Sit Down Before Reading, A Memoir by Dave Bexfield
When I was in fourth and fifth grade, I always left my window shade up a notch when I went to sleep so I could look out onto our family’s short driveway and monitor the main road beyond. It was essential. Most nights Dad came home late, well past my bedtime, and I was determined not to fall asleep before the lights of his blue Plymouth Belvedere bathed my bedroom with its yellowing headlights.
To help stay awake I had created a game that awarded vehicles that drove past our ranch duplex a certain number of points depending on their rarity. Cars: one point, trucks: three points, large trucks: five points, and motorcycles, the rarest of them all, a bonanza worth a full eight points. Each night I crawled into bed determined to get a new high score.
The Bexfields in Monterey, California in 1979
Dad, then in his mid-30s, was studying to get his PhD in operations research. On days when he wasn’t coaching me or my sister Karen in Little League or soccer, he would work into the night on his troublesome dissertation. He had taken on the challenge of creating a model to measure the performance of a complex computer system, but frustratingly its results did not agree with the real data. Following the advice of his dissertation advisor, Dad built a simulation with 1,000 iterations to search for flaws in his model, yet the results all checked out. No matter how hard he tried, Dad couldn’t get his model to match the real data. Everything double and triple checked for mistakes. Nothing. It was maddening.
His assignment as a young Air Force major at the Naval Postgraduate School was coming to an end, and he was no closer to a solution. He was forced to abandon his thesis and his dream of earning a PhD, freezing my car-counting high score in the 120s.
Years later Dad discovered that he had been right. He had always been right. The software used to generate the real data contained a catastrophic error—he was always destined to fail. He had long assumed he had made an error, an errant miscalculation or flawed line of code that if only he had the time, he no doubt would have been able to ferret it out. It was unfathomable to him that the error was buried in the one tool wholly out of his control. Unfathomable.
Likewise, for decades doctors have relied on the accuracy of Lyme disease testing to make proper diagnoses. To most of these specialists, a negative test faithfully supports the case that there is no active infection, and no reason to further investigate Lyme as the potential cause of illness. Funny, I needed just one finger to count the number of reasons that my supposed accurate negative Lyme result was nothing more than a heaping pile of malarkey: specifically, my swollen left index finger.
Less than a week after adding Bactrim to my own treatment regimen courtesy of my “alternative mainstream” Lyme literate MD, my problematic left index finger, which had been a plump, painful mess for over two months, blissfully began to improve. And my ankles, which had puffed up an annoying degree in recent months (the residual aftermath of the antibiotic pause), responded noticeably as well—all lingering swelling vanished.
Yet two months later, it was becoming clear that Dr. Deadpan’s deliberately conservative approach had stalled like my childhood’s aging Plymouth on a hot summer afternoon, its radiating plastic seats fully charged to scorch the next carpool victim. After seeing minimal other gains on Bactrim, we both agreed that skirting the “medically necessary” recommendation of IV antibiotics was unwinnable. There’s a reason “necessary” is included in its description. Because sometimes it’s goddamn necessary.
But who would dare to treat me with such antibiotics without a positive Lyme disease test? No infectious disease doctor, that’s a given. No MS specialist, cardiologist, or urologist. No primary care physician. What makes this even more curious is that ceftriaxone (Rocephin) is an older antibiotic that is extremely affordable and generally considered quite safe. For other illnesses, a combination of antibiotics is often administered, including options that can be far more aggressive and costly. And instead of a single monthslong course, the length of time for daily infusions to remove a stubborn infection might stretch through full seasons… full seasons of professional sports!
Were Laura and I going to have to relocate to New York, driving thousands of miles in the dead of winter? Find an accessible hotel with the proper configuration to handle my advanced disability—that could get worse before it gets better? Pray that it didn’t snow in such amounts that it would prevent us from getting the necessary daily infusions? And then what would happen if treatment needed to be extended by weeks, months? Given how impractical this all seemed, Laura and I were crestfallen.
Then, a day later, my email dinged.
“Dave, [one of your followers] asked that I reach out and contact you.” It was signed by an M.D. with instructions to call him directly at a local New Mexico phone number, nothing more. We didn’t know the follower he was referring to and we had never heard of this doctor. But that truly didn't matter.
Trust the Science
Since testing was introduced for Lyme disease nearly 30 years ago, patients have been howling about the inaccuracy of that testing, pointing to a raft of unjustified false negatives. But as I first discussed in Chapter 17, there’s another issue with Lyme disease testing, one that is even more sinister, at least according to researchers in the know: false positives. Because the only thing worse than hearing a patient complain about a false negative is to listen to them protest when they get informed that they won’t be treated for Lyme because their “positive test” is in reality a false positive. According to researchers, even among those who designed the test, that’s its true failing. The test is just too darn sensitive. As proof, investigators point to study after study showing that Lyme disease couldn’t possibly be the source of many of these supposed maladies.
One 2019 study boasted that in a study of US Air Force health facilities, investigators unearthed an astounding false positive rate of 53.3 percent! They came to this crack conclusion using ironclad criteria for identifying bogus positive cases, like phony symptoms or nonexistent exposure risk. If a single contraindicating “yes” box gets checked, the patient’s house of cards collapses for a true case of Lyme disease (sinister laughter not included).
If “the individual was asymptomatic or reported only non-specific or atypical symptoms” then clearly BOGUS. If testing was “ordered in December through March”—totally BOGUS. Never mind that symptoms are wildly variable, ticks are indeed active in winter, and the disease can present months or years after exposure. “No documented travel history within 30 days of presentation” to an endemic area earns a BOGUS, too. Live in a state without Ixodes scapularis or Ixodes pacificus ticks, i.e., Alaska, Arizona, Colorado, Hawaii, Idaho, Montana, Nebraska, Nevada, New Mexico, South Dakota and Wyoming? BOGUS. Based on these guidelines, because I live in New Mexico, experienced my relapse a full year after traveling to Lyme, Ct, and got tested in January, I would have been kicked off that Survivor island long ago.
Because I live in New Mexico, experts think it's near impossible to get Lyme disease.
Just when you thought it couldn’t get any dumber—think any spinoff to an Earnest Goes to Camp movie—it does, in dumbfounding fashion. Their recommendations to avoid this supposed scourge of false positives? “To enhance Lyme disease diagnostics on a population level, reducing unnecessary testing is more important than improving laboratory assays.” Rather than improve the accuracy of these tests, the better solution is to just test less. “Clinicians may find it easier to explain why Lyme disease serological tests are unnecessary in the first place, rather than explaining why antibiotics are unnecessary after obtaining a false-positive result.”
This study piggybacks on dozens of other similar studies by researchers who were dismayed with what they concluded had to be gratuitously positive test results for the tickborne illness. Authors of a 2015 Duke research study were near apoplectic when they reviewed nearly 5,000 tests for Lyme disease and concluded that 80% of those tests were unwarranted. “Our findings raise the question of whether positive Lyme disease test results have diagnostic value in low-prevalence regions, such as North Carolina. With a high background noise of false-positive test results, coupled with a low signal of true-positive cases, it may be impossible to trust a positive result.”
So, there you have it. Unless you are in a hotspot for blacklegged ticks—say, foraging for giant puffballs, chicken-of-the-woods and other wild mushrooms in the hinterlands of upstate New York—and you get a bullseye rash and experience symptoms within 30 days, a negative Lyme test is negative… and a positive Lyme test is also negative. So say the experts. Trust the science.
It’s no surprise that people who believe that they are suffering from Lyme disease don’t trust the science. At all. And they have been noisy about it, furiously pointing to example after example of false negatives leading to misdiagnoses—or no diagnosis at all—before targeted antibiotics relieve years of misery as proof of the test’s failings. And if they can’t get treatment, they spread their frustration on social media, venting on Twitter and in Facebook groups to find sympathetic shoulders. Like the story from an Australian who tested positive for Lyme, only to be told that it’s not that common where he lives, the test had to be a false positive, and he must have multiple sclerosis instead. It’s a frequent tale of frustration that has spread around the globe. Jessica’s story, though, takes it to another level.
Needles in a Haystack
A native New Yorker, Jessica went to the ER with wonky neurological symptoms, but every doctor who examined her overlooked “the 3x3-inch perfect red circle rash on my arm,” a classic bullseye rash characteristic of Lyme disease. The befuddlement spread to nearly a dozen neurologists including those at Mayo and Cleveland clinics. Eventually it was decided: she had MS. The year was 2003, one year before my misdiagnosis. It took a dozen years of failed treatments for MS before she had her aha moment to ask her doctors to investigate for the tickborne infection. “Not Lyme,” her primary care physician said, pointing to just two reactive bands on her blood test, far short of the five needed. Jessica then dug out old photos of her rash she had taken years ago and next saw an expert in infectious disease. “Not Lyme,” he said, “it’s just cellulitis!”
Frustrated and furious, she paid thousands of dollars out of pocket for Lyme specialists, getting sporadic doses of antibiotics—temporarily improving her health—only to backslide. Now she is struggling to walk and is at a loss regarding what to do next. Worse, she believes that she unknowingly passed on her Lyme when she gave birth to her two children. Her daughter began experiencing symptoms at three, her son just recently at fifteen. Her only recourse to get them help is to keep asking for Lyme disease tests, which she has been doing annually for years in the hopes that one will eventually notch the five bands necessary to be eligible for treatment. “An infectious disease doc told me there’s no such thing as chronic Lyme and said he won’t treat ‘desperate’ people! My husband turned every which color!”
But for doctors and medical researchers, this “proof” from Jessica is merely an odd needle in a haystack. A coincidence, perhaps, but not evidence. Even hundreds of needles, or (gasp!) thousands, end up being inconsequential in a haystack the size of Iowa. Needles as proof are nowhere near enough. At best they could stock a busy acupuncturist for a month or two. And without clear objective scientific evidence to support their claims, bLymie protestations that it’s Lyme disease, not some other autoimmune malady, will forever elicit eyerolls and stifled guffaws from the mainstreamers.
Stacks on stacks on stacks
But that’s all there has ever been in the medical literature concerning undetected Lyme disease that is suddenly and shockingly unearthed—random odd case study after random odd case study—easily dismissed needles. No one is going to be alarmed and freaked out about the minuscule risk of getting poked on a hayride, especially if all you purportedly need to get fixed up after an errant jab is a quick course of antibiotics. Even if I were to bound out of my wheelchair, run the Boston Marathon in under three hours, and get highlighted in a prestigious medical journal, at this point I’d technically just be a needle, too. If this problem is as big as outspoken advocates say it is, it can’t be that hidden. Can it? But where to begin digging?
Running on the assumption that Lyme disease is indeed widespread, logically it would make sense to start looking where MS doctors are most likely to run into it, at their clinics. But neurologists reportedly rarely find cases of Lyme disease in their practices because it’s assumed that infectious disease doctors in high endemic areas swiftly identify cases transmitted by ticks through the Western Blot and ELISA testing. Because MS is a disease diagnosed by elimination, by the time a patient reaches these neuro offices, Lyme has usually already been rejected as a potential culprit.
Again, logic would suggest that a closer examination of studies of MS misdiagnoses would illuminate the telltale shadows of the clandestine disease. But no, studies that attempt to flush out misdiagnosed patients rarely finger Lyme disease as the true health offender. If it even gets mentioned, it falls to the bottom of many lists, mingling with other unlikely diseases that while they “may have some symptoms that are similar to those of MS, they also have enough characteristics that are different from MS that misdiagnosing one for the other should happen only rarely.”
Just one problem. The science doesn’t back that up that rarity. Over and over and over again, case studies trying to differentiate the two diseases are published and physicians keep sounding the alarm, even when a confirmed positive case of Lyme is discovered. Is it really MS? Or is it just Lyme? (Or is it, albeit far less likely, both?) “[Lyme disease] can present with identical clinical and neuroradiological manifestations,” reports a Harvard case study documenting a misdiagnosis of Lyme as MS. “[The criterion in diagnosing MS] 'to rule out any other possible cause', should be seriously weighed in every case with unusual features. It would be prudent that every neurologist question the diagnostic adequacy and apply his diagnostic instincts when examining a patient with a previous diagnosis of MS.”
But too often Lyme disease can’t be proven even when suspicions are high. The “majority of [optic neuritis] cases in the literature showed compelling clinical signs of Lyme borreliosis, however, did not meet the confirmatory diagnosis criteria according to Centers for Disease Control and Prevention (CDC),” found a 2022 study. “The diagnosis of Lyme borreliosis remains challenging. Serology tests results are frequently misinterpreted leading to misdiagnosis and can lead to serious morbidity. … The public health burden of Lyme borreliosis continues to grow substantially each year. It is crucial for clinicians working in endemic regions to be aware and recognize [the] signs and symptoms of Lyme borreliosis.”
Despite this knowledge, even the most aware neurologists are destined to struggle with the dilemma of accurately separating the two diseases. Worse, if one doesn’t practice in a tick hotspot, odds of them detecting—much less suspecting—Lyme disease are impossibly long. To unearth long-interred evidence of misdiagnosed Lyme disease sufferers parading around in MS costumes, it was going to require cunning, ingenuity of the highest order, intense analysis of the tiniest clues, poring over reams of research to uncover that one overlooked nugget that breaks the case, to finally reach that “aha” moment that has eluded researchers for decades, to make the medical discovery of a lifeti….
Oh, oh wait. Never mind. There it is. Hidden as well as one might hide an Easter egg from a fussy two-year-old. Or Waldo if he were circled by a black Sharpie. And had an arrow pointing to his red-striped shirt. And someone had written beneath the arrow “THERE’S WALDO, DUH!” in all caps and underlined.
Overlooked for decades. Easily seen, but inexplicably invisible. Undetectable by countless leading scientists, yet obvious to any intrepid fifth grader possessed with powers of observation and unsaddled with decades of biases.
Unfathomable.