Sit Down Before Reading: A Memoir by Dave Bexfield
Laura and I thought we had properly prepared ourselves for our doctor’s appointment—rehearsing our elevator plea for treatment on the drive over and discussing the nuances of being open to “alternative” medical theories—but we weren’t truly prepared. Not for this. [Note: details of this meeting have been changed to protect the doctor’s privacy.]
“I imagine you are wondering why I have tinfoil on the windows,” said Dr. Alternative, nodding in the direction of his reflective blinds as he tapped away on his cellphone. Since we had yet to introduce ourselves, I hadn’t had the chance to ponder why a physician would eschew the convenience of regular blinds. Maybe to deflect the sun’s rays to save on energy costs, which was going to be my answer before the doctor revealed his reasoning.
“That way if the government tries to eavesdrop on me to search for evidence to pull my medical license,” Dr. Alternative continued, “it’ll deflect their probing devices and they’ll hit smack-dab into a dead end.”
Laura looked at me, and I looked at her, and instead of bringing up the whole “how would that work” thing and the fact that the government could easily track any one of us down, shoot us in the neck with a blow dart, interrogate us while in a drugged stupor, and then leave us hogtied and unclothed in one of the abandoned 1920s industrial buildings at the Albuquerque Rail Yards where The Avengers was filmed, we said, in near unison, “Smart.”
Albuquerque Rail Yards
Before our appointment, I had done some general recon about this doctor and knew that he marched to a different spatula. I discovered that Dr. Alternative is unabashedly opinionated and more than a little out there. I wondered aloud to Laura if we should just cancel and go a different, more traditional route.
“You mean the wholly unsuccessful route you’ve been trying to take for the past year?” Laura retorted. She had a brilliant, inarguable point. “Best case: he agrees to treat you and you finally get the antibiotics you need. Worst case? You’ve got great fodder for your book.”
As our conversation with Dr. Alternative pinged around conspiracy theories, supplements that cure cancer, and anti-vaxxing fringes, it eventually settled on my case, and he became quite interested. Not just in the convoluted history of my misdiagnosis, the signs that were missed for years, and our ongoing struggles to find help, but the simple fact that I was getting screwed. By the man. We absolutely had something in common.
“I want to help you,” said Dr. Alternative. He was genuinely concerned. He listened intently to my story. As hesitant as I was to go through with the appointment, I found myself thinking that he might be just the resource we needed to break through this treatment impasse. We need a contrarian, a rebel, someone willing to take a risk on us. “I’ll start doing a little research and get back to you.”
The Hope Bus was back on schedule, fueled up and ready for its next destination. Time to cross fingers, recheck the map, confirm funds for any future tolls, and get on the road. And stock up on tinfoil.
Disturbing Trends
In the early 1990s, Lyme disease researchers started noticing a disturbing trend. Cases appeared to be rising, and no one was sure why. As years turned into decades, scientists who were tracking tick populations using blanket surveys—dragging lightweight white blankets to collect samples of the small disease-vector-carrying arachnids—confirmed the soaring populations worldwide. In the US alone, annual cases of diseases caused by ticks “has roughly doubled since 2004, with most of the increase dominated by Lyme disease cases,” reported a fascinating 2022 article in the science publication Knowable Magazine. Notably, “Lyme disease, which is predominantly caused by the bacterium Borrelia burgdorferi, has increased threefold in the US since the late 1990s.”
The reasons appear to be myriad. Climate change is making areas more habitable for ticks, as winters become warmer, even at higher altitudes. Deforestation also likely is playing a role, and in ways not anticipated. As building intruded into forests, these forests became fragmented, and “the consequence was a dramatic increase in the density of infected nymphs, and therefore in Lyme disease risk, with decreasing forest patch size.” Smaller forests reduce the habitat for predators of rodents, common tick vectors. The end result?
“As mouse numbers rise, the odds that a hungry tick will feed on a disease-harboring rodent go up — in turn, increasing the odds that a person gardening in their yard or going for a walk in the forest will get infected with Borrelia burgdorferi from a tick bite,” warned the Knowable Magazine piece. Indeed, a study looking at ticks on Staten Island, NY—not known as being in BFE except among those living in Manhattan—found that an incredible 40 percent of ticks harvested in backyards carried the Lyme disease bacteria.
Amid the alarming spread of ticks and Lyme disease, researchers did notice one positive wrinkle, which they specifically identified: cases of Lyme encephalomyelitis—the type of Lyme that most closely resembles multiple sclerosis, as differentiating between the two “can be quite difficult”—had surprisingly dropped, making up an even tinier fraction of patients with Lyme in North America. Finally, some positive news to celebrate on the tickborne illness front, which no doubt led to some popping of the bubbly to celebrate.
Meanwhile, simultaneously in a parallel medical universe, in the early 1990s multiple sclerosis researchers started noticing a disturbing trend. Cases appeared to be rising, and no one was sure why. As years turned to decades, scientists tracking MS populations—epidemiologists upturning demographic evidence of the disease’s spread—confirmed the soaring populations worldwide. “Age-standardized prevalence of multiple sclerosis changed most in the east Asia region (44.8% increase) and Canada (81.9% increase) between 1990 and 2016. The highest age-standardized multiple sclerosis prevalence estimates per 100,000 population were in high-income North America, western Europe, and Australasia,” reported a fascinating 2019 study in The Lancet Neurology. Notably, “prevalence has increased substantially in many regions since 1990.”
“Trend of MS prevalence in Italy over the last 5 decades. Bars report MS prevalence values described in the epidemiological studies conducted in Italy mainland over the last 50 years. The increase in MS prevalence describes a semi-parabolic curve, without plateau or slowing-down periods during the last 5 decades.”
As researchers parsed the data, they patted each other on their backs as they continued to reaffirm a long-believed ominous pattern. Generally, the farther away from the equator, the higher the prevalence of the autoimmune disease, a conundrum that has puzzled researchers for a generation. Check that… multiple generations, as this 1964 published paper Geographic and climate aspects of multiple sclerosis (Leonard T. Kurland, M.D., et al.) makes clear.
The geographic pattern showing a more frequent distribution of multiple sclerosis further away from the equator has been accepted by most investigators. It is still uncertain, however, which of the many possible factors related to latitude may be relevant to the etiology of multiple sclerosis. Various meteorological and climatological influences such as "colder" winter temperatures or diminished sunshine appear to correlate with multiple sclerosis distribution. Whether these act directly on the patient or indirectly through plants, animals, or vectors in his environment is a purely speculative matter at this time.
Study after study after study has looked at the latitude and MS connection ever since, millions upon millions of dollars poured into the topic. Yet frustratingly, the clarity that researchers have longed for has remained elusive. They eventually cooled on the “colder” part, and few wanted to speculate on the speculative stuff (vectors like ticks, eew), but they kept picking away at Earth’s horizontal gradients to get validation on the influence of sunshine and vitamin D. It simply had to be there if they looked hard enough. Right? And yet….
A 2014 study examining MS prevalence in Norway, among the highest in the world, found “the Northern and Southern regions were not significantly different” and stated that “we found no evidence of a latitude gradient.” Researchers for an exhaustive 2016 French study were similarly flummoxed, finding a pattern among farmers that then mysteriously dissipated among more wealthy (and mobile) residents. Trying to make any connection, desperate scientists stretched the limits of plausibility, with research like Multiple sclerosis, latitude and dietary fat: Is pork the missing link? One paper pushed back so hard on the latitude hypothesis that they put their findings right in the title, leaving little ambiguity: Multiple sclerosis prevalence among Sardinians: further evidence against the latitude gradient theory.
Then, in 2019, the US Multiple Sclerosis Prevalence Workgroup—a consortium of 15 acclaimed MS researchers from respected institutions countrywide—released a massive study tabulating US cases using health claims data, among the most exhaustive studies of this type and the most referenced. This was to be the new benchmark.
[Conclusion The estimated US national MS prevalence for 2010 is the highest reported to date and provides evidence that the north-south gradient persists. Our rigorous algorithm-based approach to estimating prevalence is efficient and has the potential to be used for other chronic neurologic conditions.]
Finally, confirmation! Yes, there has been a steady rise of diagnosed cases of MS over the past 5 decades. And yes, latitude appears to play an outsized role in these diagnoses, as more cases of MS dotted the far Northeast and upper Midwest quadrants. But still, evidence for an unmistakable sunshine/vitamin D line required a bit too much finagling and data stretching to be conclusive. As much as these MS researchers would have liked to start chilling the champagne and busting out ski goggles and protective plastic sheeting in preparation for a celebration (don’t forget to cover the microscopes!), there was no eureka moment. But maybe there should have been….
An Alternate Theory
Overlay the maps of Lyme disease and multiple sclerosis, and a startling alternative hypothesis arises. Could undiagnosed cases of Lyme disease mistaken for multiple sclerosis be responsible for the uptick—pun intended—in MS cases, particularly in two of the four regions studied? Lyme is found in those areas, after all. Nah, say researchers like Dr. Brandon Beaber, who practices neurology in Southern California and runs a popular YouTube channel. He points out in one of his videos that Lyme disease is overwhelmingly in the Northeast and in the Rust Belt. But MS? Sure, “there is a slight predominance [of cases] in the Northeast and Midwest … and we believe this has something to do with latitude, with less sun exposure linked to a greater risk of multiple sclerosis.”
Besides, scientists point out, repeated serology studies rarely show people with multiple sclerosis harboring antibodies to Borrelia burgdorferi, even among patients who live in endemic areas for the tickborne disease. The idea that lurking, undetected Lyme disease is behind the anomalies in their groundbreaking prevalence study of MS—impossible, sputter researchers. Case open, case closed.
Not. So. Fast. Curiously, instead of dissecting the United States strictly along lines of latitude to look at the spread of MS, the US team of researchers decided to divide the country into four quadrants for analysis purposes: the far, far Northeast, the upper Midwest, the South, and the West. In the West, they determined 272.7 people live with MS per 100,000 population, and in the South 272.6, a near identical ratio. But in the upper Midwest, cases rise dramatically to 353.1 per 100,000 and then spike to 377.4 in the far Northeast.
The prevalence of MS in the United States
There is indeed an “MS bias” to the north, but it is in no way universal and countrywide along a latitude line. And the bias is more than “slight.” The far Northeast corner—Pennsylvania and New Jersey being the western and southernmost outliers—harbored nearly 30% more diagnosed cases of multiple sclerosis than either the West or South regions, while the Midwest region approached a 25% higher prevalence. Both regions are noted US hotspots for Lyme disease, where the vast majority of cases originate.
Let’s return to Italy, heavily burdened by MS, and their latest epidemiological MS findings. In a 2021 study that scrutinized 58 papers on prevalence of the disease, researchers concluded that the "latitude risk gradient does not fit to the Italian map of MS.” Not only that, but that “the genetic heterogeneity of the Italian ethnicities, that likely forms the basis of MS predisposition, does not account for the dramatic increase of MS incidence and prevalence observed in Italy over the last half century that, rather, seems better explained by the effect of environmental factors.”
Environmental factors? You don’t say. With a significant percentage of people worldwide now testing positive for antibodies to Borrelia burgdorferi—as high as 20% say studies—it defies logic that people living with MS have rates far lower, in some cases close to 0%. Instead of drilling into this head scratcher of a finding, researchers latched harder onto long-believed theories. The discrepancy must be due to the housebound gimpiness of MSers, as “the frequency of recalled tick bites and the frequency of potential tick exposure (frequenting grassland, edges of woods etc.) was significantly higher in control patients compared with multiple sclerosis patients.” Never mind that these antibodies should theoretically still show up years after a tick bite. That would then mean that even pre diagnosis, these MSers must have rarely ventured into the sunlight and the outdoors, slithering out of basements at nightfall to listen to Coast to Coast AM on the upstairs sleeper sofa. (Somewhere, a researcher at this very moment is having his or her aha moment, using this nugget as proof to back up the MS/lack of sunlight/vitamin D hypothesis. Sigh.)
Something isn’t adding up. Just mistaking cases of Lyme disease for MS is the reason for the “latitude gradient” in the United States and around the world? It couldn’t be that simple, could it? Could it?
Don't Wanna Feel This Way No More
In 2001, I voluntarily traveled to Detroit, Michigan. In January. No one from New Mexico volunteers to go to Detroit in January. But that’s what you do when you are the editor-in-chief of a Nissan car magazine and a new concept version of the car company’s iconic and legendary Z car is getting released. You brave the cold, the ice, the snow, and the gray to get the story. Sure, I got the story, but I also got something wholly unanticipated: invaluable life advice.
You can never predict when such advice happens, and you certainly wouldn’t expect to get it in Detroit at the North American International Auto Show from an up-and-coming car designer just a few years older than yourself. I was interviewing Alfonso Albaisa, who in his mid-30s had created the concept that would resurrect the Z nameplate as the 350Z. Today he is a senior vice president at Nissan Motor Corporation and the design chief for all Nissan and Infiniti products. But on that cold, snowy, gray Detroit day, he was just an excited car guy talking to another equally excited guy who happened at the time to know diddly about cars. After the curtain was lifted for the big reveal and the crowds gradually faded, virtually no one stuck around to talk to the young designer. But I did.
I honestly remember little from our conversation. I tried not to say much to betray my automotive ignorance and instead listened. And observed. I recall his wristwatch alone was cooler than anything I had ever owned, same with his suit. Somehow our discussion had turned to sources of inspiration and music. I was taken aback when he told me that he didn’t own CDs. That he rarely listened to the radio. Those outlets—endlessly playing back familiar tunes that you knew all the words to, or would soon learn—were too limiting, too stifling, for creativity, he said.
He may not have realized it at the time, but he was fighting against algorithms, fighting against being put into a common box, fighting against the groupthink echo chamber of likeminded cheerleaders. After that chance encounter, I started following his lead, unintentionally. I began branching out into different musical genres, expanded who and what I read, and listened to opposing views with curiosity instead of disdain. This simultaneously made me both more and less informed, which was never more evident as I entered my new fight with Lyme disease.
Apart from researching a specific topic, I purposefully have avoided most social media outlets dedicated to the disease. I don’t know anything about alternative treatments, special diets, or the latest conspiracy theories of collusion. I also don’t hear the cacophonous drumbeat of anger from patients or exasperated frustrations from physicians. None of it. I don’t want those biases unintentionally clouding my findings, pushing me to conclusions that just aren’t there—even though the crowd insists they are.
Since the 1940s, researchers have doubled and tripled down on the MS latitude gradient hypothesis, gradually becoming blind to other potential causes. If only they had cross-referenced their findings with a map showing the prevalence of Lyme disease and really compared the two. They would have then seen what any observant elementary school pupil could have pointed out if they bothered to glance up from their TikTok videos—that the similarities are breathtaking, unmistakable….
Lyme disease prevalence in the US [courtesy Bay Area Lyme Foundation] compared to MS prevalence in the US.
There is indeed a gradient, only one that always slopes ominously into tick country. With that single realization, all those puzzling anomalies that MS researchers have tried to explain for years suddenly become clear and explainable. Meanwhile, that latitude theory, which purportedly explains the prevalence of multiple sclerosis? And the sunlight theory? And the vitamin D theory? While there may still be a weak connection to the autoimmune disease, they largely are all red herrings, efficiently and surreptitiously distracting researchers away from the tickborne vector for the past half century. The most recent distraction—another failure—was an exhaustive 8-year clinical trial on vitamin D supplements, the first of its kind in the world, which reported in late 2022 that the vitamin did not prevent the development of MS.
The day before this chapter was released, a puzzled Dr. Beaber, mirroring the thoughts of neurologists worldwide, asks why, oh why, does the “latitude gradient” in MS spare southern Africa after yet another new MS prevalence study.
Researchers had been so focused on the minutiae that they overlooked the big picture. Researchers had been so trusting of the accuracy of laboratory tests for Lyme disease that they ignored all evidence to the contrary. Researchers had been so adamant that MS wasn’t Lyme disease—one is countrywide, the other regionally isolated—that they never seriously considered that their mere coexistence, with Lyme regularly being misdiagnosed as MS, could explain the latitude gradient….
Nicki Bluhm’s “Feel” (featuring Karl Denson) started playing through my Qobuz app. Qobuz is a rare hi-res streaming music service that eschews algorithms, mindfully guiding listeners to discover music at their own pace, pigeonhole free. I turned it up. No, louder, as the song that could be an anthem to anyone suffering with a chronic illness—“I don’t wanna feel this way no more,” belts Ms. Bluhm—thumped through the speakers. Last I checked, her tune on YouTube had 716 views in 9 months. I made it 717.
No, multiple sclerosis isn’t Lyme disease. The prevailing evidence just doesn’t support that conclusion—by all accounts they are two separate, distinct diseases, with wholly different treatments. But in appearance, they are identical twins that a mother would have trouble telling apart, much less a neurologist. And for decades they have been playing seamlessly together, with countless Lyme disease patients mistakenly diagnosed with multiple sclerosis stealthily infecting virtually every MS neurological practice worldwide, every MS clinical trial, every MS epidemiological study.
The damning evidence bleeds through the nooks and crannies of even the most mundane MS research. It’s always been right there, hidden in plain sight.
NOTE: There will be a one week pause before Chapter 29: Fail Better releases, now scheduled for publication March 22.