My Journey to a Lyme Diagnosis

About the Author: Sarah is 26 years old and currently lives in New York City. She was diagnosed with Lyme disease and co-infections during her senior year of college in 2016 and reached remission 3 years later in fall 2019! In her free time, Sarah loves spending time on the water, doing the NYTimes crossword puzzle, and hanging with her dog, Palmer.

The Path I Tread Through 

I found myself at psychiatric urgent care; I felt sort of guilty about it - this didn’t feel like a psychotic break worthy of urgent care, but I also knew that it couldn’t wait two weeks until I could get an appointment at the campus medical center either. It had been a slow decline of five years, of changes so gradual that they became almost unnoticeable, but the past few months it became undeniable, which came to a head the week before:

“Where’s my happy girl? I never see you smile anymore.”  

My jaw clenched and I stared straight ahead as it became increasingly more difficult to breathe. This was the start of my fourth panic attack today, I noted with journalistic objectivity. They’d been getting more and more frequent for months but even this was unprecedented. I counted the passes of the windshield wiper as I tried to divert my thoughts. Thirty-four times before my mom tried again:

“I have a hair appointment this afternoon that I’m not going to use. Why don’t you take it and go get your hair blown out?”

“I can’t let anyone touch my hair. It’s all falling out,” I cried. Breaths turned to gasps as I fought for air. I had gotten really good at these attacks lately, and usually, no one could even tell they were happening, but this one was different. I had no control. The tears were coming so heavily now that I couldn’t see. I knew she was right: I couldn’t remember the last time I felt truly happy, the last time I could think or even see clearly. My brain was foggy and impossible to decipher. You know when you try to look out a window but instead end up focusing on the glass panels in front of you? That’s how I felt always. Like I could see things happening, but only blurry and in my peripheral vision, only vaguely able to comprehend what was actually going on around me. 

The doctors told me to try exercising more, to drink more caffeine, to stop napping so much, but for all of their suggestions they had very few answers. If the doctors and their tests thought there was nothing wrong, I thought, then it must just be me. After five years and countless opinions, I had finally reached such a place of desperation that I started to believe all the doctors: I wasn’t sick, it was in my head. At least if I had a name for my problems, I could start to fix them. It’s no surprise to me that the one doctor whose job it was to hear me and to understand my brain is the one doctor who solved the puzzle - even after I presented with depression, the psychiatrist told me he still thought it was medical and ordered the Lyme test that set me back on the path to health.

The Red Flags

I can’t count the number of red flags that I missed before I was finally diagnosed, but I distinctly remember the first two. They came in rapid succession – in fall 2011, I fell asleep at the wheel of my car, and two weeks later I ended up in the ER with what doctors vaguely identified as a bacterial infection. The next 5+ years were filled with seemingly unrelated medical problems. That bacterial infection came back yearly like clockwork, but I was also plagued by pain in my foot, then my back, then my knee. I had headaches and mono and was constantly complaining of debilitating fatigue.

Doctors told me that I put too much pressure on myself, that I drank too much diet coke, that I had anxiety and depression, that my ailments were my own fault or, even worse, in my head. It was years of unrelenting self-advocacy, but by February 2016, I was not only effectively bedridden but also had lost a lot of cognitive function. Though I used to love getting lost in books, I suddenly struggled to even read a restaurant menu and, in the instances that I could comprehend the words, I was unable to recall them even seconds later. My body and my brain had been besieged by bugs, and I could do nothing but sit back and watch.

My Lyme Diagnosis

With my diagnosis came immediate relief, but that relief was all too temporary. Lyme disease felt like the answer I had been waiting for, but with the lack of research and understanding, I soon realized that a Lyme diagnosis didn’t win me any battles, it only redirected me towards new ones. Even though both my ELISA and Western Blot tests came back positive along with a whole host of coinfections, the campus medical center still denied that I had Lyme disease at all. For the doctors that did trust the diagnosis, there was absolutely no standard of care. This left me, a very sick patient with absolutely no medical experience, to make far too many decisions for myself based on very little experimental evidence.

I’ve always thought in very binary terms – black and white, ones and zeros, on and off – but I found myself navigating a sea of unfamiliar grey space. I settled on a treatment protocol that was meant to address the disease aggressively, even though that meant taking 54 pills and supplements daily as well as self-administering IV antibiotics 3-7 times daily through a PICC line in my right arm. I decided that all of this would be worth it because it would allow me to heal in time for graduation and the start date of my new job. All I desperately wanted was to be able to resume the life that I had worked so hard to plan for myself.

Moving Forward

Those self-imposed deadlines came and went quickly - because my disease went undiagnosed for so long, my immune system couldn’t handle even the normal environmental toxins that it was exposed to. In addition to my multiple systemic infectious diseases, I was also fighting chronic active Epstein-Barr Virus, heavy metal poisoning, and mold toxicity. Still to this day, I’m not where I expected to be and I’m certainly not where I had hoped to be, but I have worked relentlessly to give my body the tools to get on the winning side of this fight.

No matter how physically and emotionally taxing my treatment has been, the struggle for a diagnosis will always be infinitely harder. With treatment, I know that I am always working towards a goal and tracking measurable changes, but the path to diagnosis was an act of blind trust in my body over every doctor I saw. Trying to heal without a diagnosis was like trying to pass a test without even knowing the questions being asked, and I’m so grateful that I never stopped searching for the answers.