The Extreme Lyme Disease Symptoms One Woman Has Lived With for 3 Years
September 10, 2017, is a day I’ll always remember. A friend and I went on a hike in Cold Spring Harbor on Long Island. The sun was shining; the trail was peaceful. Afterward, we grabbed Bloody Marys...and I was bitten by a nymph deer tick that passed my post-hike body scan and burrowed into my left calf.
After I experienced weeks of extreme fatigue, shortness of breath, and an unusually decreased appetite, a coworker suggested that I stop by the blood specialists up the road from our office to get some blood taken during my lunch break and figure out what was going on with me. I agreed, spending my break getting vials of blood drawn. A few days later, my test results came back positive for Lyme disease.
I got the news during my drive to work in the morning. “Everything looks normal, but did you know that you have Lyme disease?” the doctor asked me. Obviously, I had no idea that I had it—nor what Lyme really even was. He put me on 500 mg of doxycycline twice a day for 14 days. I went in for a follow-up blood test about a month later and still tested positive. He didn’t give me any other prescriptions or instructions—except to follow up with my primary-care doctor. I didn't have one at the time, but as I’d soon find out, doctors are often illiterate when it comes to Lyme anyway, so that wasn’t much of a helpful option.
A year after that original flare-up, I still experienced symptoms, and I eventually saw an infectious disease specialist. He told me that “chronic Lyme doesn’t exist” and that I probably had rheumatoid arthritis, lupus, or some other autoimmune disease, even though he literally had my positive Lyme blood test results in hand. Per his orders, I underwent tests that didn't show any of the markers that characterized either disease. He said he had no further suggestions for me and sent me on my way.
Lyme symptoms I still experience
I never saw another doctor, though to this day I still experience Lyme disease symptoms.These run the gamut, including but not limited to numbness, pain, and tingling in my hands, legs, tongue, and joints; instant fatigue when I exercise; a lack of energy that glues me to the couch, blurry vision; non-restorative sleep; depression; an irregular heartbeat; and a nonexistent appetite (which is when you know something is really wrong with me, because my days always revolved around what I’m going to eat next). The two side effects that hit me the hardest, though, are these.
An inability to recall and articulate words. Brain fog is one of the most common neurological side effects of Lyme disease. You know that feeling of wondering which continent you’re on after you wake up from too long of a nap? Okay, well that’s what brain fog is like, except it never goes away.
I feel like I've lost IQ points. I can’t speak fluent sentences anymore, and it’s frustrating as hell. Ten words are now used to describe what should be conveyed using two. I graduated from college with honors and a Bachelor’s degree in English. I literally studied the English language for four years, yet my lexicon has been chopped in half—all thanks to an infected tick bite.
A failure to recall and properly articulate words is especially rough as someone whose income relies on an ability to tell stories. On a brighter note, I’m beyond grateful that I write for a living. It’s always been my passion, in part because I’m able to spend more time recalling and crafting sentences with words rather than struggling to verbally express myself.
Last year, I moderated a professional roundtable discussion, which required the eloquent verbal communication skills that I now often lack. After studying for days leading up to the event, I still had to rely on three pages of handwritten notes to highlight all of my speaking points rather than trusting my brain. It went well, though—despite the long pauses to collect my thoughts and find the right words. I envy those who can easily rattle off articulate sentences without ever checking an index card or stumbling over themselves like I could once upon a time pre-Lyme.
A fading memory. Perhaps the most devastating side effect of all is my disappearing memory. “Just use a planner, or set reminders on your phone!” they say. Trust me, I’ve tried, but notebooks and digital notifications don’t help. I have a calendar hanging on my bedroom wall, a Google Sheets spreadsheet complete with daily and monthly to-do lists, a dry erase board on my fridge, and an agenda on my nightstand. But despite how many planners I keep, I’ll always forget.
I double-book meetings and schedule plans with friends over doctors appointments. I don’t remember meaningful conversations with romantic partners and excitedly bring up topics we’ve already addressed twice. I’ve been training Brazilian jiu-jitsu for more than two years, but some days I completely blank on how to get into the most basic positions I’ve drilled hundreds of times. I forget to buy the main thing I went to the grocery store for after checking the list on my phone before getting out of the car. If I didn’t eat the same gluten-free blueberry waffles every morning, I wouldn’t know what I ate for breakfast yesterday. I barely know what I did last week.
I’m 27 years young, but my memory (or lack thereof) makes me feel old. It’s a problem and a concern that severely challenges my relationships, my work, and my daily life. All I can do at this point is continue to keep lists, laugh when I mention something for a third time, and document special times in my life so I don’t forget those little moments that mean the most.
RELATED: What Does a Tick Bite Look Like?
How I take care of myself
The only strategies that have worked to help me live my life semi-normally have been holistic lifestyle changes. I limit my exposure to stress, I eat as healthily as possible, I reduce my sugar intake, and I try to sleep well and for at least seven hours each night. All of this combined helps keep my symptoms at bay, though flare-ups can always strike at any time. And they do. In times of low sleep, high stress, or poor self-care, I know that a flare-up is right around the corner waiting to greet me to the infamous tune of “Hello darkness, my old friend.”
So I’m pressured into taking tip-top care of myself 24/7, or I could become a zombie. Sounds more like a blessing than a curse, sure. But it gets exhausting, which isn’t good because exhaustion leads to stress which leads to poor self-care which…you get the point. It’s a vicious cycle. My mind is constantly in a fearful state of that dreaded “or else.”
I can’t eat processed foods or artificial sugars, or else my body will retaliate and I’ll feel drained. I can’t go to the gym more than three, *maybe* four days a week, or else I'll exhaust myself and have to sit out gym time the following week. I can’t drink more than one margarita or glass of red wine or else my thighs will go numb—which makes for a fun game at the bar, though, when you ask someone to punch your leg as hard as they can because you won’t feel a thing.
Being diagnosed with Lyme disease originally felt like the end of the world, but it was really just the beginning of navigating a new one. Although I've learned to manage my health as best as possible, life has never been the same, and I don't know if it ever will be again.
Please know that I’m fully aware there are people who experience more severe side effects that look nothing like mine, and my heart truly goes out to them. I can only speak from my own experience battling Lyme disease, in an effort to show those in the same boat that they’re not alone in this very real fight—no matter how many doctors chalk up their symptoms as psychosomatic or claim chronic Lyme doesn’t actually exist.
As depressed and defeated as living with Lyme disease has made me feel at times, I will never stop pushing forward. I will continue to take care of myself as well as I know how and try to keep my spirits high. I will always do the things I love, like writing when words fall short or hiking where ticks dwell. I am not my Lyme disease. It has definitely shaped me into the person I am today, but I absolutely refuse to let it steal my joy.
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