Results of the German Cell Trend laboratory for POTS

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I have a1 and m4 antibodies and my dysautonomia specialist raised my dose of Mestinon to 60mg a day from 30. I am no longer dizzy and have trouble standing for periods of time. I'm not sure GWI patienrs are anything like me.

If you are really sensitive to tnings, do you also have MCAS?
Very interesting. Did you get the whole panel tested like I did? What were the numbers?

Also even if there are these antibodies I believe the root of the problem can still be in the neck and testing for craniocervical instability and similar condition s is important which I will do. MRI upright with flexion extension and rotation and viewed by neursurgeon familiar with the condition or neuroradiologist familiar with it.

The body may be creating these antibodies to compensate to block the receptors or confused. Everybody has them so the body produces them, but elevated shows malfunction.

I don't know if I have MCAS but very familiar with it and thought I might. No deadly reactions though.
 

Gingergrrl

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Thanks for such a detailed answer @Gingergrrl I’ll report back when I know more. Am trying new medications and getting new tests so it will take a little time to get this sorted out—where I am at and how best to proceed.
No problem and please keep us posted once you decide how to proceed with your treatment and best wishes to you in the process.

I don’t think I have had the two panels you mentioned last, but in the blur of testing, I might have missed something.
They are Mayo panels with very similar overlapping tests (DYS1 and PAVAL) so you really would not need both. They are testing for autoimmune dysautonomia and paraneoplastic autoantibodies. In my case, they were the turning point and it was really helpful to learn which autoantibodies I was positive for.

You can see my results login to see.
Wow, our results are similar except most of my numbers were in the 20's. I don't think I have seen any as high as yours in the 50's and wonder what that means!

So, as far as I'm concerned I have dysautonomia, or autoimmune dysautonomia
It definitely looks that way. "Autoimmune POTS" and "Autoimmune Dysautonomia" were at the core of my illness as well (with a few other additional bonuses :confused:)

I also have a prescription for Mestinon and Florinef.
I did not do well with either of those meds but we are all so different that this doesn't really mean anything.

Also even if there are these antibodies I believe the root of the problem can still be in the neck and testing for craniocervical instability and similar condition s is important which I will do.
I agree and don't think that those two issues are mutually exclusive at all.
 

Learner1

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Very interesting. Did you get the whole panel tested like I did? What were the numbers?
Yes. Much lower than yours, but I had signidivant POTS symptoms that have benefited hugely from treatments.

The body may be creating these antibodies to compensate to block the receptors or confused. Everybody has them so the body produces them, but elevated shows malfunction.
Amd malfunction can make us pretty miserable and put us at risk for serious complications.

I don't know if I have MCAS but very familiar with it and thought I might. No deadly reactions though.
MCAS doesn't have to provoke a deadly reaction to slowly destroy your life. It can slowly simmer away creating a myriad of symptoms. I believe it may have been a factor in my cancer. Worth looking into.