Hi folks,
Some of you may have seen my post about finally getting my lyme western blot tests back. I am deemed negative on the current UK testing procedures, but thanks to info from Trav it is clear I have two bands that are pretty indicative of lyme (41 and 33).
It was actually my family doctor that originally suggested lyme. I got a month of antibiotics while waiting for the lyme test, which made me feel much better. When the test came back negative, my doctor believed this meant I couldn't have lyme so was going to stop the antibiotics. I had to pay to see a private expert who diagnosed me symptomatically, and persuaded my family doctor to keep prescribing the drugs. Who knows what would have happened if I hadn't had the money, knowledge or support needed to get to the private consultant.
As much as it has been a horrible time, I do know that I am lucky to have been able to get my diagnosis and treatment. However, I want to do something to help others who don't have the same opportunities. I am considering putting in a formal complaint and/or getting a lawyer involved to complain about how my results were interpreted. I would love to be able to get the guidelines changed. But, I'm not sure if this will be a futile battle. In particular, I don't want my family doctor to get into any trouble for letting me have long-term antibiotics against standard guidelines.
Has anyone here tried the formal complaints route, or have any thoughts/advice? I just want to stop other people being in the same situation...
Thanks!