Let’s Talk About Lyme Disease

Part One of a three-part series on Lyme disease. May is Lyme Disease Awareness Month.

Alyssa Miller, Michele Miller and Jeanne Cloutier

If you had asked me about Lyme disease a few years back, I wouldn’t have had any inclination as to how serious this disease could be. That was until my mom, Jeanne, was diagnosed in late September of 2011 with a positive Lyme test through a Lyme literate medical doctor (LLMD).

This wasn’t her original diagnosis however. Years prior, my mom had been experiencing heart palpitations, unexplained rashes, vertigo, a stiff neck, dizziness, stomach issues, numbness, tingling, Bell’s palsy and then slurred speech. After being prescribed additional medications and sent to specialist after specialist, I remember meeting my mom for coffee and her telling me, “Something is terribly wrong with me. I’m scared.” Her primary care physician then referred my mom to a neurologist because of her slurred speech and we suspected she had suffered a stroke.

The appointment with the neurologist was one that I wish I had gone to her with. On Friday, June 17th, 2011, my Mom called to tell me she got the death sentence. The neurologist had quickly diagnosed her with ALS, otherwise known as Lou Gehrig’s disease. She was handed a manual published by the ALS foundation and a list of local support groups in her area. Mom called me within the hour to tell me the grave news. There is no definitive test to prove an ALS diagnosis. A doctor is basing it on a series of symptoms and trying to solve a problem. My mom was not taking the diagnosis and started her research.

Fortunately, shortly thereafter, she found an LLMD within 15 miles of her home trained through ILADs, the International Lyme and Associated Disease Society. ILADs trains physicians to treat Lyme and associated diseases. Mom set up an appointment and this time I accompanied her on this visit. The appointment on August 3, 2011, was to be one of the longest doctor’s appointments we had ever experienced.

We were both very impressed. The doctor reviewed her medical history, as well as the chronological history of symptoms. His first assumption was Lyme disease and/or a combination of Lyme and other co-infections. He ordered a series of blood tests, one being the western blot IgG and IgM through Igenex Labs, one of the most accurate labs currently that test for Lyme and its co-infections. Most LLMDs use this lab for testing.

A month and a half passed before my mom was called back to go over the results. We heard the news that it wasn’t ALS; instead, her symptoms were stemming from late state Lyme disease complicated by a couple of co-infections. We both cried. The ALS diagnosis had been a death sentence to my mom but this new diagnosis gave her hope.

So many others are given the ALS diagnosis and do not question their doctors. They just accept it and are sent home. But should they? My mom chose to trust her intuition and seek out a solution to her problem. But was that enough?