I Couldn't Figure Out My Brain Fog and Fatigue—and Then I Was Diagnosed With Lyme Disease
How do you explain that your brain feels like mush and your body can't remember how to function?
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It's hard to believe that it's been three years since I woke up in a completely different body. A body that belonged to me, but didn't know me. A body that understood what it was supposed to do, but couldn't remember how to do it. A body that went from perfectly healthy to ill overnight.
I woke up on a Sunday morning prepared to read my day away (I was in graduate school) and knock a few items off my weekend to-do list. However, my brain had other plans. As I walked to the bathroom, suddenly everything went blank. I couldn't remember what I was doing in there. Was I going to brush my teeth? Did I need to use the bathroom? Should I wash my face? My toothbrush looked like a foreign object. I realized I had turned on the faucet, but couldn't recall why. The toilet hadn't been flushed, so had I already used it? I started sweating profusely.
I tried to shake off what I thought was brain fog from sleeping in. Walking downstairs, I felt my heart beating rapidly, pounding so hard I could hear it. My chest was tight and it was difficult to breathe. My arms and hands were tingling and numb. My vision was blurry.
For the rest of the day, everything I attempted to do was a struggle. Not only could I not focus, but remembering how to do basic tasks seemed impossible. I accidentally left the stove on after making soup, and forgot to turn off the sink after washing my hands. My heart still pounding, I called it a night and hoped I'd feel like myself in the morning.
But the next day, I woke up to the sound of my own heartbeat. It was a loud, pulsating beat that I was only used to experiencing after a long run. My body was screaming at me now, angry that I didn't take it seriously yesterday, and warning me that something was very, very wrong.
I called my mom and immediately burst into tears. How do you explain that your brain feels like mush and your body can't remember how to function? She comforted me as best she could and told me to go to the emergency room if my symptoms continued. I'm a stubborn person, but I felt scared enough to get into my car and head straight to the hospital.
When I arrived, I was placed in a triage room and hooked up to monitors. My EKG was normal, vital signs were within range, and blood tests looked OK. They told me I was "probably just dehydrated," and sent me on my tearful way.
The following weeks were a blur. I cried more than should be physically possible. My apartment was soon covered in Post-It notes reminding me how to do simple tasks. I contemplated dropping out of school because I could barely read the materials assigned. My parents took turns staying with me. My life was no longer my own.
During that time, I saw three primary care doctors, a cardiologist, neurologist, allergist, and psychologist. I had multiple EKGs and wore a holter monitor; had an EEG to assess my brain function; an MRI to rule out multiple sclerosis; and even removed all potential food allergens from my diet. Each doctor said nothing was wrong with me.
My new diet left me hungry and broke. The medical bills started piling up. I felt defeated, alone, and convinced I would never feel better. I had hit rock bottom, and even caught myself thinking about how much easier it would be to just end my life. I called my mom and told her how I felt like I was losing my mind. "We will figure this out," she told me. I tried my best to believe her.
My days and nights were spent searching medical websites and online message boards for answers. Every time I typed in my symptoms, the words "Lyme disease" would appear. I ignored it, though; I had never seen a tick on me, nor had I developed the distinctive "bulls-eye" rash that's a hallmark of the insect-borne illness. But the more it appeared in my search results, the more curious I became. I decided that the next time I saw my doctor, I would ask for information about the condition.
It turned out that a different doctor at the practice specialized in treating Lyme. Even though I was sure it would be another dead end, I told him I wanted to be tested. There's no quick-and-easy Lyme disease test; doctors usually use a two-step blood test, plus a review of the patient's symptoms, to diagnose the disease. I was told it could take up to four weeks to find out, so I waited. In the meantime, I got used to my "new normal." My parents helped drive me to class, and made sure my front door was locked and all appliances turned off when I left the house. My professors were kind enough to give me extra time on my assignments, and my girlfriends frequently checked in to lift my spirits as best they could.
Four weeks later, I had my follow-up appointment. When the doctor told me I had Lyme disease, I cried—not because I was scared, but because I finally had an answer.
I was given daily antibiotics for several months. Slowly, I felt better. I was able to read, could remember names and places, and my vision returned to normal. I could do everyday activities without losing my breath. I started to recognize myself again.
Today, I'm no longer on antibiotics, but I'm still not 100%. I experience heart palpitations that sometimes linger for days, and I'm often immensely fatigued, even after a full night's sleep. But I've come a long way in managing my symptoms with daily exercise and a healthy diet. I learned the hard way that alcohol only exacerbates my symptoms, and it's best to just avoid it. I take supplements to boost my immune system, aim for nine hours of sleep a night, and often take naps during the day to maintain my energy.
Spreading awareness about this disease is crucial for helping lost people, like I was, to be diagnosed. I was told that I couldn't possibly have Lyme because I hadn't gone hiking and didn't live in the woods. But the people who told me to keep fighting for answers gave me hope that someday I would find them, and I did.