Lyme Disease Sufferers Need More Support

Three years ago, a doctor told me I would be confined to a wheelchair. But I am still standing.

It happened in Florida in December 2016. It became difficult for me to work, walk or just get out of bed. I felt pain in my muscles and joints, and it was severe.

I decided to see a neurologist. After four visits and three MRIs, the Florida physician advised me that I most likely had primary progressive multiple sclerosis and would need to use a wheelchair in less than three years.

The next step was a spinal tap to confirm the diagnosis. I waited three weeks for the results – the longest three weeks of my life.

When I walked into the doctor’s office to receive the results, I felt as though my life, as I knew it, was over. I just knew I was going to receive confirmation that the pain I was feeling was caused by MS; it would take over my body and I would soon be unable to work and do the many other activities I love. The doctor walked in my examination room, red-faced, and said, “Your spinal tap is negative, but I still think you have MS.”

A family friend called my mother that evening. She asked if I had ever been bitten by a tick. The answer was yes. The friend mentioned the possibility of Lyme disease. The suggestion proved to be the beginning of the end of my personal nightmare. A physician in New York City later confirmed that I indeed did have Lyme disease.

Most individuals who receive an early diagnosis of Lyme disease get better after receiving an appropriate treatment of antibiotics. In my case, perhaps because I did not benefit from an early diagnosis, I have required more extensive treatment. In 2017, I was on antibiotics the entire year. I am now on my second cycle of antibiotics and am feeling much better. In fact, I have recently just begun working out again.

I have discovered that Lyme disease can be difficult to diagnose. Many of the symptoms mimic other illnesses and the tests are not always accurate. There is considerable controversy involving the treatment protocols. We need to address this situation by fully funding research efforts to combat Lyme disease, and sadly, this is not happening. A year ago, New York State provided $1 million for Lyme disease studies. The most recent budget neglected to provide any Lyme disease research money.

Research funding on a federal level is equally discouraging. Combined, the NIH and the CDC funded only $39 million for Lyme research in 2017 – less than $100 for each person diagnosed with Lyme disease that year.

My experience has led me to the nonprofit organization, Southern Tier Lyme Support Inc., where I have recently become a member of the board. We meet every month and discuss our experiences. I encourage anyone who is confronting Lyme – a patient, family member or friend, to check out our website, www.stlyme.org and consider attending our meetings.

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