Unusual Symptoms of Lyme Disease
This article was first published on the Global Lyme Alliance blog on January 30th, 2018. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
In college, I was in the concert choir and during my sophomore year, I lost my singing voice. For an entire semester whenever I opened my mouth to sing, nothing came out. I could speak normally, but my singing voice was gone. It was completely out of the blue and I thought it was because I was staying up too late and doing the things college students tend to do. Then just as strangely as it left, my singing voice came back.
Flash forward to 2017 when country singer Shania Twain was diagnosed with Lyme disease. Years prior she suffered from "dysphonia," or hoarseness, which brought her singing career to a screeching halt. After she was diagnosed, she attributed her temporary vocal loss to Lyme disease. When I heard about Shania, the vocal loss I suffered over 15 years ago finally made sense.
By the time I was diagnosed with Lyme disease in 2016, I'd experienced almost 20 years of these odd, seemingly unrelated, symptoms. It's like each symptom was a piece of a puzzle. The pieces were scattered throughout my life and I didn't know if they were all pieces of the same picture or not. It wasn't until I got a diagnosis that everything seemed to fit and the picture became clear.
My college friends used to joke that I was never able to get off the couch. I was constantly asking my roommates to bring me glasses of water. I thought I was lazy, but later I realized I had chronic fatigue syndrome even back then. It's hard to understand because I was active and involved in countless clubs, but when I crashed, I crashed hard. No matter how hard I tried, I literally couldn't drag myself off the couch. It wasn't normal for a 20-year-old to feel this way, but I never thought to question it.
In my mid-twenties I started waking up in the middle of the night drenched in sweat. I thought it was from nightmares (which were probably also related to Lyme), but it turns out it was the multiple co-infections that often come along with Lyme. I also noticed bumps on my neck and behind my ears. Doctors weren't overly concerned, but when I asked other people, no one had experienced anything similar. Later I learned these were swollen lymph nodes, constantly inflamed from years of battling Lyme spirochetes that were slowly multiplying in my body.
Around this same time, muscle and joint pain started in my shoulder and migrated to my hips. It was difficult to describe to doctors because it was there one week and gone the next. I remember getting a lot of shrugs and referrals to the next doctor or the next physical therapist, who also shrugged it off. There were days I could barely walk and had to shuffle across the floor, but I learned to live with it because there was no easy explanation for what was happening.
Now when I look back at these symptoms, I wonder why I didn't fit the puzzle pieces together sooner. People in their twenties shouldn't be waking up covered in sweat or shuffling across the floor like an octogenarian. Maybe it was because the symptoms disappeared and reappeared or maybe it was because they flew just below the threshold of what I considered serious. Maybe if I had just asked the doctors, "Could all these seemingly random symptoms be related?" they would've dug deeper. Unfortunately, that is not how our fragmented healthcare system works.
My story is not unique. Many people with Lyme disease and co-infections spend years putting band-aids on symptoms only to get an accurate diagnosis decades later. I marvel at the astounding amount of patience and persistence it takes one to finally be diagnosed with Lyme.
The symptoms of Lyme disease are as varied as the people who contract it. Each one of us has different puzzle pieces that make up the picture of our illness. These symptoms match those of many other diseases, which is why diagnosis is often so difficult. Lyme disease can even trigger autoimmune diseases making this puzzle one of the hardest to solve in medicine.
Let's hope someday soon these strange symptoms will not longer baffle doctors and other health professionals, and instead be recognized as classic Lyme disease symptoms. When that day comes treatment will not be delayed, outcomes will improve, and all the efforts to provide awareness and education will have been worth it.
"It's never too late to be what you might have been." - George Eliot
This article was first published on the LymeBrave Foundation blog on January 9th, 2018 and on The Mighty on January 19th 2018. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
The universe was speaking to me long before I was finally diagnosed with Lyme disease in 2016. It was communicating with me through my symptoms, each one a wake up call to pay attention. Unfortunately, I ignored it over and over again. The first alarm was the panic attacks, then the shooting pain, the rapid heart rate, the swollen lymph nodes, on and on. And I didn't listen.
The stress of my job was literally killing me. With each passing year my symptoms worsened. Eventually, I was in and out of urgent care and the hospital desperately trying to figure out what was wrong with me. At my rock bottom I was in so much pain and had so little energy that all I did was go to work, come home and cover my body in heating pads until I crawled into bed for the night. Like most Lyme patients, my fight for a diagnosis was long and difficult.
The answer came about ten years after the onset of my health issues when I was finally tested for Lyme disease and put on antibiotics. That was two years ago and I've been making slow progress ever since.
After I was given the gift of a diagnosis my entire outlook on life shifted. In retrospect I realized that my failing health was an internal alarm system for my life. Each time I ignored the smoke, the fire got worse, until the flames were out of control and I couldn't ignore it any longer. That's when I started to reevaluate the direction of my life. The universe was telling me I was going the wrong way and if I wanted to heal I would have to make some major changes.
The first thing I had to change was my job. It wasn't easy leaving my full-time school social work job for a part-time job at a university. But once I took the leap, my health started to improve. Aches and pains lessened and my energy started to come back.
With each change, I felt the universe nudging me further. Lyme taught me to listen to the signals in my body, which in turn taught me how to listen to my intuition. I followed my passion for writing and slowly doors started to open. I decided I wanted to move to a warmer climate and as if by magic the opportunity came. The more I follow my true path, the better my health becomes.
It works in the opposite way as well. When I don't listen to what I need and stop taking care of myself, my symptoms worsen. When I start letting naysayers and skeptics get into my head and make me question my instincts, the universe answers back with a setback.
Sometimes it's hard to know exactly where this journey is leading me, especially with doctors making conflicting recommendations, and so many options to choose from. This is when I get very quiet and ask for guidance. Sometimes it shows up and other times it doesn't. I just have to know at the end of the day that I am doing my best to be true to myself and that even when I make mistakes, it's all part of the process.
What will I do next? This quote from the visionary Lyme doctor, Dietrich Klinghardt, is guiding my way. It's from the Lyme disease documentary, Under Our Skin 2: Emergence:
"If you have Lyme disease, by my definition, it means also you belong to a tribe here on the planet that is more conscious and more sensitive and also more likely to do something once you recover that will be of benefit for all of us."
As I slowly recover from Lyme I've been asking myself what can I do raise consciousness and be a benefit to others?
I don't have it all figured out just yet, but I know the voice of the universe will lead me to it. I just have to listen.
"Follow your instincts. That's where true wisdom manifests itself." - Oprah Winfrey
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.