Gingergrrl
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Please note that this is in no way a diagnostic or clinically useful test. The differences between ME and controls found by Scheibenbogen are only statistical and not very big.
If you removed the ME/CFS vs. "controls" and just looked at the autoantibody results in general, could they be significant for autoimmunity? Meaning if one person did the test twice and was negative on all nine autoantibodies and someone else did the test twice and was positive on 7+ of the nine autoantibodies (and was symptomatic), wouldn't this mean something?
Gingergrrl I am not sure off the top of my head the antibody my neurologist sent for but will confirm will report results when I get them
Thanks. Rossy, and I would love to learn which autoantibodies Oxford tested you on once you get the info.
I have been tested twice for these antibodies. Once by cell trend, the other by a German university hospital because of my POTS. Both times negative.
Thanks, Jimmy, for sharing this and to me it is significant that you were tested twice but do not have the autoantibodies. Although I would never speak for my doctor, I would imagine that he would interpret this to mean that the cause of your POTS is not autoimmune vs. someone like me who he views as having "autoimmune POTS".
I've also had very high ferritin and high homocysteine.
That is interesting and I also have very high homocysteine (16 to 19 on last two tests) but normal Ferritin.
I agree that the repeated suggestion that TGFbeta is high may be a more promising lead, although I do not discount the antibody results being an indirect indicator of something else that may come to light in time.
I also believe that TGF- b1 is a promising lead and from my experience, it can also relate to mold exposure causing inflammation. My prior mold doctor tested me for TGF-b1 and it was 9400 in 2015 (at the height of my mold exposure) and it is currently around 2100 (within the normal range which I believe cuts off at 2380). I am not saying that mold is the only trigger of TGF-b1, but in my case, it was definitely a trigger and I improved once being removed from that environment and getting rid of our belongings.