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Chapter 43: Brian

Updated: Apr 17

In third grade I kept a diary. For two days. (During the fall of 1976 I kept getting distracted by other more interesting endeavors, like riding my Big Wheel or teasing my sister Karen.) One of those two entries concerned the upcoming presidential election and the race between Jimmy Carter and Gerald Ford. Living in Alexandria, VA, a short drive to the White House, meant that talk of politics was frequent in the households of classmates, and we eight-year-olds had opinions drilled into us… by our parents. Apparently, in our blue-blue community, there were only two other classmates who shared my affinity for Mr. Ford: David White and Brian Miles. I never saw David again once I moved to California the next summer, after my dad got transferred by the Air Force. But Brian? We played together in my basement as kids and today we go out to eat regularly as adults, often spending holidays together. There is no one in my life outside my immediate family that I’ve known longer. But fate works in mysterious ways.

A year after I left the area, Brian, then a fourth grader, was skateboarding in the neighborhood as he often did, when a city bus approached him from behind. The driver gave a warning honk, except it didn’t warn, it startled. Brian fell off his skateboard, and as the bus passed, it couldn’t avoid his left foot, pulverizing his heel, instantly catapulting the elementary school student into a lifetime of disability and wound care. When I returned to the area years later as a 10th grader, I almost didn’t recognize him. He had fallen in with a different crowd, had failed a grade, and wore a sullenness that was extreme even for someone from Generation X. When I married Laura in 1993, I still invited him to my wedding. He declined. I shouldn’t have felt offended—he declined to attend his own sister’s wedding, too. That same day he officially became my brother-in-law.

Less than ten years later he was diagnosed with schizoaffective disorder, “a chronic mental health condition characterized primarily by symptoms of schizophrenia, such as hallucinations or delusions, and symptoms of a mood disorder, such as mania and depression.” Soon afterward he was on his way to Albuquerque to move back in with his parents, who had recently relocated to live closer to us.

I still remember our first awkward conversation post diagnosis as I struggled to find common ground to bond with my brother-in-law. Music maybe? What did he like to listen to? His fuzzy, medication-dulled brain churned out an answer I could relate to.

“The Go-Go’s!” I said, with the panache of a game show emcee confirming a correct trivia answer. I then proceeded to regurgitate all of my knowledge of the ‘80s girl band, never once pausing to wonder why my sullen BIL would be a fan-boy of an ‘80s band that sang “Our Lips Are Sealed”.

“Go-go music,” Brian corrected. As in, Da Butt by E.U., the popular DC funk band. As in, the music least like the Go-Go’s. We didn’t talk again through the rest of that car ride.

Brian has now lived with his mental disorder for over 20 years, surviving through multiple relapses including a few severe ones, yet still managing to live on his own with the help of social security disability and a special-needs trust set up by his parents. We try to see him every two to three weeks, and we’d like to do more, but Laura can juggle only so many mentally draining challenges. It’s hard on all of us. He tries. We try. On more than one occasion, Laura has openly said to me that she wished that she could have a “normal” brother. If only. But she knows that could never happen.

Or could it?

Post Haste

Laura K is a dear friend, whip smart, and a fellow advocate in the MS community. I spent my junior high years in her hometown, Beavercreek, Ohio, so we have more than just our diagnoses in common. She’s been reading my book, all of it, and like many, she is eager for answers to the questions I’ve been posing, occasionally sending along news or research that may be applicable to my memoir. But one article rocked her.

“A must read!!” The link went to a Washington Post article with a riveting, can’t look away headline: “A catatonic woman awakened after 20 years. Her story may change psychiatry.” But it was the subhead that motivated her and multiple readers of this memoir to urgently alert me with notes that included varying degrees of exclamation marks. “New research suggests that a subset of patients with psychiatric conditions such as schizophrenia may actually have autoimmune disease that attacks the brain.”

In addition to The New York Times, I also subscribe to The Washington Post, as I used to live in the area, worked in the sports department of The Washington Times, and have an affinity for their local sports teams. (Go Caps! Go Nats!) I, too, saw the June 1, 2023, article. And I, too, was shaken.

graphic image with spirochetes inside brain

Throughout my writings, I have been saying repeatedly that full-on psychosis is a proven, documented hallmark of spirochetes, the spiral bacteria signature of diseases like Lyme and syphilis. That it made no sense that autoimmune diseases like MS could cause the same carnage. That I didn’t buy it, and that the math and science I presented in Chapter 31 supported that conclusion.

As I started to read the Post article by Richard Sima, the nightmare of being erroneously committed to a mental health facility due to a missed case of Lyme disease—the exact fear I wrote about in Chapter 6 when I was experiencing my own psychotic break due to the tickborne disease—became shockingly real.

The young woman was catatonic, stuck at the nurses’ station — unmoving, unblinking and unknowing of where or who she was.

Her name was April Burrell.

Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself.

She was later diagnosed with schizophrenia, and after her family tried to care for her at home for several years, they were left with no choice other than to send her to a long-term mental health facility in New York. Fast forward through the Clinton, Bush, Obama and Trump administrations—along with scores of failed treatments ranging from antipsychotics to electroconvulsive therapy—when, after an “extraordinary coincidence,” a panel of 70 experts reexamined the patient, now in her 40s. Jaws dropped, as they “discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain. After months of targeted treatments — and more than two decades trapped in her mind — April woke up.”

The article also covered another woman with psychosis who had been diagnosed with schizoaffective disorder and then, a few years later, with… lupus. She woke up, too, after nearly 10 years. Their therapies consisted of pulses of high-dose steroids, rituximab, and cyclophosphamide, a chemotherapy that suppresses the immune system—all common therapies used in a variety of autoimmune diseases with varying degrees of success, including challenging cases of MS.

By now readers are familiar that rituximab can blunt and mask, somewhat, the symptoms of Lyme disease. So does cyclophosphamide, which has been used to treat the tickborne illness unresponsive to antibiotic therapy as an August 2023 case study highlighted when a patient experienced cerebral vasculitis and multiple strokes as a complication of neuroborreliosis. “Progression could only be halted by additional immunosuppressive treatment using cyclophosphamide.” Strokes are a known complication with Lyme and almost always overlooked despite repeated warnings from researchers.

The second patient in The Washington Post feature, Devine Cruz, made such a recovery that “she no longer meets the diagnostic criteria for either schizoaffective disorder or intellectual disability.” Today she is living with her mother while trying to play catch-up with life and learning after losing her entire teenage years to the misdiagnosis. April, meanwhile, has been living in a rehab facility for the past three years, although her recovery has slowed.

The doctor who treated April, as well as other doctors, “believe there are probably many more patients whose psychiatric conditions are caused or exacerbated by autoimmune issues.” Why? “The first conclusive evidence was in her bloodwork: It showed that her immune system was producing copious amounts and types of antibodies that were attacking her body… these antibodies were damaging her brain’s temporal lobes, areas that are implicated in schizophrenia and psychosis.”

To merely contemplate the possibility that families might have the opportunity to welcome back members lost for years, for decades, to mental illness—many homeless or institutionalized or imprisoned—seems borderline pie-in-the-sky wishful thinking… until you do the math and look closer at the science.

Antinuclear antibodies, or ANA, are a hallmark of lupus. They also occur in MS patients, and are, of course, found in Lyme disease. This should be of no surprise, as a 2021 Ukrainian research study, which conveniently featured a patient with Lyme who months later also “developed” lupus (a diagnosis reinforced by the presence of ANA antibodies), inevitably concluded that Lyme can “trigger” autoimmune disease. Researchers stressed how hard it is to get a proper diagnosis in this population as Lyme “may present with a wide range of clinical manifestations including symptoms of dermatological, articular, nervous, cardiovascular, cardiac, and ocular involvement” and then noted that “these are typical symptoms of many autoimmune diseases, particularly lupus.” But don’t be too alarmed, they said, pointing out that “the combination of Lyme and autoimmune disease is rarely encountered in clinical practice.”

Those Eastern European researchers are correct in at least one aspect. Lyme disease is rarely suspected when autoimmune disease symptoms present. Or, as this Richard Sima Post article makes clear, when mental issues and psychosis present. It couldn’t be Lyme. And it certainly couldn’t possibly chiefly be Lyme. Hah, no. For that to be true, all those autoimmune diseases that Lyme disease mimics would then have to have some prevalence of psychosis. That’s crazy talk! It would mean even those with celiac disease—where gluten must be avoided—are also coming down with mental illness abnormally often.

“People with a history of the digestive disorder celiac disease are three times more likely to develop schizophrenia than those without the disease,” reports research supported by Johns Hopkins, while a 2013 study found that nearly a quarter of patients develop neurologic or psychiatric dysfunction. Ominously, “schizophrenia may be the psychiatric disorder with the most robust relationship.”

Oh dear.

Rheumatoid arthritis? “Increased burden of psychiatric disorders in rheumatoid arthritis.” [source] Sjögren’s syndrome? “Unexplained neuropsychiatric manifestations can be the first sign of the disease.” [source] Psoriasis? “Psoriasis is linked with many mental disorders, both in the psychotic and neurotic spectrum.” [source] Inflammatory bowel disease? “In patients with IBD, several studies have described an increased frequency of various mental disorders, ranging from mild depression to severe form of schizophrenia and serious dementia.” [source] Type 1 diabetes? “There appears to be a high prevalence of mental disorders and associated need among people with type 1 diabetes.” [source]

There are more than 80 autoimmune diseases. And psychosis as a symptom suspiciously ripples among most of them, even those that appear benign or at least far removed from the brain and mental disorders. Raynaud’s, alopecia, even restless leg syndrome, which I didn’t even realize was an autoimmune condition to begin with. The neurological sleep disorder boasts “frequent (39%) coexisting psychiatric comorbidities,” reports a 2016 study.

Again, is this all a mere coincidence? Nothing more than a vast web of chance with serendipitous connecting dots, more home to tired conspiracy theories than competent detective work? I suppose it’s within the realm of plausibility. But I’d recommend following the advice of Agatha Christie. “Any coincidence is worth noticing. You can throw it away later if it is only a coincidence.”

I fear that trashcan of yours is going to remain empty.

If this is starting to get a bit too heavy, I’d like to introduce you to standup comedian Atsuko Okatsuka. I watched her special the other day and I nearly fell out of my wheelchair laughing. And crying, but not from laughing. Her grandmother has celiac disease. Her mom has schizophrenia. Her husband’s mom has schizophrenia. This is no joke.

Autoimmunity and Psychosis

In 2019, Danish researchers specifically looked at the relationship between autoimmune disease and psychotic disorders. The opening two sentences of the research study had me reeling.

The association between immunological processes and mental disorders was observed by doctors centuries before the immune system was discovered. Psychosis arising either with the occurrence or disappearance of acute fever has been described by many scientists from Hippocrates around 400 BC to Kraepelin around 1900.

Fever. The first sign of Lyme disease is often fever. And Lyme has been circulating in nature long before humankind. (Even if you believe an alternative beginning to mankind, the Garden of Eden assuredly was awash with blacklegged ticks.)

As I kept reading, it kept getting worse.

The vast majority of epidemiological studies have found a general association between autoimmunity and psychotic disorders. … A Danish study based on 7,704 patients with schizophrenia, found an increased prevalence by about 45% of the occurrence of an autoimmune disease, which was later confirmed in a Taiwanese population-based study. Regarding the risk of psychosis after an autoimmune disease diagnosis, a Danish nationwide study found this to be increased by 45%.

And worse.

Additionally, being diagnosed with schizophrenia increases the lifetime prevalence of autoimmune diseases. Two Danish register-based studies found that individuals with psychotic disorders had a subsequently elevated risk for autoimmune diseases by around 50%. Supporting this, the recent meta-analysis found that the risk of having an autoimmune disease was 55% higher among those with a prior diagnosis of a psychotic disorder.

The authors then broke down 20 specific autoimmune conditions and their associations between psychotic disorders. Celiac disease, multiple sclerosis, lupus, autoimmune thyroiditis, diabetes type 1, rheumatoid arthritis, psoriasis, Guillain-Barre, Crohn’s disease, and on, and on. Your fan favorites are there—ankylosing spondylitis, Sjögren syndrome, hypersensitivity vasculitis—along with many others, from autoimmune hepatitis to pernicious anemia.

Researchers homed in on one consistent link: the presence of neuronal surface antibodies in mental illness and autoimmune disease. Guess what other cohort enjoys “significantly higher” levels of these antibodies? Patients with Lyme disease, and tellingly, specifically patients with chronic or long Lyme. They also found connections with a dysregulated immune system: T cells, B cells, lymphocytes, oligoclonal bands, and “increased levels of pro-inflammatory and decreased levels of anti-inflammatory cytokines.” Those darn cytokines again.

They then landed on a telling theory.

Being exposed to viral or bacterial infection is known to increase the permeability of the blood-brain-barrier (BBB), which allows the entering into the central nervous system of immune cells and pro-inflammatory cytokines. This in itself might allow an inflammatory state in the brain, which has been theorized to play a role in the development of psychotic disorders. It may also explain the synergistic effect on risk of schizophrenia of having both an autoimmune disease and prior infections, as BBB disruption might also allow the entering of circulating antibodies. Supporting the role hereof, signs of a disrupted BBB has been found in patients with schizophrenia with evidence of increased albumin CSF:plasma ratio and increased levels of circulating s100-b.

Increased albumin!? Hey, a key diagnostic marker that I pointed out earlier in Chapter 39. I’d pat myself on the back, but a) I’m about as flexible as a 2x4, and b) I’m too curious not to immediately look up any potential association between Lyme and this s100-b stuff. And, lookie, here’s a recent 2022 Chinese study that says the S100 calcium-binding protein B… oh, for tā mā de’s sake. (Readers, use your powers of deduction to determine what I just wrote. Or Google curse words in Mandarin.) “S100B may have a key role in the pathogenesis of Lyme neuroborreliosis. This is the first study to provide a link between S100B and LNB, and could advance a new diagnostic method and treatment for LNB.”

As I finished reading that Danish study, I wondered if it could get any more damning. Why, sure it could. Those Danes even looked at stress, a well-documented trigger of latent Lyme disease. I’ll let them take it from here.

Psychological stress such as sexual abuse, physical abuse, emotional/psychological abuse, neglect, parental death, and bullying, both in childhood and later on, has been associated with increased risk of psychotic disorders in multiple studies. A Swedish register-based study found that stress-related disorders increased the risk of subsequent development of autoimmune disorders and, accordingly, in many other studies, stress have been [sic] found to be associated with disease onset and disease exacerbations in several autoimmune conditions.

They concluded their research paper with a final sentence that brings this story full circle and back to The Washington Post piece. “Intensive immunotherapy in lupus patients with psychosis massively benefits psychiatric symptoms.”

If Lyme disease is routinely being mistaken for lupus and a swath of autoimmune diseases, and lupus and a swath of autoimmune diseases are routinely being mistaken for schizophrenia, what does it all mean?

Dave looking incredulous

I’m drained. Spent. This can’t be happening. Now it’s no longer a question of whether Lyme is being mistaken for schizophrenia and other mental disorders, the question is how often. The Danish researchers wondered that as well, at least in terms of autoimmune disease. “The potential autoimmune-mediated psychosis group might only be a small part of a broader immune-related psychosis group, and an even smaller fraction of the overall psychosis group.”

Might only be a “small part,” they mused. You might have guessed that I'm not so sure about the “small” part.

The Bigger Part

The connection between schizophrenia and Lyme disease dates back decades. A 1994 research study, Geographic Correlation of Schizophrenia to Ticks and Tickborne Encephalitis found that “the spreading foci of Lyme disease and its primary vectors, Ixodid ticks, correlate significantly with high schizophrenia rate areas.” Antibiotics, in particular tetracyclines like doxycycline and minocycline, have been found effective in treating cases of the diseases in studies, and one noted Lyme physician reported that working in combination with the psychiatrists of patients, “we were able to reduce, and in some cases eliminate, all of their antipsychotic medication,” reported an article in Psychology Today. “They remained clinically stable as long as they remained on antibiotics. Their psychiatric symptoms returned once they were no longer being treated for Lyme and associated tick-borne disorders, as these organisms have been shown to be able to establish a persistent infection in the body.”

There is also clear evidence that schizophrenia, Lyme, and the disease bestowed upon me, MS, all play in the same sandbox. “Geographical correlations between MS and schizophrenia prevalence rates have been reported worldwide,” reports research out of Switzerland. “In the north of the USA, the states with the highest rates of schizophrenia score significantly higher rates of MS than the states with the lowest schizophrenia rates in the south. Findings that immigrants from tropical low-risk areas are more likely to contract schizophrenia or MS than those who stay behind have been widely replicated and are now considered strong epidemiological risk factors.”

The author, Dr. Markus Fritzsche, pointed to myriad other connections between the diseases, his observations reinforcing many findings discovered by this memoirist. The fact that “the rule of MS varying with latitude is violated in central Europe.” His pointed reflection on “the extreme rarity of MS in native Africans.” How Lyme disease is an infection with potentially significant latency, as “the pathogen's success of transmission also depends on its ability to replicate and survive within a host for long periods.” And how treating with interferon beta can unleash “a cascade of ruinous inflammatory cytokines” in cases of MS and is associated with disease severity.

His chief findings from his research, however, focused on the likelihood that birds, migratory seabirds in particular, are the vector that spreads Lyme to areas not endemic to blacklegged ticks, explaining that this variability could very well be the cause of unlikely clusters of both MS and schizophrenia sporadically seen through time. And that there is evidence that Lyme could be passed down from mother to unborn child. “It is hoped that this correlation might encourage a new direction of neuropsychiatric research in molecular epidemiology.”

sea birds over the ocean

So much for hope. His research was originally published more than 20 years ago in 2002.

Could my brother-in-law’s mental issues be the result of a Lyme infection passed down from his mother, who had been diagnosed with rheumatoid arthritis? If RA is merely a flavor of Lyme disease, and spirochetes are a known significant player in mental disorders, the reasoning appears not merely plausible, but sound. Could he have picked up the disease playing hide-and-go-seek in Grandma’s sprawling backyard or skipping through the woods of the Shenandoah mountains with his little sister? Just as likely. That means there is a chance—a real, honest-to-goodness chance—that with proper treatment for Lyme, Brian could “wake up” like April and Devine and become the brother Laura wishes she had. But there is a looming potential problem. He needs to stay healthy, a tall order for someone in his shoes.

For people with mental disorders, getting sick often leads to “‘diagnostic overshadowing’ – the misattribution of physical symptoms to mental illness – and other challenges involved in the diagnostic process of people with mental illness who present in emergency departments with physical symptoms.” Even if doctors can look past mental illness, particularly nasty autoimmune diseases lurk, as “the risk of developing Guillain-Barré syndrome, an autoimmune disease attacking peripheral nerves, has been found to be increased markedly in individuals with schizophrenia.”

To merely contemplate the possibility that families might have the opportunity to welcome back members lost for years, for decades, to mental illness—many homeless or institutionalized or imprisoned—seems borderline pie-in-the-sky wishful thinking… until you do the math and look closer at the science.

According to the World Health Organization, it is estimated that schizophrenia affects some 24 million people worldwide, translating into 1 of every 300 individuals (0.32%), or 1 out of every 222 if considering adults only (0.45%). Now weigh the fact that over 1.2 billion people have Lyme disease antibodies, evidence of a past or current infection. If only a scant 2% of those people were to be erroneously diagnosed with schizophrenia—it’s estimated that psychosis affects upwards of 10% of Lyme patients, so that assumption is well within the bounds of reason—it would add up to an incredible 22 million cases.

Once again, I’ll ask the same question as before. Where are they? Where are they? WHERE ARE THEY? You can’t hide 22 million mentally unstable people in basements and under floorboards. I should know because I was one of them. I personally plunged into those swirling waters of psychosis, absolutely terrified that I was about to be institutionalized, as sleepless nights ratcheted up my paranoia to obscene levels. Scrambling for a lifeline, I was rescued only by a life ring of doxycycline prescribed by my family doctor, the one doctor who believed me. The one doctor who ignored the recommendations of “the experts” not to treat psychosis with antibiotics. Without his help and trust, I was destined to become a statistic, another case of unexplained dementia to add to the rolls of lost souls. So sad, so much promise, the collective “they” would say, as they would watch me drown from afar, shaking their heads in resignation as my diseased head slipped below the surface of sanity.

Where would I have ended up? My delusional concerns were warranted. Half of all patients in mental institutions carry a diagnosis of schizophrenia, says the WHO. But is it the right diagnosis? Twenty years ago, investigators followed the breadcrumbs and discovered 33% of psychiatric patients in a Prague facility tested positive for Lyme antibodies—of note, many with active Lyme, like myself, never test positive—well above the rate of healthy controls. “In countries where this infection is endemic, a proportion of psychiatric inpatients may be suffering from neuropathogenic effects of Borrelia burgdorferi,” the researchers warned.

The collective “they” would disagree. You all must be confused, they would say. Here’s some more clozapine, they would say. You’ll all feel better when this fantastical thinking subsides, they would say.

The same pattern is emerging in prisons. An astonishing 56% of those in state prisons report having recently had or currently have a mental health problem, with 43% previously diagnosed with a specific disorder, 14% of which were serious. Following the ratio seen in autoimmune disease, “the prevalence of every single mental health condition [in prison] is higher for women: Rates of post-traumatic stress disorder are almost three times as high in women as in men (34% of women versus 13% of men). Rates of manic depression, bipolar disorder, and/or mania (reported by 44% of women), as well as depressive disorders (49% of women) are double the rate compared to men.” Clearly, not all mental issues can be blamed on rogue spirochetes and not all crime is committed by the mentally unstable, but for those incarcerated, a stomach-churning reality has emerged: psychosis driven by Lyme disease or similar coinfections has become the unmissable elephant in the room.

Yet cases of Lyme being mistaken for schizophrenia, bipolar disorder, Alzheimer’s disease, and autism spectrum disorder lurk a mouse click away. The husband diagnosed with early onset Alzheimer’s featured on the Today Show in June of 2022. The young budding musician diagnosed with depression, bipolar disorder, then chronic fatigue before Lyme was discovered in The Daily Mail. The little boy diagnosed with ADHD and autism spectrum disorder who struggled for years only to be mostly cured more than a decade later. The harrowing story of a 14-year-old boy, deemed to have schizophrenia by his psychiatrists, until his undeterred father found the true cause. The heartbreaking editorial in The San Francisco Chronicle from parents who lost their 37-year-old son to suicide. After testing negative for Lyme disease twice, Jonny spent the next year in a downward spiral with the strangling diagnosis of schizophrenia—his correct Lyme diagnosis arriving too late to rescue him from his broken brain and stop him from taking his own life.

Text excerpt from Swamp Boy by Kris Newby

An excerpt from Swamp Boy by Kris Newby, describing the life of the 14- year-old boy with schizophrenia whose psychosis was later attributed to be an infection with Bartonella; published in Now This "Epic True Stories"

No form of mental illness is spared as a potential byproduct of Lyme disease, even variations that seemingly should have zero connection to a tickborne illness. Take the aforementioned post-traumatic stress disorder, or PTSD. It's mainly what war-torn soldiers and school-shooting victims come down with, right? Good guess, but that’s not the typical population that is affected. Instead of the battle-scarred, it is twice as common in females, typically as a result of other trauma. And what else is common in women? “PTSD is co-morbid with autoimmune diseases, including inflammatory bowel disease (IBD), rheumatoid arthritis (RA), multiple sclerosis (MS), and psoriasis,” reports a 2022 study. “Notably, the risk of an autoimmune disorder is higher in individuals with PTSD,” supporting the findings of a 2018 study. “Exposure to a stress-related disorder was significantly associated with increased risk of subsequent autoimmune disease.”

And about those war-torn soldiers and school-shooting victims. Like those incarcerated, guess what is reliably in their orbit, circling their conditions with the consistency of the sun? Autoimmune diseases and mental disorders. A 2020 study followed 120,000 military personnel for over 5 years and found that the risk of getting diagnosed with an autoimmune disease after a case of PTSD soared 58%. There isn’t an age restriction. Harvard University and Massachusetts General Hospital researchers analyzed 15 years of claims data for a 2023 study concerning childhood gun injuries. Those poor kids. “Through one year after a firearm injury, children and teens experienced a 117% increase in pain disorders, a 68% increase in psychiatric disorders, including PTSD, anxiety, depression and psychosis.”

What about bipolar disorder and autoimmune disease? I found an enlightening 2021 study that did a systematic review of the two conditions. Oh hellfire. “The meta-analysis demonstrated that the incidence of bipolar disorder was significantly increased in patients with autoimmune disease compared to patients without autoimmune disease.” I then started to look up Alzheimer's disease and immediately began wishing I had something to puke in. Early onset AD is rare (5% of cases) and usually hereditary (more than 75% of cases). That science checks out. A July 2023 study confirmed that there is a lower autoimmune disease prevalence in patients with early onset Alzheimer's disease compared to cognitively normal controls. But late onset? “Evidence from clinical and molecular studies suggest that chronic diseases, including diabetes, cardiovascular disease, depression, and inflammatory bowel disease, may be associated with an increased risk of Alzheimer’s disease.” Classic disease stacking. Recent research has even proposed the theory that late onset Alzheimer’s is wholly an autoimmune disease.

graphic depicting multiple journal article titles

I feel as if I am drowning again as I write this. Mentally, physically, it’s just so much. How many people infected with Lyme (or a similar infection that can lead to mental instability like bartonella) are trapped in their own heads, unable to escape their treatable mental illness? How many families have been ripped apart by suicides that didn’t need to happen, incarcerations that didn’t need to happen, homelessness that didn’t need to happen, plodding dementia that didn’t need to happen, institutionalizations that didn’t need to happen?

Now when mental illness leaks into the morning paper and evening news, I can’t help but wonder. The erratic homeless Michael Jackson impersonator who was strangled on a New York subway car? He grew up in New Jersey. The paranoid young man who attacked a flight attendant with a broken spoon? The suburbs of Boston. And then I wonder, as experts continue to overlook Lyme, how many Aprils and Devines are languishing in psychiatric facilities, tragically untreated with a treatable disease?

And then I look in the mirror. I was a “lucky one.” And yet.

Although oral antibiotics have been keeping me afloat—my frightening psychosis hasn't returned, my bladder is still behaving, and my disability hasn't fallen below my baseline—recovery has stalled like Grandpa’s aging VW Rabbit when I failed to learn to drive stick in the summer of 1985. Describing my leg strength is a laughable misnomer. What strength? From being unable to pedal my exercise bike a single revolution, to 10 uninterrupted minutes of spinning, to back to zero revolutions. The dramatic gains in upper body strength and coordination equally have all but exited stage left. My numbness roars, my spasticity barks relentlessly, my joint pain in my left arm and wrist refuses to abate. My poor ankles, at least what you can make out as ankles, are nearly the size of honeydew melons.

Depleted and defeated, I asked my infectious disease doctor at UNM Health if he would be amenable to giving me additional courses of IV antibiotics. He would… if I had tested positive for Lyme disease. And if the original 50-plus days of ceftriaxone had made a marked difference. He then cited medicine’s “do no harm” mantra. The lawyers and his colleagues would argue that there is no objective evidence that I have Lyme, and he would have to agree. The answer was no.

I told him I understood. It now falls upon me—and my words and my research in this memoir—to save myself and all my new friends.

Head between knees, everyone. Slow breaths. We’re far from done. Perfect storms in autoimmunity are colliding with perfect storms in psychiatry and then colliding with a worst-case scenario in infectious disease.

dark storm clouds over Lake Tahoe

That do-no-harm mantra? As Lyme disease continues to be misdiagnosed, undertreated, ignored, mocked, and dismissed, the horrifying number of people who have been harmed would appear to be unknowable and incalculable.

Until our next twist, that is.


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