Dr Grubbs team ‘Strongly Suggests’ Autoimmunity in Dysautonomia

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I can't for sure say it's working, but since I started, I have been able to discontinue 3 MCAS meds and just take quercetin and occasional benadryl and have normal MCAS test results and though I still take a beta blocker and Huperzine A, I am able to stand for 20 minutes without being dizzy and my ability to exercise without crashing has improved - I can walk 3-5 miles slowly or lift weights for 30-40 minutes or paddle a boat slowly, with some rests.
It's so nice to read that you had some improvements already!:hug:
 
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For those who know more than me, if autoimmunity is the underlying mechanism for POTS (or for a large subset), IVIG would be a possible treatment modality, no? (I know this is a broad question but just curious)
This is what the most current research is showing (that there is a huge autoimmune component or subset to POTS and that high dose IVIG can be an effective treatment). There are some excellent videos about this by Dysautonomia International with Dr. Jill Schofield.

Given @Gingergrrl's experience with retesting antibodies and the fact I'm still on IVIG, I'm not planning to spend the money to retest antibodies. Symptom improvement is what I'm looking for. I've been on Rituximab for 5 months, about the time I may start to see results.
The plan is to continue Rituximab for 3 more treatments 3 months apart.
In my case (as Learner1 mentioned), I had significant improvement with high dose IVIG and Rituximab but most of my autoantibodies did not go down (and I was no longer doing IVIG for quite a while at the time of the follow-up testing so this was not the issue).

Several of my Cell Trend autoantibodies either did go down (or actually went from positive to negative). BUT the two autoantibodies that I was positive for on the Mayo Panels (Anti GAD65 and N-type Calcium Channel Ab) remained positive. The anti GAD65 did go down after treatment from 1.6 to 0.08 (but was still strongly positive) and the Calcium Channel/LEMS autoantibody went from 0.05 to 0.06 (basically the same) but did not go down.

I have learned from my doctor and a lot of reading that Calcium Channel autoantibody levels do NOT correlate with symptoms. You can have high levels of autoantibodies but zero or minor symptoms and you can have low levels of autoantibodies and have disabling symptoms (like I did prior to treatment). You can also be sero-negative and not even show the autoantibody on a blood test (which was not the case with me but it can happen with the calcium channel autoantibodies).

My doctor (who is also Learner1's doc) thought that it was possible that no new autoantibodies had been made (b/c my B-cells were at zero for so long) BUT that prior autoantibodies were still showing up on testing but were no longer pathogenic or causing symptoms. This is just a theory though.

The bottom line in my case is that I had dramatic improvement from the treatments but it did not reflect in most of my autoantibody tests. (I also have Hashi's but those two autoantibodies constantly go up and down, do not relate to symptom severity w/my thyroid, and had no role in my treatment other than more proof of overall autoimmunity).

I hope that made sense!