Please could you advise me, what kind of doctor should I ask to be sent to in order to have my B cells assessed? An immunologist? Could they tell me if my B cells are manically over-active or over abundant?
My high levels of TPO (thyroid peroxidase) antibodies that led to my diagnosis of Hashimoto's Thyroiditis 13 years ago - that I was told was a life auto immune disease - have inexplicably dropped to normal levels.
(My T3 levels are still too low after all these years, and I've only just now found a doctor who will prescribe me T3 here in Israel where it has to be imported privately!)
I never catch any cold or virus my kids and husband bring home, when pre-ME I did. Is this a sign of over vigilant B cells?
Thanks for sharing your wealth of knowledge and experience here - it's enormously validating for us.
DisgustingThe problem is that physicians tend not to have a clue as to how complex B cell treatment is. I remember touring the US early on advising physicians and all they were interested in was the name on the drug label and how much money they would make. They were too busy to have to understand what the drug did.
So if an ME/CFS patient just wanted to see if they responded to rituximab by taking say a couple of infusions, would I be right in thinking that the protocol used for these initial infusions is not that important (provided safety procedures are followed).
Out of the 14 patients who tried rituximab, only 2 had long term positive results, and 4 had serious side effects.
The problems that arise with non-trial usage are illustrated by the situation in Germany. At least ten patients were treated there but we have no reliable information about them other than that none seem to have improved and one got considerably worse. There are all sorts of possible reasons why but we will probably never know.
When we give rituximab we destroy B cells indiscriminately. It is remarkable that it does not seem to lead to much in the way of infection risk. But there is every reason to think that at least in a proportion of people we will be removing useful B cells that one day will be needed.
Doctors understand why they use it in B cell cancer but not in autoimmunity.
When I had rtx I felt that I had nothing to lose. I was willing to take risks. It didn't do me much good, but it doesn't seem to have done any harm.
Nobody really knows because exposure to these viruses is very low in most communities. Physicians who use rituximab tend to re-inoculate for the ones that normally need boosters like tetanus. T cell responses to others may be good enough to prevent clinical infection. We do not have enough information yet.
I never catch any cold or virus my kids and husband bring home, when pre-ME I did. Is this a sign of over vigilant B cells?.