Health Literacy

After 27 years of suffering from a disease that was never properly diagnosed, I hope this post can help at least one person suffering from debilitating pain who might be looking for an answer.

A few months ago, I was diagnosed with Lyme disease and have been living with it since 1984. How did I determine 1984, you ask? I distinctly remember being bitten by a tick on my abdomen while deer hunting in Tallahassee, FL one winter morning. After removing the tick, I had a distinctive bull’s eye rash – a sign of Lyme disease, except that no one really knew enough about the disease in 1984.

Years of pain and suffering accompanied with all kinds of anti-inflammatory medicines (steroid and non-steroid), injections, surgeries and misery followed that incident without suspicion of Lyme disease. The first signs of fever, fatigue and extreme joint pain were suspected to be a form of arthritis and rheumatoid arthritis runs in my family. It was a painful thought for an athletic young man to potentially need a wheelchair.

I lettered in five sports as a high school prep athlete, which is unheard of even today. In one month, I went from healthy to unhealthy receiving multiple anti-inflammatory steroid injections in my hips, pelvis, ankle and neck and heavy prescriptions for my increasing headaches. I no longer cared about playing sports, but rather survival.

After five long years, I woke up one morning and the overwhelming joint pains were gone. I did not care how or why, because I was just thankful. Yes, I have had a bad headache daily for the last 27 years but it was nothing compared to arthritic pain. At least 25 doctors chased a remedy for my headaches. I underwent three sinus surgeries, neck surgeries, injections, sleep studies, natural remedies, allergy shots – you name it! But nothing worked. In early 2006, the disease moved to my central nervous system with symptoms of tremors and facial paralysis. I went from borderline over-confident to facing self esteem issues; from winning speaking performances to hardly giving a speech; from performing math quicker than a calculator to barely holding a calculator. With each stumble, I lost more confidence, self esteem and courage but never hope.

I was diagnosed with Parkinson’s, MS, ALS, rheumatoid arthritis but never Lyme disease, yet I displayed all of the classic symptoms. Thanks to Dr. Glen Hamburg, our Director of Anesthesia, and the smartest man I know, we uncovered the correct diagnosis. Dr. Hamburg asked me about my headaches and I told him, “Doc, I have had a headache every day of my life for 27 years, so I guess I am just going to live with them.” He continued probing and said, “Bill, I think you have Lyme disease.  Did you ever get bitten by a deer tick?” I said, “Yes, in 1984.” 

So, why have I shared this with you? Only two months of antibiotics (dycocycline) would have cured this disease if it had been caught early. If I can help one person avoid this disease, then this post is worthwhile. If you suspect that you or a loved one may have Lyme disease, feel free to contact me. I will gladly share my research and support network regarding Lyme disease.

Source: Admin