Wonkmonk said: I am wondering: Could there be different segments of patients with regard to the activity of the immune system? I have seen reports of: Click to expand...

Wonkmonk said: (1) Patients who have lots of problems with allergies/ autoimmunity and normal or mildly elevated herpesvirus antibodies who never catch a cold (e.g. @Gingergrrl Click to expand...

Wonkmonk said: In patient Group 1, one could hypothesize that their immune system is overactive because it's partly in self-destruct mode. These patients might improve with Rituximab. Antivirals don't help. Click to expand...

Wonkmonk said: In Group 1, the challenge would be to find broader or better targeted immunosuppressive drugs in addition to or instead of Rituximab and to help control the autoimmunity (e.g. with IVIG). Click to expand...

Wonkmonk said: I applied to be accepted as a patient at the Charité. One question was if I was feeling sick constantly or having more colds and illnesses as usual. I stated that to the contrary I never get sick and I was told that for this reason I won't be accepted, because the Charité focuses on immunocompromised patients. Click to expand...

Wonkmonk said: So they are selecting the subgroup among CFS patients who like Mr. Bodden are in the group with the weakened immune system. From this perspective, it is not surprising that Rituximab wasn't the right drug for that group of patients. Click to expand...

Wonkmonk said: So maybe - as Dr Mella said in his lecture posted elsewhere - it is really all about patient selection and despite the negative recent trial, there is a group of patients that benefits from Rituximab and it has just not been identified. Click to expand...

Learner1 said: Jarred Younger found an infection group and an autoimmune group in his research. Click to expand...

Learner1 said: The infections many of us have, especially EBV, are notorious for causing autoimmunity, and some of us are more prone to autoimmunity genetically. Click to expand...

Learner1 said: There seem to be a number of other patients here who developed autoimmune POTS and/or MCAS as a result of infections. (My ME/CFS specialist says half of his patients have autoimmune MCAS, not genetic mast cell disease.) Click to expand...

heapsreal said: Alot of drs get nk function and nk numbers tests mixed up. Nk function test isnt a common test like the nk numbers is. Click to expand...

In my opinion, which is very similar to yours, there are at least two groups in regard to activity of the immune system (and for lack of better terminology, I'd call them under-active, overactive, and mixed).This describes my situation well except that I had extremely high antibodies to EBV (IgM+ and EA+) for 3-4 yrs post Mono (2012). They finally went down in 2015 (pre IVIG & Ritux) but I have not tested them recently b/c my doctor said that antibody tests will not be accurate for me as I have done 1.5 years of IVIG (and am still doing it at present). Eventually once I stop IVIG completely and several months have passed, it may be possible to do antibody tests again but I am not certain of this. PCR tests, however, would still be accurate for me.This is what my main doctor said and that my immune system remains in hyper-drive where it immediately attacks any pathogen it comes into contact with. But the downside is the autoimmunity and it continues to attack my own body.I guess this is why IVIG has worked so well for me, especially re: putting the MCAS and allergic reactions into remission. Last night I ate pizza and chocolate chip cookies with my daughter & niece, with no MCAS meds, and no longer have any concerns about allergic reactions. Even with a Benadryl injection 30 min prior to ingesting food plus eight other MCAS meds, this would have killed me in 2015.That is really a shame that they only accepted patients who had constant colds or illnesses. My understanding of ME/CFS (from this board and am not talking about myself) is that about half the patients fit that description but the other half literally lost the ability to get a cold or traditional illness.I agree.I agree with this as well but I know that this opinion is in the extreme minority.Agree with this, too.Agree, too, and I believe in my case (as do my two doctors) that the EBV shifted into autoimmunity. I had the additional factor of several years of exposure to toxic mold in a former rental and I feel that the combo of viral infection and mycotoxin exposure caused the shift into autoimmunity (in my case).I agree with this statement although my MCAS doctor uses different words (which might just be semantics). He feels that Mastocytosis is always 100% of the time the primary disease and is life-long (I think what you are describing as genetic) vs. MCAS is a secondary disease and can be life-long or it can go into remission with treatments like IVIG (which happened in my case). My MCAS doctor does not describe MCAS as an autoimmune disease (and it has no identifiable autoantibodies) but it is definitely a shift in the immune system toward hyperactivity/chaos.Both my main doc and MCAS doctor feel that I have "Autoimmune POTS" though, and I believe that the entire concept of Autoimmune Dysautonomia will some day be better understood by science.I agree although in my case, it truly was NK functioning that was tested and being referred to by the doctors I mentioned. My NK numbers were always normal (and never low) but my NK functioning was extremely low.