This subreddit is so much more accepting than most other chronic illness ones (read below)

So I was originally diagnosed with ME/CFS. With that being said, I saw CFS specialists and my doctor today is also a CFS specialist. I’ve met with the top ones. Dr Levine, Peterson, and more. They’re supposed to be the best of the best, and I still never knew what was wrong with me or felt better from any of the treatments I tried and I did them all (including the notorious nexavir injections)

When I met with my doctor that I have now, I kind of didn’t want to. I was over seeing CFS specialists who denied my positive igenex test. This doctor, de meirleir, was like “uhh yeah you don’t have Lyme, but you do have borrelia miyamotoi which mimics Lyme.” And goes on to tell me and show me that he’s finding it in OVER 87% OF HIS CFS PATIENTS! This bacteria! The remaining percentage? They all had regular Lyme disease. What do you know, my phage test comes back positive for miyamotoi and every. Single. Question. I have about my disease, he can answer it. His treatment? 99% success rate. The one person who didn’t get better didn’t do the protocol.

So what do I do? Well I go to r/cfs to spread the news! There’s a root cause and there’s evidence of it’s existence! There’s a bacteria!

What happens? I get banned. Lyme is a bad word to say in that community. “Most of us here already did that and it’s just a scam for llmds to make money off of us people who are sick and vulnerable” or “maybe that’s your story but that’s not going to be the rest of us”

Idk what to do to help over there, but I’m kind of over trying for now