Lyme Loonies, Part 2: When Mental Illness Is Physical Illness

Yesterday, I discussed how Lyme disease made me crazy, and I ranted about stigma assigned by people—including medical professionals—to those who have mental illnesses. Now I want to talk about the scapegoating not of patients, but of symptoms.

There is a condition called “general paresis of the insane” that is characteristic of progressive, untreated syphilis infections. Syphilis is caused by a spirochete-type bacterium, Treponema pallidum, that can infect the brain and nervous system. People who have untreated syphilis are known to become severely mentally ill as a result of this brain damage, and also suffer other neurological effects.

Another spirochete-type bacterium, Borrelia (B. burgdorferi, B. mayonii, B. garinii, B. miyamotoi) sometimes uses its corkscrew shape to drill its way into the brain and spinal column. Like Treponema, Borrelia bacteria can cause brain lesions and inflammation. Depending on the species, Borrelia infections are commonly called Lyme disease or tickborne relapsing fever. The term “neuroborreliosis” refers to central nervous system infection by Borrelia bacteria, both the kind that cause Lyme disease and the kind that cause relapsing fever. According to a 1998 article published in Clinical Infectious Diseases, a publication of the Infectious Diseases Society of America, “...some tick-borne species of relapsing fever agents, notably B. turicatae in the Southwestern United States and B. dutonnii in Africa at present, commonly invade the CNS early in the infection. Oral antibiotics for one to a few days may eliminate the spirochetes from the blood in these cases, but it is likely that the infected brain provides a reservoir for spirochetes to repopulate the blood once antibiotics have been withdrawn.”

Sexually transmitted syphilis and tick-transmitted Borrelia are regarded as biological “cousins,” both being spirochetes, an otherwise uncommon form of bacterium.

It is curious, then, that medical doctors who suspect syphilis infections likely would regard mental illness-type symptoms as evidence of syphilis infection, whereas a great many medical professionals who see patients who suspect they may have Lyme disease instead regard mental illness-type symptoms as evidence that the patient has no physical illness at all. In other words, mental dysfunction is a long-accepted symptom of syphilis, which is always treated with antibiotics (except of course in the case of the Tuskegee experiment); however, it is to the contrary common for Lyme patients who present with similar symptoms to be denied antibiotic treatment and instead prescribed antidepressants or other psychoactive medications. Of course, to deny antibiotics to a syphilis patient would be unconscionable, as the infection would persist and likely kill the patient.

Countless Lyme disease patients are dismissed by medical professionals for years before they are properly diagnosed and treated. Many claim that Lyme disease tests are highly flawed, notoriously so, and if these and blood tests and other labs come back negative/normal, many doctors end the diagnostic process there and refer patients to mental health professionals. Some skip the referral and simply prescribe antidepressants and antianxiolytics themselves. In cases of psychiatric symptoms being caused by latent infections, the masking of symptoms with psychiatric medications would facilitate ongoing damage to the patient by the untreated infection.

This, again, reflects the design of the 40-year-long “Tuskegee Study of Untreated Syphilis in the Negro Male,” in which black American men were unknowingly enrolled in a study designed and administered by the United States government to track the slow degradation of their health, and in most cases their ultimate deaths, from syphilis even though a cure—penicillin—was readily available. (In what would appear to be a modern-day parallel, the federal government of Canada in 2014 passed a law whose preamble states “the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness.”)

In the late 1990s and throughout the 2000s, my full-time gig was to read NIH-sponsored research about substance abuse, addiction, and mental illness and to write publications about these health problems to encourage accurate depictions of them in television and film. A decade of reading daily research amounts to a copious quantity of information, and I was an active part of a nationwide movement to recognize that addiction is a brain disease, and that mental illness is a health condition; science no longer supported or abided either addiction or mental illness being viewed, discussed or depicted as a moral failing. Both, though still not well understood, have physiological roots as well as behavioral ones.

It’s difficult to accept that in 2017 I have to argue the same about Lyme disease. Lyme is well understood to be caused by an infectious agent. What happens when patients become increasingly ill even following short-term antibiotic treatment is hotly debated—one side of the argument cites evidence of persisting infections; another claims that all Lyme infections are easily cured at any stage of infection with a short course of antibiotics and without exception; and more recently others have fallen somewhere outside of these boundaries, suggesting that an acute Lyme infection may trigger sometimes-severe autoimmune conditions that are not well understood in some patients.

As mentioned in part one, at least one former NIH official—the one charged with the nation’s Lyme disease research program—described people with Lyme disease as “Lyme loonies.” Not publicly, but clandestinely in internal NIH and CDC emails that were discovered via a Freedom of Information Act (FOIA) inquiry by the Poughkeepsie Journal.

Lyme and multiple sclerosis can be indistinguishable from a clinical perspective, and that includes both physical neurological effects and neuropsychiatric ones. MS patients in some cases could be described as “loonies,” too, and sadly in some cases they too are dismissed during the diagnostic process as “head cases,” referred for counseling or psychiatric treatment.

What’s troubling is when patients with either Lyme or MS do not exactly fit diagnostic criteria. I fell into this category for years: doctors told me that I had many telltale MS symptoms, but not enough to add up to an MS diagnosis. And so the verdict was...wait and watch. Maybe, a neurologist told me, my then- unremarkable brain scan would reveal lesions in coming years. That would be enough to call it MS. In the meantime, that same doctor suggests that I “take a nice, long beach vacation...I’d be surprised if all your problems didn’t go away. If they don’t, you should consider seeing a counselor.”

I found my psychiatrist, she loaded me up on medications because of the severity of my anxiety and depression and then, after a while when I casually said “I’m crazy,” she urgently told me, “no, David, you’re not crazy. You’re sick.” And she meant physically sick.

Psychiatric medications helped some of my psychiatric problems—the heavy veil of depression lifted, and they took the edge off my social anxiety, although that persisted—and exacerbated others. The slight trembling I had in my hands and head, especially when I was hot, became visible and Parkinson’s-like under the influence of Wellbutrin.

To the dismay and disapproval of public health officials who may read this, the honest-to-God truth is that the only medication that significantly improved my psychological problems turned out to be antibiotics. This is my reality. And I wish that it weren’t. And even I questioned it because of all the research I had done in the midst of my diagnosis and treatment. I had read that antibiotic treatments may be effective in some Lyme cases because those Lyme patients who are successfully treated are actually delusional, and the effectiveness of treatment is attributable to placebo effect. Amy Tan wrote in the New York Times that “I have my life back but I am not cured. If I go off antibiotics, the symptoms march back. I have permanent bodily damage, including epilepsy, a consequence of 16 lesions in my brain.” After my health improved roughly 85-90 percent following about six months of combined oral antibiotic treatment, I discontinued the treatment and my symptoms indeed marched back like a vengeful army. I resumed the treatment and my symptoms retreated. This is a consistent experience of countless people I’ve met, communicated with and read about—and many of these are people who had been previously misdiagnosed with a great number of other diseases, and treated ineffectively for them. It seems unlikely that the consistency of these experiences—roughly consistent symptoms, consistent misdiagnoses (often MS, fibromyalgia or chronic fatigue) with attendant consistent treatments (immunomodulators, pain medications, and others) that failed to improve their health and in many cases which made their symptoms worse—is anecdotal, yes, but when taken as a whole it certainly supports a case for antibiotic treatment having some physical effect on improving severe symptoms. Some have suggested that the improvement may be due to anti-inflammatory action of some antibiotics rather than the actual antimicrobial activity—but this, too, seems questionable when considering that many patients (including this one) had little to no relief from anti-inflammatory painkillers but respond positively to antibiotics. To say that all of these patients, with all of their commonalities, are delusional and share a pathological bias toward imagining that antibiotics and only antibiotics improve their imagined health problems seems to me to be a highly flawed and convoluted speculation.

Contrary to journal articles authored by Infectious Diseases Society of America board members that call Lyme disease “wishful thinking,” I wish that Zoloft had even half the positive effect that antibiotics have had. Why? Because doctors have been eager to give this drug to me throughout my life, even when it didn’t seem to make sense to do so. In my mid-20s, I developed what I thought must be asthma out of the blue. It lasted for months, and I would wake up gasping, and had to discontinue aerobic activities because I had repeated “attacks” of highly labored breathing. I went to my general practitioner—at the time the only doctor I had seen as an adult—and she gave me Zoloft. She didn’t check my breathing despite my complaints about not being able to catch my breath. Instead, she asked if my job is stressful (yes), if I am ever depressed (yes), and her diagnosis as a result of these answers was anxiety. I was dubious but deferred to her professional expertise, and I popped the pills. My breathing did not improve in the least, and after a few months I realized that I had become emotionally numb to everything positive and negative in my life. I discontinued the medication. Eventually the breathing trouble went away—for a while. Having been diagnosed with a mast cell activation disorder a few months ago, I now have an explanation for the breathing difficulty that first surfaced over a decade ago. (Note this important related article.)

Zoloft is given away by doctors like it’s candy on Halloween and, frankly, antibiotics are too. Every time I go to my local Harris Teeter grocery store—every time—I am jarred by a giant vinyl sign at the entrance that advertises FREE ANTIBIOTICS to new pharmacy customers. Antibiotics seem to be chain drug stores’ answer to PBS’s and NPR’s tote bags.

Antibiotics are doled out like fun-sized Snickers bars—except when patients are diagnosed with Lyme. With that diagnosis, the IDSA has waged an unparalleled campaign against extended antibiotic treatment, stating that extended antibiotic therapy—even if it improves patients’ health—poses too great a risk to these patients’ personal health, as well as public health because of the possibility of antibiotic-resistant bacteria developing. The CDC agrees with this reasoning.

Oddly, the IDSA and CDC have waged no such war on the common months—or years-long prescription of tetracycline antibiotics—the same used as first-course treatment for Lyme—to treat acne, a primarily cosmetic health problem. Why does the same treatment pose major risks for patients who are sometimes so severely ill that they can’t work, go to school or lead productive lives, but not for other patients who want clear complexions?

I asked Jean Patel, deputy director of the Office of Microbial Resistance, National Center for Emerging Zoonotic and Infectious Diseases at the U.S. Centers for Disease Control and Prevention (CDC), last year during an interview about antibiotic-resistant bacteria. Here’s part of that exchange:

Patel: Tetracyclines are a commonly used antibiotic because they're a type of antibiotic that work for lots of different types of bacteria, and so they can be used for lots of different types of infections. Also, tetracyclines are available in an oral formulation, and that's a lot easier to take than an intravenous antibiotic. So that it's easy to take and also that it's effective on a lot of different bacteria, that's why it's used in a lot of different places.
DMC: I'm curious about the use of these antibiotics over a longer term. For example, dermatologists prescribing doxycycline for months, sometimes years, for acne. But then the CDC has an interest in limiting doxycycline administration for Lyme disease to a very short duration. Is there a difference in why this particular drug can be prescribed for one health concern in one way but not for another health concern in the same way.
Patel: I think all these uses of antibiotics are under new levels of scrutiny because of the recent problems we have today. So where we've seen these prolonged prescriptions of antibiotics, those groups are having to step back and look at their prescribing practices to see if it's really a prudent use of antibiotics in this new era of resistance.

I’ve read a great deal of criticism about the use of antibiotics to treat Lyme, and little about prolonged antibiotics used to treat acne. In the above video, a dermatologist asserts confidently that “when taken as prescribed, long-term antibiotics taken for acne are generally safe.” In this video, a young woman talks about her experiences being prescribed antibiotics for four years. She chose to discontinue the treatment herself, with the implication that the treatment would have continued, potentially indefinitely, if she chose to keep taking the antibiotic for her cosmetic condition. Given that doxycycline and other tetracycline-class antibiotics are the primary treatments for both Lyme and acne, it is confounding that CDC-endorsed guidelines prohibit doctors from prescribing these medications for longer than 28 days for a multi-systemic infectious disease that can cause severe neurological damage (and cardiac arrest), but doing so for years on end for a purely cosmetic condition is uncontested. I have asked many different officials for an explanation of this discrepancy and never have been given a direct answer.

The bottom line is that, in my personal experience, antibiotics proved—accidentally, in a sense—to be the most effective psychiatric medication I’ve taken. I’m not the only one.

On her personal website, Amy Tan describes one of her most upsetting Lyme symptoms:

More symptoms cropped up, including a bizarre one. I had visual hallucinations: picnickers from a Seurat painting standing in the room, two girls jumping rope, numbers spinning on an illuminated odometer, a fat poodle hanging from the ceiling, aliens suspended on a string that looked like they were made for B movies. None of these hallucinations had any meaning to me, and they lasted only about 20 seconds at most. I was not frightened by them. I was fascinated.
I mentioned the symptoms to my doctor and he thought it was odd, because I did not act as if I was psychotic. I was prescribed anti-depressants, Prozac. I then developed nightly nightmares in which I was killed every way you don't want to imagine. I saw victims of war blown apart before I too was killed. I was drowned, suffocated, shot, decapitated, knifed, electrocuted. I fell from tall buildings, was in planes out of control. I acted out my dreams, flailing about, running in my sleep, yelling, punching at lamps or my husband, and once landing on my head in a dive to tackle my dream assailant. I stopped taking the anti-depressant and the nightmares stopped.

Likewise, Ally Hilfiger developed such severe mental health problems that her father, fashion icon Tommy Hilfiger, committed her to a mental institution. After years of seeking help for physically torturous health problems, it took a psychiatrist familiar with Lyme disease to recognize her symptoms and get her treatment. With treatment, her severe psychiatric problems diminished.

And then—believe it or not—there are cases among non-famous people, some of which even make the news. Many of these, tragically, are suicides.

In 2009, NBC News producer John Baiata wrote about his sister, Sue, who killed herself after a long battle with Lyme disease. Her story is like so many other stories: She went through a two-year adventure in misdiagnosis before being properly diagnosed and treated. Her symptoms nevertheless became progressively worse, to the point at which she was found in bed foaming from the mouth after trying to end her life with a pill overdose. Baiata writes:

A common enemy soon emerged, however. Her doctors wanted her committed to the psychiatric ward.
We argued vehemently that she was not crazy. She was suffering from the advanced stages of a debilitating disease, and had left behind a reasoned, lucid note explaining her actions.

I’ll interject my opinion here and say that when the “common enemy” so commonly becomes doctors themselves, there may be a major unresolved problem in medical practice. That’s a radical and unpopular opinion, I understand, as we are supposed to accept the full and absolute authority of medical professionals. And in most cases we do. In cases of emerging diseases, though, particularly stigmatized little-understood ones such as Lyme today or HIV 30 years ago, in many cases doctors do become common enemies. I wish that doctors who refuse treatment or deny these illnesses would meditate upon the possibility that their field may need to revisit the commonly held opinion that “Lyme loonies” are simply problem patients who are best treated with psychiatric medications.

Ultimately, Baiata’s sister was successful in taking her life. Baiata suggests that his sister didn’t leave a suicide note after her second attempt because everyone important in her life by then understood how unbearable her life had become. Baiata’s ultimate remembrance of his sister’s story:

My sister fought valiantly against a disease that had diminished the quality of that life to a level that was no longer acceptable to her. It never once diminished her spirit. Through it all, all she really wanted was relief to her pain, and for someone to believe her story.

He wrote that in 2009. As you read this, countless patients are going through exactly what Baiata’s sister went through, and their loved ones are going through what Baiata went through. Still, the medical community overall has little to no interest in helping patients like Sue Baiata, and still they regularly tell patients like Sue Baiata that she just needs a good therapist—never mind the excruciating pain. Just feel better already.

In 2013, a CNN iReport story called Lyme disease and suicide “an ignored problem.” The author argued several speculated reasons why suicide risk is so high among Lyme patients:

  1. A lack of properly educated doctors
  2. Lyme patient isolation
  3. Debilitating physical and cognitive illness that becomes unbearable
  4. A feeling that the patient has become a burden to loved ones
  5. Depression as a psychiatric result of Lyme disease infection
  6. Hopelessness brought about by watching other Lyme patients die

The first point, summarized by the CNN iReport:

As the patient gets sicker, but the inaccurate testing is not showing up any cause for the symptoms, the doctors and patients alike start to get frustrated. Patients spend all their money on treatments and different doctors without getting any real concrete answers. This leaves the patient just drained and feeling hopeless. You grow up thinking when you are sick you can turn to doctors. With Lyme, this is not the case. Sometimes they become your worse enemy.

This pattern is troubling and it can’t go on.

We can do better. But will we?

Maya Angelou famously said that “when you know better, you do better.” We know better now,mul and so we need to address Lyme disease’s mental health characteristics the same way we do those of syphilis: as symptoms of a physical illness, and not as the “loony” cause of imagined health problems.

Fortunately, some people who know better do better. My psychiatrist told me recently that she has a new patient who was referred to her by a doctor. “Her story is the same as yours,” my doctor told me. And so my doctor, recognizing the neurological and inflammatory symptoms that coincided with her psychiatric ones, urged her patient to be tested for Lyme disease. Foregone conclusion: Her new patient tested positive for Lyme. She had been to countless doctors, and none of these doctors even considered it and ultimately one shipped the “loony” off to a shrink.

Doctors and nurses, you’ve got to believe your sick patients when they tell you they are sick. It is counterscientific to assume that they’re not just because laboratory tests sometimes can’t explain what is wrong with them. Consider that 100 years ago, without the ability to see brain lesions through MRIs, “crazy” people with physiological illnesses were tied down in beds in public mental institutions, assumed to be dangers to public safety. In reality, they were sick and deserved compassionate care. We know better now. And I’m telling you—along with a community of thousands of people who are desperately trying to be heard—that people with Lyme disease are dismissed in the same way today, and now that you know better, you’d better uphold your Hippocratic oaths and do what you can to help them instead of blaming them for being so goddamned difficult to figure out.

It’s not only Lyme patients who are dismissed in this way. This 2003 Israel Medical Association Journal article discusses “Fifty consecutive MS patients [who] were questioned on their early symptoms, their mental status, the disease course until the diagnosis was confirmed, and the different diagnoses they received.” Of the 50, 29 (58%) were given 41 misdiagnoses by an average of 2.2 specialists each. Complaining of symptoms typical of multiple sclerosis, 10 of the 12 women (83%) and three of six men (50%) were told by specialists that they had “psychiatric or medically unexplained symptoms.”

Reflect on that for a minute. The majority of women and half of men who had multiple sclerosis, a severe degenerative neurological disease, were told that the cause of their health problems was mental illness or medically unexplained. Simply by grouping these two diagnoses together I would argue that we can see a clear bias: Many medical specialists who don’t know what is wrong with their patients either A) tell their patients that their physical disease is “all in your head,” or else they B) tell their patients that no medical explanation is possible.

Another study observes that “ Cognitive and psychiatric disorders have long been described in MS. ... Psychiatric symptoms mainly include depression and anxiety. Depression is generally moderate, but there is a risk of suicide that is clearly higher than in the general population...Mild elation and pathological laughing and crying can be associated and are more frequent in case of severe disease. Cognitive disorders are observed in 40 to 65% of the cases at any period of the disease.” So MS (as well as Lyme) is positively associated with both psychiatric and cognitive diseases, likely as the cause or a contributor to these diseases. In other words, the brain disease probably causes the mental symptoms, and yet in the majority of cases the mental symptoms are assumed to be the root of any attendant physical health problems, and oftentimes psychiatric medications are prescribed as a Band-Aid to pacify patients.

The commonality between the two is that in the majority of cases, the specialists put the onus on the patient in their official diagnoses rather than accepting responsibility and saying, “I can’t discern the cause, and so this case warrants further investigation.” This type of ego-centric medical practice is a detriment to the patient. It’s not good enough.

In many cases, it is not a doctor’s fault when she or he fails to diagnose a difficult-to-diagnose illness. Sometimes doctors overlook signs and symptoms or even misinterpret laboratory reports; othertimes, as I understand was my own case, a number of neurological abnormalities were observed among laboratory tests, but those anomalies didn’t “add up” to anything defined through established diagnostic criteria. It is, however, the doctor’s fault when s/he defaults to a diagnosis of mental illness—especially in the cases of neurological diseases and disorders that may cause neuropsychiatric symptoms. In these cases, the physical illness itself can cause symptoms, and yet in many cases of misdiagnosis the symptoms themselves are assumed to be not manifestations of a potential brain disease, but rather the root cause of physical neurological problems. If anyone who practices in the field can give me a solid argument for why this is so commonly the case, I want to interview you to gain an understanding of why this is responsible practice.

Our medical communities draw bright lines between physical illnesses and mental illnesses. Reality is not so well defined, and medical doctors and mental health practitioners need to collaborate more closely, because in many cases the most commonly diagnosed cause and effect (mental illnesses causing imagined physical illnesses) is exactly the reverse of reality.

The UK news organization The Independent in 2012 reported the case of a 23 year-old man with psychotic symptoms who developed pneumonia in the hospital. He was treated with minocycline (a tetracycline-class antibiotic sometimes used to treat neurological Lyme infections because it crosses the blood-brain barrier better than many antibiotics) and to the great surprise of everyone, he suddenly no longer had any symptoms of psychosis. The antibiotic was discontinued when his pneumonia was cured. When the antibiotic was discontinued, the delusions and paranoia returned.

Some emotional and cognitive dysfunctions are caused by infectious agents such as syphilis and Lyme.

Some are caused by autoimmune diseases such as multiple sclerosis.

A brain tumor is likely to make a patient behave strangely—an uncle of mine developed a brain terminal brain tumor, and he was haunted by psychotic delusions in the last months of his life.

But just because no brain tumor appears in an MRI, it doesn’t mean that there is no physiological cause of behavioral and perceptive dysfunction; sometimes a teeny, tiny bacterium or virus is eating away at the brain or inflaming the tissue and putting pressure on nerves, inaccessible to blood tests and too small to be seen on a brain scan.

Are we satisfied that patients with these invisible illnesses are just loaded up with psychotropic medications and told to get on with life? If so, given the poor efficacy of chemotherapy for so many cancer patients, why don’t we just deny any attempt to improve their health and instead load them up with psychedelic mushrooms—or their pharmaceutical analogs, benzodiazepines and antianxiolytics?

Why not ignore the cause and treat the symptoms alone? Well, because most people want a fighting chance at life, not simply to become numb to what robs them of it.

Why do we champion the cancer and HIV patients who have this fighting spirit and malign Lyme patients who likewise are not satisfied with treating a multi-systemic illness with sensory deprivation?

I can’t think of any reasonable answer for this question, and so I’ll just let you think about that.

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