To NC Health Care Providers:
My Name is AMW. I contracted Lyme Disease (bitten in Chapel Hill, North Carolina) in April of 2000. I also contracted Babesisosis and Ehrlichiosis. My symptoms varied from feeling like the flu, to neurological implications (brain fog, memory issues, twitching) to being aware of it in my heart and not being able to walk upstairs without resting. By the third month, I often felt that I was close to needing a wheelchair as I could not be on my feet much at all. Many days were spent on the sofa or in bed because the symptoms were so awful and I was unable to function. It was not depression or lack of desire to function normally. It was the bacteria within me making me so ill.
I tested negative several times initially, even though I had Lyme specific antibodies. I was treated with antibiotics for a few weeks. Historically, I am one who tries everything else before I use antibiotics. However, with this illness (by week 5), I knew I was dying and begged for antibiotics. Because my tests were negative, the physicians were uncomfortable prescribing any more antibiotics. I knew I would not survive without them.
Ultimately, I sought a specialist out of state who did test for Lyme and co-infections; finally the test results were positive. After several months of multiple antibiotics as well as alternative treatments I was completely healed. In total, from tick bite to full recovery was about 18 months. I have not had any of it come back at all.
Lyme and their associated co-infections are clearly present in North Carolina. I urge you to acknowledge the presence of these devastating diseases. I was unable to work for many months, felt the financial hardship both from loss of income stand point as well as having to spend many thousands of dollars on what ultimately healed me.
Doctors, we ask that you educate patients on the presence of Lyme Disease in NC and the lab testing limitations. If you opt not to treat based on clinical symptoms, please refer patients to other resources such as www.ilads.org for other options.