Sit Down Before Reading: A Memoir by Dave Bexfield
Stopping antibiotics when you have a stubborn case of Lyme disease might seem ludicrous. But I’ve been involved in far more ludicrous situations than I can count. Like the time I hit a pedestrian who literally jumped in front of my Toyota 4Runner while I was driving 50 mph, only to see him bound to his feet—just a flesh wound, apparently—and run away to the safety of a Home Depot, where he was promptly arrested. Or the time I was in Las Vegas and got personally invited to an exclusive private party hosted by one of the world’s hottest male models—complete with a gold keycard presented in a fancy jewelry box by the model himself—and I inconceivably decided I’d rather get a good night’s sleep than party with Tyson Beckford. Or the time a pair of cops flicked on their siren—as my sister Karen and I were involved in a rather animated discussion outside a restaurant—to lecture me about the importance of “not pushing your sister’s buttons on her birthday,” which I had, guilty as charged, most definitely pushed since I was faithfully playing the role of big brother.
But there were compelling reasons for the antibiotic stoppage, or more specifically, pause.
After more than 2.5 months of twice-a-day doxycycline—far longer than IDSA or the CDC recommends—and zero progress made in the quest to find an appropriate practitioner, our family doctor and I decided to try a test. Temporarily stop the antibiotic and reassess after two weeks. Maybe the extended course had done the trick. Maybe by now my disease had “burned itself out,” as some insist happens with Lyme. Or maybe the result would be different from the near year and a half of antibiotics I took religiously before and after my 2010 stem cell transplant, after which my Lyme disease still returned.
Other reasons? There is an unproven but logical hypothesis in the Lyme community that intermittently pausing antibiotic use while fighting the disease tricks the invading spirochetes to come out of their burrowed hiding places. And just as they restart their destructive rampage, the patient hits the now exposed bacteria with another round of antibiotics, in theory picking them off in far greater numbers. Finally, if there is incontrovertible evidence of my Lyme disease returning, it will be further ammunition to finally find proper treatment locally.
The wait was agonizing, and staring wistfully at a half-full bottle of helpful antibiotics wasn’t conducive to staying calm and carrying on. Then, five days after stopping the doxycycline, the swelling in my feet started to return, my personal canary-in-a-coal-mine alert system. Other losses followed over the coming week: constipation returned, strength diminished, assisted walking with the Rifton turned more challenging, and other symptoms that appeared to be vanquished, or at least heading that way, were reintroduced.
Those Lyme spirochetes hadn’t gone anywhere—they were just waiting for an opening. In just two weeks I was noticeably backsliding. Before symptoms turned progressively worse, and with serious concerns of my psychosis returning, we restarted the doxycycline. We needed expert help. Desperately.
“I’ve got the email of one of the top Lyme disease researchers in the U.S.,” I told my doctor. “He probably gets lots of emails from patients pleading their cases, emails he likely doesn’t have the time to answer. I thought I made my case persuasive enough not to ignore, but still no luck. Maybe he’ll listen to you?”
With 100 percent confidence that I was fighting Lyme disease and 100 percent confidence that the currently approved tests are an insensitive, inadequate, abysmal failure...I desperately needed an anthem.
A week later, my family doctor reported back. Success! The researcher devoted a block of time to discuss my case (compelling), questioned the wisdom of an antibiotic pause (why stop what’s working?), yet was noncommittal on whether it was 100% definite Lyme disease (doxycycline has anti-inflammatory properties after all, dontcha know). Then he talked about the general safety of doxycycline and how it is often used long term for acne without serious consequences, and how he has had some patients on the medication for years. As a final recommendation, he suggested that we use one of his trusted labs out of New Jersey to analyze my bloodwork to check for the signature banding that is a hallmark of Lyme disease.
Even though nothing groundbreaking materialized from the call and we were still no closer to finding the right long-term Lyme disease expert to assist with my care, Laura and I considered it a win, a critical one. My PCP had been debating how long I should stay on antibiotics given the current CDC recommendations—maybe dropping down to a half dose of doxy was in order?—but now thankfully any discussion of reducing or stopping antibiotics was off the table, at least for the moment. We had bought some more time. But how much?
Channeling FDR
Back when I discovered that I had Lyme disease, I made a conscious effort not to do what I did when I received my multiple sclerosis diagnosis: over-research, over-analyze, over-everything. At the time, I made my symptoms fit into appropriate MS boxes so that I could better accept the diagnosis. I reviewed countless cases like mine to estimate how many seasons I’d be able to snowboard before the disease swiped my abilities (three, it turned out). I investigated so many rabbit holes on the internet that at one point I found myself rewatching Watership Down hunting for clues. It was bad. And unproductive.
This time, as I familiarized myself with Lyme disease, I instead turned to recommended books to get a better understanding of the disease. Along with Mr. Douthat’s The Deep Places I purchased Conquering Lyme Disease: Science Bridges the Great Divide by Brian A. Fallon, MD and Jennifer Sotsky, MD and the award-winning book Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub.
I also signed up for newsletters from respected organizations—the International Lyme and Associated Diseases Society (ILADS), LymeDisease.org, and the Bay Area Lyme Foundation—so that I could stay abreast of any new advances. I didn’t want the distractions of conspiracy theories or talk of nefarious doctors scheming to deny care tilting my thought process. I wanted to enter the conversation naively, a virgin to the deep-seeded contentiousness of a Lyme disease diagnosis. Only with clear eyes could I make a convincing winning argument, one that I could put my full heart into.
Clear eyes, full heart, can’t lose. That would have been a perfect slogan for this book had it not already been used by Coach Taylor, with great effect, in a motivating pregame pep talk from the show Friday Night Lights. Go get ‘em, Dave, rahhh! And that is how I succumbed to a request from the Center for Lyme Action for help with their 2022 Congressional outreach campaign to get more research funding for the disease. I reasoned if Franklin Delano Roosevelt could move mountains on the Capitol from his wheelchair, so could I. Even though the deadline had passed, they still had zero volunteers to speak to the New Mexico House and Senate delegations and, being from said state and having Lyme, I had zero reasons not to step forward.
On the day of my scheduled time to talk with Congress, I intertwined CLA’s fundraising advocacy into my evolving story to rapt attention. A pair of New Mexico Senate and Representative staffers listened intently to my enormous challenges to seek treatment and my inconceivable struggles just to find an appropriate doctor after 17 years of being misdiagnosed with multiple sclerosis. And I made a point to listen back, as one staffer had her own compelling misdiagnosis story, which drove her to choose her career path (she was in the process of getting her Master’s in Public Health, or MPH). Both made a surprising offer: How can their offices help? Who should they contact? What can be done?
“Nothing, nothing right now—I have to do this myself.” As I was saying that, the image of Homer strangling Bart came to mind, only it wasn’t Homer doing the strangling and the strangle-ee wasn’t Bart. I hoped Laura would understand and not resort to assault.
I tried explaining my position first to the representatives. “I’m not going to be the only one with this problem. Not by a long shot. It’s not realistic or feasible for other misdiagnosed patients to turn to their state’s Congressional representatives to get standard treatment for a common health condition.
“If you help me, you help only me. As one of the world’s leading advocates for multiple sclerosis, I have a responsibility to help my friends who will be similarly misdiagnosed. I need a chance to make this right. And knowing what I know, you can bet I will. I can’t lose.
“Buuut on the off chance I need a wee bit of political muscle, maybe we circle back?” I mean, I’m confident, but I’m not stupid.
Ding-Dong
Days later the doorbell rang. It was just Bill again. Groundhog Day, of course. The results had come in for my latest series of Lyme disease blood tests from the trusted New Jersey laboratory.
Negative and negative to go along with all my other testing results for neuroborreliosis. Negative. Negative. Negative. Negative. Negative. Negative. Negative. Negative. Negative. Negative. Negative. Negative. Negative. Negative. Every single one of my laboratory tests looking for any confirmation of Lyme disease dating back to 2005—ELISA, Western Blot, spinal fluid markers, PCR, the entire lot, some 16 tests in all—yielded the same result: negative, even the newest round of testing done by the lab recommended by one the world’s leading experts in Lyme disease. Indeed, instead of two out of the minimum five positive bands necessary to confirm a diagnosis, I dropped to one band: #41, the most generic of bands associated with Lyme Borreliosis, the equivalent of a Journey cover band at a state fair.
How appropriate. With 100 percent confidence that I was fighting Lyme disease and 100 percent confidence that the currently approved tests are an insensitive, inadequate, abysmal failure—failing to catch myriad forms of Lyme, particularly neurological Lyme—I desperately needed an anthem. Journey’s Don’t Stop Believin’ works. That definitely works. Because boy did I ever need the encouragement.
That short antibiotic break turned into an extended setback. While my ankle swelling improved after the doxy restart, a mild bit of swelling frustratingly returned and lingered. In another crappy/not crappy development, my constipation menace reappeared. And then something strange started happening with my left index finger. Over the span of a week or two, a minor nagging pain turned severe, and the finger started to swell. Only I knew that I hadn’t injured it, and I confirmed with an X-ray that nothing was broken.
This disease refuses to leave me the hell alone and has returned trying to attack my joints. As I looked back at my medical history, all those painful niggles I had chalked up to myriad stupid sports injuries—tweaks that I never remembered tweaking—were never injuries to begin with. The ankles, the toes, the wrists, the elbows, and now the finger, all Lyme disease.
The doxycycline still was keeping things mostly at bay, but cracks were showing. I might need that Congressional aid sooner than planned. But not just yet. There were still a few other precious arrows left in my quiver. It was time to let them all fly.