Sit Down Before Reading: A Memoir by Dave Bexfield
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It started as a trickle. Then they arrived with regularity. Before long, the horror turned into an overwhelming deluge. Stories of likely misdiagnoses have since been broadsiding me with the frequency of unexpected new hit releases of Taylor Swift songs.
Helen, diagnosed with MS in 2020, remembers her time living in Scotland and removing “sheep ticks from myself a few times after playing in the long grass and bracken (even though mum told me to wait for her to remove them).” Her mother, Barbara, now 80, had been diagnosed with MS in 1981 when Helen was just 8. “Who knows what has been causing our symptoms over the years?”
Sara had been bitten by a tick traveling through Europe 30 years ago at the age of 18. At the time she ignored the circular rash. She was eventually diagnosed with MS, failed a series of disease modifying drugs, and today is “surviving each day in lots of pain.” Curiously, though, she “always felt better on antibiotics” when they were needed for sinus infections.
Jenny, a New Yorker with a trio of active passions—cycling, skiing, hiking—found those active passions swiftly felled by a 2002 MS diagnosis. Stroke-like symptoms, lightning flashes in her peripheral vision, odd heart issues all puzzled her menagerie of doctors: EMTs, gastroenterologists, a hematologist, a podiatrist, and even multiple cardiologists. “I have pulled countless deer ticks off myself for the past couple of decades. Once I developed a big red rash, fever, headache, night sweats and terrible fatigue and was treated for Lyme with a week of antibiotics.” She also tested positive for babesia. MS drugs always failed her.
Then there was Laura, lamenting the recent passing of a good friend, who had lived with a questionable MS diagnosis in Old Lyme, Connecticut. Because of her unstable gait, her friend had tripped and fallen in her backyard, alone, tragically falling into “a pit fire she had set for garden debris at the beginning of the growing season.” Unable to stand or self-rescue, she burned to death in a tangle of weeds and nature’s detritus.
Only rarely is Lyme disease ever discovered in the swirling winds of “probable” multiple sclerosis. Months earlier, Gary, a longtime member, saved a college friend’s sister from a near-certain MS diagnosis. “As your story was very much top of mind when we reconnected, I inquired further to see if her sister had had any recent tick exposure,” he wrote. “I learned that she had, so I advised my friend to advise her sister that it could possibly be Lyme. The test just came back—not only does she have Lyme, but tick fever and an active Bartonella infection. And has markers for seven other tick-related viruses.”
A letter from Gary, a longtime ActiveMSers member.
But confirmed misdiagnosis cases of my members? Scarcer than the number of people who have walked on the moon. Bethany, a member of ActiveMSers since 2008 when she was diagnosed with MS in Ohio by a well-regarded MS specialist, received her correct Lyme diagnosis in 2015. “I've been so grateful for my health, and I call it my miracle to not have MS hanging over my head. Keep fighting for the truth to be put out there for people to know to keep searching for what's really going on.”
Since the spring of 2022, I have been following the cairns placed by fellow Lyme disease advocates and sufferers, cairns that have led me to a host of revelations. In the MS space, I have a decent grasp of what’s really going on. With the exception of a spirochete wriggling under a high-powered microscope, the evidence all points in one direction—there are a boatload of misdiagnoses when it comes to cases of multiple sclerosis. But there’s a problem that I have been struggling with.
While Borrelia burgdorferi is believed to be chiefly responsible for cases of the tickborne illness in North America—along with Borrelia garinii and Borrelia afzelii in Eurasia—there are 52 known species of Borrelia. Until recently, researchers had been focused on just the three originally identified species, but 13 genospecies thought to cause Lyme disease in humans have been identified, a number that is likely to increase. And they all present differently, causing a tremendously divergent cascade of symptoms. That means, gulp, that the above examples almost certainly are not representative of the typical Lyme disease misdiagnosis—they are just among the most obvious, blatant ones. After all, most victims don’t remember being bitten by a tick, much less getting a rash, and many do not live in endemic areas for the disease.
As Lyme disease is reported to mimic nearly 200 other health conditions, fooling doctors time and again, I kept bumping into evidence that suggests I may have been misguided about my theory that Lyme disease testing fails to detect Lyme encephalomyelitis, the flavor of Lyme that most resembles MS. What if it fails to detect myriad variations of the disease, and those cases mistaken to be multiple sclerosis are merely a smattering when compared to the true number of misdiagnoses worldwide? What if Lyme disease really is as widespread and calamitous as sky-is-falling alarmists have warned since the discovery of the disease?
Nah, Lyme’s not much of a thing even in MS, said a collection of 22 acclaimed MS researchers in a recently published August 2023 Lancet journal article specifically written to help physicians ferret out MS mimics. You can usually identify imposters if you just follow these new guidelines, they said. “Central nervous system inflammatory disorders that present with syndromes overlapping with multiple sclerosis can increasingly be distinguished from multiple sclerosis with the aid of specific clinical, MRI, and laboratory findings,” they said, confidence brimming through each declarative sentence. Of the dozens of conditions often mistaken for multiple sclerosis in the study, Lyme disease squeaked in a few cameos, but other mimics dominated the conversation. Under certain conditions, it might be Lyme, but the recommendation is to look elsewhere. It might very well be rheumatoid arthritis. Or lupus. Or celiac disease. Or vasculitis. Or Sjögren's syndrome. Or so, so many other autoimmune conditions. And then they pointed to purported tells in the patient’s MRI results or other revealing laboratory markers—the same tells I’ve systematically dismantled in previous pages.
By the time this memoir fully concludes, people will look back at these findings, shake their heads, and say that even these focused experts missed the boat. But I would argue that it is worse than that. They caught the boat, all right. The RMS Titanic. That’s because I’ve been developing a detailed blueprint for identifying misdiagnoses in autoimmune diseases. And something isn’t adding up.
Having just rewatched the original Star Wars trilogy with my nieces and nephew, it feels appropriate to lean into a popular meme from the Sci-Fi series. Cue Mr. Han Solo and company….
I have a bad feeling about this.
A Pair of Patricias
Patricia Hornick and Patricia Miles didn’t know each other, were separated in age by decades, and lived wildly different lives. To my knowledge, they only met once, on the morning of January 23, 1993, at my wedding. Aside from their given first names, they couldn’t possibly have known then how much they had—and would have—in common, both playing integral parts in my life. Ms. Hornick, a dear college friend and native German speaker, was chiefly responsible for helping me pass the foreign language classes required for me to graduate from George Mason University. Ms. Miles, meanwhile, gave birth to my wife. Both would tragically pass away too young—Ms. Hornick from a car accident, Ms. Miles from breast cancer. Both grew up in the small town of Front Royal, Virginia, in the foothills of the Shenandoah Mountains. And both were afflicted with the chronic disease rheumatoid arthritis, and for years were the only two people I knew with the debilitating condition.
My friend Trish (left, in white dress) and Laura's mom, Pat (right, in red hat)
Rheumatoid arthritis, or RA, is the most common autoimmune disease in the world according to the World Health Organization, affecting 18 million people. It’s two-to-three times more common in women than men and tends to strike later in life. Causing joint pain and inflammation, RA can attack a single joint or multiple joints—most often the smaller ones in the hands, wrists, and feet—and “can lead to severe damage to the joint and surrounding tissue,” says the WHO. “It can also affect the heart, lung and nervous systems.” Additionally, “people with RA often feel fatigue and general malaise (e.g., fever, poor sleep quality, loss of appetite) and may experience depressive symptoms.” The cause of the disease is unknown, although it is far more common in industrialized, wealthier countries. And like countless other autoimmune diseases, “the diagnosis of RA is established considering clinical findings and complementary examinations. No isolated test, laboratory, imaging or histopathological, confirms the diagnosis alone.”
Reread the above paragraph and substitute Lyme arthritis, a subset of Lyme, for rheumatoid arthritis. The diseases appear to be interchangeable, the only noticeable difference being that one is an autoimmune disease with an unknown cause while the other is a bacterial infection spread by deer ticks. That discovery was made in 1981 in Lyme, Connecticut, after an unexplained five-year outbreak of… rheumatoid arthritis-like symptoms in residents. Not to worry, though, the two are totally separate diseases say experts, who insist, “no, it is not possible to get RA from a tick-borne illness,” explaining that Lyme usually affects individual joints, not pairs, and that “knees are most commonly affected in Lyme disease, while the joints of the hands—a common site of RA involvement—are not.”
Um. I stared at my left hand. It had been in such pain lately that just holding a bowl of cereal without wincing was an impossibility. And then earlier this year it had been a finger suffering a similar fate. And before that it was ankles, toes, and elbows. I am quite sure I am not an anomaly, and as far back as 1979, researcher Allen Steere published a paper—before the discovery of Borrelia burgdorferi—discussing Lyme arthritis with patients who “developed chronic involvement of one or both knees.” Even that noted/notorious Lyme researcher observed the disease attacking a pair of knees. Yet he was still convinced back then that the two diseases were totally separate. And for 40 years, he’s been trying to convince the “Lyme loonies” that any association between the tickborne illness and autoimmune disease is fantasy.
Lyme disease comes back. It always comes back.
To wit, in 2017 he and a team of researchers published a study that concluded that even though other arthritic autoimmune conditions—RA, psoriatic arthritis, and spondyloarthritis—frequently follow a Lyme disease diagnosis, it “may simply be a coincidence.” Or Lyme was just a “trigger” that woke up an already existing, dormant, likely inherited disease. Or, sucks for you, the antibiotics you took for Lyme changed your gut’s microbiome and, voilà, you just gave yourself an autoimmune disease. So deal with it.
Some of our patients were reluctant to accept the non-Lyme disease diagnosis and pursued further antibiotic treatment elsewhere. One patient who developed RF- and ACPA-positive RA initially had complete remission of RA on methotrexate, but stopped this medication and sought further treatment for Lyme disease elsewhere with prolonged courses of multiple antibiotics. Three years later, he returned in a wheelchair with radiographic erosions, and deformities and contractures in multiple joints. Given a choice between Lyme arthritis (LA) and a chronic illness that may require lifelong immunosuppressive therapy, it is not surprising that patients would find LA a more attractive diagnosis.
Riiight. Instead of wanting an accurate diagnosis, we patients are always looking out for a more desirable diagnosis, like that boyfriend looking over his shoulder checking out another girl. Other than an outright “I told you so,” the only thing seemingly missing from the journal article was Simpsons bully Nelson Muntz’s mocking “HA-HA.” But are these researchers right? The longer Lyme is left untreated, the less effective antibiotics are. Methotrexate is known to put Lyme into remission temporarily, but as you’ve read in these pages, Lyme disease comes back. It always comes back.
So, then, what to make of the countless examples of Lyme being mistaken for RA with devastating consequences? Not long ago, the Today show profiled Meghan Bradshaw, a woman who was misdiagnosed at the age of 23 after doctors considered Crohn’s, colitis, lupus, and MS before settling on RA as well as Ehlers-Danlos syndrome. The Charlotte, North Carolina, native underwent 16 surgeries before the age of 30—total joint replacements in both shoulders, both hips, both knees, and both ankles (as well as reconstructive work in her hands)—before discovering that she had had Lyme disease the whole time. Dr. Glenn Gaston, a hand specialist, performed surgery to repair the young woman’s hands, noting that “the chance of a patient with Lyme getting to the stage Meghan is in is unbelievably rare.”
Seeing a pair of wolverines mating in the wild would be unbelievably rare. Filling out a correct March Madness bracket would be unbelievably rare. Hearing that my sister Karen took time out of her frenetic schedule to read—or listen to—a single chapter of this memoir would be unbelievably rare. But a case of misdiagnosis like Meghan’s? I mean, couldn’t she theoretically have both RA and Lyme?
Here’s where things start to get decidedly uncomfortable—akin to realizing you have a massive wedgie as you stroll to the podium to give the most important speech of your lifetime. And you have lost your notes. And brain fog has caused you to forget the words and even the topic of your talk.
Making Sense
The first rule of SHARDs: solid science must make sense. So, let’s begin by trying to make sense of the evolution and spread of Lyme disease as compared to RA. While it was first discovered in the mid-1970s in a quaint Connecticut town, scientific evidence of the tickborne disease shows that it predates humanity. Even Ötzi, the 5,300-year-old glacier mummy discovered in Europe, had Lyme. It was a problem, even way back when. In contrast, the history of rheumatoid arthritis is far less nailed down and has stirred controversy. Authors of a 2012 study attempted to put it all into perspective as best they could.
One school of thought is that RA is a disease of the modern era and that its pathogenesis is a result of an environmental or genetic stimulus that did not exist in ancient times. A second theory posits that RA existed amongst our ancient ancestors but had never been definitively characterized. Most recently, a hybrid theory has arisen which holds that RA originally developed in indigenous populations in North America and spread to European populations through the travel of persons and/or goods.
RA was first described in modern medicine in 1800, as young French doctor Augustin Jacob Landré-Beauvais “examined and treated a handful of patients with severe joint pain that could not be explained by other known maladies at the time.” Although he incorrectly labelled it as an offshoot of gout—the unusual disease was far more common in women and the poor, a population that infrequently suffered from “the disease of kings”—his discovery laid the groundwork for the future research that was eventually able to separate the diagnoses based on the presence of uric acid in the case of gout. But RA may have been discovered much earlier, by a dude kinda famous in medical circles for his oath: Hippocrates.
In the arthritis which generally shows itself about the age of thirty-five there is frequently no great interval between the affection of the hands and feet; both these becoming similar in nature, slender, with little flesh…. For the most part their arthritis passeth from the feet to the hands, next the elbows and knees, after these the hip joint. It is incredible how fast the mischief spreads.
From left: A 12th century Greek translation of the Hippocratic Oath (Wikipedia); Hippocrates, the Father of Medicine (Wikipedia); a 16th century Dutch painting of hands with rheumatoid arthritis (public domain).
Mischief. That’s one way to refer to a debilitating condition. Today, after observing copious mischief, researchers have generally accepted the conclusion that “RA is not a disease of recent origin, and was both present and problematic hundreds, possibly thousands of years ago” and that it “occurs as a response to an environmental stimulus or stimuli experienced by genetically susceptible individuals.” Paintings dating back to the 16th century and earlier even feature a hallmark sign of the joint disease, deformed hands. RA has been making the rounds.
Now compare that to the evolution and dissemination of Lyme disease. In 2017 Yale researchers found that it has been circulating in North America for at least the last 60,000 years and that it had originated in Europe, making the disease even older there. It seems only fair that Europeans made the first discoveries. German physician Alfred Buchwald originally noticed the disease’s odd rashes in 1883, and in 1909 Swedish dermatologist Arvid Afzelius identified the now iconic bullseye rash. But it was another Swedish dermatologist, Sven Hellerström, who put it all together in 1930: tick, rash, illness. His breakthrough and those of many others (re: Ruth Ichelson), inevitably, were ignored until Willy Burgdorfer found his spirochete in Lyme, Connecticut, more than 40 years later. To put this into perspective, Lyme disease has been off leash on planet Earth from the time of man walking upright to John Travolta and the disco era. The consequence?
In 2022, a large scientific meta analysis calculated the spread of Lyme by looking at the prevalence of Borrelia antibodies in people throughout the world, a positive value meaning the person currently has or has had Lyme in the past decade or two, as antibodies may persist for 10-20 years. The researchers shockingly discovered that 14.5% of the global population were Borrelia positive, with the highest levels in Central Europe (21%), Eastern Asia, and Western Europe. (Notably, the lowest levels were discovered in the Caribbean at 2%, Southeast Asia at 3%, and Oceania at 5.5%.) Even more troubling: past research has shown that these antibody tests routinely miss documented infections, meaning these rates are certainly higher.
On a planet with a population of 8.1 billion people, that calculates to at least 1.2 billion currently alive who have been infected with Lyme disease since the release of Finding Nemo. And that, dear readers, brings us to an unpleasant, uneasy, and unavoidable question mark of the ages.
Where are they?
Some surely were treated and cured, as 30,000 cases are reported annually to the CDC in the U.S.—although the agency believes upward of about 450,000 annually go unreported—and up to three times that many in Europe. Some, one would hope, have fended off the infection solely with a robust immune system. And some certainly are living with the disease in its (mostly) dormant state, virtually unaffected spare sporadic blemishes and migraines that can be explained away as allergies or hormones. But the rest? Where are they?
If we jump back 50 years, when Lyme disease was just a nymph-sized glint in Dr. Burgdorfer’s eye, the question mark grows like a jumbo Jeff Koons sculpture. Where were the hundreds of millions of sufferers then? They certainly sought out medical care for their achy joints, stubborn rashes, unrelenting fatigue, wonky eyesight problems, unexplained pain, debilitating weakness, frightening psychosis, and more. None of this was recognized as Lyme as it had yet to be discovered. So, where are they?
Now let’s travel back in time to the early and mid-1900s, the golden period of discovery in the field of autoimmune disease, the concept of which—the body attacking itself—was finally gaining acceptance in the medical community. Because what else could it be? Undiagnosed Lyme disease patients no doubt still numbered in the tens of millions at the minimum, many desperately seeking solace and aid from their doctors for a kaleidoscope of symptoms. How did they get treatment? What were they diagnosed with? Their issues would have swamped medical facilities with reports of a mysterious illness. But no, at the time there was chiefly concern about the newfound confirmed scourge of autoimmune diseases. Rheumatoid arthritis. Psoriasis. Lupus. The list is extensive. Yet undetected cases of Lyme disease would have easily outnumbered all these conditions.
Look up. Now that question mark rises like Godzilla out of the sea, eliciting the same level of terror. All those missing prospective Lyme disease patients, where are they? Their suffering would have flooded medical journals, but the trumpeting of researchers touting novel biomarkers to detect new classes of disease all but smothered calls from any interested search parties. Where are they? They absolutely must be there; there are far too many of them. This population would have been unmissable—yet they are as visible as the wayward ghosts in The Sixth Sense. Where are they?
WHERE THE HELL ARE THEY?
Solid science is supposed to make sense. This doesn’t make sense. Not one bit of it. The math doesn’t add up. All these sufferers infected with Borrelia burgdorferi couldn’t have just magically vanished like 2% of the population in the fictional television series The Leftovers.
I gasped. Dear God. No—no, no, no. I swear I felt the blood drain from my face as I began to compute what this meant. There’s only one place they could be.
Researchers have been playing Connect-the-Dots for the better part of a century, repeatedly drawing lines between revealing clues. They just never stopped to take a step back to contemplate the resulting picture. And once you see it, you’ll never be able to unsee it.
Time to turn it up. To 11.