Hello
@Inara, yes, my treatment is for CFS/ME. I consider myself to be a textbook case, given my symptoms and diagnosis criteria (with very few exceptions).
Rituximab + IVIG is what
@Gingergrrl does and as I understand that's a protocol that is mainly targeting autoimmunity. I have no evidence for any autoimmunity. In my case we suspect herpes virus, esp. EBV, as the cause.
So, therefore, we have no plans to do IVIG with or without Rituximab at this point. What I plan to do is to continue on antivirals (Valacyclovir) on which I have made substantial improvement.
Regarding the oncologist, I am very sorry to say I cannot reveal the name. He is still reluctant to participate in this effort, because it's off-label and a legal gray area in Germany, and he is also not the one who will administer the Rituximab (if we decide to do so). That would be done by a physician in my family who I know is doing it only because it's a family matter and would never offer it to other patients. The oncologist is only advising on how to adminster the drug and what control tests are needed.
Therefore, I regret that I can't give you a more positive answer and I cannot reveal the name of either physician. But that being said, it wouldn't help anyone if I did, because both physicians would 100% refuse to treat any other patient with Rituximab at this point.
Are you in Germany (or near abroad) and are you looking for a doctor who does Rituximab?