April 25, 2015
Dear Members of the IDSA,
I am writing this letter in hopes of getting the guidelines for the treatment of Lyme disease and co-infections modified to better treat those of us suffering with debilitating chronic Lyme.
My Lyme story is long but the abbreviated version is that I have been really sick on and off for the past 25 years. At 12 years old I was diagnosed with Fibromyalgia. Now it is thought that it is more likely that I contracted Lyme disease at age 12 as I got bit by multiple ticks in my youth. I was treated for acne at age 15 with long term Tetracycline and started to function better and was able to live a relatively normal life. During this time I was sicker than most and always very tired. I also had a lot of pain in my body, mostly in my back and neck. In February 2011 I woke up with incredible pain in my thoracic spine. As a result of trying to fix the pain I have three major spine surgeries (ACDF 5-7 that was revised again levels 5-6 and an 8 level thoracic fusion) with no pain relief. Through all of this I continued to get sicker and was unable to work as of October 2012. I have been on over 30 different medications trying to reduce the pain. Other symptoms over the past three years have been blurry vision, fatigue, memory loss, Bell’s Palsy, severe joint pain, trouble walking, tremors, rib pain, gastrointestinal problems, and depression due to all the pain. Over the years I have had several Lyme tests and always had multiple positive bands but not enough to be CDC positive. In June of 2014 I tested positive through IGeneX. I have started on a long term treatment protocol which includes oral and IV antibotics. I have been diagnosed with late stage neurological Lyme (Borrelia) disease, Babesia, and Bartonella. My prognosis is that the treatment will take a long time and be difficult since I have had the bacterial and parasitical infections for 25 years. I struggle daily with extreme pain and fatigue. Every day is a challenge to get through and stay positive that I will someday feel better. I feel like I am a shell of the person I once was.
Through all of this I have met many other people struggling with this chronic disease. I personally know over 50 people who have Lyme disease, many in my home state of Minnesota.
Thank you for taking the time to read this. Please hear our cries for better testing, improved treatment guidelines, and to have a more balanced panel.