Since 1998

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My first bout with Lyme was in July 1998. I was fatigued and figured it was work-related. In September, I had a stiff neck, drenched 5 t-shirts a night in sweat, and was told by my doctor that it was just a virus. I was then bedridden, because I couldn't lift my head without it feeling like it was being crushed by a vice. Luckily, my neighbor was a doctor and wrote a script for me to be re-tested for Lyme. She was right. I was then put on a course of antibiotics for 3 months. After a year, my symptoms were gone. Fast forward to 2011. I started getting strange symptoms. Antibiotics usually cleared them - even when my new doctor said it didn't make any sense. My orthopedic surgeon retested me for Lyme in 2013 after finding no other reason for my pain. He was correct. Since then I'm on and off of antibiotics. I stopped working 2 years ago (for other reasons) and can't imagine trying to go back. I have nights where I'm in so much pain I don't sleep. I've been on a waiting list for a LLMD (Lyme Literate Doctor) for over a year. My symptoms are getting worse.

Most people don't know I have Lyme. I continue to "live" a "normal" life. I don't want to be defined by my Lyme and I don't want people's sympathy. All I want is a cure.

As a side note, my mother, who lives in the same town, has been diagnosed with Lyme twice. My son was diagnoised when he was 10 years old (five years after me and while I was in remission). My mother still has pain. I believe my son's struggles are also Lyme related.