This essay was originally published in two parts at Huffington Post Healthy Living.
I sat in my Honda Civic watching people arrive one by one at Lynnet’s house, feeling like a stalker. So many other people were showing up, but so far not a single person I knew. You’re 27, I told myself. This is no big deal. And then I braced the bottle of wine I had bought for the party as I shifted the car into drive and pulled away from the curb. Somehow a panicked sparrow had taken up the space in my chest where my heart should be, beating its wings madly against the breastbone, and my whole body was burning and stinging. I thought I was going to pass out.
My first panic attack hit hard during graduate school. Although I had never been a socialite and never enjoyed forcing small talk with stranger, I had never before been afraid of people. I never had a disorder that scared me away from others and which limited my capabilities. I only recognized what I was feeling because I had for years read information from the National Institute of Mental Health (NIMH) and National Alliance on Mental Illness (NAMI) as part of my job. Huh, I thought. I have social anxiety. Who knew?
I had flourished as an undergraduate, but the undergrad lifestyle didn’t require schmoozing at professors’ homes with respected and award-winning authors, agents, et al. I wasn’t cut out for it. I made it through, but certainly not on the strength of my ability to wine-and-hors-d’oeuvre Very Important People.
I accepted the limitations this placed on my life as panic attacks became more frequent in social situations, even as they encroached on my professional life, which involved a lot of receptions, group dinners and related functions. But by my early 30s, anxiety events were getting out of hand: as a personal challenge, I went to a networking function co-hosted by CNN and the National Lesbian and Gay Journalists Association, and after only mustering the will to speak to one person (who turned out to be the event caterer), I felt suddenly as if I had been placed under a broiler, burning hot, disoriented, faint. I ran, literally, outside and walked home with tears flowing uncontrollably down my face from the pressures of inexplicable panic and a general feeling of failure.
Within months, I began to experience recurring visions of my body toppling over the edge of my 10-story apartment building. Over and over, like a film reel on a loop. I had never had any sort of mental vision before. This was totally new and disturbing, like a nightmare intruding on waking life. Eventually, I was so afraid of people that I ran out of food because I couldn’t handle grocery shopping, and I began to order Peapod delivery service. I had developed an intimate relationship with depression since my adolescence, but this was something else entirely — something far more active, aggressive and almost demonic feeling. At 32, I found a psychiatrist to cope with these increasingly disturbing and totally new problems, which coincided with an array of physical health problems that doctors at the time thought might be caused by multiple sclerosis.
My psychiatrist immediately loaded me up with Zoloft, Wellbutrin, Klonopin and a low dose of Seroquel — typically prescribed for bipolar disorder and schizophrenia, but sometimes prescribed “off label” in very low doses for use as a sleep aid and to treat obsessive-compulsive disorder. She said the visions and paranoia were a kind of psychosis that could fall into OCD or other severe anxiety categories, or perhaps could be a manifestation of bipolar mania. Although I had read a great deal about mental illness as a primary part of my job, and interacted with mental health advocates and researchers, I wasn’t immune to the stigma; I didn’t want to be prescribed an “atypical antipsychotic.” Yet I was desperate enough to reluctantly agree to take it. This was a life-or-death situation, as the constant playback of seeing myself fall from great heights was disturbing from the beginning, but was now beginning to feel like an inevitable prediction of what was to come.
Years into treatment, the scary visions had ceased but the high anxiety still rode alongside me, if not usually in the driver’s seat.
I was diagnosed with Lyme disease last February, at age 36. Several months into antibiotic treatment, the constant feeling of agitated panic I had come to accept as a part of my intrinsic personality had diminished so much that I had no feeling of dread whatsoever about an upcoming three-day meeting that involved networking with 30 people, some total strangers. This unusual lack of panic was almost as jarring as the first panic attack I experienced; it was that novel.
If I, or if any one of the dozen-plus doctors I’ve seen over the past five years, had seen this brochure from the International Lyme and Associated Disorders Society (ILADS), life could have been so much easier so many years ago. It is written for mental health practitioners, but the brochure details emotional and psychiatric — as well as, crucially, cognitive — symptoms of Lyme, as well as non-psychiatric symptoms that in combination can lead to a differential clinical diagnosis of Lyme. And such a diagnosis and resulting treatment for Lyme disease can be just as important to improving neuro-psychiatric symptoms of Lyme as can cognitive-behavioral therapy and psych medications.
In the next post, I’ll discuss the case of my clinical doppelganger — the subject of a recent medical case study whose age and psychiatric and physical symptoms almost exactly mirror mine, but whose outcome has not fared as well as mine. I’ll also talk about how a little awareness can prevent these journeys into madness, which unfortunately are common symptoms of Lyme disease, and whose symptoms are treated with a Band-Aid approach using antidepressants, antianxiolytic, and antipsychotic prescription medications instead of treating the infectious disease at the root.
___________________If you — or someone you know — need help, please call 1-800-273-8255 for the National Suicide Prevention Lifeline. If you are outside of the U.S., please visit the International Association for Suicide Prevention for a database of international resources.
In this recently published case study, authors Amir Garakani and Andrew G. Mitton detail the case of a man who… well, he could be me. Age 37 (my age), the man had sudden-onset panic attacks and suicidal ideation. He sought out a psychiatrist, and was given generic Zoloft and Clonopin — at one to two milligrams per day, which I can say from experience can cause dysfunction of its own. (Clonopin can be great for acute panic attacks; taken daily, it and Zoloft can cause what I call “Mindless Zombification Disorder (MZD),” a condition for which there is — shockingly! — currently no prescription drug.)
Despite the heavy medication, my clinical doppelganger’s symptoms worsened, in addition to inexplicable pains, “muscle spasms, weakness and tingling in his arms and legs, and general fatigue.” And this was just the beginning. Ultimately, man of his psychiatric symptoms resolved with antibiotic treatment, but his physical symptoms persisted and he ended up being unable to work.
Daniel Cameron, M.D., a physician who specializes in Lyme disease, discussed the case in a recent blog post. Cameron talks about the difficulty in diagnosing Lyme with the standard ELISA and Western blot tests that are used by most physicians, and also points out that the patient was not treated for babesia, a common Lyme coinfection, despite having had a positive babesia test.
As a sort of mirror image to the nameless man in the study, I’ve been diagnosed with Lyme, as well as bartonella and babesia coinfections, and have been treated (in stages) for all of these — currently taking “a combination of azithromycin and atovaquone,” just as Cameron recommends for babesia. (Side note: The latter medication is also used to treat malaria, as babesia is a malaria-like pathogen common to the Northeast United States that has now made its way into the blood supply. I’ll discuss more on this in a future article dedicated to Lyme coinfecitons.) And while I still have “good days” and “bad days” (some very bad), my health is markedly better than it has been in about five years and is better than the person profiled in the study.
As far back as 1994, the American Journal of Psychiatry published an article called “Lyme disease: a neuropsychiatric illness.” This was 21 years ago, and three years before I was first diagnosed with Lyme disease. And yet, despite being from Northern Virginia and now living in Washington, D.C. where Lyme disease has reached epidemic levels, it took years of visiting family doctors, neurological, psychiatric and other specialists before I found — through personal, not medical referrals — a Lyme-literate medical doctor and discovered that Lyme and associated infections are at the root of my most life-affecting cognitive and emotional health issues. That study concluded:
Psychiatrists who work in endemic areas need to include Lyme disease in the differential diagnosis of any atypical psychiatric disorder. Further research is needed to identify better laboratory tests and to determine the appropriate manner (intravenous or oral) and length (weeks or months) of treatment among patients with neuropsychiatric involvement.
My psychiatrist told me recently that she now routinely discusses Lyme disease with patients whose symptoms could be related and who present with other, usually inexplicable and non-psychiatric symptoms. Which is good, but it’s baffling that it took an insufferably vocal Lyme advocate (Hey, what can I say? “Know thyself.”) to make the case for my non-Lyme-specialist doctors to look into the reality of this disorder. I can’t count the number of times my shrink has told me, “You’re not crazy” over the years — and yet I was driven to the brink of losing my mental and emotional faculties because of this nightmarish constellation of insect-borne infections.
And I am one of countless people for whom this is a reality. If you or anyone you know has developed sudden and seemingly causeless anxiety, severe depression, or even psychotic symptoms, do yourself a favor and see your physician with this brochure in hand. Make sure you read every word of it together, including, most importantly, the “Diagnosis” section that states, “Because blood tests at the top three general medical laboratories in the nation fail to detect 35 percent of Lyme antibodies, ILADS recommends the use of [specialized] laboratories that specialize in Lyme and other tick-borne infections … The CDC criteria for positivity apply only to surveillance and reporting, and should not be used to make a diagnosis.” This will be new information for many or perhaps all doctors, and that case should be emphasized.
According to this overview of eight studies evaluating the efficacy of the CDC-recommended two-tier Lyme testing protocol, the accuracy rate of these tests falls between 18-67 percent, averaging 52 percent. This means that a patient who has Lyme disease literally has about the same chance of an accurate diagnosis with the flip of a coin than with the currently recommended standard for diagnosis. That this is the diagnostic standard by which Lyme disease is diagnosed is, despite all psychiatric problems Lyme can cause, perhaps the most insane aspect of this disease. And it means that both doctors must be familiar with Lyme symptoms, including neuropsychiatric symptoms, so that they can make clinical diagnoses and treat symptoms that can be life affecting and as in the case of the man profiled above, even permanently disabling if not properly addressed.