I believe Lyme misdiagnosis and mistreatment is an under-appreciated, urgent problem for the global ME/CFS community. My impression, informed in part by my own experience being misdiagnosed and mistreated for Lyme by a well known “Lyme Literate” doctor, is that someone with textbook ME symptoms, and, in my case, even a clear viral trigger, is virtually guaranteed to be diagnosed with Lyme by these practitioners. Almost always, as was my case and as I’ve heard so many times from North American people with ME, the “confirmatory” evidence was from an Igenex test—an alternative lab recommended against by American medical bodies due to its shocking rate of false positives.
Inevitably, people are prescribed expensive supplement regimens and often lengthy courses of antibiotics. I myself was prescribed nearly 2 years of IV antibiotics through a PICC line. I was soon after diagnosed with Crohn’s disease and ulcerative colitis which I’ve been told raise my risk of cancer and for which I’ll always need to take medication. I would be surprised if this wasn’t related to the antibiotics. It was the early 2010s: I was 16 years old at the time, had classic ME symptomatology following mono, and was told by this well known Lyme doctor (coincidentally, the son of an Igenex founder!) after years of antibiotics and alt med hadn’t helped me that “Western medicine can do nothing more for people like you right now.” I haven’t seen anything since to suggest his dangerous ignorance isn’t typical of alternative Lyme practitioners.
