The Shame of Having Lyme I will never forget that day in March 1999, it was still cold outside and out of the clear blue I got so dizzy and I could not stand up. I went to the local clinic and they told me it’s probably just the flu. Ten days later I broke out with rashes that looked like I had some sort of plague. The rashes were extremely itchy and hot and I felt as if I were in Hell I immediately went to another clinic who when shown my rashes said this is Chronic Fatigue syndrome because the entire test’s came back negative for Lyme. Looking back I realize all the mistakes I made trusting doctors that don’t really know what they are doing. Now I realize it’s not their fault because the blame should fall squarely on the CDC and IDSA medical boards. They are responsible for so many of us going through this Hell and living nightmare. After seven years and thirty doctors and so many dead end streets, I finally decided to go to a LLMD. I was greeted with compassion by a wonderful doctor that understood my problem as being very real and not all in my head. Ten days later I got the best call of my life, my test was positive for Lyme and brain damage has occurred. The shame is finally ended. I knew I was sick all along, even two psychiatrists said I have a medical problem and in need of a doctors assistance. I wonder how much longer it will take for this shame caused by the IDSA on Lyme patients will be able to keep going on. When will someone stand up to the bullies and tell them to stop all the lies about Lyme This is a very real disease and I would not wish Lyme upon my worst enemy. There are 57 different strains of Lyme Disease and a patient can have up to 100 symptoms and Lyme ticks can come loaded with co-infections like Bart, Babes and more. Anyway the purpose of this letter is not to knock doctors but to let them know what a nightmare I went through, and still going through so this does not have to happen to others, especially the kids that have this awful disease. In the movie “UNDER OUR SKIN” Leslie Wermers had just died at the age of 41 when she had heart palps and died in her sleep. I never met her but I heard from so many including her own sister who also has Lyme what a Lyme advocate she was to so many people. What’s so sad is that the IDSA says nobody ever dies of Lyme Disease, I cannot tell you how angry I am at this ignorance. It really has to stop in the name of humanity and compassion. How can this have been allowed to go on Just because we do not look sick does not mean something like Lyme Borrelia is not multiplying inside us and working it’s destruction in our bodies. Destroying our brain, heart and the lining of our nerves are being destroyed by the Spirochetes. We don’t tell a cancer patient that you don’t look sick, so just grin and bear it and forget about it. When will a Lyme Patient get a break When will they give us the money for more research by Lyme specialists who understand Lyme Infectious disease doctors do not want to believe in Late Stage Lyme. Dr. Allen McDonald is an awesome Lyme researcher but he needs more money to work with. He has made leaps and strides for us Lymies who are really suffering with this awful disease. Why does it always have to become an epidemic before they wake up to what’s really going on My life is basically over but what about future Lyme patients and those with Autism, Dementia, Parkinson Disease Scientists are looking into a possible link to Lyme for these major diseases. We need someone to speak up for the weak and weary and to let the IDSA know we are tired of this incompetence and we demand someone with Lyme expertise in the field on these boards. Thanks for Listening

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