Sit Down Before Reading: A Memoir by Dave Bexfield
My wife Laura is a brilliant scientist. Not kind of brilliant, brilliant-brilliant. And I know she is going to forcibly push back on this descriptor and hard—she also has a stupid level of modesty—but I’m the author of this memoir, and I’m putting my numb, weak, now newly swollen foot down. Her specialty is water, our planet’s most precious resource, and for the past 30 years she has worked side-by-side with some of the world’s most acclaimed groundwater specialists, producing groundbreaking research. But when I got diagnosed in 2006 with multiple sclerosis, she was prepared to shelve her rocketing career in hydrology to enter medicine, study neurology, and cure her husband (think Lorenzo’s Oil). She’s that kind of woman.
To hell with that, I said. Society had more to gain from her current work for the public good. With drought, drying rivers, and vanishing reservoirs reaching a crisis point—scientists even reported in late June of 2023 that pumping groundwater for drinking and irrigation has caused a shift in the Earth’s tilt—her research is paramount. (Plus, more selfishly and as a practical matter, she was and remains the breadwinner in the family. And going back to school for a decade to earn her MD so that she could devote endless hours in research laboratories that might not produce a cured Dave for years, if ever, was too much of an uncertain Hail Mary. Not only that, but then as a poorly paid writer, I’d have had to get a real job. Ick.)
One might say this all worked out anyway, as I never had MS to begin with. But her expertise as a scientist and researcher has proven invaluable in helping me write this memoir and distill complex topics into understandable prose. She’s done so much more, of course, from dutifully trying to poke holes in my arguments—which she wishes to point out she cannot thoroughly research and still has a hard time always fully buying—to, well, feeding me daily. And, of course, doing all the hard math. (Fun fact: when Einstein won his Nobel Prize for his theory of relativity, his first wife, Mileva Marić, purportedly did the hard math, too!)
When I showed Laura the current treatment landscape for neurological Lyme disease that has been left untreated for years, even decades, I was prepared with the following descriptors. Barren. Desolate. Tumbleweeds on a dusty prairie. A megadrought fueled not by climate change, but by decades of missed signs, flawed science, and hubris. Yet even Chile’s Atacama Desert, the driest place on earth, gets sporadic rainfall. And the beauty of a live medical memoir unfolding in real time is that the latest, up-to-date research can be included as it's released. Hope, it appears, has bloomed from some unexpected recent precipitation.
In a June 2023 study, French researchers unearthed 16 antibiotic treatment studies for neurological Lyme in order to plumb the depths for valuable data to help with this underserved patient population, a population that is set to explode like Pharoah cicadas—only instead of every 17 years, an unthinkable number are going to drop all at once by the conclusion of Sit Down Before Reading. And within those 16 studies, they identified 15 that had a late form of neuroborreliosis. As in 15 patients. Total. These researchers stated the obvious: “scientific evaluation impossible.”
Past research has looked at other forms of Lyme—for example, encephalopathy—and concluded nothing remotely conclusive. One study crowed that 30 days of IV ceftriaxone is often enough to do the trick, even though recovery took months to years. Meanwhile, another oft-cited study looked specifically at those who failed this initial treatment, tacked on an additional 10 weeks, and found, at best, middling, fleeting success. Translation: they have no effing clue.
Au contraire! Hold my croissant, macaron, and wee cup of espresso, says the latest research out of France. These scientists tried a new tact, treating both advanced neurological Lyme and its coinfections (Babesia, Anaplasma, and Bartonella) repeatedly with IV antibiotics, oral antibiotics, and antiparasitics. If initial treatment with ceftriaxone was unsuccessful, multiple 35-day cycles were repeated (mean 4) interspersed with oral doxycycline, azithromycin, and often rifampicin.
How advanced was their disease? Of the ten patients studied, five used canes and four others relied on wheelchairs, meaning EDSS disability scores of 6.0 and above (the highest was 8.5, essentially restricted to bed). All had “intractable or severe motor deficits.” Based on past research, the odds of success and drinking celebratory genuine French champagne appeared daunting. But based on the results, the only question remaining was the brand of champagne. Krug, Tattinger, Dom Perignon?
Seven patients out of 10 (70%) showed complete remission after a mean active treatment duration of 20.1 + 6.6 months, with a mean number of 4 ceftriaxone cycles. Three patients showed an initial remission but suffered secondary antibiotic/antiparasitic-resistant motor recurrences. Among the nine patients with Borrelia serologic positivity, treatments obtained complete remission in seven cases (77%). The findings of this ten-case series suggest the usefulness of long-term antibiotic/antiparasitic treatments in patients with severe late tick-borne neurological deficits with highly significant elements of tick-borne involvement.
I’m sitting on an EDSS of 7.5, restricted to a wheelchair full time. Complete remission would mean an EDSS of 0. An EDSS of zero would mean I could finally stand to pull up my own shorts after using the toilet. Shower without a chair and needing help to turn on the water. Visit Mom sans wheelchair accessible van and help to transfer between seats. Wear pants indoors instead of scrambling for a blanket when there is a knock on the door. Go grocery shopping, solo, to buy flowers for my deserving wife. And a card. And a bottle of wine. And juggle it all in my arms as I stroll back to the car to drive home, before sweeping up Laura in my arms and carrying her into the bedroom, where I would delicately remove her—and I am now being informed by my editor/wife that I have painted enough of a picture.
The treatment isn’t a slam dunk. Some remained sick. Those who were most disabled failed to see benefit despite as many as eight cycles of IV antibiotics. The trial participants had been sick for a relatively short amount of time, most under 3 years (7 years maximum), and they were generally young. While there were minimal side effects or adverse events reported in this trial, repeated antibiotic use carries risk, particularly C. diff and potentially future resistance. But the benefits of success were overwhelming in the majority of those treated, and the length of treatment was deemed critical. “The objective partial improvements in limb deficits observed after each cycle—especially ceftriaxone—explain why repeated cycles were necessary to clear the deficit completely in the successful cases.”
And then there's this dumbfounding rub. “None of the 10 patients would have been accepted in a protocol using CSF criteria of late neuroborreliosis,” warned the researchers, who pointed to other case studies featuring patients lacking antibodies to Borrelia—patients who subsequently were cured after extensive antibiotics. Only US blood tests, their own flaws documented extensively in this memoir, detected the infection. None of the patients in the French study should have ever been treated, much less even accepted into this clinical trial, based on the standard European CSF criteria of late Lyme. According to their criteria, none had tickborne disease. None. And today 70% are cured.
The researchers concluded with a powerful message. “What price-tag can one put on the benefit of the return of an adult person to complete motor autonomy and to work? Moreover, on that of a teenager to normal life? These human advantages are enormous.” They then, prophetically, made this observation. “From a strictly economic point of view, the social cost of permanent disabled persons with late severe tick-borne neurological involvement may be compared with the cost of disabled patients with progressive multiple sclerosis, who have comparable high Kurtzke disability scores. … Final complete remission, chiefly when enabling a return to work, represents an enormous economic benefit.”
To grasp the magnitude of this impact in financial terms alone— just within the MS universe, and then just within the US—a recent large study sponsored by the National MS Society found that “the estimated total economic burden of MS in 2019 was $85.4 billion, including direct medical costs of $63.3 billion and an additional nearly $21.0 billion in indirect costs and $1.1 billion in nonmedical costs and cost of health care services not covered by insurance.” Medical care alone for the average patient with MS in the US costs $65,612 per year, which then jumps up another $20,000 if indirect and nonmedical costs are included, near $90,000 altogether, annually.
Now let’s compare that to the estimated financial impact of Lyme disease. The CDC ominously warned in 2022 that societal costs for the typical Lyme disease patient were high, too. How onerous was their estimate? “Participants had a mean patient cost of ≈$1,200 (median $240) and a mean societal cost of ≈$2,000 (median $700).” They went on to say that “the annual, aggregate cost of diagnosed Lyme disease could be $345–968 million (2016 US dollars) to US society. Our findings emphasize the importance of effective prevention and early diagnosis to reduce illness and associated costs. These results can be used in cost-effectiveness analyses of current and future prevention methods, such as a vaccine.” My goodness, the CDC must have purchased the same rose-tinted glasses those researchers bought when evaluating the abnormally high number of cases of MS in Puerto Rico. There aren’t enough ROFL emojis to convey the ludicrousness of this estimate and the hollow urgency of developing a vaccine.
But enough CDC bashing and lamentations about wasted money. Another exciting Lyme treatment study dropped in September of 2023 by popular Lyme doctor Richard Horowitz. The non-randomized study examined 25 patients with chronic Lyme disease and related coinfections who were prescribed double-dose dapsone combination therapy (DDDCT). We’ll let the doc take it from here.
This is, to our knowledge, the first effective, short-term oral, generic protocol for treating CLD/PTLDS and associated co-infections, including Bartonella. We found that 8 weeks of DDDCT followed by a 4-day pulse of high-dose DDCT was sufficient to put patients with CLD/PTLDS into long-term remission if they did not have evidence of active co-infections, i.e., Babesia and Bartonella. Patients who were co-infected with Bartonella were sicker, with more neuropsychiatric symptoms, immune deficiency, and increased autonomic and peripheral neuropathy. They required 8 weeks of DDDCT followed by a 6–7-day pulse of HDDDCT to improve and/or go into full remission.
A full 100% of his patients experienced remission, but those results must be tempered until a randomized, placebo-controlled trial can be completed, Dr. Horowitz acknowledged. Regardless, this sprouting of hope in the long Lyme treatment desert portends to be a future oasis for sufferers of the tickborne illness.
Aside from essential antibiotics, are there any other promising yet under-the-radar add-on treatments available for patients suffering from Lyme disease? The answer, after shaking the Magic 8 Ball, is: Signs point to yes. And you’d never guess where to find them. In the existing research… for MS. Since millions upon millions have been spent on MS trials spanning a century, scattered among the middling, inconsistent clinical trials lurk potential nuggets of therapeutic relief waiting to be mined. Approaching even uninspiring trials from a new perspective, prospectors could unearth unrealized opportunities.
There are almost certainly treatments lurking in the scrap heap of discarded MS trials that could get new oxygen as potential options for Lyme, from the alternative therapy low-dose naltrexone to the procedure that addresses the much-maligned chronic cerebrospinal venous insufficiency (CCSVI). Even my anecdotal success with Viagra deserves closer scrutiny. But there is another intriguing option that has produced tantalizing and tangible results in the research of both diseases: intravenous immunoglobulin, also known as IVIg. Collected from the blood plasma of thousands of pooled donors and then purified, the “biological agent [is] used to manage various immunodeficiency states and a plethora of other conditions, including autoimmune, infectious, and inflammatory states. The ultimate goal of this therapy is to normalize a compromised immune system.”
Lyme disease expert and leading researcher Dr. Brian Fallon explains in an interview with the nonprofit Lyme Connection why IVIg holds real potential as a treatment option for those suffering from chronic Lyme disease.
[IVIg] therapy modulates the immune response, quieting it down, and has a specific role in antibody-mediated diseases. People who have autoimmune neuropathies - for any reason - usually have those neuropathies because there are antibodies being generated that were triggered by something, be it another infection or injury. When those antibodies are triggered, they start to mistakenly attack the neural tissue, so one way to improve the health of those people with autoimmune neuropathies is through intravenous gamma globulin therapy (IVIG). That’s a well-recognized treatment that neurologists use for post-infection, immune-mediated neuropathies.
Alas, “potential” doesn’t mean jack squat without a bit of therapeutic meat on the evidence bone. Treating numbness, muscle strength, function, and even neuropsychosis, there are case reports in the medical literature where the treatment has made a significant impact in the health of patients suffering from Lyme and related illnesses—a 68-year old retired railway employee diagnosed with the tickborne disease, an 11-year-old boy with acute disseminated encephalomyelitis, a 58-year-old man with babesia and demyelinating polyneuropathy associated with Lyme, a 73-year-old woman who was diagnosed with both Lyme and then Guillain-Barre syndrome—yet the approach has been routinely and aggressively poo-pooed by infectious disease researchers.
Instead of relying on the “expert recommendations” of these researchers, considering that they may be at best misguided, at worst flat-out wrong, let’s investigate IVIg instead through the prism of multiple sclerosis research. IVIg’s effectiveness in the demyelinating disease has been decidedly uneven, appearing to help only a subset of patients. A 2016 meta study aimed to analyze this success and identified placebo-controlled studies where a proportion of patients improved in disability. Even so, researchers stated that despite confirming that “intravenous immunoglobulin has a beneficial effect on the annual relapse rate, proportion of relapse-free patients, on the proportion of patients deteriorated and improved, and on clinical disability in patients with relapsing–remitting MS,” they concluded that “the evidence… was not sufficient, and more accurate assessment of the patients is needed.” Other research confirms IVIg’s potential… and its inconsistency. “While many autoinflammatory diseases have proved responsive to IVIg therapy, the outcome of these MS trials remains somewhat of a conundrum,” said a French study.
I found something unusual in my research. Something decidedly off.
But sometimes amid this type of confusion, all it takes is a striking case study to get some clarity, the kind of clarity that suggests IVIg might do diddly to help MS yet be a game-changer for Lyme. A female patient in the United Kingdom with relapse remitting multiple sclerosis “was diagnosed with Ehlers-Danlos syndrome (EDS) and Muir-Torre syndrome (MTS) soon after the diagnosis of active RRMS was made,” all three conditions that Lyme disease mimics with aplomb. As identified and explained in Chapter 35: Red Flags, this is classic disease stacking—when physicians start adding often rare diagnoses to match symptoms when a single culprit, Lyme disease, seems far more probable. What happened next was fortuitous. The trio of coexisting conditions “precluded the use of available disease-modifying treatments,” and the patient was instead treated with IVIg monthly and then bi-monthly. It worked remarkably well considering the traditional severity of her disease trifecta, as she experienced only a “single mild relapse” over the next ten years.
Her good fortune would run out, however. The problem with IVIg, particularly in Europe, is that it is expensive and extremely limited, given that plasma donors are not compensated with cash as they are in the United States. It’s rarely used, period. The patient was pulled off IVIg and started on another drug: interferon-beta. As discussed in detail in previous chapters, interferon-beta is often gasoline for Lyme disease; I went from walking to walker in fewer than three months when I tried a course. Her experiment with the same interferon treatment was likewise quickly aborted after it was “followed by significant relapses.” The researchers left readers of the 2020 case study with the hope that maybe she would be able to resume IVIg when availability improved.
Hope. Like desperately needed rainfall in parched lands, the promise of relief feels as close as bulging thunderclouds that refuse to cry. Less than three months after my extended course of IV antibiotics, I needed those tears to fall. My feet—my canary in a coal mine for active Lyme disease—were once again swollen to the size of small melons, plump and puffy, as my ankles had vanished like a magician’s dove. After more than a year of stability, I appear to be backsliding. And my wrist and forearm. Did I hurt it again exercising? I'm afraid I know the answer. But I don't want to admit it yet.
My disease is back. And angry.
I am disappointed, but I’m not distraught. I know the enemy. Although I might not have all the answers today, I also know the beast can be contained. It might not be extended courses of IV antibiotics or IVIg—besides, it’s unlikely my health insurer would support such forays—but I am confident the answer is out there. Perhaps Dr. Horowitz is on the right track, or another (ideally convenient and affordable) Lyme treatment will rise to the top. I’ll eventually find it.
Huh. It looks like I found something else, though… something unusual in my research. Something decidedly off. There are too many errant strings in the logic surrounding autoimmune diseases. Just too many. So I tugged at a loose one to see where it led. Then another. Then another.
And then....
And then everything began to unravel.
