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The Shocking (and Positive) Side Effect of My Lyme Disease Treatment

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I want to start off by acknowledging that every person’s experience and body is different and that, for tick-borne diseases in particular, symptoms and effective treatments can vary widely. However, I would like to shed light on my personal experience in hopes that others may learn something that may be beneficial in their journey to improved health. I personally believe that it is likely that many people’s mental health symptoms and disorders may be affected by Lyme disease and other tick-borne diseases.

It seems like Lyme disease and other tick-borne illnesses have been in the news a lot lately. The rates of these diseases, including cases of tick-borne diseases that are infrequently or rarely seen, have been on the rise. Despite the fact that tick-borne illnesses are an epidemic, these diseases are still not taken very seriously by the general public and even by doctors. Certainly, there is a lack of understanding of the possible association between tick-borne diseases and mental health symptoms and disorders.

One morning almost 10 years ago, when I was nearly 16, I spotted a big, highly engorged tick attached to my thigh. Disturbed to see a tick on my body but thinking it wasn’t a big deal, I removed the tick from my leg and carried on with my morning routine getting ready for school. I figured the tick must have come from my cat, who would often sleep on my bed at night. It didn’t cross my mind to make an appointment to see my doctor or to look out for any symptoms. Growing up in a tick-endemic area, tick bites were a common occurrence and casually removing ticks from oneself was standard practice. The risk of Lyme disease was on everybody’s radar, it seemed, but it just wasn’t considered to be a big deal or likely to happen.

I have struggled with depression since a preteen, if not earlier. Looking back, it is clear to see that my depression worsened significantly over the next six months or so following my tick bite, leading to a suicide attempt. The next few years, my overall health continued to deteriorate. I struggled with severe headaches every day and persistently felt physically exhausted. By the time I started my senior year of high school, I was no longer a “high-functioning” person with depression. I was so depressed that most days I could not get myself out of bed. That year is a blur of the most intense emotional pain alternating with emotional numbness and sleeping to escape this unbearable state. I ended up missing so many days of high school that year, I almost wasn’t allowed to graduate, yet somehow I was able to push myself to go to school just enough days to graduate. I had always been a conscientious and hard-working student up until that point, but for the first time in my life I was not completing all of my work; I couldn’t.

I thought maybe my depression was just at a low point because I was stressed about life after high school. By the time I started college that fall, I was already feeling overwhelmed just thinking about all of the academic expectations and living away from home, but I thought I could push through it. After all, adjusting to college is difficult for everyone. I think I made it two weeks in college before I decided to take a medical leave of absence. My thoughts were consumed by suicidal urges and my depression and anxiety were debilitating. I could barely carry out simple daily activities, let alone adjust to the academic and social demands of college.

The rest of my college career was a series of ups and downs, but mostly downs which become increasingly deeper depressive episodes. I took three medical leaves of absence with an additional three semesters of withdrawal from my college. I lost count of all the antidepressant, anti-anxiety, mood stabilizer, and antipsychotic medications I tried. I attended intensive outpatient therapy (IOP) programs, I was hospitalized, I stayed at inpatient hospital diversion programs, I had assessments done, I saw a naturopath, I had genetic testing. I tried transcranial magnetic stimulation (TMS) for over three months, having to stay out-of-state as this treatment was not locally available. Nothing gave me sustained relief despite being committed to physiological treatments and regular, intensive psychotherapy. My depression would always come back full-force, keeping me in bed and unable to function most of the time. Finally, I was so desperate for even slight relief from my depression that I sought out electroconvulsive therapy (ECT). I did not find relief even from ECT, and I experienced brutal physical and cognitive side effects.

Last October, I was getting dressed for the day when I noticed something on my left upper arm. I tried to brush it away but it didn’t come off. The part of my arm where it was felt sore. I took a closer look and saw tiny legs. Immediately, I panicked. At this point, I knew how serious tick-borne illnesses could be, as my best friend is severely and chronically ill due to tick-borne diseases. I contacted my best friend and asked her what I should do. After my fiancé removed the tick from my arm, I immediately went to a walk-in clinic, the tick sealed in a ziplock bag to show the doctor. I asked the doctor if he could prescribe me antibiotics and he reluctantly prescribed me one single dose of a broad-spectrum antibiotic, which I immediately picked up and took. My best friend told me to make an appointment with the Lyme-literate doctor she goes to. Within a few weeks, I had my first appointment with the Lyme-literate doctor. By that point, I was having symptoms of a tick-borne illness: joint and muscle pain, and fatigue. I felt generally unwell. A month or so later, when it had been about six weeks since the tick bite (the time it usually takes for tick-borne illnesses to show up on tests), the doctor did the ELISA and Western blot tests for various tick-borne illnesses.

I went to my next appointment expecting to hear that my results were all normal, as was the case for almost all of my medical tests over the years. I was in disbelief when I was told I tested positive for Lyme disease. Even though I have been bitten by two ticks that I know of, I didn’t expect a Lyme diagnosis. My doctor prescribed me a high dose of that same broad-spectrum antibiotic, then later added on another antibiotic. I experienced Herxheimer reaction symptoms as I started these medicines, having fevers, hot flashes, night sweats, achy pain in my upper arms that was so intense that I felt like I was going to vomit, and struggling to catch my breath simply from walking up the stairs. I felt worse before I felt better: my doctor had me continue antibiotics for six months, my intense physical symptoms gradually subsiding, though I do continue to have joint and muscle pain, fevers, hot flashes and other symptoms of Lyme disease.

Shockingly for me, my depression began to lift during this time; I finally started to have some interest in life and feel excited about each day after almost 10 years of severe depression. My anxiety is no longer nearly as intense or frequent, as well. It’s been almost nine months now that I feel free from depression. I still have bad days sometimes, but I’m able to lift myself up and let things go. I am functioning at a level I haven’t in a decade, if ever. I feel like I finally have my life back, and I wholeheartedly believe it was my undiagnosed and untreated Lyme disease that caused my depression to be so severe and unrelenting for so long.

Out of all the treatments I have tried, it appears antibiotics may have successfully put my depression into remission. Of all the explanations doctors have given me for why my depression has been so severe, I firmly believe it’s been Lyme disease all along.

Most people, even medical professionals, don’t realize that Lyme disease and other tick-borne diseases can have such a significant effect on people’s mental health. Scientific studies have found that the Lyme disease-causing bacterium invades the nervous system, including the brain, causing inflammation which can lead to decreased levels of serotonin and damage to the hippocampus, both of which are associated with depression. Especially when undiagnosed and untreated, Lyme disease can have serious implications for our mental health, triggering new psychiatric symptoms or exacerbating pre-existing symptoms.

Of the long list of doctors I have seen over the years for depression, why couldn’t Lyme disease or tick-borne illnesses have been considered and accurately ruled out? I know the tests for tick-borne illnesses are notorious for giving false-negative results, but if doctors were more aware of this high rate of false negatives, perhaps they wouldn’t so often erroneously conclude that their patients definitively do not have a tick-borne illness, letting people become sicker and sicker. It is astonishing and extremely disturbing to me that countless medical professionals have failed me by failing to consider a tick-borne disease as a potential underlying or contributing factor in my depression. How many other people are suffering needlessly, not finding any relief from traditional treatments for depression because the root cause or contributing factor for their depression may be a disease transmitted by a tick? How many people are resorting to having their brains shocked because they are so deeply depressed and have exhausted all other treatment options? I know everybody is different and tick-borne illnesses can result in strange and diverse symptoms in each person, but I do think it would be a huge step forward in our mental health system if tick-borne illnesses were better understood and were routinely and seriously considered by psychiatrists, family doctors and other medical professionals when patients present with psychiatric symptoms.

My journey with depression and anxiety started before I was bitten by a tick — that I know of, anyway — but I absolutely believe that my Lyme disease is the reason my depression spiraled so out of control. I know that just because my depression is currently at bay does not mean that I won’t experience other depressive episodes in my life; in fact, realistically, I know it is likely my depression will return. However, I now know I need different approaches for managing my depression than treating my depression directly through antidepressants, psychotherapy and other common treatments for depression; when my Lyme disease is managed, it seems my depression is managed, as well. My doctor telling me I tested positive for Lyme disease was a moment that changed my life, and I am grateful for my positive result; I have regained my health and my life.

Photo by Svyatoslav Romanov on Unsplash

Originally published: September 26, 2019
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