Don't know if this would help anyone and I don't know anything about this illness, but just wanted to report something that happened to me. I was doing EDTA chelation and brought the dosage up higher and higher. After some time of doing that, I think I really got rid of some bad minerals but probably also good minerals. The only side effect of the chelation that I experienced was extremely burnt, red and peeling lips. It hurt a lot and sound a little like this illness. So I stopped the chelation after that and haven't started again out of fear of this. The lips eventually healed, and I was eating a lot of minerals. Perhaps mineral disturbances might also have an impact on your illness. Just a thought that I had.