Sit Down Before Reading: A Memoir by Dave Bexfield
I am familiar with epic fails. (Even though she is in the other room, I can see my wife furiously nodding in agreement.) Sure, you know about how I got locked outside my inn naked after taking Viagra, but that’s just a tiny example of my prowess in that department.
Like that time I flashed all of Copenhagen when I tried to lock the electronic sliding door of a fancy handicapped-accessible bathroom, only discovering as the door shooshed open, pants and underwear around my ankles, that the “lock” button was actually the Danish “open door swiftly” button.
"With the turn of a key, the automated sliding door quickly whooshed open like I was on the set of Star Trek. Totally trick ...Only when I pressed the lock button, it dawned on me that it might not be such a button. WHOOSH. The door flew open, and suddenly I wasn’t on the set of Star Trek. Or Star Wars. Or Battlestar Galactica. I was in a horror movie taking part in the obligatory naked scene as I was suddenly flashing all of Copenhagen."
Or that time I tried to bail on kayaking when my MS celebrity doomed me, as a fan recognized me from my advocacy website and gushed how inspired she was by my determination (even getting a tattoo!), oblivious to the fact that I was determined to bail moments earlier.
Or that time Laura and I bravely took my off-road wheelchair onto a narrow trail with precipitous hazards* on three sides—to the left, a ravine OF DEATH, to the right, a gorge OF DEATH, and ahead, an impossibly large tree root OF DEATH. Just as I was telling my wife that maybe we should turn around, my wheelchair lurched forward like it was a football sled being propelled by the front four of the ’85 Chicago Bears being chased by bees. I remember thinking, as I was sliding on my back down the ravine OF DEATH, that we almost made it over that tree root. *Okay, not that precipitous.
Dave with the ravine of death and gorge of death on either side of him
Point is, I have experience with failure. But every failure leads me closer to success, each failure additional kindling until there is enough to fuel a raging bonfire. Unfortunately, with treatment options for Lyme disease in New Mexico drier than the Rio Grande during the worst drought in 1,200 years, after nearly two months of trying to make inroads, I had assembled nothing more than a pile of parched twigs and a decrepit dried cholla cactus.
Having worked with a number of leading researchers in multiple sclerosis as the founder of ActiveMSers, I’m comfortable and confident when it comes to reaching out to the world’s experts in MS. In truth, I’m that way with everyone I cross paths with, whether it’s striking up a conversation while tinkling next to media mogul Ted Turner or breezily chatting (unknowingly) with Charlize Theron when she happened upon our local grower’s market during her morning jog. Or when I ran into fellow writer George R. R. Martin at an Amtrak station/microbrew pub the other afternoon in the three-horse town of Lamy, New Mexico.
Dave and Laura with A Song of Ice and Fire author George R. R. Martin
It seemed totally normal to sit down (technically I was already sitting) and have a beer with GRRM and his posse as jokes were made about my memoir—hurry up and finish already, Dave!—being completed sooner than his epic novel A Song of Ice and Fire, which Game of Thrones was based on. As our discussion turned to my 17-year misdiagnosis saga, he told me about a friend of his who also had a harrowing experience with Lyme disease: Kris Kristofferson. For a decade the legendary singer was in a precipitous decline, wrongly diagnosed with dementia stemming from early Alzheimer’s, which forced him to stop touring, stop singing. Another decade lost to a tick and a misdiagnosis.
I passed along my business card to Mr. Martin in the event he ever wanted to reach out to me in the future. Because you never know. As he looked it over, he found it noteworthy that a person with Lyme disease gave him a business card with an MS logo and an MS name, leading to our ad hoc group spitballing new monikers. ActiveLymies was promptly dismissed. We parted ways after a quick photo, but before leaving I told him that sometime in the not-so-distant future he’d be able to brag. Not just about getting name-dropped in SDBR, but about meeting me, the guy who irrevocably changed healthcare.
I'm Not Crazy, I Have Lyme
A few years back, a 31-year-old Canadian woman went on a wee bit of a psychotic bender. Convinced she was being followed by a nefarious group conspiring to abduct her with an ultimate scheme to trade her on the black market, she might have made some inappropriate decisions. At least I’m surmising they were inappropriate, as she initially was threatened by the Mounties with being charged with “mischief, assault with a weapon, uttering a threat to cause death, and dangerous operation of a motor vehicle.” In a stroke of good fortune, she was found “not criminally responsible” on account of a mental disorder, which a team of MS specialists pegged to her recent MS diagnosis.
Mental issues with multiple sclerosis are frequent (brain fog, depression, forgetfulness), but full-on psychosis is rare, occurring in just 2-3% of cases. So a team of university researchers excitedly wrote up their findings for a 2019 case study, including a few choice opinions. See if you can spot the exasperated asterisk in their abstract, the one dismissive of Lyme disease.
Psychiatric symptoms resulting from Multiple Sclerosis (MS) itself or its treatment are well known. However, the relationship between psychotic episodes and Multiple Sclerosis remains debated. In this paper, we present the case of a woman who developed a chronic psychotic disorder a few months after the onset of MS. We describe the process which led us to make the diagnosis of Psychotic Disorder due to Medical Condition (Multiple Sclerosis). Because her criminal charges brought significant attention to her case, we also address the difficulty in treating a neurological condition with psychiatric features within the forensic context. Moreover, one of the main concerns of the patient was that Lyme Disease was the correct diagnosis as opposed to MS. We also report the difficulty of treating and initiating successful follow-up for a patient whose paranoia is enabled by the opinions of certain health advocacy groups.
The unnamed young woman, let’s call her “Jessica,” agreed to have her case study written up for the medical journals under one condition, one begrudgingly agreed to by the researchers. She asked that the report specify that “she was of the opinion that she suffered from Lyme disease and was misdiagnosed.” So those researchers added “Propaganda” to their keywords for a more accurate search term. Nice.
According to these researchers, there was never any urgency, much less need, to test “Jessica” for Lyme disease, and certainly zero reason to treat her with antibiotics that might, by chance, relieve her of her crime-spree-causing paranoia. Because that’s the unofficial official policy, worldwide, when it comes to cases of MS. No routine testing for Lyme disease, no antibiotics. The same is true for cases of psychosis. No routine testing for Lyme disease, no antibiotics. Even for previously healthy children who are experiencing a sudden onset of developmental, behavioral, or psychiatric symptoms. No routine testing for Lyme disease, no antibiotics. A waste of time and money.
Leading the no-test-for-you charge is the illustrious Infectious Disease Society of America (IDSA). Their recommendations for diagnosis of Lyme, updated as recently as 2021, are crystal clear and Custer confident and have been adopted by other infectious disease organizations around the globe. Perhaps not surprisingly, they have, in turn, have been enthusiastically embraced by health insurers. When in doubt, don’t test.
In patients with typical amyotrophic lateral sclerosis, relapsing-remitting multiple sclerosis, Parkinson’s disease, dementia or cognitive decline, or new-onset seizures, we recommend against routine testing for Lyme disease (strong recommendation, low-quality evidence).
No test for you, Kris. No test for you, Jessica. No test for you, little Jimmy. No test for me. And definitely no test for anyone with MS. But it’s not personal. Just anyone with any disease that could be confused with Lyme disease. Odd spots on the brain MRI? Unexplained symptoms causing a rash of issues? A devastating diagnosis of an incurable disease? Don’t test without a reason, a damn good reason.
They also recommend against treating with antibiotics after any ole tick bite unless the medical provider is sure-sure and can positively answer three pointed questions. Questions that, if answered in the affirmative, permit safe passage over the well-maaaybe-it’s-Lyme-disease threshold, a threshold onerous enough to make the quest for the Holy Grail seem downright easy.
If a tick bite cannot be classified with a high level of certainty as a high-risk bite, a wait-and-watch approach is recommended. A tick bite is considered to be high-risk only if it meets the following three criteria: the tick bite was from (a) an identified Ixodes spp. vector species, (b) it occurred in a highly endemic area, and (c) the tick was attached for ≥36 hours.
Purportedly IDSA had planned to include a fourth “Bridge of Death” question about naming their favorite color (or colour, as the case may be for the blokes faced with that question in “The Holy Grail”), but that condition inexplicably got nixed. They apparently couldn’t come to an agreement on how dark and soulless the black shade of coal should be. Worse, the result—for testing they deem accurate—might come back, gasp, positive. And that could be deeply problematic.
These recommendations place a high value on avoiding false positive Lyme disease test results, which can delay appropriate medical evaluation and treatment of other disorders and lead to unnecessary antibiotic exposure and potential side effects. Screening neurologic patients with a low a priori likelihood of Lyme disease—that is, without a history of tick bite, erythema migrans, or other more typical manifestations, would result in far more false positive than true positive results.
By using the Latin term “priori,” IDSA assures its recommendations cannot be questioned. Ipso facto, no duh-so. Never mind that tick bites often are not remembered, and that the tell-tale rash often doesn’t appear. Or that people who don’t live in endemic areas for ticks might, per wild chance, have traveled to such an area in their lifetimes. It’s not as if getting a tick bite, unlike unprotected sex, can happen just once to hit the jackpot. Oh, wait.
We’d all like to believe that our journey with a disabling disease was foretold, a regrettable side effect, perhaps, of getting mono as a teen. An unlucky bellyflop off the gene pool high dive. An unavoidable short straw in the game of life. But what if it’s not always that?
Regardless, IDSA’s chief concern is to avoid any “delay” in getting misdiagnosed, er diagnosed. Because think of the alternative. Instead of living 17 years fighting a harrowing non-existent disease with inappropriate, wildly expensive treatments that suppress the immune system and open the door to serious infections, all the while skirting death and plunging into a disability hell, a patient like myself might experience side effects from antibiotics. The horrors of which apparently are well known (to IDSA, at least) to dwarf the pesky side effects of a disease like MS, which might merely cause you to lose the ability to walk and the capacity to work and require you to have the near constant aid of a caregiver to do frivolous things like bathe or eat. It’s funny to reflect on my decision to take part in a risky stem cell transplant trial where I had to sign a consent form, one that said I was okay with the odds of death potentially being as high as 1 in 20. (Honestly, at that point I would have signed at 50-50.) But who knew that the antibiotics I took post-transplant were the real risk.
(For balance, overuse of antibiotics is a problem worldwide, as patients demand them for myriad conditions that absolutely don’t warrant them, like viruses, e.g., the flu. I get that. But the underuse of antibiotics for a condition that demands them, like bacterial infections, e.g., Lyme disease or a stomach ulcer? I don’t get that.)
Also, in a true act of charity and selflessness, IDSA boasts that it is making these recommendations for society as a whole in order to control rising rates of antibiotic resistance. They even put out an official policy paper, Combating Antimicrobial Resistance: Policy Recommendation to Save Lives. They conveniently never specify which lives they were willing to sacrifice—or how many lives were going to be affected—to do this so-called saving by limiting antibiotics when they are critically necessary for recovery from Lyme. But, hey, someone’s gotta take one for the team. I just wasn’t expecting to be forced to volunteer with countless others.
Now, on the off chance that there is a “positive” result suggesting Lyme disease, and it’s not a ubiquitous false positive (perhaps reacting to antibodies from a prior infection), a course of antibiotics is the standard treatment for Lyme, a cautiously limited course. Because, again, save lives.
IDSA makes “strong recommendations” about the length of antibiotic treatment: as little as a single dose of doxycycline, but generally 10 days to three weeks, occasionally four. If a practitioner inexplicably extends that to eight weeks and there is no clear resolution, welp, bummer. Because, again, think of the danger of making a mistake and subjecting one to “unnecessary antibiotic exposure.” You wouldn't want to do that just to prevent someone from having to experience a lifetime of disability, right?
Fortunately, the crack MDs and researchers associated with IDSA aren’t concerned about a swath of MSers getting infected with Lyme disease, because it apparently happens at a significantly lower rate than the general population. For proof, IDSA references the avalanche of definitive studies concerning MS and Lyme—two teensy studies, one from 1988, the other from 1989—both of which “failed to identify consistent associations between Lyme disease and … multiple sclerosis.”
“Sera of 106 multiple sclerosis patients and 103 closely matched controls were examined for Borrelia burgdorferi antibodies. The prevalence rate in multiple sclerosis patients was 14.2%, in controls 25.2%.” [Journal of Neurology, Neurosurgery & Psychiatry]
“Lyme disease is said to produce a late syndrome resembling multiple sclerosis. We analyzed serum antibodies to Borrelia burgdorferi in 100 patients referred for possible MS. All lived in an area endemic for Lyme disease. Only 1 of 89 definite MS patients and 2 of 11 non-MS patients were antibody positive. Infection with Borrelia burgdorferi is rare in MS, and Lyme disease is unlikely to play a significant role in the differential diagnosis of MS.” [Neurology]
Curious. On the surface, compared with the general population, the observation of so few antibodies to the bacteria associated with Lyme disease seen in a group of MSers nearly the size of a Mahler orchestra performing his 8th would seem like a statistical improbability... maybe even like some cases of Lyme in the MS population were being missed by ineffective tests for neurologic forms of Lyme disease. Until you realize that the much more obvious explanation (again, to IDSA, at least) MUST be that people with MS never venture near the woods. Or garden. Or really do anything outdoors. And since those annoying false-positive Lyme results that IDSA has railed against indicate that antibodies can still show up years after a Borrelia burgdorferi infection, it must therefore be presumed that people with MS were born as nature-fearing homebodies who never dared to venture into a tall stand of grass even long before the accrual of any disability that might limit their access to the great outdoors. The proof is in the science.
People with MS obviously never venture outdoors
Now IDSA does admit that it theoretically could be possible to confuse the two diseases. But c’mon, that, like, never happens. Except, supposedly, very rarely.
Lyme disease can very rarely cause focal inflammation in the brain or spinal cord (ie, parenchymal CNS disease or encephalomyelitis), with typical inflammatory imaging characteristics that could be confused with the first episode of demyelinating disease. Testing may be informative in this setting. In contrast, small MRI-detected cerebral white matter T2 hyperintensities occur very commonly in individuals with vascular risk factors and migraineurs, becoming increasingly frequent with age. Consequently, MRI findings of nonspecific T2 white matter hyperintensities are not generally useful to diagnose Lyme neuroborreliosis. Misattribution of these to Lyme disease could lead to overuse of antibiotics with underemphasis on treatable vascular risk factors.
Check that. They meant exceedingly rarely.
Lyme disease-related parenchymal involvement of the brain or spinal cord, evident by MRI imaging or focal findings on neurologic examination, is exceedingly rare. Treatment in this population has never been systematically studied. Incidence seems even less today than it was 30 years ago when this aspect of Lyme disease was first described. No studies have compared different durations of treatment. Typically, 2- to 4-week courses [of antibiotics] have been used successfully in these patients.
Curious. As cases of Lyme have exploded globally in the last several decades, incidences of this one mind-blowingly rare type of Lyme, the one type that seamlessly mimics MS, have inexplicably dropped. What are the odds? Must just be another coincidence, so say the researchers. Ipso facto.
We’d all like to believe that our journey with a disabling disease was foretold, a regrettable side effect, perhaps, of getting mono as a teen. An unlucky bellyflop off the gene pool high dive. An unavoidable short straw in the game of life. But what if it’s not always that? What if some of our fates weren’t hinged on the luck of the draw but on a flawed test and "strong recommendations” based on “low-quality evidence” from a small huddle of scientists? What if?
Meanwhile, I was still desperate to receive appropriate care. It was time to bring in the true experts, starting with John Aucott, one of the nation’s leading Lyme disease researchers at Johns Hopkins. I spelled out what made my example such an interesting, potentially historic case study and waited for his response.
I eventually received a letter, a thin letter, reminiscent of the kind you never wanted to get during the college application process. Sure enough, it was a nicely worded and apologetic “Dear John” letter from Johns Hopkins’s Dr. John Aucott. A dear John Johns’s John letter, a new first for my collection of growing dismissals.
I kept trying to shake myself awake from the nightmare, but I kept ending up back on Elm Street.