by Kerry J. Heckman
…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.
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.
What are the Typical Symptoms of Lyme Disease?
Everybody is different, and Lyme disease can present itself in many forms, as we saw with Kerry. Rare cases happen, but it is best to be informed of both the unusual symptoms and common symptoms of Lyme disease and other tick-borne illness.
Symptoms in Acute Lyme Disease (early localized Lyme disease)
Unfortunately, tick bites happen, so be patient and monitor your symptoms. If you are wondering about the potential initial symptoms of Lyme disease, check out the symptoms below:
- Erythema migrans, bullseye rash
- Swollen lymph nodes
- Additional flu-like symptoms
Early Lyme Disease Symptoms:
When you are bitten by an infected tick, you may start to see other possible symptoms as the bacterial infection, borrelia bacterium, spreads, including:
- Headaches and neck stiffness
- Lyme Arthritis
- Lyme Carditis, including chest pain
- Joint pain and muscle aches
- Facial paralysis
- Numbing in hands or feet
Late Lyme Disease Symptoms
When the bacteria have spread throughout the body, your Lyme disease is considered to be "late stage." This stage can include neurological, post-treatment, and chronic Lyme disease. In this stage of Lyme disease, you can also have neurological symptoms.
Other Potential Lyme Disease Symptoms
These symptoms may not be considered common, but every case of Lyme borreliosis can affect your body differently.
- Gastrointestinal issues, including abdominal pain
- Mental Health problems
- Weight gain
- Heart problems
- Hearing Loss
- Urinary Issues
If you recently got a deer tick bite and start to present with symptoms, be sure to contact your healthcare provider for Lyme and other tick-borne disease clinical diagnosis, a physical examination, and antibiotic treatment. Untreated Lyme disease can cause more problems, so stay proactive! Lyme and other tick-borne illnesses can be severe and affect your life in unexpected ways, but Global Lyme Alliance is here to help!
Opinions expressed by contributors are their own.
Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.
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