symptoms, just like Covid-19 and its diverse variants. Some strains of Lyme might lead with arthritic symptoms, others with rashes, others with neurologic setbacks. Like the variety of ice creams available at Baskin-Robbins, it’s still an infection, just pick a scoop from the 80+ flavors available. Further complicating matters, the patients themselves. Immune systems inherently respond differently to even the same threat. Think allergies and a single trigger, say peanuts. Some people break out in hives while others go into anaphylaxis.
By most measures, though, MS is more confounding than other mimics of Lyme. Are the majority of cases—those in the 70th percentile—an entirely unique strain of Borrelia? Consider that interferon beta, the class of drug first used to treat multiple sclerosis, has a reliable side effect in traditional cases of Lyme: it fires up the disease. Yet for many diagnosed with MS, types of interferons help, at least somewhat. And many MSers who have received stem cell transplants have seen their disease retreat for a decade or longer, while other aggressive therapies appear to aid a substantial percentage of patients. I would hesitate to discard any of these options without more clarity. Plus, a tantalizing question remains. Could these treatments be repurposed for other strains of Lyme?
But one stubborn inconsistency remains. The territory of blacklegged ticks, the known vector for Lyme, is finite. Even though the CDC has confirmed that the western blacklegged tick is now found throughout California and the western half of Oregon and Washington, and your standard blacklegged tick can be found as far west as Texas, Oklahoma, Kansas, Nebraska, and the Dakotas, it doesn’t blanket all areas where MS or autoimmune diseases are found. What if Lyme disease jumped to other vectors, the disease morphing further with it?
Maybe.
According to Mayo Clinic, there are at least 10 varieties of tick that carry disease in the United States, and no state is spared. Worldwide that explodes to an estimated 60 types of ticks that can spread disease in humans. And the consequences have been devastating. An August 29, 2023 story in The Washington Post screams “A deadly tick-borne epidemic is raging.” Only it's not Lyme disease. And it's not blacklegged ticks. And it's not in the United States. Rocky Mountain spotted fever, spread by the ever-present brown dog tick, the most widespread tick species in the world, has been increasingly killing children in northern Mexico.
And it’s not just other tick species that pose potential risk.
A practicing Connecticut physician wrote The New England Journal of Medicine more than 30 years ago about alternative vectors after witnessing one of his patients come down with the disease after being bitten by a horsefly while jogging in Old Lyme. The doctor’s concerns appear to have been validated.
“Other species of ticks such as the dog tick or wood tick, the lone-star tick and the rabbit tick, and biting insects such as mosquitoes, deer flies and horse flies have been shown to carry the Lyme disease bacterium,” reports Michigan’s Department of Natural Resources. Studies have demonstrated repeatedly that Borrelia burgdorferi, as well as the common coinfection Anaplasma, are regulars on the flying vector circuit, as 40% of the deer flies sampled in a 2016 study were found to harbor Lyme disease, and another 29% were saddled with Anaplasma.
The possibility of alternate forms of transmission, though, has long been dismissed by the CDC. “There is no credible evidence that Lyme disease bacteria can be transmitted through air, food, water, or from the bites of mosquitoes, flies, fleas, or lice.”
It’s true. Transmission to humans hasn’t been replicated in a laboratory setting. Ahh, ya got me, CDC. You’ve pooched testing, failed at developing a vaccine, have zero answers for long forms of the disease, and misdiagnosed tens of millions. But trust you on this one…. At this moment in this medical memoir, anything Lyme related deemed “not credible” by the CDC should be looked at with incredulity.
But wait. There is another infection that closely resembles Lyme disease: Bartonella, or cat-scratch fever. The vectors range far beyond ticks and include flies, lice, fleas, spiders, mites, ants, and, duh, cats. And the territory of these vectors is boundless. And Bartonella mimics autoimmune disease, MS included, with aplomb. A prominent MS advocate confided in me that he, too, has long questioned his MS diagnosis, instead suspecting Bartonella. His symptoms arrived after a biting flies incident while hiking in the Cascades, the Pacific Northwest mountain range. Not surprisingly, this infection befuddles the best of doctors.
The New York Times runs a regular Diagnosis column in its magazine. Suspicions of a Bartonella infection are frequent denizens of the popular series, and sometimes those suspicions prove correct. She Had Constant Fevers and Her Feet Were Swelling. What Was It? “All her tests were normal,” the subhead teased. “Soon she felt too sick to go to work.” And another one—He Had Blood in His Urine and a Strange Rash. What Was Going On?. “At the E.R., the patient learned his blood wasn’t clotting,” reads the subhead. “His mother had the same condition — but the trigger turned out to be a surprise.”
The most depressing fact in all of this: without wholesale changes in how diseases are researched, scientists are going to remain trapped in that research roundabout, waving at those YouTubers and Chevy Chase as his European vacation goes south in London. They are just going to continue to hopelessly “refine” the signatures of nonexistent diseases and continue to get frustrated when these markers inexplicably overlap with each other. Without looking at the entire picture instead of increasingly microscopic snapshots at what they believe to be dozens and dozens of individual diseases, researchers will never discover that it’s just a combination of Lyme and coinfections. It’s a guaranteed, never-ending, fruitless loop of futility doomed to fail.
As maddening as all of this is, this fight to find the truth, the quest is not doomed to fail. In recent years, governments around the world have been plowing money, billions upon billions, into researching the calamitous effects of the most mysterious and misunderstood condition of our time. In fact, it is so mysterious and misunderstood, researchers don't even realize what they are investigating.
"Ze evidence is indisputable, yet no one would suspect ze true culprit,” detective Hercule Poirot would intone. “Ze list of symptoms for Lyme disease matches ze CDC’s list of symptoms for one simple reason… Zey are ze same disease.”
Punching through the audible gasps flooding the room would be shouts of “preposterous!” and “impossible!” and “poppycock!” But science, good science, is unbreakable. On the morning of December 18, 2022, critical puzzle pieces effortlessly snapped together as I realized what was happening. The Lyme disease epidemic had surreptitiously collided with another health travesty behemoth, ripping a gaping hole in the understanding and evolution of medicine and disease.
Long Covid.
The Smoking Gun
The agony of long Covid sufferers—estimated to be, at the minimum, more than 65 million worldwide, with nearly 80% saying it affects their daily lives—punctures my social media feeds daily. Pleas for help. Pleas for understanding. Pleas for anyone to believe them. Lost jobs, lost spouses, lost lives. “Day 90 of long Covid. Still am almost entirely housebound. Still can't walk more than a few blocks. Still can't make myself meals or take care of myself. Still on medical leave. Still have trouble thinking and reading. Still have crushing fatigue. Still no end in sight.” And it’s just beginning for that young man. His story is all too familiar to anyone who has suffered from long Lyme. Also familiar: the lengthy list of symptoms. This is how the CDC defines long Covid.
Some people, especially those who had severe COVID-19, experience multiorgan effects or autoimmune conditions with symptoms lasting weeks, months, or even years after COVID-19 illness. Multi-organ effects can involve many body systems, including the heart, lung, kidney, skin, and brain. As a result of these effects, people who have had COVID-19 may be more likely to develop new health conditions such as diabetes, heart conditions, blood clots, or neurological conditions compared with people who have not had COVID-19.
That’s essentially the description of chronic Lyme disease. The exact description. And patients to practitioners to principal research scientists have noticed, boy have they ever. It’s a wonder there have been no reports of brain injury from all the head scratching.
“Long COVID and chronic Lyme share so many features that it’s uncanny,” said Michal Caspi Tal, principal scientist in biological engineering at MIT studying long Covid in a September 2023 Boston Globe interview. “In terms of clinical presentation, [long COVID and chronic Lyme] look like the same disease even though one is caused by a virus and one by bacteria.”
Dr. Tal and researchers worldwide have all made the same fatal assumption, crossing “bacterial infection” off the long Covid suspect list straightaway, reminiscent of my flawed attempts to solve the riverboat murders in that darkened theater 45 years ago. After all, how could it be remotely possible that a bacterial infection sprouts from a viral one? “Now you really are sounding crazy,” said Laura when I mustered the courage to tell her what I had discovered.
Those five critical truths about Lyme disease from earlier? Reread them; I’ll hold your place.
At least 15% of the planet’s population has been infected with Lyme disease, well over a billion people. In medical parlance, that’s known as a “shit ton.” But many of these people are not visibly sick, as the virus often lies dormant, waiting for a match to set it afire. Enter stage left Covid-19, the biggest flamethrower humanity has ever seen. The 2019 pandemic engulfed the world in sickness, poking the hibernating bear. There’s a reason one is told not to poke the bear.
As the reawakened bacterial infection ran amok in a subset of patients who recovered from Covid—more often in serious cases, although the severity of the poke matters less than one would think—scientists became increasingly flummoxed. The viral infection had been defeated, but sometimes, randomly, a new menace surfaced: long Covid. Oddly, while Covid struck both sexes equally, females were more than twice as likely to come down with lingering aftereffects, a similar pattern seen with autoimmune diseases. Traditional viral treatments had little effect, ditto novel attempts to treat the lingering disease. But the most pressing confounder of them all: the wild array of symptoms, symptoms that curiously align closely with Lyme disease and ME/CFS. The Yale School of Medicine even went so far as to commit to studying this specific trio of similar diseases, establishing the new Center for Infection & Immunity August 18 with a target 2025 opening.
“Never before, scientists say, have so many of the world’s researchers focused so urgently on a single topic,” heralds a 2020 headline from The New York Times about the unrelenting attention spent on Covid. A year later, an astounding 250,000 studies had been published. By September of 2023, Google Scholar reported 5.5 million scientific articles on the subject, with long or post Covid—the world’s number one medical mystery—increasingly a focus.
Funny how none of it makes sense—until it all, quite suddenly, does.
To get here, I’ve been painstakingly following the countless cairns left by sufferers, researchers, and advocates. For my theories to be supported and recognized, robust research needs to back my conclusions. So, you can probably envision the excitement I experienced when I stumbled upon my final guidepost, a towering cairn made up of billions of dollars, armies of scientists, and a phalanx of studies, all on a monumental scale never seen before in modern medicine. And it is glorious.
The science agrees with my findings. The science meshes with my discoveries. The science reinforces my alarm that Lyme disease is today the world's leading health menace.
The scourge of Lyme disease is worse than you know. A whole lot worse. It not only anchors every known autoimmune disease and acts as a primary driver of psychosis, it also plunders a litany of bodily functions with the ferocity of Vikings and Huns.
Thank you, scientists. These long Covid studies contain all the remaining evidence necessary to confirm my hypotheses and the existence of the Lyme disease epidemic.
The elusive smoking gun—it has been found. What secrets will it reveal?
