Sit Down Before Reading: A Memoir by Dave Bexfield
That’s a fair question. After all, Laura and I are beyond fortunate to have the flexibility to fly anywhere in the world for expert Lyme disease care. So why in God’s name have I been so insistent on getting that care and treatment locally?
We have the available cash to bypass the expected insurance denials and absorb the myriad extra expenses associated with visits to specialists and unreimbursed medications. So why in God’s name have I been so insistent that my health insurer recognize and cover costs related to the treatment and recovery from my Lyme disease?
My case also has the full support of our Congressional representatives, the backing of a fierce advocate in my family doctor, and the unwavering support of my physical and occupational therapists who have offered to lend their voices in my case. Additionally, I have any army of supporters—through my nonprofit ActiveMSers.org—who would come to my aid if asked. So why in God’s name have I been so insistent on going it alone?
Perhaps I’m delusional, blindingly optimistic, foolishly relying on the karma boomerang to come full circle. For me, the reasoning came down to an either/or. I was either going set a step-by-step example that others who suspect they have been misdiagnosed (or undiagnosed) can follow to get care for untreated Lyme disease … or I was going expose the medical establishment’s failure to properly diagnose Lyme disease, their disdain for treating a treatable disease, and the treehouse of horrors that comes with that discrimination. I needed to exhaust every avenue, every resource that a determined patient living with Lyme disease might try to pursue to get care, whether they live down the street, in a neighboring state, across the country, or on the other side of the world. Because if I can’t manage to do this, few others will.
And one more thing. I consider my fellow adventurers at ActiveMSers genuine friends, all of us accidental travelers together on an uncharted journey through life with a disability. Except now that I’ve personally discovered that many of us—an ungodly many of us—should have never been sold passage on this frightful journey to begin with, I have a responsibility. If I’m disembarking from this most unappealing of voyages—zero stars, not recommended—the gangway can’t be restricted to a handful of the lucky or the financially capable.
I owe this unwavering group of optimistic misfits for the outpouring of support I’ve received from them over the years. I inspire them and they, in turn, inspire me. One member was so motivated by my writings that she simply had to paint one of my images, reposted in Chapter 14.
Why did I have such a great desire to paint it? It represents all the emotions surrounding heading into the unknown with a disability. Some of those feelings are fear and uncertainty, but they also include courage. I see courage in this picture. Courage to keep going forward. Courage to sometimes do it alone. Courage to continue to have hope. Hope that there is still a bright future ahead if we are willing to step into the unknown. —Shannon Williams, member of ActiveMSers
Painting by Shannon Williams (left) and original photo (right).
I had to keep trying. One of my last, best shots for competent help in the state was with its lone teaching hospital: University of New Mexico Hospital and its acclaimed School of Medicine.
The University of New Mexico’s Division of Infectious Diseases is actively engaged in researching known and novel infectious diseases and developing innovative, effective treatments and public health intervention strategies. We are a national leader in treating emerging threats with groundbreaking technology. … We provide consultative care to clinically complex patients and treat diverse pathologies. The University of New Mexico is the research and treatment epicenter of several unique disease pathologies including hantavirus and plague.
Known and novel infectious diseases. Innovative strategies. Groundbreaking technology. Complex patients. The buzzwords were there. I showed Laura my latest plan, Plan G (or H or I or J or something deeper in the alphabet—I’d stopped counting.)
“You’ve got the complex part dialed, alright,” said Laura. “But you already know their answer.”
The eventual fax to my primary care doctor, who had tried to push through mounds of red tape by labeling my case as urgent and necessary, confirmed Laura’s prognostication skills. “Appointment denied. Diagnostic tests and labs are negative for Lyme disease.”
At least I got additional confirmation. I was 100% confident in my Lyme disease diagnosis, 100% confident that the current testing for Lyme disease is an unmitigated failure, and now 100% confident that being denied even a visit with an infectious disease doctor is 100% bullshit.
This isn’t about just me. My case is merely the very tip of a massive misdiagnosis iceberg that the entire worldwide medical establishment is blindly barreling toward at full steam.
Demoralized, Not Defeated
With my health now at risk and Laura’s superhuman patience waning, lofty visions of altruism had to take a back seat. Demoralized, I had no choice but to cast a wider net and bend my local rules—it was looking more and more unlikely that I would find any success in New Mexico. I went back to the list of Lyme-literate doctors within a day’s driving distance, Phoenix, Denver, Colorado Springs. The most highly recommended MD—a Colorado doc who had persevered through his own Lyme disease diagnosis, which motivated him to start his practice—had a yearlong waiting list when I checked a few months earlier. Now? I got a different answer.
“[The doctor] is no longer adding to his waitlist, it is extensively long at this time. He is however happy to facilitate any testing. Is that something you would be interested in?”
That would be a negative. Due to the clearly debatable accuracy of traditional testing, LLMDs often turn to alternative mail-order laboratories, labs that offer Lyme disease testing using methods and techniques that have not, to date, been sanctioned by the FDA. This means they a) are not covered by health insurance and b) can run in the hundreds to thousands of dollars. Worse, after spending that money, a positive test from one of these facilities is unlikely to be recognized by most traditional medical providers anyway (“a false positive” they’ll say), rendering these tests, regardless of how accurate they may be—and they may be very accurate, there’s no way to know—moot.
A competent LLMD should decide whether treatment is appropriate based on the entirety of the medical record, including suggestive clinical symptoms and supportive patient history, without a strict requirement for a "positive" result from a test that is documented to be flawed. For that matter, any competent doctor, in particular infectious disease doctors, should follow these guidelines… because they are directly from the CDC.
When assessing a patient for Lyme disease, health care providers should consider: 1. the signs and symptoms of Lyme disease; 2. the likelihood that the patient has been exposed to infected blacklegged ticks; 3. the possibility that other illnesses may cause similar symptoms; 4. results of laboratory tests, when indicated
The “results of laboratory tests, when indicated” is last on this list for consideration. Yet to get an appointment with most IDs to be evaluated for Lyme disease—even if you’ve got a swollen knee the size of New Jersey and such a huge bullseye rash that venturing within 200 yards of an archery range would put your life at risk—it’s the only bullet point that matters to them. No positive test, no appointment, don’t let the door hit you in the ass. That would, of course, be followed with an ironic LOL, as these Lyme-negative patients would never see such a specialist in a clinic, so getting hit by any door in the posterior would be an impossibility.
With nearby Lyme resources scarce or overwhelmed, getting properly treated meant heading into tick country, to the Northeast. I hadn’t been on a plane in three years, and with a complete lack of accessible toilet facilities on domestic flights—a gaping hole in the ADA that I’d fight like hell to get fixed if I didn’t have my hands full with other, slightly more pressing issues—jetting cross country without bathroom access felt like cliff diving into a kiddie pool. Theoretically doable, but you can only depend so much on a pair of Depends. If you go brown, you go down. (To better comprehend the challenge, imagine the entirely plausible scenario of flying Spirit Airlines and being told—as a money saving measure—that the airline had removed all lavatories for additional seating, and would instead provide each passenger with a nose clip and a pair of nappies upon boarding; extra pairs offered for a modest fee in the event of soilage.)
Begrudgingly I sent a feeler to one of the East Coast doctors routinely recommended by friends, a well-known author and specialist in the Lyme disease community. Unfortunately, it was the same story: he was no longer accepting patients. But for $3K upfront—half down when you schedule an appointment—I could sign up to meet (an additional $350-$550 per appointment) with his nurse practitioner. Once, of course, a spot opens up on that waiting list.
I sent one more final, desperate appeal to the nearby Colorado doctor, the former Lyme sufferer who had been recommended by multiple friends. Maybe he would make an exception for such an unusual case? I’ll spare you my groveling, but it included this sentence…. “I hate to pull a Princess Leia to Obi-Wan Kenobi plea out of my bag, but in terms of experienced and respected Lyme docs in the Southwest, you’re my only hope.” Yeah, no. All quiet on the Western front.
My Final Arrows
I have Lyme disease. And unbelievably I could not get treatment for my Lyme disease. Not from a local infectious disease doctor. Not from a local neurologist. Not from a local urologist. Not from the lone teaching hospital. Not from a top recommended regional specialist. Not from a top nationally recognized specialist. With options evaporating like virga on an Albuquerque summer night, it was time to go full Yoda. There was no more trying. I had to do. I went back to the one doctor I knew with the connections to make it happen.
Date: May 24, 2022
Subject: An Improbable Proposal
Doctor, it’s been six months since we last spoke, and as my neurologist of 17 years, I’d like to update you on my health. I have been clinically diagnosed with Lyme encephalomyelitis, an exceedingly rare form of the disease that mimics multiple sclerosis in virtually every aspect: CSF abnormalities, brain and spinal lesions, relapses, progression, and symptoms. Worse, this type of Lyme evades standard tests for the disease, so if laboratory and clinical clues are missed or overlooked at diagnosis (in my case, an elevated white count in my CSF, a swollen knee, and heart irregularities), it’s all but undetectable.
I’ve done lots of soul searching in these past months as I expect you have. But what’s done is done—we can’t change the past. But we can change the future. And that leads me to the most unlikely of proposals to you and the entire UNM Health team of experts, from infectious disease specialists to physical therapists.
Help me. Treat me. Rehabilitate me.
I’ve been on doxycycline since Nov. 6, 2021, and the changes initially were dramatic. See attached for my 3-month progress report and case summary. Since that time, however, my gains have slowed, and the antibiotic is now primarily responsible for keeping my disease at bay. There’s a reason for that. Doxycycline is minimally effective at treating Lyme encephalomyelitis; the recommended “medically necessary” treatment—by both experts and health insurers—is 28 days of IV ceftriaxone (2 grams daily), as it crosses the blood-brain barrier, essential for neurologic cases of Lyme. Again, see attached for more.
With the right care, I am confident my health will be restored, perhaps fully. And UNMH is the only facility in the state remotely equipped to handle my case. I understand my recovery will take time, require consultation with Lyme disease experts, and perhaps necessitate outreach to out-of-state Lyme-literate doctors (LLMDs) familiar with treating complicated cases if the single dose of ceftriaxone is insufficient. But traveling out-of-state to self-pay for care—care that should be fully covered by in-state health insurers—is an untenable answer, as there no doubt will be others who will follow my path, only without the resources—financial or otherwise—to do so.
I know this because, in the process of my own Lyme disease discovery, I believe I have accidentally uncovered the answer to one of MS’s most vexing puzzles, one that ultimately could change the trajectory worldwide of how MS is diagnosed. One that will define my advocacy and your legacy as a researcher. I look forward to sharing my findings.
Please let me know your thoughts. I hope we have one more good ride left together on this journey of a 1,000 lifetimes.
After a week and a half, my neurologist responded, saying that he would “answer in more detail soon.” Soon, apparently, is relative.
He never wrote back. Was that his decision, or the decision of fearful lawyers, anxious policymakers, or terrified administration bigwigs worried about the potential liability of any association or admission to a misdiagnosis? Unbeknownst to any of them: It didn’t matter. This isn’t about just me. My case is merely the very tip of a massive misdiagnosis iceberg that the entire worldwide medical establishment is blindly barreling toward at full steam.
Although I was running out of arrows, I still had a particularly special one in my quiver, the rarest of arrows. It was time I used it. I steadied my bow. And took aim.
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Chapter 21: An Improbable Proposal