Sit Down Before Reading: A Memoir by Dave Bexfield
I gripped the steering wheel tighter as I felt my pulse tick higher. Arm circles waving me on meant it was my turn. I mashed down the accelerator and drove straight at the man in the ballcap holding a red flag to his chest. The speedometer rose rapidly. Which way? 40 mph, 45 mph, 50 mph. I could see his eyes. I could also see him hitting the hood of my car, bouncing off the windshield before flipping over my car ragdoll style into a crumpled heap as horrified onlookers rushed to his aid.
Throw the flag.
Throw the flag.
Throw the damn flag!
THROW THE FLAG!!
His right, my left. I tossed the wheel 180 degrees to the left and then just as quickly to the right, exactly as we were taught. The car nimbly jumped over a full lane, and I whizzed past the flag bearer, both of us safe and unscathed. Even so, I knew I had failed. Laura and I were completing our emergency avoidance test at a new performance driving school in the vast parking lots at the Texas Motor Speedway outside of Dallas. Their remote-operated signaling lights hadn’t yet come in, so they opted to use a manual method of directing drivers which way to turn away from a simulated road hazard. With a flag. Held by a real person. And it was terrifying. When he threw his flag, I had paused a beat, just a beat. In a different situation, that beat could make all the difference.
Traditionally, red flags warn of danger. During a car race, it means conditions are too hazardous to continue. On a beach, maybe it’s riptides or sharks. In a new relationship, perhaps it’s a bizarre affinity for sharing memes about red flags in a relationship. Sure, finding out that a potential romantic partner eats pineapple on pizza screams “WATCH OUT,” but so does discovering that a guy calls his 79-year-old mother nightly to play Wordle. I mean, who does that? (Okay, I do that. And Laura plays along!)
When it comes to Lyme disease and misdiagnosis, readers of this real-time memoir have been extrapolating red flags from its pages for the past year. Some hit you gradually, like finally figuring out three quarters of the way through that movie where you had seen that actor before, while others thwack you in the forehead like a Kevin McCallister-rigged swinging paint can. Cathy was thwacked.
Hi Dave! I have been following your medical memoir and just finished your last chapter. I can add three more data points to your research. I grew up in Minnesota, spent a lot of time on a lake about an hour north of Aitkin, MN, occasionally with some Minnesota cousins. Three of us have MS now. Of course, now we’re all in our 60s, and none of us have explored the idea that we may have had Lyme disease. I think [we] will discuss :-) thanks so much for all your research and tenacity. I hope the IV antibiotics are the answer and change the world for people with MS and chronic Lyme disease. Thank you for all you are doing for all of us!
I cannot count how many emails I have received that begin “I am 99% sure that I have MS, but….” It’s natural that after years or decades of managing a disease—likely treating it with a cornucopia of drugs, diets, and supplements, plus investing tens of thousands of dollars into disability aids and accommodations—you would be highly suspect of news that an alternative cause might be at the root of your health issues. That you’ve traveled down a long and winding road you didn’t need to travel down. Instead of crying out Help!, you just want to let it be … and not be subjected to any more disastrous Beatle puns.
The following “red flags” don’t definitively identify Lyme disease. Certainly no. But the more red flags one collects, the stronger the likelihood that something is up. And that something may indeed be a misdiagnosis. But a word of warning. It doesn’t matter if you are a patient or a practitioner, caregiver or coworker, Hungarian physician Ignaz Semmelweis is going to play a part in your doubts. In 1847, Iggy—or more formally, Dr. Semmelweis—made a discovery that would change medicine forever. At the time, he worked in a maternity clinic located next door to a midwife clinic. He noticed that, oddly, the mortality rate from “childbed fever” in his maternity clinic was five times higher than in the neighboring clinic. Doctors in his ward often did double duty, moving from patient to patient without taking any extra sanitation precautions, even after conducting autopsies. What would happen if these doctors disinfected their hands with a chlorine solution between patients?
Mortality rates fell an astonishing ten-fold. And then the predictable happened, leading him to be enshrined in medical textbooks and to get his own page on Wikipedia. “Despite the overwhelming empirical evidence, his fellow doctors rejected his hand-washing suggestions, often for non-medical reasons. For instance, some doctors refused to believe that a gentleman's hands could transmit disease.” It took decades before physicians accepted the theory of germs. As it is known today, the Semmelweis reflex—the “human behavioral tendency to stick to preexisting beliefs and to reject fresh ideas that contradict them (despite adequate evidence)”—has been studied and restudied.
The very conceit sounds convoluted. “Who would ever consider that when presented with novel information or an intervention that is evidence based, that saves lives, that the established profession and clinicians would disbelieve and dismiss that evidence?” posited one researcher trying to grapple with the gravity of such positions. The answer: people.
Iggy called it. There’s a reason my neurologist reflexively told me that although he had read my memoir and had “reviewed the literature,” he still didn’t believe there were “evidence-based links for your illness to Lyme.” He’s human. So are your doctors, your friends, your family, your spouse. And so are you. Our brains are wired to reinforce long-held convictions. That’s why Minnesota Cathy wrote that she may have “had” Lyme disease, using the past tense, referring to the disease as if it were an old bout of chicken pox or a case of pink eye dispatched long ago. That’s why poor Dr. Beaber—I’m really not trying to pick on the man, he’s a talented neurologist who has frustratingly, yet unknowingly, been on the cusp of multiple revelations—posted yet another video the other day, assuredly stating that “the clear smoking gun here is the sun, and it could very well be the case that the increase in prevalence of multiple sclerosis is due to less sun exposure.” Except clearly, it’s not that clear. Researchers continue to point to sun exposure and other explanations for patterns in MS when one other factor—Lyme disease—is so much more plausible. Yet for physicians to merely sputter out those two words as a possibility requires a radical reboot in mindset.
Our brains are also wired to imagine connections between dots that are not really there, to conjure a more compelling explanation beyond simple human error or frailty. After the last chapter was published, an exasperated reader wrote of the 112-year missed spirochete connection, “It’s why so many feel that there must be some evil conspiracy behind the Lyme problem... there’s really no good reason for the science to have been SO wrong for SO long… it must be a conspiracy. I mean, right?” Except again, it’s not.
Conspiracy theories about disease are as old as Biblical idioms about hills. “We believe the source of MS on the Faroes was their occupation by British troops for 5 years in World War II,” said acclaimed neuroepidemiologist Dr. John Kurtzke—best known for creating the Expanded Disability Status Scale (EDSS)—of the strange, cyclical epidemics of MS on the Kingdom of Denmark islands in research published in 2001. “We think they introduced a widespread, specific, persistent (but unknown) infection.” Except, once more, they almost certainly didn’t. A far more plausible explanation: migratory birds, a topic of interest in numerous studies as a disease vector. In 2020 Swedish researchers found that “the contributions of birds to human disease are substantial, particularly as blood hosts for ticks and for their short-, medium-, and long-distance dispersal. Moreover, several ground-foraging bird species appear to be important for the maintenance and dispersal of Borrelia species.”
So when you read through the red flags that I’m about to unfurl, I expect many of you will pause a beat, just as I did when I was staring down that flag bearer on that hot summer day as the Texas tarmac shimmered. When I flinched, when it was almost too late. I knew I had to go left or right, as plowing straight ahead meant certain disaster. For those patients and practitioners driving on this misdiagnosis road, you have the power to turn, to change the future, to recast fate. The only question is, how quickly will you throw the wheel?
A few years after my MS diagnosis, Laura and I found ourselves traveling on the precipitous mountain roads of Bhutan, home to cringingly blind corners and to traffic jams caused by yaks. Prayer flags numbering in the hundreds, thousands?, greeted us on most mountain passes. Blue, white, red, green, and yellow flags—symbolizing sky, air, fire, water, and earth, in that order—urgently fluttered along wishes of goodwill. Looking back at my misdiagnosis, that’s how many flags it seems were missed, all the color red.
Facial palsy, the condition where your face droops due to numbness, which could be mistaken as the result of a stroke, is a hallmark first major sign of untreated Lyme disease says the CDC. Other wildly common early symptoms of Lyme include a classic bullseye rash, swollen knee, painful joints, overwhelming fatigue, eyesight problems, numbness, pins and needles (e.g., an arm falling asleep), and cardiac issues. Even though the fatigue soon dissipated and the rash wasn’t a distinct bullseye, I had ’em all. Red flags, every last one of them. I was only missing the telltale fever that often accompanies the tick bite.
Right sided numbness and facial palsy called for an ER visit.
One of the most perplexing symptoms of multiple sclerosis is pain. For years, people with the disease have heard that “MS doesn’t cause pain,” despite people complaining, for years, about pain. Eventually, neurologists—now saddled with a different kind of pain, one that resides in one’s ass—capitulated to the complainers and agreed that maybe MS does cause pain… muscle pain, mainly, from tightness. Lyme disease, on the other hand, is legendary for how efficiently it can deliver pain. Think of now-retired professional wrestler Stone Cold Steve Austin in his prime armed with a folding chair, or virtually any scene in any of the Jackass movies. If you need prescription pain pills to get through the day—OxyContin, Vicodin, Percocet, etc.—and/or the relief of copious cannabis to cope with agonizing joint discomfort, uh, yeah. Pain was my very first symptom, and it arrived just over three months after my 2004 tick bite in Old Lyme, Connecticut. Red flag.
Suffering through some serious pain in Cambodia and post-trip, my first symptom of Lyme disease.
My second symptom, which cropped up about five months after my bite: eyesight problems. For me, it started as lightning flashes in the corners of my eyes, but eye issues with Lyme disease can present in myriad ways. Double vision, blurriness, tenderness, pain, sensitivity to bright light, colorblindness. Uveitis, or inflammation of the middle layer of the eye, is exceedingly common. I also had a negative evoked potentials test, which measures the time it takes for nerves to respond to stimuli. This test, while it can also be positive for Lyme disease, is typically positive in people who have multiple sclerosis. Were you initially negative? Red flag.
Flash in left eye, tests come back inconclusive.
Other than the sudden onset of facial palsy, which sent me to the ER in the fall of 2004, the most alarming symptom of my Lyme journey was related to my heart. It started with general chest pain during activity, a tightness or uncomfortable squeezing of sorts that slowed my runs to walks until it dissipated. I even got that wrapping feeling around my upper torso, generally known as “the MS hug,” which would make sense if I were to actually have MS. But a couple months after my ER scare, my ticker was sicker. The scariest part was my particularly high heart rate when standing, known as postural orthostatic tachycardia syndrome (POTS), a symptom tied frequently to Lyme. How unusual is this in MS? Until a 2015 study brought up this discrepancy, there were “no studies demonstrating the association between MS and the development of cardiomyopathies … and there is little knowledge about the cardiovascular dysfunction in MS.” That’s because MS—the disease itself, not the side effects, say living a sedentary life or taking MS drugs that could harm cardiac function (e.g., mitoxantrone)—doesn’t cause heart issues, Lyme does. Red flags out the wazoo.
There are a gaggle of crossover symptoms between Lyme disease and MS, but many symptoms that were long believed to be the bailiwick of multiple sclerosis are likely just dekes, masterful head fakes. For instance, if you suffer from either disease, you are acutely aware that hot weather is our kryptonite, as it saps our strength, turning our bodies into puddly messes. It’s such a reliable marker that back in the 1800s, docs gave patients suspected of MS hot baths to see if their neurological symptoms worsened (and then, presumably, stifled laughter when watching said patients struggle to get out of said tubs).
Dave, unwisely, gets in a hot tub.
But cold weather? That also amplifies stiffness in Lyme disease, turning us into spastic lookie-I’ma-robot parodies. My icy cold legs were another sign of neuroborreliosis, a never-ending source of puzzlement even after a contradictory hot shower. And my perpetually swollen, puffy feet and legs! Easily explained away because I used a wheelchair, yet an easily missed sign of Lyme disease complications. Even oddities like the inability to sweat, a symptom I experienced (as did my dear MS friend Mike) known as anhidrosis, falls squarely in the confines of Lyme, although it is most frequently tied to mimics of the disease, like Guillain–Barré syndrome and, notably, not MS. But perhaps the most bizarre of all my body’s Lyme indicators is my reaction to Viagra. No, not the obvious one.
Appetite-interrupting photos of my balloon feet and ankles (you're welcome).
The erectile dysfunction drug consistently and repeatably boosts my overall strength two- to three-fold shortly after taking it, an effect that lasts for a few hours before gradually fading. Picture David Banner without the anger issues, torn clothes, and green complexion. My weak side gets dramatically stronger while my strong side goes full Hulk; it’s nothing short of stunning. Everything gets easier, even standing. If you have any of these symptoms, up goes a red flag on your flagpole, regardless of whether you’ve deployed a certain, er, uplifting medication. Take it from the Hulk himself, actor Mark Ruffalo, who just told his 8.3 million followers on Twitter on May 17 about his first-hand bout with a certain tickborne disease. “From personal experience, Lyme disease can be brutal, persistent, and misdiagnosed. The healthcare industry is way behind on this disease.”
People with MS frequently report urinary tract infections, and for understandable reasons. “A common cause of urinary infections in MS is stagnant urine due to the bladder not emptying fully when going to the toilet,” explains the UK’s Multiple Sclerosis Trust. “Known as urinary retention, this left over urine provides a good environment for bacteria to grow and a UTI to develop.” This is one of the leading reasons MSers eventually are resigned to self-catheterization, which theoretically should correct the issue. Yet often there’s an odd surprise: continued UTIs without a documented “I”—tests that repeatedly turn up negative for active infection or return curious inconclusive results (like a skin infection). These stubborn urinary difficulties then get blamed on other issues, like spastic bladders or enlarged prostates… only for some, something bizarre happens.
Antibiotics routinely clear up the nonexistent infections, and they may occur so regularly that the patient is put on daily low-dose antibiotics. Uh oh. Negative tests for repeated UTIs is a hallmark of neuroborreliosis and its related coinfections, one that consistently trips up doctors and urologists. Red flag.
Dekes and Jukes
It’s not just Lyme disease fooling physicians. Up to 50% of Lyme disease cases include a coinfection, typically Babesia, ehrlichia, Anaplasma, or Bartonella. If you are experiencing night sweats, that’s not normal for MS. Unless you are menopausal, all fingers point to Babesia, which is also known for migrating pain around the body, including muscle pain. Itching up a storm? Researchers have assumed chronic itching, specifically pruritus, was an MS symptom, but hives and their accompanying itchy scratchiness are a sneaky indicator of ehrichia. Suffering from unbelievable jaw pain from a diagnosis of trigeminal neuralgia? That’s likely the tick tag-teamer Anaplasma. Are you avoiding shoes because of pain in the soles of your feet? That’s not traditionally MSey, but it is Bartonellaey, which can also produce swollen glands and psychiatric symptoms, even epileptic-like seizures. You should also be aware of Bartonella’s other name: cat scratch fever. Psst, it doesn’t always come from cats. What’s that waving? Red flags.
Did you just get tripped up reading about psychiatric symptoms, emphasis on trip? I’ve already shared my full-blown psychosis experience with readers—thankfully a relatively rare side effect with Lyme, afflicting fewer than 10% of patients—but mental challenges from the tickborne illness come in more flavors than Jelly Bellys. And we’re not just talking about run-of-the-mill flavors of cog fog, either. There’s the obvious A-list that grabs the headlines—Lyme disease is sometimes mistaken for autism and Alzheimer’s (re: Kris Kristofferson)—but spirochetes wriggle their way into our psyche in surprising other ways. Depression and suicide are frightfully common offshoots—indeed, there’s a frequent saying in the Lyme community: Lyme doesn’t kill you, it just makes you wish you were dead—but did you know that so are complications resembling bipolar disorder, schizophrenia, and OCD? Obsessive control symptoms are exceedingly common in Lyme. Looking back over the years since my tick bite, bouts of OCS have disrupted my day-to-day in bursts lasting days, weeks, even a month or longer. I’d always just chalked it up to extreme focus and dogged persistence. Yeah, right. It bordered on something far closer to mania, but only rarely did I ever recognize that my brain was splintering mid splinter. Even to those who are colorblind, these mental disturbances are red flags.
Were you originally diagnosed with Lyme disease before later receiving an MS diagnosis? Or worse, were you told that your Lyme disease test was a “false positive,” only to develop MS sometime afterward? While the tickborne disease often is easily cured with a course of antibiotics when caught in the first days or weeks after the tick bite, if it progresses past the 3–6-month mark, eradicating Lyme gets far more challenging and uncertain. That short course of antibiotics might help in the near term (hey, things are getting better!), but if symptoms return months or years later, a distinct and well-documented possibility, neuroborreliosis can mimic both the symptoms and diagnostic markers of MS—as in all of them—including brain and spinal lesions as well as banding in the spinal fluid. Since any positive tests for Lyme disease will be dismissed as just residual markers because you were already “cured,” you’ll likely be staring down the barrel of a lifetime diagnosis of multiple sclerosis.
Nobody seems to know anything about Lyme disease. And nobody appears eager to learn.
On the flip side, have you been living with an MS diagnosis and then later received a Lyme disease diagnosis? While it is no doubt possible to have both diseases concurrently—and there certainly are the sporadic cases of MS being misdiagnosed as Lyme—odds hugely favor an original misdiagnosis of MS, particularly if you frequented an area known to be endemic to Lyme disease before your MS diagnosis. Sometimes it takes non MSey symptoms to finally expose the tickborne disease. Red flag.
Speaking of multiple diseases, there isn’t any reliable evidence that MS spawns or triggers other diseases, even those of the autoimmune variety. Indeed, a May 2023 study in The Lancet found that “multiple sclerosis had a particularly low rate of co-occurrence with other autoimmune diseases.” I italicized “particularly low rate” for your edification to remove any ambiguity. And then there’s this I-told-you-so, jaw-dropping kicker from the same study: “The socioeconomic, seasonal, and regional disparities observed among several autoimmune disorders in our study suggest environmental factors in disease pathogenesis.” Environmental factors like, oh, I dunno, ticks? Their presence explains all the aforementioned “disparities.”
So, if you have multiple sclerosis, itself a somewhat uncommon disease, it’s rather odd that you would also have one or more other rare diseases. Flummoxed physicians—instead of fingering one culprit, Lyme disease—will invariably start “disease stacking,” as more puzzling symptoms appear. Since Lyme disease can mimic some 200 other conditions, the list of alternative diagnoses can grow like an unwanted hair out of a mole, but there are the more common culprits for mistaken identity: rheumatoid arthritis is a biggie, so are heart issues such as POTS, vascular and cerebrovascular disease, chronic lung disease, and gastrointestinal disease. Even strokes, including those requiring a pacemaker, are often potential side effects of Lyme disease.
Because Lyme is such a brilliant mimic, red flags should go up whenever this sort of stacking starts happening. For example, MS doesn’t get confused with leukemia. Like ever. While it might sound like a wild stretch to connect Lyme to leukemia, it’s really only about as much of a stretch as reaching for your TV remote. Case reports of Lyme disease being mistaken for chronic lymphocytic leukemia (CLL) can be found in the medical literature, like the case of a 75-year-old man in Germany, “who was admitted to a rural hospital with ataxia, disorientation, and signs of progressive CLL disease.” He was due to start treatment for his leukemia but for insightful doctors out of the University of Cologne, who correctly diagnosed the patient with Lyme neuroborreliosis. Three weeks of intravenous ceftriaxone “resulted in complete remission of all symptoms.”
Now, of note, there are common conditions that aren’t typically tacked onto an MS diagnosis, like chronic fatigue syndrome and dementia. Of course not. Because, neuros will politely tell you, overwhelming fatigue and cog fog, well that’s just multiple sclerosis. That may very well be true, but “iceberg right ahead” sirens should be blaring louder with each disconnected health condition added to your medical chart. If you have been the recipient of potentially unwarranted disease stacking, I recommend politely channeling Logan Roy’s most famous phrase from HBO’s Succession when told you have yet another one. Red flag.
But let’s not heap all that blame on neurologists. Your own brain will try to explain away your symptoms as you invest further into your personal medical Ponzi scheme. Mine did with aplomb, explaining away Lyme disease pains as sports injuries! Wrists, toes, fingers, elbows, knees. Never mind that I rarely could remember hurting myself but, of course, I must have. Because, duh, I’m Dave. But if you toss that scarlet handkerchief for an instant replay review, you’ll likely get a different answer. Red flag.
If you’ve been diagnosed with multiple sclerosis and have managed to read this far, you almost certainly have collected a red flag or two. Or three or four. Heck, if you have any unexplained, wonky health issues whatsoever, there are likely flags in your closet. Maybe your palms now are a bit clammy and you are realizing that the uneasy feeling in your tummy isn’t from that sketchy breakfast burrito you ordered last night for a late dinner even though you weren’t really that hungry, but dang, breakfast burritos are always good at any rando hour and, besides, that breakfast burrito song got in your head and once the breakfast burrito song gets in your head all hope is lost, at least hope for a vegetarian laden, healthy meal not wrapped in a flour tortilla. Because, c’mon, breakfast burrito. Yum yum. But please, don’t work yourself into a tizzy with worry that you or a loved one may have Lyme disease just yet. The resulting tizzyness would be wasted.
To put all of this into perspective, you need to remember three salient points. First, based on my best estimations, “only” 30% of people erroneously tagged with MS have been misdiagnosed and have Lyme disease, which means 70% of those diagnosed with MS don’t, a substantial majority. (I put “only” in quotes, even though it translates to upward of a million people worldwide, but, I mean, that’s still less than two million who are living, legitimately, with MS.) Second, the odds of being misdiagnosed don’t change much with experience or stature. This uncertainty puts everyone with an MS diagnosis in the same leaky boat as your favorite MS columnists, bloggers, and, yes, even celebrities (money and fame aren’t accepted forms of currency). That means a substantial number of people who have built their lives around their MS diagnosis as advocates, like me, do not even have the disease. Which is, and I can say this from a personal perspective, awkward. Third, you could collect enough red flags to stock the entire color guard of a 400-person college marching band, and still not get the attention of most physicians, much less the attention of one of the world’s top doctors. Nobody seems to know anything about Lyme disease. And nobody appears eager to learn.
Navigating a potential misdiagnosis can feel like being stuck in a yak jam in Bhutan. So many yak-sized barriers.
That’s what happened when Randall the actuary broached the subject with his stem cell transplant physician Dr. Richard Burt, who had performed the treatment out of Northwestern in Chicago. His MIST protocol includes 9-10 days of intravenous cefepime, an antibiotic often used to treat Lyme disease as discussed in previous chapters. Maybe it was responsible for his early gains, he proposed? Like so many with MS, Randall’s transplant was a revelation. Until it wasn’t. I, too, felt fantastic for a few years after my transplant before my Lyme disease resurfaced, methodically eroding my abilities, the disease sanding away my freedoms so gradually that I almost didn’t notice the piling sawdust until I was in a wheelchair. And I, too, had asked my HSCT doctors at MD Anderson the same question.
We both got essentially the same answer. Collective shoulder shrugs. Never contemplated such a thing, they said. The clinical trials were already closed, the data was already disseminated, the journal articles were already published. But now Randall the actuary had another lifeline … from an open-minded MD who wasn’t concerned about retracting a published journal article: 30 vials of injectable ceftriaxone in hand. “First injection done,” he wrote excitedly in an email after initiating treatment. “Twenty-nine to go.”
Randall's completed course of ceftriaxone
My emails from Randall concerning his treatment stopped cold there. No, not because it wasn’t working, but because he felt that the urgency of texting or straight-up phone calls were more appropriate.
Seeing doctor today. 8 doses to go. Day 4: feeling returned to bottom of my feet. Day 8: could feel the sheets on my legs. Day 18: beginning to think the neuropathy in my hands and feet is actually gone. Muscles starting to respond starting with calves, then moving up to thighs, and then the whole pelvic area. These are all stiff and so not much help in actually doing anything especially with the ebb and flow of Herxing. Keep reminding myself of all the past failed treatments I’d hoped/believed were working to keep myself in check.
As Randall completed his 30 days of treatment, I was about to start on my own journey with ceftriaxone. UNMH called, scheduling my PICC to be installed January 18th, when I would also receive my first infusion and instruction for doing subsequent IV “push infusions” at home. Thankfully an appointment with my infectious disease doctor was not required, but I was assured that the doctor was recovering rapidly from his bout with Covid and may check in on me during my infusion. Medication was approved by my insurance, delivery was scheduled, and home health care was set up for weekly dressing changes and blood monitoring. This was finally, really, going to happen.
At that moment, I could not possibly have predicted how the coming months were to unfold. Nothing could prepare me. And nothing I’ve written could prepare you.
That’s because there is a twist coming. An unknowable, unbelievable, unimaginable twist, courtesy of our twisted friend, the spirochete. A twist that will revise the understanding of disease, dividing medical history into two—everything before the pages you are about to read, and everything after.
A twist that will upend it all.
The final chapter in Part III of Sit Down Before Reading, Chapter 36: The Bexfield Twist, is scheduled to be released in late summer 2023. Notices will be posted here, on the homepage, in the forum, and on social media when a date is secured and the chapter is ready for publication. Direct updates also will be provided to those who receive the SDBR newsletter (the link to sign up is at the bottom of this page). To readers who believe they may have Lyme disease and/or a coinfection, with the possible exception of delaying potentially irreversible treatment decisions (e.g., HSCT, Lemtrada), the author urges these individuals to remain on all treatment as recommended by their physician until instructed otherwise. Thank you for the patience, understanding, and the opportunity to share my story with you.