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CFS, POTS, OH: treatment for adrenergic & muscarinic receptor antibodies

Gingergrrl

Senior Member
Messages
16,171
I'm not sure if it's a "red flag". I've tried to contact one doctor from the list. His answer was:

I apologize for my confusion but which doctor were you referring to who made those comments re: the Cell Trend results? I clicked on the link but it seemed to go to Lolinda’s profile vs. a list of doctors. Thanks for any info!
 

Malea

Senior Member
Messages
260
In the past I had the chance to take part in a study of a german researcher (Gerd Wallukat) who also tested for a lot of these autoantibodies (with another method) and my results were similiar to the celltrend results.

The researcher told me he isn’t a supporter of the celltrend-elisa-test because it only detects the autoantibodies which are there in high numbers and doesn‘t look for the functionality of the autoantibodies. He looked with his method for the functionality of them: In his theory there are possibly autoantibodies who have a main role (like a leading function) and others who are activated because of the main/leading ones.

For example in my case that meant: He found a lot of autoantibodies (even some I never heard of...like nociceptin, PAR1, MAS,...). But when he antagonised the function of the autoantibodies against beta2-adrenergic and the muscarinic2-receptors in the lab, all the other autoantibodies couldn‘t be detected anymore. So, in my case he thinks the beta2-adrenergic and muscarinic2 are the main/leading ones who are possibly activating others.

It‘s a different approach, but I think what is for sure is that the celltrend results are somehow to be taken seriously.
 
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Gingergrrl

Senior Member
Messages
16,171
Please open 1st page of this thread, the doctor is 2nd in the list of doctors (first post).

Thank you for explaining and I did not realize that the list of doctors from was in this thread :D:bang-head:

In the past I had the chance to take part in a study of a german researcher (Gerd Wallukat) who also tested for a lot of these autoantibodies (with another method) and my results were similiar to the celltrend results.

That's interesting and I was not sure if you had ended up participating in the study. I'd love to hear more about it some time.

So, in my case he thinks the beta2-adrenergic and muscarinic2 are the main/leading ones who are possibly activating others. It‘s a different approach, but I think what is for sure is that the celltrend results are somehow to be taken seriously.

So he thinks the beta adrenergic and anti-muscarinic auto-antibodies are the main ones that are possibly activating the others? Is his study going to be published and is it affiliated with Dr. Scheibenbogen's studies or unrelated? I definitely think it shows that the Cell Trend autoantibodies are to be taken seriously b/c I know several people who are negative on all of them vs. others like me who have high positives on almost all of them. I think time will tell exactly how they translate into clinical symptoms like Autoimmune POTS, muscle weakness, ME/CFS, etc.
 

Malea

Senior Member
Messages
260
Hey @Gingergrrl :)
The study from Dr. Wallukat was from last year and it was just a blood test.
(Currently, I wasn‘t accepted for a Charité-study I had hoped for. I think I wrote to you about this one some time ago.)

So he thinks the beta adrenergic and anti-muscarinic auto-antibodies are the main ones that are possibly activating the others? Is his study going to be published and is it affiliated with Dr. Scheibenbogen's studies or unrelated?

I‘m not totally sure if Dr. Wallukat thinks the beta2 adrenergic/muscarnic2 are generally the leading ones vs. in my case (and in other cases other ABs would have this role). The message he wrote me didn‘t make that clear. (And everything he wrote was pretty hard to understand for me with no scientific background)

Unfortunately I havnt seen any (current) paper published from Dr. Wallukat and have no idea if he plans to do so.

I think Prof. Scheibenbogen nowadays only works with celltrend, not with Dr. Wallukats method. This was different some years ago, but I don‘t know why they changed it.
 
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Gingergrrl

Senior Member
Messages
16,171
Hey @Gingergrrl :) The study from Dr. Wallukat was from last year and it was just a blood test. (Currently, I wasn‘t accepted for a Charité-study I had hoped for. I think I wrote to you about this one some time ago.)

Hi Malea :), Thanks for explaining and I did think you were talking about the study that you had told me you might do at the Charite. I didn't realize that you had done a different study earlier.

I think Prof. Scheibenbogen nowadays only works with celltrend, not with Dr. Wallukats method. This was different some years ago, but I don‘t know why they changed it.

That is interesting and I was not sure if the different researchers in Germany were working together on this and comparing notes or were all totally separate (and it sounds like they are separate).