POTS, OH, CFS: List of labs which test for adrenergic and muscarinic receptor antibodies

[Jo86]

Hey GG. Thx for the answer. I don't mean to commit to anything by saying this, but I reckon if you've got so many positives on the Celltrend test, that surely you qualify (or at least, would qualify for those two original Norwegian oncologists). I do have the high anti-TPO, but the other "regular" indicators in autoimmune bloodwork (anti-nuclear, etc..) are normal.

I've tried finding an answer (as to how many 'positives' are needed) but came out with nothing, so thought I'd ask here.

The basic known theory here, just to recap, is the B cell lymphocytes that create antibodies (to usually protect us against viral, bacterial, food, etc...alien presences) go crazy for some reason and start attacking the native tissues and cells. Rituxan attacks those "new" B cells and destroys them (as opposed to older 'memory B cells').
Now, how sure can we be our B cells really are going mad (but through the Celltrend tests). Regular bloodcount only shows up so much, and there's always the question of reading the results right (a classic doctor will say there's nothing, a more modern/alternative one will say there's something...).

We don't know what organ in particular (as opposed to common autoimmune diseases) is being attacked with those new tests. Seems like a more general thing regards to the nervous system, neurotransmitters...

 

[Gingergrrl]

Hey GG. Thx for the answer. I don't mean to commit to anything by saying this, but I reckon if you've got so many positives on the Celltrend test, that surely you qualify (or at least, would qualify for those two original Norwegian oncologists). I do have the high anti-TPO, but the other "regular" indicators in autoimmune bloodwork (anti-nuclear, etc..) are normal.

@Jo86 Sorry for my delayed reply and I couldn't find this thread! I tend to agree with you that I could be a responder to Rituximab (RTX) based on my autoantibodies (compared to the research subjects) but still no guarantee of anything.

I've tried finding an answer (as to how many 'positives' are needed) but came out with nothing, so thought I'd ask here.

I don't think there really is an answer at this point.

The basic known theory here, just to recap, is the B cell lymphocytes that create antibodies (to usually protect us against viral, bacterial, food, etc...alien presences) go crazy for some reason and start attacking the native tissues and cells. Rituxan attacks those "new" B cells and destroys them (as opposed to older 'memory B cells'). Now, how sure can we be our B cells really are going mad (but through the Celltrend tests). Regular bloodcount only shows up so much, and there's always the question of reading the results right (a classic doctor will say there's nothing, a more modern/alternative one will say there's something...).

This is my basic understanding as well. Traditional doctors have no interest in these tests b/c they do not understand them and they are not U.S. tests but in my mind, they are very important and crucial tests that are ahead of their time.

We don't know what organ in particular (as opposed to common autoimmune diseases) is being attacked with those new tests. Seems like a more general thing regards to the nervous system, neurotransmitters...

My understanding is that some of the Cell Trend auto-abs show autoimmune POTS b/c they attack the beta-adrenergic receptors (and I have had POTS since 2013 and it started out viral but now autoimmune) and others like the anti-muscarinic auto-abs show muscle weakness b/c they attack neuro-muscular junctions. But they do not have a formal disease name like Lupus, Myasthenia Gravis, etc, at this point in time.

 

[Cheesus]

How are you doing with the IVIG, @Gingergrrl?

I am thinking of having this test done. I don't have POTS, so I assume I do not need to get all 9 tests. Is that correct?

 

[Gingergrrl]

How are you doing with the IVIG @Gingergrrl? I am thinking of having this test done. I don't have POTS, so I assume I do not need to get all 9 tests. Is that correct?

I am doing well with the IVIG and am actually at Day 2 of this IVIG cycle right now. I would talk to your doctor re: which of the nine tests he or she wants you to do. I did all nine tests since I was already going through the process of sending the blood sample to Germany from the US and was very curious what the results might show.

 

[Cheesus]

@Gingergrrl

Thanks! That is great to hear. I don't have a doctor can't find one that takes me seriously and isn't a quack.

I just read another thread about this test. I am less enthusiastic about it now. The prof and a number of others seemed to think it would not be a reliable diagnostic tool.

 

[Gingergrrl]

@Cheesus I found the tests helpful especially b/c they tested for these auto-abs in the Rituximab study/journal article.

This test is not available in the US and they test the anti nicotinic autoantibodies here (for MG) but they don't test the anti muscarinic auto-abs which I suspected were a problem in my case and it turned out that it was.

I am hoping that some day this test will be offered in the US, and that it will become more mainstream, but IMO it is solid vs. quackery.