Please keep us updated. I cannot be of any help since I have never heard of this,but I can surely add compassion as it must be agonizing not getting any medical help. One idea: there is a New York Times magazine series about difficult to analyze medical issues. It is written by a doctor from Yale medical school ( a woman) and is now being televised on Netflix. I’ll send the name in another post but in the meantime contact the editor of NYT magazine. I don’t know where you live (I live on west coast) but NYT should be available to you online.I believe you can be helped!