Sit Down Before Reading: A Memoir by Dave Bexfield
Uncanny, I know. You almost cannot tell the difference between me and Alfred Nobel, that Swedish chemist who made a name for himself with some dy-no-mite prize. Clarification: the invention of dynamite and the creation of the Nobel Prize. But clearly, my 2013 pose in front of the Stockholm museum dedicated to his legacy foretells of this now foregone conclusion: my future Nobel prize. And no, there is not an award given annually for dorkfulness (hardy-har-har, sisters). We’re talking medicine.
Now before you start pointing out the immediate flaws to this pronouncement—as in I have no medical training (C- in Chem 101), zero scientific research experience other than volunteering for clinical trials (five of them!), and a liberal arts degree in the catch-all “communication”—there is precedent: Tu Youyou. Her story is inspiring, and her path to the Nobel was paved after her own health trials with tuberculosis at 16, a path that fatefully swayed her to commit to a career in medicine.
Tu Youyou turned to Chinese medical texts from the Zhou, Qing, and Han Dynasties to find a traditional cure for malaria, ultimately extracting a compound – artemisinin – that has saved millions of lives. When she isolated the ingredient she believed would work, she volunteered to be the first human subject. She is the first mainland Chinese scientist to have received a Nobel Prize in a scientific category, and she did so without a doctorate, a medical degree, or training abroad. —nobelprize.org
I know what you are thinking: Dave, you? You are no Tu. But hear me out on this one.
I check off every box for a clinical diagnosis of Lyme disease: frequented a location endemic to ticks (Lyme, CT), followed by a tick bite, a rash, joint pain, facial palsy, knee swelling, and cardiac issues. As the disease progressed, it migrated to a more neurological presentation with neuropathy, weakness, bladder issues, and lower limb swelling, egregiously capped with a generous sprinkling of psychosis. All symptoms that partially, mostly (re: bladder), or fully (re: swelling and psychosis) resolved after the introduction of antibiotics specific to treating Lyme disease. Ergo, one of two things must be true.
Either: I have multiple sclerosis but have made the revolutionary discovery that doxycycline rids MS patients once and for all of swollen feet and ankles, mental disturbances to include going crazy, and virtually all bladder issues (no more meds, self-cathing or indwelling catheters, yay!), while helping to alleviate most other debilitating symptoms. This, of course, will cause the 2.8 million diagnosed with the disease to celebrate in the streets with wanton disregard for safety, likely resulting in minor injuries from walking canes being thrown errantly into the air in revelry. (Some injuries will be attributed to falling canes, others to actual falls since folks no longer have canes to support themselves.) Outcome: Nobel.
Or: I have Lyme disease but have made the revolutionary discovery that the current diagnostic testing for the disease is deeply flawed with a particular blind spot for neurological forms of Lyme, causing countless people with legitimate cases of Lyme disease to be misdiagnosed with multiple sclerosis, resulting in billions of dollars being wasted on needless treatments and therapy. This, of course, will trigger the 2.8 million diagnosed with MS to revisit their own diagnoses and will ultimately reveal the rash of misdiagnosed cases correctly predicted by yours truly. When these patients finally get on proper treatment for their correct disease, they will all celebrate appropriately. (Flying canes, minor injuries, you know the drill.) Outcome: Nobel.
Now, I’m not counting my Nobels before they hatch (one for Medicine, the other for Literature, obviously), as Tu’s took a quarter century to reach her, about the same length of time for the dudes who discovered that ulcers aren’t caused by stress (eureka!) to get theirs. And then there’s that whole “burden of proof” thing that I need to address to make my case.
But there is one type, thought to be exceedingly rare, that is a doppelganger for multiple sclerosis: Lyme encephalomyelitis.
If my negative Lyme disease tests are accurate and I indeed still have MS, that boils down to everyone with the disease just taking the appropriate antibiotic and preemptively putting up an umbrella to thwart those darn airborne canes. Case open, burden met, case closed.
Lyme disease? That's a wee bit more complicated.
The Great Imitator
Lots of diseases have claimed to be “The Great Imitator”—originally syphilis, but then tuberculosis, lupus, hypothyroidism, and others (MS also is well known to mimic other illnesses)—each one angling to be top dog for their ability to imitate other diseases. Yet Lyme disease might be muscling out the others for the crown. There’s a good reason for that. Take a gander at this list of look-alikes compiled by the Canadian Lyme Disease Foundation.
Chronic Fatigue Syndrome
Early Alzheimer’s disease
Gastroesophageal Reflux disease
Irritable Bowel Syndrome
Psychiatric disorders (bipolar, depression, etc.)
Various other illnesses
Complicating matters, since 1990 estimated cases have soared. While the number of reported and “confirmed” cases to the CDC has steadily risen, the national public health agency itself estimates that annual Lyme cases in the US have been underreported by 10-fold and are closer to a half million. “Recent estimates using other methods suggest that approximately 476,000 people may get Lyme disease each year in the United States.” Other research backs that up. In research released in August of 2022, private insurance claims for the treatment of Lyme over the last 15 years have risen an astonishing 357% in rural areas and 65% in urban zones. And the scourge of Lyme disease is a worldwide problem. A 2022 study found that upwards of 14% of the world’s population has antibodies to Borrelia burgdorferi. And even that number is considered low due to the lack of sensitivity with existing testing.
According to the Environmental Protection Agency (EPA), part of this alarming spread can be attributed to climate change. “The life cycle and prevalence of deer ticks are strongly influenced by temperature” and they like it warm and humid. And it’s not just deer that spread deer ticks. Birds, mice, and other critters have become such frequent hosts that backyards, gardens, and neighborhood parks are just as likely to have ticks lurking in their grasses as a dense forest is. And with the average female tick laying upward of 2,000 eggs before she goes off to the proverbial farm in upstate New York, the menace is only growing.
So, ticks and Lyme disease are a known and increasingly bulging problem. But what unique role does multiple sclerosis play in this infectious puzzle?
Pick Your Poison
Lyme disease comes in a festive kaleidoscope of disturbing flavors and can be divided into three stages: early localized, early disseminated, and late. Fortunately, if caught early (localized or
disseminated, as 95% of cases reportedly are), Lyme disease can often be cured with a short 2-4 week course of antibiotics. Problems arise, however, if Lyme borreliosis isn’t recognized or
symptoms that suggest an infection are overlooked for longer than 6 months. Worse, many Lyme sufferers have no recollection of a tick bite, much less the appearance of a bulls-eye rash (erythema migrans), a frequent—but often absent—early marker of the disease. When that happens, untreated Lyme morphs into late-stage Lyme, generally Lyme arthritis (60% of cases) but occasionally Lyme carditis (4-10%) and neurologic Lyme (up to 15%). These versions can tag team all WWE wrestler-like, but there’s usually one that becomes more domineering than the others and grabs the folding chair for prime health bashing.
Lucky me, I experienced the glorious trifecta—great for betting on horse races, not so great in the disease department—as Lyme arthritis knocked on my door first, then Lyme carditis rudely showed up uninvited, before neurologic Lyme moved into the spare bedroom and made itself at home, sticking its smarmy feet on my couch and commandeering the TV clicker without asking for permission.
More often than not, and especially over time, these forms can generally be differentiated from MS despite overlapping symptoms. But there is one type, thought to be exceedingly rare, that is a doppelganger for multiple sclerosis: Lyme encephalomyelitis. It’s so uncommon—some estimates put it at fewer than 2% of Lyme disease cases, others even lower—that it’s rarely been researched outside of case study reports. Just how stealthy of a mimic is it? See if you can differentiate between MS and this type of Lyme using common laboratory diagnostics and often-seen clinical symptoms from each disease.
Disease #1: brain lesions, spinal lesions, oligoclonal banding in the spinal fluid, fatigue, cog fog, numbness and tingling, bladder and bowel problems, weakness in extremities, mobility issues, muscle spasms and weakness, seizures, speech and swallowing difficulties, sensitivity to heat, impaired coordination, and vision problems. The disease course can be relapse/remitting or steadily progressive.
Disease #2: brain lesions, spinal lesions, oligoclonal banding in the spinal fluid, fatigue, cog fog, numbness and tingling, bladder and bowel problems, weakness in extremities, mobility issues, muscle spasms and weakness, seizures, speech and swallowing difficulties, sensitivity to heat, impaired coordination and vision problems. The disease course can be relapse/remitting or steadily progressive.
Did you catch it? You had to look closely, be on top of your game, and not blink. Disease #1 clearly is Lyme encephalomyelitis, the description easily identifiable by the use of the Oxford comma in the first sentence. (This type of Lyme disease is thought to be more common in Europe, hence the Oxford-influenced grammar choice.)
That’s the discernible difference. In other words, on the surface there is no difference. None. Reread what I just wrote, and then reread it again. And then let it sink in that one is treated with powerful, expensive, immune-suppressing drugs meant to slow progression while the other is treated chiefly with antibiotics to clear an infection, ultimately substantially reversing disability in many cases. Manageable vs. curable. Lifelong vs. temporary. $91,835 in annual drug costs vs. a few thousand dollars in total, if that.
Now, I can see MS specialists spitting out their coffee and tripping over their bow lines on their sailboats to protest what I just wrote, furiously waving research study after research study while sputtering about white matter plaques seen on imaging, oligoclonal bands in the cerebrospinal fluid, and antibiotic resistance. They can tell the difference. They are the specialists after all, while I am a rank amateur, emphasis on rank if I missed my shower. Not to worry, doctors, I will faithfully and thoroughly address your concerns as we move forward and will aspire to do so with minimum snark.
In the meantime, I encourage friendly wagers among your esteemed colleagues about the Sophie’s choice science is going to be facing with my case. Will I be up for a Nobel for miraculously discovering that a cheap and common antibiotic effectively treats MS … or a Nobel for exposing a catastrophic flaw in the diagnosing of Lyme disease that will result in scores of people getting undiagnosed with MS?
You’ll have to excuse me and my (pie-in-the sky?) Nobel prize musings; I need to get back to my story where a new feeling has surfaced. A dreadfully unsettling feeling. But one I’d experienced before.
In the early days of my recovery, as I enjoyed gains atop of gains, weakness rapidly swamped my body, my superpowers totally sapped as if I had bathed in kryptonite. (Or, since I’m not sure about the melting properties of the fictional green, crystalline material, maybe a better analogy would be that I had exfoliated a little too aggressively using a kryptonite loofah, upon retrospect a poor grooming choice.) Now I barely had the strength to sit up, I couldn’t transfer out of my wheelchair without help, and getting on and off the toilet became a near impossibility. Worse, my bladder was in full revolt.
It felt like I was headed into the abyss. Was I relapsing?