A Life with Lyme

After living in the two most endemic places for Lyme in the U.S., New York & Rhode Island, I developed the EM rash.  Once moving to Texas in 1979, no one even knew what Lyme was and when I went to my doctor he took pictures of my rash as he’d never seen anything like it. Over the next 35 years I went from one crazy illness to another: Rheumatoid Arthritis with a positive RA factor, a weird knee arthritis to the point I had to use a scooter to get around, heart arrhythmia’s and ventricular tachycardia with beats as fast as 300 per minute when exercising. Then I moved along to MS, next came Friedrich’s Ataxia and Cerebellar Ataxia! By this time I was very frustrated and so tired of neurologists and the pain they caused that I was ready to give up. I finally asked for a Lyme Disease test and was given the ELISA test which came back negative.

I continued to have strange problems, developed Diabetes Insipidus which went away after about a year. Then came Erythropoietin deficiency Anemia (requiring an oncologist and bone marrow to figure out that one). Then it was Hypothyroidism and I finally clued into the fact that something was really off with my pituitary gland. I was so fed up at this point, but kept thinking I had Lyme disease. Since no one would order a Western Blot for me I decided to do a Lyme Disease panel online. Well guess what? The Western Blot was positive! I went to a Lyme doctor and got on antibiotics which have helped some.

This merry-go-round of expenses, weird diseases and diagnoses are most likely Lyme-related though I’ve never been able to get back to my “old self”. I’m still undergoing treatment and hoping that at some point I will recover! Meanwhile, it’s a very costly endeavor and I’ve wasted over 35 years of my life! I had to take a disability retirement way back in 1993 at the age of 44! I’ve been using a wheelchair since 1991 and drive with hand controls. I still try to exercise and eat right but the fatigue is a killer! To think most of this might have not have happened had someone listened to me.

I realize I’m very blessed however as I don’t have a lot of other disorders associated with Lyme – just the one! I’m not sure if I’ll ever completely recover but I’ve adapted over the years to a “less than normal life” and I have a positive outlook no matter what!

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