Sit Down Before Reading, A Memoir by Dave Bexfield
The concluding chapter of Sit Down Before Reading has been broken into five parts (1-5).
Part 4
Fearless
Two years ago, sitting across the desk from Dr. Deadpan, the veteran Lyme specialist from New York issued a final set of instructions at the conclusion of our 2-hour appointment. I was to take antibiotics to treat my Lyme disease, other medication to treat suspected coinfections from my tick bite, and I was instructed to avoid stress, exercise frequently, and get my Zzzs. And one more thing. “Unlike a lot of Lyme doctors, I don’t have a special diet protocol you need to follow,” he said, as I let out an audible sigh of relief. Like me, he must think diets are a fool’s game. Then he kept talking. “Just no alcohol, skip desserts, and limit junk food.”
Ba-dum ching! Good one, Dr. C, as in Dr. Daniel Cameron, one of the nation’s leading Lyme specialists. His deadpan delivery always seems so serious, but by that point I was catching on to his twisted humor.
“I’m being serious.”
That was decidedly not funny, I decided, as I rehashed his advice with Laura while enjoying a beverage appropriate for the environs and, apparently, for a swan song. A rye whiskey Manhattan with a Luxardo cherry in the shadow of New York City. For the next few months, I followed my doctor’s advice. Mostly. I cut out the booze, limited the sweets to small servings, and trimmed my obsession with Cheetos. I still enjoyed my daily chips and salsa because a) I reasoned the tomatoes made it somewhat healthy and b) I live in New Mexico. When I shockingly/not shockingly didn’t see noticeable improvements, naughtiness gradually seeped back into my diet.
It was never, ever going to work. The role of a Lyme Starvation Diet, or LSD for short, is straightforward: it must successfully stelm—a work-safe acronym for “starve those evil little motherfuckers.” I can now see catastrophic flaws to my original “dieting” approach, which extend to the unfortunate abbreviation of the Lyme Starvation Diet, which makes it sound like I am promoting the use of hallucinogenic illicit drugs to fight the bacterial infection. Oops.
Right away, I realized that any time I broke or “cheated” on my diet, whether intentional or not, I was feeding the beast. If you are trying to starve something into submission, making it weaker and weaker with every passing day, gifting it a carb-heavy feast of pizza and a pint of pilsner might reset the starvation clock. Those newly sated spirochetes, feet up in their LaZ-Boy recliners, puffing on celebratory cigars and regaining strength, know when they’ve gotten a reprieve. Worse, I may have provided enough juice for them to replicate.
Then there was the whole patience issue. Other than six-year-olds going on “lengthy” 4-hour hunger strikes to protest unappetizing servings of broccoli rations, this starve-them-out endeavor was going to take, at a minimum, many months or longer, not until nighty night. If I had indeed managed to get those buggers stranded on a desert island like the kind you see in New Yorker cartoons, it would have been for naught anyway as I accidently threw my spirochetes a life ring by stopping my admittedly insufficient diet too soon.
But the sneaky bugaboo almost certain to derail even the most ardent and exacting future LSD followers, the one we all want to pretend doesn’t exist? The Bloodhound Gang and their song “The Bad Touch” exposes the issue with the tune’s chorus: “You and me, baby, ain't nothin' but mammals, So let's do it like they do on the Discovery Channel.” (Huge bonus points if you had Bloodhound Gang on your SDBR bingo card. And apologies centuries from now to young med students—with the memoir required reading as part of their education—struggling to comprehend such obtuse pop-culture references from the 1990s.)
Sex. I’ll let Wendy, a member of ActiveMSers, elucidate. She’s a scientist from the UK who got Lyme disease in 1985, which for her went undiagnosed for nearly 15 years. She finally received treatment, a combination of antibiotics that put the disease into remission. But after a decade, her Lyme returned. “In 2016 a random neurologist gave me a diagnosis of MS and that is the end of that — no further discussion around Lyme disease is permitted,” she writes. “Other than my own obstinate insistence that my medical notes have a header stating that, ‘The patient believes she has Lyme disease.’”
After reading the most recent chapters of this memoir, she rushed to introduce me to the theories of Dr. Bill Harvey, who passed in 2011, describing him as “a free-thinking NASA scientist, with Lyme disease, [who] was given the time, resources, and absolute freedom to consider the disease, without the usual disabling preconceptions.” She heard him speak in 2004 and was so taken aback that she saved the transcript. His ominous findings mirror mine. Here’s a small portion.
I think sexual transfer is going on big time. I have seen 3 patients who within a few months of getting ill, their spouse got ill too. I used to get people really well and not think about the spouse. Then they'd start to get sick again and I'd treat them again, and this would go on 2 or 3 times. So, I started testing the spouses – none of them were negative. So now if I treat the spouse too, it seems to block transfer. And I won't name all the other diseases that I think are associated with b=Borreliosis. If it's being transferred effectively (gestationally and sexually), I think it's only 40 or 50 years till the whole of humanity is covered! But not everyone may have symptoms. That's not to say they won't develop them later.
No wonder many of those who tightly adhere to Lyme treatment regimens can’t get rid of the bacteria. Anyone infected with Lyme is destined to pass it back and forth with their sexual partners, confirming past research that postulated that Lyme disease can spread sexually. We’re screwed in so many ways. If someone is diagnosed with MS and her husband suffers a stroke and signs of dementia, that’s not a coincidence, that’s Lyme. A partner of someone with a chronic disease tied to our favorite bacterial infection comes down with postural orthostatic tachycardia syndrome (POTS)—that’s not coincidence, that’s Lyme. And, critically, to get out of this infinite loop, both parties must get treated or, if one refuses, use one of two forms of birth control: condoms or abstinence.
Sorry. This tosses a mammoth wrench of suckage into previously worry-free bedroom romps of exclusive couples and completely upends dating and casual hookups. Affairs, already a minefield, turn into nuclear accidents waiting to happen. Since symptoms of Lyme might not surface for years or even decades, you could host the parasite through a multitude of relationships, not discovering your infection until a surprise cancer diagnosis in your early 60s.
I can almost hear people furiously tapping on their phones to remove Tinder and Grindr. There is no test on the planet in existence today that can accurately detect the presence of Lyme disease. Taking doxycycline within 72 hours after condomless sex may prevent transmission, but it’s a crapshoot even with other sexually transmitted infections, says current research. Given the rampant spread of Lyme, it’s probably best to assume that your partner is infected and to plan accordingly.
Yes, this is next level bad. But it’s not hopeless.
Collectively, as we struggle to grapple with the unthinkable reality of a smothering Lyme disease epidemic, I’ll remind you what I quoted FDR saying 15 chapters ago. “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’… You must do the thing you think you cannot do.”
While writing this final chapter, a reader reminded me of what I promised back in Chapter 39: an “off ramp” to this historic debacle. I keep my promises. It’s time to downshift, slow down, and put on your blinkers.
You’ve looked fear in the face, lived through the horror. Now I’d like to invite you to join me and do the thing you thought you could not do.
Heal.
Healing
I aim to personally fulfill a prophecy I originally made more than 15 years ago, one that I have been regularly reminding my followers of on ActiveMSers.org practically since I launched the website in the spring of 2006 and embarked on a lifelong mission of health advocacy. That MS is BS.
When I first coined the term, I certainly never intended it to be taken literally. Maybe the act of getting diagnosed with multiple sclerosis temporarily felt like a load of bullshit, but I never imagined that the disease wasn’t real. Instead, I wanted a quick, memorable phrase that might galvanize those afflicted with MS and stir hope for a better future at a time when hope, particularly for the newly diagnosed, felt at best, hollow, at worst, nonexistent. Fully spelled out, the BS needed to convey real promise, that hope lurked much closer than realized, perhaps even around the next corner.
I needed to brainstorm, so I brainstormed in my favorite office with a favorite friend: on a ski lift with Scott. Before we slid off Santa Fe Ski Area’s Tesuque chair, 12,000 feet above sea level in the Sangre de Cristo Mountains to scream down a run appropriately named Parachute, we had our answer: Multiple Sclerosis is Beatable Someday. And if anyone asked me to clarify “someday,” I’d always answer, “Someday soon.” My introductory advice to all new members of ActiveMSers is full of borderline-obnoxious Ted Lasso positivity....
I built this not-for-profit website to help motivate and inspire others with the disease to stay active physically, intellectually, and socially. Why is that so dang important? See, I have a theory about this disease: MS is BS--multiple sclerosis is beatable someday. And when that day comes, and it will, I want you to be armed with the healthiest body and mind possible.
I’ve carried this message of hope with me to all my volunteer endeavors, including my efforts at iConquerMS, a research initiative that collects and analyzes large amounts of health data from patients with multiple sclerosis to look for patterns. I helped develop their tagline to encourage people with MS to participate in the project: Be Part of the Cure. Unbelievably, I never expected myself to literally be part of the cure, much less such an integral part. And I certainly never anticipated that, unbelievably, MS really is BS. That MS—or at least what was thought to be MS—really is beatable someday.
Once I landed on the diet/Lyme connection, I realized that “soon” could be real, real soon. So, I embarked on, with typical Dave-esque reckless abandon and unbridled optimism, a fraught style of research inspired in part by Dr. Marshall, and in part by desperation. Like the frustrated Australian doctor who unwisely infected himself, it was time to prove myself right and experiment… on myself, with a novel diet, an LSD.
It didn’t go exactly as planned.
Now, I strongly discourage self-experimentation, both in matters of human health and in testing the spiciness level of hot sauces that feature either toilets or flames on the label (or both, yikes). Too many things could go wrong that may or may not involve unanticipated (and potentially urgent) trips to the bathroom. But like early cross-country pioneers and Chad, that kid who unwisely succumbed to a dare to eat a raw chile pepper in fourth grade, some hazards are inevitable and unavoidable.
The anchor to treat a bacterial infection caused by Lyme would appear to be antibiotics that target its spirochetes, and they do that in two ways, according to the experts at Johns Hopkins. “Antibiotics go into the bacteria preferentially and either stop the multiplication of the bacteria (doxycycline) or disrupt the cell wall of the bacteria and kill the bacteria (penicillins).” There are a number of antibiotics that perform these tasks, but there isn’t a definitive answer at this point as to what route is best. Regardless, a pulsing regimen would appear to hold the most promise based on recent research discussed in past chapters. Lyme-literate MDs often employ these same techniques, pulsing antibiotics off and on in two- or three-week cycles while simultaneously treating babesia and other related infections. While this lengthens the recovery time, full remission using primarily antibiotics is reportedly attainable within two years in even challenging cases. There also are other medications traditionally used to treat Lyme, but I’ve opted to box those out for the moment. Given that many successful disease dieters never took any of these drugs to begin with, they may not even be a requirement, acting just as an accelerant to recovery.
The same seems to be true for the semaglutide class of drugs. A bonus, but not necessarily required, which is a good thing. With skinny me not a candidate for the new class of weight-loss drugs that can cost over $1,000 a month without insurance assistance, Ozempic and Mounjaro were nonstarters. Although these diet medications could alleviate the need to closely monitor carbohydrates in what I ate, with cost and availability being massive issues, I viewed these options as untenable for general use, considering the worldwide breadth of Lyme disease, particularly in financially challenged third-world countries. One day, reworked versions of these medications—with a focus on starving out spirochetes (by denying them manganese?) rather than shedding pounds—could be the answer, especially if sold at affordable prices. But that day is not today.
With the shiny new diet drugs off the table, a grizzled generic version deserves a second, closer look. Could the addition of the inexpensive and common blood-sugar-lowering drug metformin be a secret weapon? Harvard doctors have noted that it has been called a “wonder drug”, as its “benefits may extend far beyond diabetes.” Metformin is currently being investigated for its potential role in lowering the risk of cancers (e.g., breast, prostate and colon), reducing dementia and stroke, and even slowing aging. Acclaimed multiple sclerosis researcher Dr. Gavin Giovannoni notes that it also “is being explored as a potential remyelination therapy in MS” and that “many biohackers take metformin.” Based on past trials in autoimmune disease, I know metformin isn’t the final answer, but it checks enough boxes and continues to show promise as a helpful treatment addition. New research, still in preprint, purports to be “the first preclinical study to demonstrate that reducing systemic glucose by combining a ketogenic diet and metformin significantly inhibits tumor proliferation and increases overall survival.” In essence, it helps turbocharge carb-light diets.
An initial plan for my LSD began to take shape. A blend of common, affordable pharmaceuticals and straightforward diets seemed to be a logical starting point. It was going to be a challenge.
Embarking on an LSD
The average American consumes 248 grams of carbs daily. For my low-carb diet to be successful, I had to ideally trim that to fewer than 50—the equivalent of two measly slices of bread. Then it got harder. These diets are thought to be generally safe, but hair-on-fire warnings of potential danger on the internet made it sound like I was about to embark on a meth-fueled binge capped with fentanyl chasers.
White bread, made and photographed by ElinorD; 12 June 2007. Wikipedia
“The typical keto diet is a disease-promoting disaster,” said Lee Crosby, RD, nutrition education program manager in a press release for the Physicians Committee for Responsible Medicine. “Loading up on red meat, processed meat, and saturated fat and restricting carbohydrate-rich vegetables, fruits, legumes, and whole grains is a recipe for bad health.” Harvard doctors are conflicted, warning that “a ketogenic diet has numerous risks. Top of the list: it's high in saturated fat … so make sure that you talk to a doctor and a registered dietitian before ever attempting a ketogenic diet.”
Okay, enough hyperbole. There are risks associated with any diet, so let’s put this in all caps. BEFORE STARTING ANY DIET, IT IS STRONGLY RECOMMENDED THAT YOU GET PROFESSIONAL MEDICAL ADVICE AND GUIDANCE. For those with diabetes or chronic kidney disease—or those who are pregnant or nursing—this should be considered mandatory, as a ketogenic diet could stress the body in dangerous ways without appropriate monitoring, from critically low blood sugar to kidney stones. Nutritional deficiencies, constipation, dehydration, and bad breath could be unfortunate side effects. Rarely, ketoacidosis could occur, a dangerous buildup of too much acid in the bloodstream most associated with diabetes. Symptoms include “excessive thirst, frequent urination, nausea and vomiting, stomach pain, weakness or fatigue, shortness of breath, fruity-scented breath, and confusion.” UNTREATED, IT COULD LEAD TO DEATH. In other words, be sure you are being watched by a doctor or dietician while dieting. But much of the concern centers on flawed and thoroughly debunked presumptions of health risk involving meats and fats, much like the misconceptions involving MSG that I belly-ached about back in Chapter 22. It’s hard to rewire brains.
Despite these misgivings, ketogenic and fasting diets are recommended by those who know how to separate the science from the BS. Dr. Giovannoni, the MS researcher soon to gain additional fame for once publishing an essay of mine about the importance of exercise combined with a farcical debate about what to call potato-based snacks (chips or crisps?), feels intermittent fasting and ketogenic diets “may induce a metabolic pathway that is known to be disease-modifying in MS.” Indeed, he’s bullish—“Could diet be the new add-on DMT?” was the topic of a 2020 blog post—and has been noticeably dismissive about low-fat diets. “Contrary to what many nutritionists say, from an evolutionary perspective a high-fat high-protein diet is very healthy [while] a continuous high-carbohydrate diet is unnatural from an evolutionary perspective and is one of the reasons behind our obesity epidemic.”
Is one diet more effective than the other? That’s unclear, but our friend Dr. Beaber was kind enough to do a video to discuss the evidence, and fasting more than holds its own, perhaps even besting keto as a disease modifier. Combining the two may even enhance their effectiveness. I know I am thisclose to the elixir for Lyme (in Easter egg hunting parlance, I am so close that I’d be “burning up”), but without time-consuming, randomized trials conducted by professional medical researchers, at this point I can get no closer than promising anecdotes, including one in particular. Mine.
What would my primary care doctor, who trusted me enough to prescribe doxycycline two-and-a-half years earlier, say about my plan? To my relief, he was unfazed about such diets as well and was all aboard. He, too, had heard the rumblings of carbs and blood sugar. Let’s try it, he agreed, and right after my appointment, Laura and I found ourselves at a Japanese restaurant for our first test. They eat healthily, I reasoned at the time… and before I had discovered the inherent flaws of Japanese diets.
Tempura, udon noodles, rice bowls. A carbohydrate fiesta, er, matsuri (祭り). An epic fail. This was going to be harder than I thought.
I started so many Google searches with, “Is [food item] keto” that it just began to autocomplete my every query with the diet. Generally, animal proteins are great (seafood, meat and poultry, eggs). Dairy and dairy alternatives are usually good as long as you watch for sugars and carbs (most cheese, unsweetened Greek yogurt, cream and half-and-half, certain nondairy milks). Vegetables are a mixed bag. Leafy greens are excellent (salad greens, cooking greens, and herbs), summer squashes are a-okay (yellow squash, zucchini), high-fat veggies are awesome (olives, avocados), non-starchy are fine (tomatoes, asparagus, mushrooms, etc.), but steer clear of potatoes and corn, and enjoy onions in moderation. Most nuts, seeds, and berries are safe, but other fruits (pineapple, bananas, apples) can pack in the carbs. When in doubt, check the nutrition facts on the label—dark, dark chocolate and butter are heavenly while sodas and most fruit juice fill the river Styx on your float to Hades.
Those are the basics of a keto diet, so I’ll stop there. There is an overwhelming amount of keto advice available online, in bookstores, and from family and friends, who are happy to provide such advice unsolicited and without peer review. I soon got the hang of it and could mostly tell the difference between naughty and nice. As for the fasting component—it is important to note that fasting is not “starvation”—there are many different schedules. The 5:2 approach has many advocates. It lets you eat regularly 5 days out of the week, but on two nonconsecutive days, allowable calories are severely restricted (500 for women, 600 for men). I initially opted for the 16-8 daily schedule—fast for 16 hours, eat within the remaining 8-hour window—as skipping breakfast and late-night snacks looked to be the easiest to follow.
This is a good time to remind everyone that my experience essentially is a single case study trialing a novel way to treat Lyme disease, a Lyme Starvation Diet, as a stopgap measure until new, and more swift-acting treatments, are developed. LSDs are not exactly an ideal, long-term solution for myriad reasons. For starters, low carb diets—looking at you, keto—can be hugely expensive. Without pasta, rice, and bread to use as stomach fillers, embarking on an LSD might be an impossibility for those on tight budgets. Additionally, they are hard to commit to long term due to their onerous dietary restrictions, which eliminate food staples of many cultures. While intermittent fasting may be easier (and cheaper) to follow, it, too, has tricky hurdles, chiefly hunger.
This is going to be a process. An agonizingly slow process. There are so many questions.
How long will I and other infected family members need to diet to eliminate those spirochetes before we can return to regular eating? How would we know when, to the consternation of grammarians, we’ve killed it dead? A keto diet in and of itself is notoriously hard to follow, especially when the no-bread/pasta/fries-for-you punishment is spread around to spouses who prefer to consume such staples.
A just-published study found that, alarmingly, 1 in 3 U.S. adults have an iron deficiency. Are iron supplements warranted if your iron levels are low, or could it cause another problem? Too much iron could potentially be a health issue.
Should the new classes of weight loss medications be an option for those infected with Lyme who do not have diabetes or are overweight? Although they are extremely popular and frequently prescribed off label, what are the risks, especially for those who need to maintain or gain weight? If sexual transmission of Lyme is avoided, can these “lifetime” drugs be stopped when the disease has been eliminated?
Definitive answers to these questions and so many others ultimately will come from research, but an upstart faction of scientists has already set an unlikely trailblazing path to follow. But there is no time to waste and, as Dad used to say to his lollygagging children, we need to “hustle our bustle.”
As we reach the long-awaited (and oft-delayed) conclusion of Sit Down Before Reading, I thought I was done with overwrought horse analogies, but neigh, there is one more. Recall the three fatal assumptions made at the start of this chapter, the three that got us into this mess. There portends to be a fourth. Ignore all that I’ve written about Lyme being a harbinger of doom, sweep it aside as the overreaching ramblings of a wannabe citizen scientist while ignoring the desperation of patients, and you’ll have your full posse saddled up and ready to ride. Four horsemen. When you see four horsemen after an apocalyptic warning, that’s typically a bad, bad sign. A not-to-be-ignored harbinger of doom.
But c’mon, how bad could it get? Are we really doomed, like R2D2’s Star Wars partner C3PO-level doomed? That’s up to us….
A Final Prophecy
I genuinely thought we had more time. I figured the tempest of sickness was still gathering, a storm on the fringes of our radars. I was wrong. In a flash, in the month-and-a-half between Chapters 51 and 52, those horsemen and their snorting beasts have descended upon us like ethereal demons in an all-too-real horror story.
Four Horsemen of Apocalypse, by Viktor Vasnetsov. Painted in 1887. Wikipedia, public domain.
From The Washington Post July 30: “The suicide rate for U.S. children 8 to 12 years old has steadily climbed in the past decade and a half, with a disproportionate rise among girls.”
From The Lancet in August: “17 of 34 cancers [studied] had an increasing incidence in younger birth cohorts. … Each successive generation born during the second half of the 20th century has had increased incidences of many common cancer types. … Notably, the incidence rate was approximately two-to-three times higher in the 1990 birth cohort than in the 1955 birth cohort for small intestine, kidney and renal pelvis, and pancreatic cancers” and in women specifically, liver cancers.
From various media sources August 6: news reports that a movie star, an Olympian, and the child of a TV celebrity were sick with Graves’ disease, postural orthostatic tachycardia syndrome (POTS), and acute disseminated encephalomyelitis (ADEM), respectively, conditions I’ve all linked to Lyme. The famous are equally susceptible.
From The New York Times August 9: “About 400 million people worldwide have been afflicted with long Covid” with an estimated economic cost of $1 trillion, a price tag that will only rise as two years post infection, “only 7 percent to 10 percent … [have] fully recovered [while] some manifestations of long Covid, including heart disease, diabetes, myalgic encephalomyelitis and dysautonomia, are chronic conditions that last a lifetime.” This followed a stark WaPo editorial less than two months earlier warning that “long covid is a looming potential challenge to public health and governments around the world. … The nation must prepare to cope accurately and compassionately with a wave of illness and impairment that might come.”
From The Washington Post August 12: “Autoimmune conditions are increasing in a way that isn’t accounted for by our genes alone… Not only are autoimmune diseases rising, but they’re often occurring at a younger age. … Furthermore, autoimmune diseases are rising where they were once less common. … And there’s another piece of the puzzle. More young people are being diagnosed with cancer.” Females are at higher risk.
From The New York Times August 13: “The mental health of adolescents and young adults has been on the decline… The data clearly points ‘to an increasingly sick society.’”
An increasingly sick society, rising precipitously with each new generation, especially among women, just as I foretold. Inexplicable climbing rates of autoimmune disease, mental disorders, long Covid, chronic illnesses, and cancers, just as I foretold. Desperate for answers, researchers, professional and amateur alike, have yet to find a single one—it’s not genes, it’s not Western diets, it’s not something toxic in the environment—just as I foretold.
I tried to stop looking at the unfolding train wreck, but I couldn’t help myself. The avalanche of evidence that Lyme disease has its knee on humanity’s throat isn’t waning.
I predicted the existence of dozens upon dozens of strains of Lyme. There are.
I predicted that Lyme has its fingers in countless health conditions. It does.
I predicted that the new class of weight loss drugs would dramatically affect a wide range of chronic diseases. Do they ever.
And I predicted it was going to get way, way, way worse, leaving no corner of society unscathed. It’s happening, as our planet’s youngest generations are at the highest risk of falling into the growing abyss of chronic illness.
It may not feel like it at the moment, as this towering house of cards fully collapses, appropriately after 52 chapters, but we are on the doorstep of the greatest era of medicine and discovery the world will ever know. Free of the strangling misdirection of Lyme, researchers will usher in a new era of groundbreaking advances in healthcare, innovations arriving at a blinding, breathtaking pace. Even so, healing will not magically occur overnight or miraculously work swiftly. It won’t work for everyone, especially if untreated coinfections are in play (particularly babesia, says Dr. Cameron, which requires an extended dose of the malarial drug atovaquone-proguanil). But in time, recovery will happen. Because it already is.
I’ve been getting a preview for months on the antibiotics front alone, as I’ve been receiving in my inbox heartbreakingly moving accounts that foretell this coming wave. Take this story from Kevin, a member of ActiveMSers.
My mother was diagnosed back in '84 with MS. She ultimately passed of lung cancer but lived for 30 years with declining mobility and cognition. She was never tested for Lyme, but just before the lung cancer diagnosis she was put on antibiotics in case it was a bad case of pneumonia. Guess what? Noticeable improvement in eyesight, memory and upper body mobility. The cancer was too far along for care unfortunately, but we all thought, what the hell happened? She went from legally blind to being able to see. A left arm that was useless worked again.
Two of the most common antibiotics used to treat bacterial pneumonia include amoxicillin and doxycycline, both frequently used to also treat Lyme disease. Kevin’s story didn’t end there. In 2021, after he had experienced a series of unexplainable neurological events including neuropathy, an MRI revealed spinal cord lesions. A follow-up lumbar puncture showed oligoclonal banding in his spinal fluid, cementing a diagnosis of multiple sclerosis. Never mind that his Lyme panel was positive (but not positive enough) for Borrelia burgdorferi.
Then there’s Daniel’s story, another longtime member of ActiveMSers. A year ago, he was hospitalized and treated for pneumonia. He recovered with the help of the amoxicillin. A week or two later he developed an ear infection and was prescribed cefdinir, a cephalosporin antibiotic also used to treat Lyme.
After a couple of days on Omnicef, I felt well enough to go to the gym with some new friends. I was watching them play basketball (something I long ago enjoyed playing but have long-since been unable to do), and one of them called over to get my attention and passed the ball to me [with] a bit more zip than an average basketball pass. I had a brief flash of internal panic ("ohmygoshthisisgonnahurtIcan'tcatchthingsanymore!")... and then I caught the ball. Like it was the most normal thing in the world. I broke down in tears (which surprised everyone), but I reassured them I was OK and was just having a moment. After that experience, I did something I haven't been able to do in 15 years: I went running—not just jogging... actual running! For the first time since 1/13/2004, I've had something I thought I'd lost 20+ years ago. Hope.
Hope, like the word “cure,” is charged with immense promise. How can I be so certain that the wheels of change are already in motion and a brighter future is on the horizon given the gigantic roadblocks? Dr. Marshall’s and Dr. Robin Warren’s Nobel Prize-winning discovery took years to get recognized by the medical community, and countless others were stifled for decades. Why would this story be any different?
Watch the video here
Because of all of you. Many landmark medical findings of the past were made in obscurity by toiling researchers—most plying their trade in near vacuums—who had to struggle mightily to get heard. Today? The internet and social media can spread breakthroughs just as fast as misinformation.
When I prophetically wrote 26 chapters ago that those “megaphone-shouted claims … that all cases of [insert disease of choice here] are in reality just cases of Lyme disease” are “supported by scant objective evidence,” whelp, now we have that objective evidence. And we still have those megaphones. We just need to muster the courage to use them.
My advice: invest in ear protection. It’s gonna get noisy.
Suffering patients, particularly those with scant treatment options—Alzheimer’s, ALS, long Covid, and so many other chronic diseases and mental disorders—are only going to be so patient as sickness swells. If medical providers, pharmaceutical companies, government entities, nonprofit organizations, and others don’t swiftly pivot to address Lyme, and I do mean swiftly, these patients will seek advice, treatment and solace elsewhere, anywhere. It will be unavoidable.
Rumors of another truth will begin to circulate as cracks in the trust of medicine start to surface. In time, reports of a simple-to-follow diet triggering relief will start spreading on social media and in patient groups. Early adopters will rush to share their experiences and newfound hope. News of brain fog lifting or crushing fatigue resolving will be hard to miss. Suddenly cooperative bladders or the revelatory sight of long-missed ankle bones will spark shout-from-the-rooftops joy. Vanishing pain, vanishing depression, vanishing stomach issues, and vanishing skin problems all will dumbfound the most skeptical doubters. Videos—funny, serious, ironic—will rapidly multiply, like the one of a dead-looking Dr. Cameron, head resting on a white pillow, suddenly opening his eyes wide with the caption: “Me at my funeral when someone says there’s a cure for Lyme disease.”
Dr. Deadpan might want to look away from Part 5 and the conclusion to Sit Down Before Reading for health reasons. I inadvertently foreshadowed what’s ahead back in Chapter 5. Tangible evidence of a diet initiating dramatic symptom remission has been swirling around us for centuries, the incidents so common that doctors have given it a name. Indeed, most in the medical profession have witnessed it happening at some point in their careers as have many caregivers, even me.
Buckle up.
