Sit Down Before Reading, A Memoir by Dave Bexfield
Part 5
Evidence Based Success
The ketogenic diet has been used successfully—and safely—to treat medical conditions, particularly epilepsy, for more than a century. In the last decade, though, the therapeutic diet has found champions in the unlikely halls of Harvard’s medical school and beyond for its surprising effectiveness at treating mental disorders, from schizophrenia and bipolar to depression and addiction. A 2022 French study found that of the patients who completed the diet, an astonishing 100% showed some form of improvement, 64% were able to reduce or eliminate medication, and a gobsmacking 44% achieved complete clinical remission of their mental illness. Gone, as in no more voices, hallucinations, or delusions—patients thought to be untreatable made fully whole again.
Figure 1. Change in Clinical Global Impressions Severity Scale (CGI-S) Over Time. Severity of illness was assessed in 27 of 28 patients using the CGI-S. The CGI-S is rated on a scale of 1 to 7, with 1 indicating normal and 7 indicating extreme illness. Following the KD intervention, CGI-S had improved in all 27 patients, with 12 of 27 (44%) achieving a CGI-S of 1 (clinical remission). Front Psychiatry. 2022 Jul 6;13:951376. doi:10.3389/fpsyt.2022.951376
Although this trial was small (28 participants) and the diet research into brain disorders is still considered to be in the budding stages, past investigations into keto’s promise in this particular patient population, inadvertently, may prove to be more reliable than other studies, providing more robust, accurate data. The reason? People with mental illness are less likely to be involved in sexually active relationships, ergo they are less likely to reacquire Lyme from their partner, which would influence the diet’s long-term efficacy. (If researchers were to investigate the sexual habits of trial participants, this author is confident that the connection between unprotected sex and less-successful outcomes will solidify.) And since, based on my investigative research, the root cause of many if not most of these mental illnesses is Lyme disease, the diet interventions in this patient population should be indicative of its potential effectiveness across the full range of illnesses attributed to Lyme.
I’m not a doctor, I don’t pretend to be a doctor, and I do not provide medical advice. But I can share the successes of doctors who are treating, knowingly or unknowingly, Lyme disease. Although antibiotics like doxycycline and IV ceftriaxone are typically used to treat acute, recent Lyme infections, their effectiveness drops the longer the bacteria have been assaulting the patient. These drugs struggle to cross the blood-brain barrier, and the spirochetes appear to have developed unique defense mechanisms to thwart the threat. But they can’t protect themselves against starvation, and this is the reason diets that severely restrict their fuel, carbohydrates, are so effective.
At this point, I cede the floor to medical experts with far more experience at low carbohydrate diets and their benefits to health, starting with Harvard’s renown Christopher Palmer, MD, psychiatrist, researcher, and author of Brain Energy.
Like Colombia’s Dr. Anaya and his autoimmune “tautology” theory, Dr. Palmer (and many others over the decades) has also noticed the curious synergy between mental illnesses, as it has become increasingly clear that schizophrenia, bipolar disorder, major depression, alcoholism, anorexia, and other brain disorders all conveniently appear to share a common pathway. He makes the point that while these illnesses are very real, the actual distinction between these conditions is so murky that the diagnosis is little more than a descriptive label of their symptoms, just as I have been insisting with autoimmune diseases. And like so many autoimmune diseases and chronic health conditions, the causes are unknown and the treatments, with few exceptions, merely address the symptoms. But, after witnessing eye-opening success treating these mental disorders with diet modifications in hundreds of his own patients, the Harvard researcher has shifted his thought processes and developed what he says is the first unifying theory behind mental illnesses: that they potentially spawn from metabolic dysfunction.
This isn’t the place to break down the holes in his theory (which is closer to right than most), but his hourlong presentation at the 2024 Metabolic Health Summit makes many of the same observations I’ve made in this book. And, critically, his commentary on dietary interventions, specifically keto, transcends “the why,” whether it’s believed to be combatting Lyme, metabolic issues, or another health issue entirely. Although the title of the first video I watched featuring Dr. Parker—“Is the Ketogenic Diet Effective in Treating Schizophrenia”—suggests that it only applies to mental illness, his advice is appropriate for treating any illness suspected to be caused by Lyme disease.
Dr. Palmer is featured in other videos, including “The science behind medical keto”, and recommends other science-first resources. Beyond reading his own book (borrow it from a library, he says), he urges patients to read the latest (seventh) edition of Ketogenic Diet Therapies for Epilepsy and Other Conditions, written by a panel of medical experts. He also supports the outreach of the Metabolic Mind, a nonprofit investigating the connection between metabolism and brain health for the study and treatment of mental disorders, and their videos, like “Best practices for treating mental illnesses with a keto diet” and “What you need to know before starting a keto diet for mental health”. One of the group’s advisors, Dr. Georgia Ede, has even put together a short handout for physicians detailing the robust science backing the use of the ketogenic diet, which is downloadable from Dropbox.
After reviewing this entire lot, these are my top takeaways.
The keto diet is not a fad diet or a dangerous diet, but a serious, evidence-based medical intervention first used over 100 years ago.
Dr. Palmer typically starts seeing health improvements within 2-4 months and recommends at least a 3-month commitment. More gains typically follow with additional time. People often can get off the diet after full remission is achieved but may have to restart if symptoms return (hello, sexual transfer).
The first week or two can be challenging, sometimes called the “keto flu,” and health symptoms may get exacerbated (e.g., insomnia), which is of particular concern for those with severe mental illness. (This could be akin to a Herxheimer reaction, a common response attributed to the introduction of antibiotics when treating Lyme disease.) Start slowly, ease into it, and be sure to drink plenty of water.
Dr. Palmer strongly recommends working closely with your care team—your primary physician, disease specialist(s), and a dietitian—with frequent, as often as weekly, monitoring. He warns that when you first approach your care team, you might be called crazy, delusional.
Prepare for family and caregivers to be skeptical and suspicious. Doubts that a patient has the wherewithal, much less the willpower, to follow a restrictive diet will be routine. Do not get discouraged prior to even trying.
Before starting, get a full metabolic panel and a blood pressure baseline. As the diet progresses, you’ll notice significant improvements in the numbers (like triglycerides), but do not panic if your LDL “bad” cholesterol rises somewhat.
Resist the temptation to cheat, as the illness could come back with a “vengeance.” Enlist the help of friends and family. If they join in on the diet, even better.
For mental illness, the recommendation is usually to maintain medications (even though they may blunt the diet’s full effects) through month three before slowly tapering them. This needs to be decided on a case-by-case basis by your medical team.
“Schizophrenia does not have to be a lifelong disorder,” implores Dr. Palmer. “People can heal and recover from it.” Replace schizophrenia with any disease attributable to Lyme and let that new reality sink in.
Of course, the ketogenic diet is just one type of diet that starves out spirochetes. An effective alternative is intermittent fasting, and new research published October 1 in the Annals of Internal Medicine previewed its potential, as a randomized 3-month trial—where participants ate only in an 8-10 hour window without severe carbohydrate restrictions—produced an array of metabolic health benefits including a noticeable drop in blood sugar. MS researcher Dr. Gavin Giovannoni and popular YouTube MS sage Dr. Aaron Boster also praise and personally partake in intermittent fasting. For video instruction and in-depth analysis of why and how this type of diet intervention works, it’s hard to beat the scientific videos of Dr. Jason Fung, which I discovered on Dr. Boster’s recommendation.
Ketogenic and intermittent fasting diets also feature an uncommon element noticeably absent in today’s profit-driven medical marketplace. They are a free, straightforward way to modify your disease, perhaps even cure it, without expensive prescription drugs, exclusively prescribed by your primary physician and health specialists, that merely target symptoms. And that changes the calculus.
Skeptical doctors can be as disbelieving and dismissive of this Lyme disease epidemic as much as they want, gaslighting patients with fervor. Because it ultimately won’t matter.
The Not-So-Shocking Conclusion
Grandpa Bexfield, a squadron-leading WWII B-17 bomber pilot with a crushing handshake even in his 80s, had turned into a shell of the hero I remembered. But on my last visit to the nursing home to see him, my hand gloriously ached once more as stories and a curiosity I hadn’t seen for years cut through his daily, thick mental fog. We were having a normal conversation, sharing memories, laughing, and then crying from laughing too much. The Colonel was fit and prepared to report back to duty—at least grandfathering duties—leaving me overjoyed. I could barely retell that story as I relayed the news to Dad of his father’s passing; Grandpa died just days after my visit.
Grandpa and Grandma Bexfield in Germany, 1950.
“Anecdotes of unexpected or paradoxical mental lucidity in the days and weeks before death among people with longstanding dementia have been reported over the last two centuries, with sparse scientific investigation.” That’s the opening line to a 2019 article authored by 10 researchers from respected centers from around the world. People, “assumed to have permanently lost the capacity for coherent verbal or behavioral interaction due to a progressive and pathophysiologic dementing process,” are becoming themselves once again, if only fleetingly, before departing.
Paradoxical lucidity (PL) is the official medical terminology for this brief awakening. A majority of healthcare professionals working with terminally ill patients have witnessed PL and the “construct of lucidity may encompass more than verbal communication, including non-verbal communication, participation in activities, such as playing an instrument, and ability for self-care and mobility.” And this occurs not just in dementia, as it has also been “reported in patients with tumors, brain abscesses, strokes, and meningitis, as well as in comatose patients who awaken shortly before dying.” Loved ones, thought lost forever, suddenly rolling out of bed to take a stroll or play a violin, is a very real phenomenon.
A 2021 story in The Guardian harbors the answer. See if you can spot it.
It was the red jello that did it. It was Christmas 1999 in Rapid City, South Dakota, and Ward Porterfield, 83, was in a nursing home. He had been diagnosed with dementia three years earlier; he was confused and disoriented and eventually he no longer recognised his daughter, Kay. “When I went in,” she says of her later visits, “he didn’t know me at all.” That Christmas, he refused to eat. “Finally I just told them: ‘Bring him jello, he likes jello. Red jello.’ And he looked at me, really deeply, and said: ‘So. I suppose the jello’s gonna be my last meal. You’re gonna try to starve me, eh?’ That was like: ‘What’s going on here?’”
Her surprise wasn’t just at his coherence, but that the tone of this reply was undeniably her father’s dry humour. Later that night, nurses told Kay, when children visited to sing carols, tears streamed down Ward’s face. Kay becomes emotional recounting it. “Don’t cry,” a nurse told him. Ward looked at her. “If you were in my position, you’d cry too,” he said. “These are the last Christmas carols I’ll ever hear.”
The next morning when she visited, Ward recognised his daughter instantly. And for the next two days they spoke. “It was as if his mind had been unplugged for so many years,” she remembers, “and then all of a sudden it got plugged back in again.” Then he lost consciousness. Two days later, he died.
Dr. Basil Eldadah, the supervisory medical officer at the Division of Geriatrics and Clinical Gerontology at the US National Institute on Aging (NIA), interviewed for the Guardian piece, has been championing research into these unexplained awakenings since 2017. “It gives us some pause with regard to our current theories and understanding about the nature of dementia,” he told the paper. “We’ve seen enough examples of this to be reassured that dementia can be reversed – albeit temporarily, very transiently – nevertheless, it does reverse. And so the question then is how.”
Answers await in the anomalies. It’s not the red Jello. And the reversal of dementia may not be as temporary or as transitory as researchers have theorized. These patients with progressive dementia, hopelessly trapped in minds that are not their own, are slowly fading away in familiar homes now foreign to them, memory care facilities with automatically locking doors, or in the spare bedrooms of exhausted caregivers, playing out their final years. Spouses, partners, sisters, brothers, sons, and daughters—desperate for answers and any whisper of relief—could only watch on helplessly. Until now.
What happens when people stop eating? Blood sugar drops. Despite efforts to avoid such a scenario, it occurs in about 1 out of every 50 people during end-of-life situations, as appetites diminish while patients are receiving palliative care for terminal illnesses. These patients, knowingly or not, are starving themselves. But they are also starving what is causing their dementia.
Paradoxical lucidity isn’t a paradox at all. These miraculous awakenings aren’t the product of divine intervention, a final gift to family. It’s what happens when Lyme disease is starved of food sources and spirochetes die off. If it does not feed, it must recede. It’s science. Many of those loved ones are still in there, they just need help.
I’m not promising that patients with dementia or Alzheimer’s, after embarking on a low-carb diet or intermittent fasting, are suddenly going to turn to their providers and ask when they can go home, but there’s a reason every single Alzheimer’s drug has been a failure. There’s a reason singing-songwriting legend Kris Kristofferson, thought to be suffering from Alzheimer’s for more than a decade, was eventually diagnosed with Lyme (R.I.P.; he passed September 28 at age 88 ). It’s hard to get the science right when the data is wrong. “Based on our past 30 years of research, we no longer think of Alzheimer's as primarily a disease of the brain,” say researchers at the respected Krembil Brain Institute in Toronto. “Rather, we believe that Alzheimer's is principally a disorder of the immune system within the brain.”
They are getting closer (warmer, warmer), as the scientific evidence frantically tries to steer scientists in the right direction. The following research all posted in the waning days of concluding this memoir.
An August 2024 study that warns childhood inflammation is linked to mental health disorders in adulthood. Another August study that found that the most common long Covid symptom is, far-removed from Covid itself, pain. A September study that found that, alarmingly, 1 in 3 U.S. adults have an iron deficiency. Another September study that discovered that schizophrenia shares genetic risk factors with diseases thought to be unrelated: bipolar disorder and depression. An October study that points, unexpectedly, to a bacterial infection as the root cause of type 1 diabetes. And then there was an October 1 piece in The Washington Post that crowed about GLP-1 medications doing the work of gods, an almost magical mix of incredible weight loss, lower blood pressure, improved blood sugar, reduced risk of heart attack and stroke, and “better outcomes in a panoply of chronic ailments, from nonalcoholic fatty liver disease to chronic kidney disease.”
By themselves, each report appears to be a frustrating random dot in a complex universe of ever-expanding dots. But when viewed together through the lens of Lyme disease, it all makes darn-near perfect sense. Past studies, current research, future investigations, it doesn’t matter. Researchers don’t need to read mercurial tea leaves to see what’s in the future; they just need to pay attention to the science without the enormous baggage of preconceived biases. And to accept the possibility that they and their predecessors got it horrifyingly wrong. But what a challenge that will be. It’s all so hard to comprehend, especially the fact that simple diet changes could have such a profound effect on health. That is, until you experience it personally.
One person following my story is Susie, an original member of ActiveMSers. We used to chat regularly over email, but after a noticeable gap and concerned about how she was faring, I shot her a quick email in 2018 to check in. She wrote back with stunning news.
Things are going well. I just came off disability and got a job—completely my choice due to continued improved health. (I'm not sure my insurance company or SSDI had ever had someone call to ask to go OFF disability!) I went back to school and got a degree … I didn't want to waste one more minute of this gift of time I've been given!
With her dramatic turnaround she no longer needed my help, and I didn’t expect she was still a member of my website, but unbeknownst to me, she was faithfully following my hijinks and my new adventures with Lyme disease. Five years later she wrote again.
Hey Dave! I’ll never forget when I found ActiveMSers and you helped change my mind and the trajectory of my life with MS. I’m still here with you and I can’t wait to see what’s next. You’ve got this!!
The other day our karmic friendship took another turn, as the universe deemed it was her turn to help me. An email from Susie arrived in my inbox with a thundering subject line: “You are telling my story!” Her remarkable recovery from MS was no miracle from the heavens and, she wrote, “for the first time everything makes sense. Every. Single. Thing.” When her health nosedived in 2008 and an aggressive experimental treatment for MS failed, she dropped out of the workforce. She kept getting worse. Susie started waking up every morning at 4 a.m. with intense abdominal cramping and diarrhea that would last for hours. After a year of agony without relief, a friend suggested that maybe it was a gluten allergy. Her test for celiac disease was negative—it wasn’t gluten. But what did she have to lose?
I was a dedicated beer drinker and pizza eater for my entire life. I loved that shit so much! And I didn’t believe in fad diets or gluten or even know what gluten was. But I was desperate, so I tried it. The next morning was the first day in a year that I didn’t spend 4 to 6 hours on the toilet in pain. … I ended up cutting out everything from my diet except meat, fish, certain veggies and fruit. That means no carbs. Within a year all of my MS symptoms were gone, and I was ready to start living again!
As stories like Susie’s spread with the relentlessness of the bacterial infection, I want to impress upon readers that in no way do I intend to be a peddler of false hope. Specialized diets, select antibiotics, and repurposed diabetes and obesity medications are unlikely to be magical cure-all for many of us. But tangible examples of their successes in the near term, even if modest and impermanent, provide proof of concept that Lyme disease is a colossal global problem, a epidemic that rightly deserves urgent, all-hands-on-deck attention. It will require investment from all of us: volunteers for clinical trials, motivated researchers to conduct these trials, compassionate doctors willing to reinvent their practices, and the deep pockets from the myriad industries threatened by the disease’s presence—particularly those in food and beverage providing such deliciousness inadvertently helping to fuel the crisis—to help fund it all.
Will it matter, though? If you think scientists and doctors are scrambling to read of my discoveries that—when proven true—will upend much of what they were taught about medicine, please put yourself in their white lab coats. Urging them to parse my words to “see the light,” or whatever other non-threatening cajoler you can conjure, likely will be as fruitless as a can of pickled herring. Imagine a friend giving you a book written by a politician you abhor, and then being told that you simply must read it, that it will entirely change your thinking about the individual you despise, and that you will eventually be a true and faithful convert. Oh, and that it’s nearly the length of Moby-Dick, goes off on far too many tangents, and that you might need to find a new line of work because you may soon find yourself unemployed.
Yeah, no. And it’s not just scientists who are going to recoil. Imagine toiling at one of the countless disease nonprofits tirelessly promoting the need for a cure—only to suddenly discover that you’ve caught your elusive tail. Even people infected with Lyme are not going to appreciate being informed that they have a lurking disease when they feel (mostly) fine. And they are almost certainly not going to give up their delicious rustic breads, homemade pastas, and favorite cocktails to find out. For drug companies and the vast network of providers and companies who service those ill folks, though, that’s just fine.
Sickness is big business. No, it’s bigger than big. It’s $10 trillion a year big, more than 10% of global gross domestic product. In the U.S. alone, health and wellness account for a fifth of spending, and even that may be an undercount. But what could be bigger financially than sickness? The savings in healthiness. According to a 2021 study, “A slowdown in aging that increases life expectancy by 1 year is worth $38 trillion, and by 10 years, $367 trillion.”
Lifespans are going to expand ginormously once Lyme is brought under control; an additional 10 years is a reasonable estimate given the destruction it has caused. Stack 367 trillion dollar bills in your backyard and it would stretch nearly 25 million miles into space. Not a bad return on investment, that investment being the chore of reading an overly verbose memoir featuring questionable humor.
An example of the type of questionable humor found in this memoir.
A Finishing Mic Drop
As we approach the end of this otherworldly journey, I’d like to thank you for taking the time to accompany me. I hope it wasn’t too much of an imposition—I had warned you from the start that it might get clunky—as many chapters stretched far too long, there were a painful number of lame jokes/pop-culture references/unnecessary clichés, and you were forced to ride shotgun on too many fishing expeditions. Writing this memoir in near real time without knowing the conclusion meant myriad dead ends and reversals, resulting in pages upon pages that would have normally ended up on the cutting room floor, mercifully slayed by editors. But I needed to write all those pages to get to here, to now.
It took me two years and 42 chapters just to decipher the autoimmune debacle, but once I did, shazam, everything fell mesmerizingly into place like the concluding pages of an Agatha Christie mystery. Every health condition that has deep ties to autoimmune disease—from mental disorders and long Covid to birth defects, cancers, and chronic illnesses—meant that Lyme must be in play in those as well. When all those disparate dots of sickness then also connected, even the random outliers, and did so seamlessly without needing to squint to see the data in a more favorable light, I knew I had found the answer. A stumper of stumpers until the end when it all seems so obvious, the blatant clues embarrassingly overlooked.
I unearthed the biggest confirming clue just pages ago, which tied a Lexus-sized bow on it all. Like Meghan Trainor and her infatuation with bass, when it comes to Borrelia burgdorferi spirochetes, it’s all about the manganese, the trace element the bacteria require to survive. And the more it can vacuum up, the more severe damage it can inflict. Researchers have confirmed in repeated studies that “high manganese is essential for virulence in B. burgdorferi.” That explains a lot. A lot a lot.
The reason why women, notably between the ages of 15-50, far outnumber men for getting diagnosed with autoimmune diseases? “Iron deficiency increases intestinal absorption of manganese,” resulting in women having higher stores of manganese due to the regular loss of iron triggered by menstruation. The reason for the dramatic rise of cancer in young people, namely in cancers of the colon, kidneys, pancreas, and liver? Manganese is first absorbed in the colon before it is distributed to primary storage locations in, you guessed it, the kidneys, pancreas, and liver. As undetected cases of Lyme balloon with each passing generation, rates of cancers affecting these organs will continue to soar. And the reason why the new weight-loss drugs and carb-reducing/fasting diets curtail addictive behavior, taming overeating, alcohol abuse, smoking and more? It’s got to be manganese related, and it most definitely is as we stumble all Homer Simpson-like into another nest of hallelujah booyahs, those epiphanous revelations I first introduced to you in the watershed chapter of the same name, Chapter 48: Hallelujah Booyah.
I’ve successfully unraveled countless medical mysteries dating back centuries. I have thoroughly addressed every significant, outstanding question swirling around Lyme disease. But there is one piece of unfinished business. Why are men more likely to suffer from mental health disorders like schizophrenia, bipolar disorder, and autism? And why are men more likely to get overcome by addiction? Now I’ve got a darn good hunch. We know that Lyme spirochetes are tripping over themselves to access manganese, which means that male brains must have more of that sweet, trace-element nectar in the specific areas of the brain that control those behaviors.
Manganese accumulates in a few areas of the brain including the frontal cortex and striatum, but the basal ganglia region holds the lion’s share—and that is deeply revealing, as its “dysfunction results in a wide range of neurological conditions including disorders of behavior control and movement, as well as cognitive deficits.” Since it directs “the rewarding, or pleasurable, effects of substance use” that lead to addiction, to align with my theory, parts of the basal ganglia must be noticeably larger in men than in women—men are more prone to abuse alcohol, smoke, and take illegal narcotics—meaning more potential storage area for the manganese that spirochetes are itching to plunder.
Bingo. Two areas within the brain’s basal ganglia are indeed drastically larger in males, a Dutch study confirmed, finding that “no significant sex differences were found for caudate nucleus and nucleus accumbens, but males showed significantly larger volumes for globus pallidus and putamen.”
Illustration of the anatomy of the basal ganglia. The globus pallidus lies inside the putamen. The thalamus is located underneath the basal ganglia, in the medial position of the brain. 01 August 2014. Lim S-J, Fiez JA and Holt LL (2014) How may the basal ganglia contribute to auditory categorization and speech perception? Front. Neurosci. 8:230. doi: 10.3389/fnins.2014.00230 http://journal.frontiersin.org/article/10.3389/fnins.2014.00230/full. Wikipedia.
Now all I needed was affirmation that one or both suspected areas are a repository for manganese. A major Purdue-led 2020 research study, brain manganese and the balance between essential roles and neurotoxicity, provided that answer. “Using magnetic resonance imaging (MRI), several studies have shown that significant brain accumulation of manganese in both humans and other animal models is associated with increased risk of neurotoxicity. These subjects often show a characteristic accumulation of manganese in the basal ganglia, particularly in the globus pallidus.”
Figure 1. Schematic showing the sagittal section of human brain showing the brain regions where Mn predominantly accumulates (48, 200). Dopamine is a key neurotransmitter that is produced in the substantia nigra, and the dopaminergic neurotransmitters project to the basal ganglia region. J Biol Chem. 2020 May 8; 295(19): 6312–6329.
Published online 2020 Mar 18. doi: 10.1074/jbc.REV119.009453
Figure 2. Mn exhibits hormetic dose response, which means an inverted “U-shaped” curve. Deficits in neurocognition are seen at both lower and higher doses, with maximum function being at the top of the inverted U-shaped curve. Adapted from Vollet et al. (6). This research was originally published in Current Environmental Health Reports. Vollet, K., Haynes, E. N., and Dietrich, K. N. Manganese exposure and cognition across the lifespan: contemporary review and argument for biphasic dose-response health effects. Curr. Environ. Health Rep. 2016; 3:392–404. © Springer. J Biol Chem. 2020 May 8; 295(19): 6312–6329. Published online 2020 Mar 18. doi: 10.1074/jbc.REV119.009453
Another riddle solved. God, I love science. It’s a gift that keeps on giving. And giving and giving.
Expressing an “urgency to explore” the problem of excess manganese, as it appears to be “leading to increased risk of diseases,” the authors of that 2020 study repeatedly landed on findings that can only be categorized as YGTBFKM, more commonly expressed spelled out in full, as in “you’ve got to be freaking kidding me.” “Thyroid dysfunction may be an understudied aspect of Mn-induced disease.” “Exposure to Mn can have detrimental effects on the brain at any stage of life, causing neurobehavioral and neuromotor deficits and/or neuropsychiatric illness.” “Exposure to Mn … can potentially alter continuing myelination and may affect intellectual and cognitive abilities.” Pointing to other studies, the author’s note that it’s inextinguishable from Parkinson’s disease and evidence suggests that “excess Mn can contribute to the development of Alzheimer’s disease.”
This cause-and-effect logical fallacy has been a persistent, inescapable issue. Noting consistent poor health outcomes accompanying excess levels of manganese, past researchers—forgetting the whole “correlation does not prove causation” mantra—deemed the condition “manganism”, “an acquired neuropathology caused by overexposure to Mn, in which it accumulates predominantly in the globus pallidus and also in the striatum and other basal ganglia structures.”
Never mind that “exposure alone is … insufficient to confirm the diagnosis” or that “neurobehavioral studies have not identified a clear seminal indicator of manganism” or that epidemiologic studies have failed to show a connection “that an individual can develop manganism following intense exposure.” Ignore the issue that “no single diagnostic test exists, and no specific treatment has been determined effective.” Overlook the curious fact that “clinical progression has been found to be irreversible and persistent after the cessation of exposure” to the trace element. Ignore the historical evidence that “affected patients exhibited severe neurological dysfunction, including developmental deficits, dystonia, bulbar defects, spasticity, scoliosis, and loss of independent ambulatory activity.” Skip past the routine psychosis that accompanies the supposed condition, something that occurs frequently enough that it has a name: manganese madness.
The only way it could get more damning is if the science gods themselves gifted me a single study that tied it all together. Then, on October 1st, virtually the last day I could review new research for this memoir, such a gift arrived, sans bow, sans Lexus.
“There is clear pleiotropic enrichment between basal ganglia volume and neurological (Parkinson’s disease, Alzheimer’s disease, migraine), neurodevelopmental (ADHD, autism spectrum disorder) and psychiatric (bipolar disorder, major depression, schizophrenia) disorders,” reported a major, just published Norwegian study authored by no fewer than 17 scientists. And they made another, wee observation right as they were, I presume, dropping the mic. “Transport of manganese is suggested to be of greatest importance.”
Damn.
Wherever the trace element lies in a human body, carnage typically follows if the patient is infected with Lyme. You don’t have to look hard. When Korean researchers investigated the understudied “relationships between serum levels of trace elements and breast cancer,” they found that levels of manganese, one of only two elements that stood out in their analysis, were “significantly higher in breast cancer patients than in controls.” Because of course. Just like I said in Chapter 50 when I used my box-out technique, all signs point to Lyme as a leading cause of breast cancer.
There is another intriguing wrinkle. Breast cancer patients may also have lower levels of manganese in the blood, leading some researchers to hypothesize that the trace element may have “anti-carcinogenic properties.” Not so much. As it does with iron, the body’s immune system also depletes the availability of manganese in the blood in an effort to starve bacterial invaders. It’s not uncommon to see levels of both trace elements drop in the face of an infection, but again, the strategy is inefficient when attacking Borrelia burgdorferi. If manganese is reduced in the blood supply, the spirochetes pivot to drilling its corkscrew bacteria into existing storage areas for manganese, which remain flush with the trace element.
Is there anything that can be done now now about our evolving manganese problem? Would an iron supplement be wise as I first proposed in Part 4 of this chapter? Our 2020 Purdue-led study did find that “iron-deficient diets lead to increased absorption of manganese, and conversely, large amounts of dietary Fe have been shown to inhibit Mn absorption.” And considering that “naturally occurring Mn deficiency has never been reported in humans,” could watching our manganese intake—the NIH has identified top sources, which include a variety of shellfish, nuts, and leafy greens—be helpful as well? The answer is unclear.
At this point, the evidence that Lyme disease is the world’s most pressing heath issue isn’t just compelling, it’s overwhelming. Like Susie said, it all makes sense. Every. Single. Thing. But whether that’s enough to break through generations of bias remains to be seen, if history is any guide.
A Final Promise
I never told you the full story of Ignaz Semmelweis, the Hungarian physician who discovered that handwashing was critical in medicine—maternity ward deaths plunged when doctors started disinfecting their hands between patients—and then was mocked for making such a ridiculous claim. After years of pressing (perhaps better described as haranguing and berating) colleagues about the importance of disinfection, he finally published, in 1861, Etiology, Concept and Prophylaxis of Childbed Fever, a buckling, doorstop-worthy 524 pages. He infused a tremendous amount of research and analysis into his tome, trying desperately to remove all doubts about the source of infection during childbirth—the doctors themselves—and today the book is regarded as “one of the most comprehensive medical studies ever published.” It’s also used as a cautionary tale in every med school worldwide.
Semmelweis's hypothesis, that there was only one cause, that all that mattered was cleanliness, was extreme at the time and was largely ignored, rejected, or ridiculed. He was dismissed from the hospital for political reasons and harassed by the medical community in Vienna, being eventually forced to move to Budapest. Semmelweis was outraged by the indifference of the medical profession and began writing open and increasingly angry letters to prominent European obstetricians, at times denouncing them as irresponsible murderers. His contemporaries, including his wife, believed he was losing his mind, and in 1865, nearly 20 years after his breakthrough, he was committed.
Unexplained sickness mistaken for myriad illnesses. A bacterial infection with a mind-bogglingly simple treatment. Universal, dismissive resistance despite overwhelming evidence. A halo of crazy even though it all makes sense. Sounds like Sit Down Before Reading circa 1861 all the way down to the heft of the book. His life story, though, featured a tragic ending. Dr. Semmelweis’s commitment to a mental health facility wasn’t exactly voluntary; he had been tricked by colleagues to visit the asylum before being wrapped in a straitjacket and led to a cell. He died two weeks later from sepsis at the age of 47, after wounds, purportedly from being beaten by guards as he resisted, became infected. Although today celebrated as a hero (another feature film about him was recently released), the doctor never received recognition for his achievements while he was alive, and in death only a few attended his funeral. And the bitter irony of it all: Dr. Semmelweis died from an infection gone berserk, the very thing he had dedicated his career to trying to prevent. But sepsis isn’t just any infection.
According to the CDC, “most people who develop sepsis have at least one underlying medical condition, such as chronic lung disease or a weakened immune system.” It’s a relentless killer, responsible for 20% of deaths worldwide says the World Health Organization. And it has baffled scientists for ages. “Despite years of research, the pathophysiology of sepsis is still poorly understood, and there is not yet a specific treatment that targets the immune response to sepsis.” (To date, intravenous ceftriaxone has been most reliable.) The initial infectious trigger could be anything, from pneumonia to a car accident to a “playground scrape.”
Hmm. This all sounds suspiciously like the villain in this memoir. Does the geographical pattern fit, with Western nations leading the charge? It sure does. Does autoimmunity increase susceptibility and mortality? Uh, that’s the title of a 2022 journal article. Are the GLP-1 weight-loss drugs associated with reduced sepsis and organ injury? Again, that's literally the title of a 2024 study summary! Even the ketogenic diet improves a slew of clinical measures in septic patients. And, predictably, research has confirmed that levels of iron and manganese are “significantly lower” in critically-ill sepsis patients than in healthy controls. But the smoking gun? The inevitable aftermath following recovery from a bout of the illness.
As in long Covid and so many other “chronic” conditions, patients with post sepsis syndrome—yes, that is an official diagnosis, and it affects upwards of half of those who get diagnosed—experience a vast range of debilitating, lingering symptoms. The tired description of undiagnosed Lyme is by now so familiar that you should be able to recite the telltale signs by heart. Fatigue, joint pain, rash, swelling, brain fog, depression, yada yada, yada. Symptoms that never go away, as “many say that life is never the same after sepsis.”
Before he died, Dr. Semmelweis reflected on his discovery and took solace where he could. “When I look back upon the past, I can only dispel the sadness which falls upon me by gazing into that happy future when the infection will be banished … The conviction that such a time must inevitably sooner or later arrive will cheer my dying hour.” Although handwashing in the medical community was eventually adopted after a few decades, it turned out to be far later rather than sooner, specifically 160 years later, still costing many more lives, before the world’s worst infectious disease was unearthed in its entirety (its banishment, TBD).
Collectively, everything I’ve written to get to now, this moment, the denouement of this story of stories, borders on the inconceivable. I know. I get that the prospect of curing most major diseases sounds like the set-up to a joke in your favorite comic strip (mine is Pearls Before Swine followed closely by F Minus). And I understand why so many doctors, even the bravest ones with the strongest of convictions, are so hesitant to challenge accepted medicine. Because when you do, you get called crazy, longtime colleagues quietly abandon you (unfriend! unfollow!), and family members start treating you like that weird uncle. Pockmarked with bottomless pits and steppingstones that trigger troves of deadly arrows, this rutted path to uncover medicine’s Golden Idol has been a lonely, devilish one to travel.
Depressingly, perhaps people won’t think I’m so crazy when my doomsday predictions start to come true. Rampant, unexplained sickness not only will continue to swamp an unprepared society, but also will especially devastate our newest generations and their children. No group will be spared. There will be breathless news stories, and your favorite celebrities and sports stars will get top billing as helpless fans watch on. Retired hall-of-Fame NFL quarterback Brett Favre getting diagnosed with Parkinson’s at the age of 54, a fan favorite on American Pickers passing away at 60 after living with Crohn’s disease for decades before suffering a stroke that left him bedbound, or a star of The Office getting diagnosed with breast cancer at 50 is merely a precursor to what’s ahead. Cancers fueled by Lyme will increasingly fell the young, reinforced by an October 1, 2024 report in The New York Times that rates of breast cancer are inexplicably rising in younger women, most dramatically in twentysomethings. And powerless doctors are already freaking out. On September 30, Dr. Steven Phillips (who, incidentally, has been treating his long Covid patients successfully with Lyme treatments) posted on X that, “Nobody can convince me that heart attacks & strokes before age 50 are normal. I've been around for a long time. This is not normal. Most of my doctor colleagues agree in private that something is very, very wrong, but they won't comment publicly.” In one day, it received nearly 1 million views and over 1,500 comments.
Thankfully, I also have some hopeful predictions. Those new GLP-1 weight-loss drugs are in time going to shock with their jaw-dropping success in mental disorders, long Covid, cancers, and so many chronic illnesses and autoimmune diseases. It’s no surprise that drugmaker Eli Lilly is aiming to start trials of their popular weight-loss drugs on non-obese patients. Evidence of sweeping, wild success with these interventions is already surfacing. On August 30, The New York Times reported on a study that researchers are describing as “stunning.” People taking Wegovy caught Covid “at the same rate as people randomly assigned to take a placebo … but their chances of dying from the infection plunged by 33 percent.” Not only was the protective effect “immediate,” the “death rate from all causes was lower among subjects taking Wegovy, a very rare finding in clinical trials of new treatments.” Then the ketogenic diet said hold my beer, and not just because of the carbs. A study published in the journal Nature found that it, too, “exerts a multifaceted protective effect on all-cause mortality” without, notably, causing any cardiac issues. That analysis landed October 1, 2024. My forecasts are proving accurate in real time.
Skeptical doctors can be as disbelieving and dismissive of this Lyme disease epidemic as much as they want, gaslighting patients with fervor. Because it ultimately won’t matter.
I don’t believe in conspiracy theories, I’m not living on the fringes of society in a cabin deep in the woods, and in no other aspect of my life do I give off an aura of delusion (excluding the annual expectations that my sports teams, regardless of talent, will have wildly successful seasons). And I technically still run arguably the largest and longest-running MS blog on the internet, with an unquestionable emphasis on science-supported evidence. None of this jibes with a guy who is steps away from entering the loony bin. But if you still want to label me crazy for boasting about making the Greatest Medical Discovery Of All Time, abbreviated clumsily as the GMDOAT, and eying to win the Nobel Prize in medicine without a lick of formal education in the health field, I guess I’ll just have to take the advice of another crazy fella and embrace it.
Here's to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They're not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them. About the only thing you can't do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do.
Steve Jobs, the founder of Apple, said that. For any discovery of magnitude, it is all but preordained for the “crazy” label to be tossed about. Making the case that Lyme—a misunderstood disease that has arguably been the most mocked, scoffed at, and questioned health issue of modern times—is our planet’s #1 medical problem? That’s the definition of peak magnitude (and peak irony). It’s mildly comforting to know that I could share the anthem of the Sofi Tukker tune “Batshit” with such luminaries as Mr. Jobs, Dr. Semmelweis, and Dr. Marshall (who all, like me, had a touch or more of legitimate crazy).
But do you know what’s really crazy? Trying to find the source of countless maladies, much less attempting to accurately diagnose and develop effective treatments for them, using only faulty data and research. It would be like trying to locate Waldo after being told, repeatedly and firmly, not to look for an individual wearing a red-striped shirt with round Harry Potter glasses. No wonder medicine has laid nothing but a colossal goose egg trying to unravel the mysteries of so many illnesses and chronic diseases. I refuse to believe the world’s researchers are simply inept. Those instructions would kneecap the brightest of scientists (not to mention the poor hunters trying to find our buddy on one of those Where’s Waldo posters).
Have you been sitting down? Once you’ve digested all of this, and it’s a lot to stomach, this is the moment to stand up. Take action, and that doesn’t mean screaming for help until your voice gives out and your rivers of pleading tears run dry. If you are a patient or caregiver, now is the time to politely reach out to the scientists and researchers (particularly those with research referenced in this memoir), the chronic disease organizations you lean on, your own doctors and specialists, and your local politicians and community leaders. (I’ll provide tools to assist with your outreach, including at-a-glance summaries, in the appendices of this memoir.) And if you are in the medical community, whether you are a CEO of a pharmaceutical company or a first-year med student, this is your opportunity to take the hard path and challenge the status quo. Influencers, this is your moment to do what you do best, and relentlessly: influence.
Change is coming. Not fast enough, but it’s coming. And when it arrives, with a nod to Lyme, Connecticut’s New England vernacular, it’s going to be wicked awesome. When I peer around the corner, I see an impossible-to-believe healthier future, for all of us. What am I most excited about personally? Relearning how to walk. Rediscovering the outdoors. Rest for my brain. Exploring. Hearing from others as they escape from their disability amber. Dropping in to surprise Mom, just because. Playing catch with Dad. And finally returning to devoting time to—and romantically doting on—the love of my life, Laura. After all she’s been through, she deserves me at my best.
I expect readers have been hoping for me to conclude this opus with a soaring example of my recovery, thumb-nosing proof that I was right about it all. But that would be antithetical to the writings in this memoir, an affront to science. I’m a single anecdote, one speck in 8 billion. That kind of satisfaction is going to have to wait for the epilogue, not yet written. And I’m going to take my time. After Darwin finished his seminal “On the Origin of Species,” he “more or less keeled over and spent nine weeks in a hospital.” Thankfully, my physical and mental health are stable as we close this story. Well, not exactly stable.
Days after starting my Lyme Starvation Diet (LSD), clear changes were afoot, and over the past three months they have only accelerated.
The swelling in my ankles, a never-ending seesaw battle, has mostly vanished. My nightly snoring, sometimes so loud that my log sawing would drive Laura to the guest room, has turned to infrequent twig sawing. My stubbornly low heart rate, barely budging above 100 beats-per-minute, once again can crest the 140s when exercising. Signs of sweet, stinky sweat have started appearing on my brow for the first time in years. My lurking psychosis, which previously began to return after antibiotics were paused for more than a week or two, has stayed away consistently even after extended antibiotic hiatuses. I now have to remind myself to take my muscle relaxants because my ever-present tightness is loosening (I recently started to slowly taper the medication). Some days I’ve even felt so strong that standing right up from my wheelchair actually seemed plausible.
The healing has begun. I am starting to recover. Soon I won’t be an anecdote of one. And one woman in particular can’t wait.
On the morning of June 25, after more than two years of researching and writing Sit Down Before Reading, Laura awoke in tears. I asked her what was wrong.
“I had a dream that felt so real,” struggling to speak through sobs. “You walked up behind me, embraced me, and the husband I love, all of him, was back.”
More tears tumbled.
Was it a dream? Or was it a prophecy?
I keep my promises, I reminded her. Always.
I will be back.
Until then, I’ll leave you with the way I sign off on all my correspondence with members of ActiveMSers. It feels appropriate, as we excitedly embark on this unexpected next stage of life.
Be active, stay fit, and keep exploring!
A NOTE TO READERS: This concludes the real-time online installments of the memoir Sit Down Before Reading. The initial version of acknowledgements, available now, features those who aided the writing, research, and production of the memoir. An addendum will be expanded at a future date to recognize aid received post publication and to publicly thank those who made an outsized impact on the health of humanity. Other future additions to the book will include a foreword (or forewords), the promised epilogue, a searchable index, and a series of appendices. These appendices will comprise of a shareable one-page at-a-glance summary of the Lyme epidemic, a “Clif Notes” version of the memoir with highlights, a glossary of terms, a musical playlist, and a host of bonus material, to include unpublished findings, discarded drafts, and unheeded correspondence. These planned additions will post when available, although the epilogue will not be written until 2025 at the earliest. Print versions of Sit Down Before Reading may be produced in the future (both abridged and unabridged), availability TBD.
For more of my writings and debatably humorous missives, please view my work at ActiveMSers.org, explore the stories behind my photos on Instagram, watch my videos on YouTube, read my "Rediscover" columns in my Village's magazine (2017-2022), or scrounge up old copies of the car magazines I used to run: Nissan Sport magazine and Sport Z Magazine.