Our Lyme Disease Story

Misdiagnosed and Feeling Like a Hypochondriac

People with late-stage Lyme disease are often misdiagnosed with other illnesses: Lupus. MS. Colitis. Depression. Fibromyalgia. Sleep Disorders. Thyroid disease. Chronic fatigue syndrome. Here’s my story.

Misdiagnosed: You’re Just Over the Hill

As I mentioned in my last post, at the urging of friends, I made a doctor’s appointment. I thought I might have hypothyroidism, like my dad, or Lyme disease, which is prevalent in our area. 

Christy Brunke with Library Journal Reviewer Christine Sharbrough
September 2017: Meeting the woman who gave my novel a starred review in the Library Journal.

The day of my appointment, September 12, 2017, I shared my symptoms with the doctor I’d just met. He asked if I had joint pain, a common Lyme disease symptom, especially in the late stage. 

Though I would get that Lyme disease symptom—and many others!—at the time, I didn’t have it. I told him no. 

I estimated I’d been battling fatigue, insomnia, and muscle pain for five months. Unfortunately, I hadn’t donned my sleuthing hat yet. If I had, maybe I would’ve shared details that would’ve led the doctor to a different conclusion. Instead, I was misdiagnosed.

“I don’t think your current symptoms add up to one specific, overriding medical condition (such as Lyme).” Instead, he said, “If you have a chronic sleep problem and a demanding life, it is difficult to feel well.”

He also pointed out that I was forty now. I shouldn’t expect to have the same energy I’d had in my twenties and thirties.

Misdiagnosed: You're Just 40 and Over the Hill

He went on to diagnose me with seven different things:

  • Chronic fatigue
  • Insomnia
  • Myalgia (muscle pain)
  • Hoarseness
  • Allergic rhinitis (hay fever)
  • Allergic conjunctivitis of both eyes and rhinitis (not one form of rhinitis, but two!)
  • Telogen effluvium (“I am pretty sure you have a benign, temporary hair loss syndrome.”)

Lyme Symptoms: Fatigue, Insomnia, and Muscle Pain

I later learned Lyme disease can cause all the symptoms I’d been having. Even insomnia is a common late-stage Lyme disease symptom.

The Symptoms of Lyme Disease

Lyme disease is also linked to mast cell activation syndrome“This is a disorder where the immune system overreacts to various stimuli, causing them to appear to be allergic to many things in the world around them.” 

The doctor ordered blood work to test my thyroid, but later declared the results normal. 

He never tested me for Lyme.

Sleep Smarter by Shawn Stevenson Lyme Disease Symptom

I left his feeling relieved but like a hypochondriac. I didn’t have Lyme disease or even hypothyroidism. A combination of aging, sleep problems, and a demanding schedule caused my exhaustion. After all, that’s what the doctor said. Aren’t doctors supposed to know?

Another year passed before I reconsidered Lyme disease. In the meantime, I tried to overcome my health issues with the help of a book called Sleep Smarter. Click here to continue reading my story!

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