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Chapter 18: Taking a Stand

Updated: Apr 1

My head began to spin. That icky sense of nausea started to burble up. If I had had a mirror, I would have been able to see the shade of my skin growing incrementally paler, closer to the color of kindergarten paste and decidedly less tasty, at least to Sammy Flaggins, that kid in third grade who ate the stuff for breakfast. The crowd that had gathered around me—two therapists and a technician as Laura watched—monitored Teetering Dave with similar ashen faces, hoping all the protective straps and braces held.

For the first time in nearly two years, I was standing. Sort of.

My longstanding (oh the puns!) appointment to get evaluated for a standing wheelchair had arrived. To slow muscle atrophy and better maintain bone density, I desperately needed to be upright more, using my legs to support my bodyweight. With the push of a button, the electric gee-wiz wheelchair accomplishes just that, rising from a seated position to near vertical. For support, a brace locks in your legs at the knee while a padded chest protector keeps you from auguring forward, necessary as my weakened abs offered all the support of a well-played-with sock monkey. A seatbelt rounded out the safety checklist. But for this trial run, I was thinking a crash pad used by stunt doubles jumping off buildings might have been more appropriate.

“We warned you that you were likely going to feel woozy!” the team said in near unison after I had been standing—with help, vertically, on my actual legs—for nearly a full minute. My body was wholly unfamiliar with the sensation, triggering a drop in blood pressure. It’ll take time, they said, to build up the capacity and endurance to stay upright for any length of time. I lowered down, regained my bearings, and then cracked what had to be a half dozen jokes, one almost certainly involving “standup comedy,” because that’s how I “roll” with my “lame” humor. (Laura is sighing as she proofs this.) Now, it was my turn to make their heads spin.

Watch Dave's first stand-up routine from 2018's HealtheVoices, the world's largest conference of online health advocates

“I can’t wait to ditch this $55,000 contraption after I relearn how to walk!” Was that Dave, the jokester? Or delusional Dave? They weren’t sure. Before they could gently correct me—explaining in hushed tones how in MS we “manage” our disability losses, not regain them—I filled them in on my unique situation, my misdiagnosis discovery now a month old. Once jaws were returned to face level after getting skinned on the patio cement as if out of a cartoon, they were all appropriately joyrified, my occupational therapist in particular.

“I want to help you walk again,” she insisted.

On our first therapy session a week later we established a baseline, which was more like a basement, as my Lyme disease had plundered virtually every faculty. My leg strength was nonexistent: I could not budge the pedals on my seated therapy stepper using solely my legs. My handwriting? Worse than a doctor’s, beyond illegible, my endurance limited to a sentence or two. Any semblance of walking seemed as farfetched as getting drafted in the NFL … at the age of 54 without operable appendages called “legs.”

In other words, game-the-hell on.

Magic Sauce

The best possibility for me to reverse my myriad disabilities brought on by Lyme encephalomyelitis—to have a fighting chance to be able to put one foot in front of another and walk again—means IV antibiotics, universally deemed “medically necessary.” At least that’s what pretty much every US health insurer says—Aetna, Anthem, Blue Cross, the lot of them. If a patient can cross their version of the Bridge of Death, even IDSA recommends IV antibiotics for Lyme encephalomyelitis. There’s a reason for that.

“For neurologic Lyme disease, the best-tested antibiotic is IV ceftriaxone,” writes Dr. Brian Fallon, one of the world’s leading Lyme neuroborreliosis researchers (Fallon, et. al., Conquering Lyme Disease, Pg 348). “Patients with disseminated Lyme disease, such as neurologic Lyme disease affecting the central nervous system … might need a more potent therapy that could cross the blood-brain barrier… such as intravenous ceftriaxone,” says another oft-referenced Lyme disease study. Indeed, noted Lyme disease and MS expert Patricia K. Coyle, MD, feels strongly that just such a treatment for chronic neurological Lyme disease is warranted. “I think a very important issue is that, did the patient receive a penetrating antibiotic regimen on the possibility that they had a sequestered compartment, like the CNS, involved? And if they didn't, then maybe they haven't been appropriately treated.”

Although there are virtually no studies on Lyme encephalomyelitis due to its reported rarity, much less a specific study on the effect of IV antibiotics in this population, there is ample evidence in other Lyme neuroborreliosis variants that crossing the blood-brain barrier with treatment can be amazingly effective even years after infection---and despite the previous use of oral antibiotics, as this research discovered.

  • “Notable is that improvement was reported by 61% at six months and by 89% at 12 to 24 months, indicating that improvement after treatment can take time.”

  • “Also notable is that improvement was reported by so many patients, despite the fact that the initial infection occurred many years earlier (average of six years) and even though the majority had had prior antibiotic therapy (although none had had two or more weeks of intravenous ceftriaxone therapy).”

So that settles that. There is 100% agreement by experts, health insurers, professional societies, and researchers that I should be treated with intravenous antibiotics. And 100% agreement that, because the currently available tests fail to show positive antibodies demonstrating laboratory evidence of my Lyme disease, getting said treatment instead now falls into one of three categories: 1) No Way, Jose, 2) Not a Chance in Hell, or 3) Over My Dead Body. Oops, I forgot a fourth: When Pigs Fly. This appears to be problematic.

Pigs flying pinata pigs in a tree

Plan B, Er C, No D!

With the traditional route of “go see your doctor” for a “medically necessary” treatment apparently now off the table—my PCP isn’t connected with hospital privileges to administer this type of infusion and zero other doctors locally were willing to help without a positive Lyme test—I figured I’d turn my full attention to Lyme disease research centers. My case has all the markings of an historic one: 17 years misdiagnosed, 7 failed MS therapies, 5 MS clinical trials, and over $2 million spent on unnecessary care—all of it meticulously documented. Researchers could learn heaps from my successes and failures, maybe even land on a groundbreaking discovery or two. Wanna advance research? My body’s a veritable gold mine with reams of data from all my past trials. All those MRIs, blood draws, spinal taps, bone marrow aspirations, and myriad other tests will finally pay off. Johns Hopkins’s loss will be someone else’s gain.

With their extensive history in neurological research with Lyme disease, Columbia University and their Lyme and Tick-Borne Disease Research Center won the Dave lottery, those lucky ducks. I sent off a compelling history of my Lyme disease case and waited for them to cash in the Powerball. Five months nearly to the day later I got a canned response via email.

Email from Columbia University Cohen Center for Heath and Recovery

Thank you for contacting the Lyme & Tick-borne Diseases Research Center and expressing interest in our Clinical Center. Unfortunately, we are not currently booking appointments or adding names to our waitlist. We realize this is very disappointing, but we are in the process of hiring and training new staff for our Cohen center. We hope that once this is done we can begin to see more patients soon.

Fortunately, I was wise enough to pursue other centers in the meantime. As I’d already participated in one seminal research trial for the National Institutes for Health, I figured the NIH’s Lyme Disease Study Team would love to get ahold of this version of Dave. So, I wrote the head of the department only to get a form letter back two weeks later (an improvement, at least) asking to see if I wanted to participate in a clinical trial. That had been running since 1999. And mandated, among a litany of other testing, four lumbar punctures in the first year alone. Oh, and one other thing. You must test positive for Borrelia burgdorferi.

I was then surprised, not surprised, at the response I received from Stony Brook University, a respected authority in both multiple sclerosis and Lyme disease, arguably the authority. After reaching out twice, to two separate experts, I’m still waiting to hear their thoughts. Now that’s the kind of go-get-’em tenacity the Lyme disease community needs to advance critical research.

For reference, in 2009 Mark Reynolds, then of the Arizona Diamondbacks, broke Major League Baseball’s single season record for strikeouts by a batter with 223. While we dabble in slightly different fields, after my profound lack of success, I might need to arm wrestle Mr. Reynolds for the crown of G.O.A.T. when it comes to producing a tornado of whiffs.

Finally, I made successful contact with the most unlikely of saviors: a newspaper columnist.

The Deep Places book by Ross Douthat

Thank You for Saving My Life

When I wrote Ross Douthat of The New York Times to thank him for saving my life with his trilogy of columns and his accompanying memoir The Deep Places: A Memoir of Illness and Discovery about his desperate fight with Lyme disease, I set my expectations bar low that he would get the message, even lower that he’d respond much beyond a brief “thanks,” and lower still that he would write a few sentences of advice that might just help get me out of this denial Groundhog Day. I shouldn’t have been so jaded.

Dear Dave -- That's just an incredible story, and I'm really grateful that I could play some role in helping you. When I decided to write about my sickness I obviously hoped it would be helpful to other people struggling with the disease, but yours is the most dramatic example I could imagine -- thank you so much for being in touch and sharing it with me.

In his series, he wrote about his own trials of finding a doctor and appropriate treatment. Like me, he initially tried to go down the traditional Yellow Brick Road of established medicine, eventually relying on a bit longer-than-recommended extended course of antibiotics, which his infectious disease doctor reassured him would fix him straight up. But other docs he had consulted with in his orbit voiced graver concerns: that even that brief extension seemed extreme, and that if he had Lyme disease at all in the first place, it was certainly now in the rearview mirror fading like a farm tractor passed on a country road. Worst case: his body would recover naturally on its own. They were all wrong.

“I didn’t get better on his steady dose of antibiotics, the constant pain didn’t go away — while the advice to go off antibiotics entirely led to disasters, where I stopped the drugs and disintegrated quickly,” wrote Mr. Douthat in his second column.

Like me, his original Lyme disease tests were solidly negative—he had but one lone “band” that suggested Lyme antibodies were present. The CDC requires five for a positive test. Even so, his primary care doctor placated his initial concerns with a short course of doxycycline. As he details in the first installment, his experiences to find a diagnosis dovetail with mine. The myriad doctors, the unexplained reactions after antibiotics that temporarily incapacitate him, the “crushing chest pain,” all of it. Including the dismissiveness even though he lives in Connecticut, the state where Lyme disease was discovered.

The tipping point was my session with the head of infectious diseases at a major hospital, an appointment that took six weeks to get and that lasted all of 15 minutes. He listened to an abbreviated version of my story, sighed and leaned backward in his chair.

“Look, we’ve done everything for you,” he said. “If you had an infection, we’d catch it.”

Douthat's final installment in the series addresses the us vs. them split—between the Lyme community and purveyors of traditional medicine—that is creating an ever-widening gulf between who to trust and how “the experience of falling through the solid floor of establishment consensus and discovering something bizarre and surprising underneath — is extremely commonplace. And the interaction between the beliefs instilled by these experiences and the skepticism they generate (understandably) from people who haven’t had them, for whom the floor has been solid all their lives, is crucial to understanding cultural polarization in our time.”

Turning back to his email, eight paragraphs of genuine concern and the equivalent of a short column later, he had provided me with invaluable extra insight into the kind of challenges I was up against. My PCP could only do so much. Infectious disease doctors are a dead end. Research facilities are busy doing research—and then only on people “proven” to have Lyme disease. If I was going to get better, Mr. Douthat stressed, I needed a “Lyme Literate” doctor, or LLMD for short. Preferably local.

In New Mexico? The state where the blacklegged tick is not reliably found in nature? The state too hot and dry and high for ticks to thrive? The state with so few reported Lyme disease cases in the past decade that the CDC says the number is essentially zero? That state?

Charlatan or Champion?

Hucksters lurk everywhere in the universe of chronic illness, infesting once-logical brains with promises of cures—at a cost (please peruse our array of necessary supplements)—that routinely never materialize. As the founder of ActiveMSers, I’ve always rooted my advice in science, routinely infusing humor into my observations. “It is estimated that as many as 75 percent of people with multiple sclerosis modify their diets and/or take supplements. Certainly, eating healthier and losing weight is good for you, period. So is avoiding crystal meth, poorly packed parachutes, and street gangs.” Yet in that popular post, where I break down the supplement and diet industry in MS, I make an honest admission. “I don’t know.”

A few years ago, so frustrated with the tsunami of cures emanating from turmeric alone, I spent an entire afternoon on Google trying to find something, anything, the Indian spice didn’t purportedly cure. Hang nail, erectile dysfunction, broken foot, syphilis, ALS, pink eye, Ebola—cured, all of them. I failed to find a single mainstream ailment turmeric didn’t somehow fix. I closed my wasted afternoon with a stalkerish email to a staff writer on Last Week Tonight with John Oliver urging them to do an expose. When the writer didn’t respond, predictably, I wrote up a full op-ed for The New York Times, complete with The Turmeric Challenge. The NYT didn’t respond, also predictably. But lucky you, the newspaper’s loss is your gain!

Cure thyself with turmeric

click to read

Now I was sifting through alternative practitioners throughout the Southwest, virtually all of them naturopaths, trying to find evidence of Lyme disease expertise—the essential experience for the champion that I needed—between remedies for 5G trauma brought on by cell phone networks or discussions of the merits of heavy metal chelation. Despite using Lyme literate MD lists assembled by the popular website (memberships start at $50, required to access their physician database), the whole process was disheartening and counter to everything I had been preaching on my website for the past 16 years. Technically anyone can call themselves an LLMD. Who was reputable? Who was fringe? Who was straight-up quackers? There was no way to tell.

It was also unbelievably expensive. I’d have to travel out of state (with Laura, who would have to take leave from her job), stay at least one night in a hotel, and pay—upfront and out-of-pocket—an initial consultation fee, often listed at more than a $1,000. Health insurance is rarely accepted at these offices, which for many becomes even more problematic, as the journey to successfully treating chronic Lyme disease can take years. Worse, many of the treatments prescribed to fight Lyme and common coinfections that come with bacteria spread by the ticks aren’t covered by insurance either. Spending five figures to heal yourself is routine, and there are numerous reports of desperate patients exceeding $100,000 to find relief. It’s bad enough that countless lives and livelihoods have been obliterated by Lyme disease, but then to have any chance of recovery, of some semblance of a healthy wellbeing, you have to fall further down the well of potential financial ruin while abandoning traditional doctors?

This level of ludicrousness—for a common disease afflicting countless patients, too often raining down a shitstorm of disability—is unfathomable in a modern society with presumably modern medicine and modern thinking. Un-fucking-fathomable.

But, oh yeah, that asterisk. That asterisk in the Hippocratic Oath that says do everything possible to help your patient … unless they have Lyme disease.

I’m trapped. Groundhog Day. Again. And again. If Bill Murray himself rang my front door tomorrow it would not surprise me. Nor would it surprise me if he rang the tomorrow after that. And the tomorrow after that tomorrow.

This has to end. But how?

Dave Bexfield in an offroad wheelchair on a trail in open space


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