• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Gingergrrl

Senior Member
Messages
16,171
He's in Oklahoma. He discusses the drug starting around 33:00 in his recent talk at the Dysautonomia International conference.

I just watched this video of Dr. Kem and thank you so much for sharing the link. There were several very interesting parts (plus many parts that were way over my knowledge level)!

Someone in the audience asked him what he thinks causes autoimmune POTS and his initial response was that we still do not know but then he said two major things are the Epstein Barr Virus (EBV) which I had ten months prior to developing POTS and his second response is that it is "calcium mediated" which also pertains to me with the calcium autoantibody so I fit with both theories. Yeah for me :confused::(:aghhh::bang-head:.

Then someone asked him about IVIG and he said they were doing a 12 month study with autoimmune POTS patients with IVIG and in one patient who had improvement, her beta auto-abs dropped in one month and her alpha auto-abs dropped in four months. Sadly, they were using autoimmune dosing so I couldn't really compare it to me with the lower dosing. He also said that patients have had improvement with steroids, plasmapheresis and RTX. He said of course they cannot predict who will be the responders but that all of these have promise (I am paraphrasing and these are not his exact words). He said the problem is that IVIG is so expensive and insurance companies do not want to pay for it and sadly I see no way around this part.

I should be a slam-dunk case with all of these auto-antibodies but I don't think I will be.
 
Messages
3
Hi, I just got my daughter's results back from Germany and found my way to this forum. Thank you for creating this post and the linked posts. My daughter had sudden acute symptom onset about 18 months ago and was diagnosed with POTS by a cardiologist right away. Fatigue is her number one symptom but she also has brain fog, nausea, all-over pain, anxiety/depression, temperature disregulation, lack of appetite. She has mild dizziness but no fainting and doesn't complain of her tachycardia.

For some reason we didn't get M1, M2 and M5 results. We see our cardio in a few days and I'll ask whether he ordered them and if not I'll probably ask him to order those too (he bought a centrifuge to prepare the serum and draws the blood in his office - nice and easy). Here are the results (with the "positive" threshold in parentheses):

a1 - 33.5 (7)
a2 - 13.5 (15)
b1 - 26.5 (15)
b2 - 18.3 (14)
m3 - 16.1 (10)
m4 - 18.7 (7)

We see our POTS doc in a few days to discuss next steps. She take midrodine and more recently mestinon. She was taking a selective beta blocker that we stopped, but I think we need to add a non-selective beta blocker back in. Our doctor is aggressively pursuing IVIG for his patients but I don't know how that's going with the insurance companies but I'm sure we'll talk about that and other options too. I will keep an eye on this forum to see what paths everyone is pursuing. Thanks again.
 

Gingergrrl

Senior Member
Messages
16,171
We see our cardio in a few days

Did your cardio order the Cell Trend tests for your daughter? If so, that is amazing and none of my local docs know about these tests or are interesting in them.

We see our POTS doc in a few days to discuss next steps.

Is your POTS doc separate from the cardio that you mentioned?

Our doctor is aggressively pursuing IVIG for his patients

That is amazing and I assume you mean the higher autoimmune/neurological dose of IVIG? Can I ask where you are located? It sounds like you have some amazing doctors on board but am guessing you live nowhere near me! Everyone seems to be 6-7 hours north of me or in other states.
 
Messages
3
Did your cardio order the Cell Trend tests for your daughter? If so, that is amazing and none of my local docs know about these tests or are interesting in them.

Yes, he's been treating dysautonomia patients for a while (his daughter has it too) so he's been following the research and bought a centrifuge so he could draw the blood and prepare the serum himself. So nice to not have to go to the lab!

Is your POTS doc separate from the cardio that you mentioned?

No, they are one and the same. Andrew Maxwell. He's a pediatric cardiologist in the San Francisco Bay Area.

That is amazing and I assume you mean the higher autoimmune/neurological dose of IVIG? Can I ask where you are located? It sounds like you have some amazing doctors on board but am guessing you live nowhere near me! Everyone seems to be 6-7 hours north of me or in other states.

I assume so too. We talked a bit about his efforts to get his patients started on IVIG and he started telling me about the dosage and the way he arrived at the dosage he's trying with his patients but since we didn't yet have the test results and everything always comes up negative for her I didn't want to get our "hopes up" [I use that only in that it's nice to have a clue as to what's going on even if it means confirmation of something with no easy solution] so I didn't gt all the details. I'll post after our appointment on Tuesday.
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
No, they are one and the same. Andrew Maxwell. He's a pediatric cardiologist in the San Francisco Bay Area.

Thanks and I figured he was up in No CA. Finding a cardio or Neuro who is familiar with these issues in So CA has been impossible. I assume that he only sees pediatric patients as well? My main doctor is up north and has helped me tremendously along with my mast cell doctor who is local. Am focusing on finding a Neuromuscular doc and it is looking like I am going to have to travel to see one which is not realistic for me. Thank you again for the info and best wishes for your daughter. Hoping you will keep us posted.
 
Messages
3
I'm sorry you have had a hard time finding a doctor. We have been doing one-stop shopping with Dr. Maxwell because my daughter is so resistant to all of the medical prodding and experimentation so it's easier to just work with one, and he has a very broad approach and an open mind. But it would be nice to have more experts on board since much of what we're dealing with is pretty far from cardiology. He works hard to read all the research but he has a full-time cardiology practice too. He is looking to find a rheumatologist to work with given all the positives he's getting on this test.

He does only see pediatric but I have heard he will make exceptions for people up until their early 20s.

I didn't have a chance to read through your whole history and will try to do so, but do you have a POTS diagnosis? I am in close contact with a wonderful mom in SoCal who has seen a ton of doctors for her daughter in her early 20s and I would be happy to put you in touch. Coming at it from the POTS side, there's a lot of talk of MCAS and Ehlers-Danlos III, and "chronic fatigue" is just assumed to be a constant symptom for many of us. I'm just beginning to understand the nuances of having a CFS/ME diagnosis versus a POTS diagnosis and where they may be the same or different in how they manifest and in the underlying mechanisms.

Who is your doctor up north and what kind of doctor is it?
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Would a standard blood test for sjogrens test for some of these antibodies and if so, which ones?
No
http://www.mayomedicallaboratories.com/test-catalog/Clinical and Interpretive/82403
SS-A/Ro, SS-B/La, RNP, and Sm are autoantigens commonly referred to as extractable nuclear antigens (ENAs). Antibodies to ENAs are common in patients with connective tissue diseases (systemic rheumatic diseases).[....]
A positive result for SS-A/Ro or SS-B/La antibodies is consistent with connective tissue disease, including Sjogren's syndrome, lupus erythematosus (LE), or rheumatoid arthritis.

Testing algorithm: See Connective Tissue Disease Cascade:
http://www.mayomedicallaboratories.com/it-mmfiles/Connective_Tissue_Disease_Cascade__CTDC_.pdf
 

Navid

Senior Member
Messages
564
Hi, I just got my daughter's results back from Germany and found my way to this forum. Thank you for creating this post and the linked posts. My daughter had sudden acute symptom onset about 18 months ago and was diagnosed with POTS by a cardiologist right away. Fatigue is her number one symptom but she also has brain fog, nausea, all-over pain, anxiety/depression, temperature disregulation, lack of appetite. She has mild dizziness but no fainting and doesn't complain of her tachycardia.

For some reason we didn't get M1, M2 and M5 results. We see our cardio in a few days and I'll ask whether he ordered them and if not I'll probably ask him to order those too (he bought a centrifuge to prepare the serum and draws the blood in his office - nice and easy). Here are the results (with the "positive" threshold in parentheses):

a1 - 33.5 (7)
a2 - 13.5 (15)
b1 - 26.5 (15)
b2 - 18.3 (14)
m3 - 16.1 (10)
m4 - 18.7 (7)

We see our POTS doc in a few days to discuss next steps. She take midrodine and more recently mestinon. She was taking a selective beta blocker that we stopped, but I think we need to add a non-selective beta blocker back in. Our doctor is aggressively pursuing IVIG for his patients but I don't know how that's going with the insurance companies but I'm sure we'll talk about that and other options too. I will keep an eye on this forum to see what paths everyone is pursuing. Thanks again.

Hi CAPOTSmom:

Your daughters Dr. sounds great....only wish he was an adult Dr. too. Do you know what he will recommend for your daughters condition based on her CT results....IVIG, only?

Also what is the difference b/t a selective and non/selective beta blocker. I am currently on propranolol with no real benefit. The symptoms from the POTS/OI/NMH cause my worst problems.

Thanks!!

P.S. Do you know if Dr. has any Docs he would recommend for adults to see....in Berkeley/SF area?
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
Thanks @CAPOTSmom and @Gingergrrl for posting your results. This is useful information here, on the "how to get tested" thread, because certainly people want to see what a result looks like before taking the test.

All further people I would like to ask for a little more patience with posting their results: the result-reporting thread is in preparation! If you would like to take part in the preparation, at welcome at the preparation thread. There you can peak ahead how we can utilize all the information from your test, your symptoms, history and other medical tests to build treatment chances using things generally considered harmless.
 
Last edited:

Jo86

Senior Member
Messages
197
Location
France
Hello board. I'm about to embark on this quest myself. Just for quick background, I'm a "CFS" sufferer, 10 years, increasingly gets worse overtime, massive brainfog/feel awful all the time/hypersensitivity to everything from sound to movement to talking to people, major food intolerances... great stuff.
So I've read through as best I could, but though I see some of you have got positives which is very encouraging, I'm wondering if anyone's got any real relief from any treatment after this discovery. Gingergrrrl you say you've felt better energy wise, but how about things like brainfog/flu like-feeling-like-crap-generally symptoms ?
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
Hi @Jo86 you may be interested in the treatment thread here
Unfortunately, there is no simple way to turn the tests into vibrant health :) :eek:. @Gingergrrl is pioneering ivig for her pots, but it will take a while for results, in which I am very interested too. Freddy had plasmapheresis including ivig and got transient improvements in his cfs. The problem is that the antibodies reproduce after a while. Same for rituximab. Myself: I am trying different harmless stuff, see 2 posts abive this one, and get retested. If I see antibodies decreasing, then this shows me what helps, so I continue. This method is popularly called "N=1 study", which essentially is a method to resolve issues where there are no medical guidelines yet and not much treatmdnt studies. So honestly , taking the tests wont make you healthy and hard work is needed. But this way I resolved all my other problems before: ME, debilitating back pain, knee pain and some more. In all these, I found real solutions that give me permanent health. In no single case did any medications help me anything. I am determined to get rid of these antibodies and go back to a happy normsl life. These tests will help me in showing small first changes.
 

Jo86

Senior Member
Messages
197
Location
France
Thanks Lolinda. I know what you're saying. All I can do is look for stuff in my blood, hair, urine...whatever really. Hey btw, you wouldn't be French by any chance ?
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
Absolutely! Would you share yours too? Anyone else interested to share? Just look into the very first post on this thread. There you see that I announced that there will be such a thread where all people share results and symptoms, so we can compare.

Anyone reading this:
--> just put a like to this post to indicate that you would be imterested to share your results when they arrive.
--> or pls PM me if you already have results to share. I think of creating the thread when we are a few people. This will also give me some time to further learn interpretation :)
I have just had this test ordered for me by my doctor. So this is a bookmark for me. I will share my results.
 
Messages
97
Location
San Francisco, CA USA
Thanks @CAPOTSmom and @Gingergrrl for posting your results. This is useful information here, on the "how to get tested" thread, because certainly people want to see what a result looks like before taking the test.

All further people I would like to ask for a little more patience with posting their results: the result-reporting thread is in preparation! If you would like to take part in the preparation, at welcome at the preparation thread. There you can peak ahead how we can utilize all the information from your test, your symptoms, history and other medical tests to build treatment chances using things generally considered harmless.

Thank you @Lolinda. I had blood drawn for these tests today at OMI and I've bookmarked the preparation thread and will share my results. Thanks to @Gingergrrl as well as everyone else who's shared info about this.
 
Messages
53
Hello, All. I have been following this thread and it has helped when preparing my labs to send to Germany. Thanks for putting this together. I just received my results but have not discussed them with my doctor. I do not know for sure if they are significant before I do so but thought I would paste them here if it helps others. Thank you

Parameter Cut off Units/ml
Anti a-1- adrenergic Antibodies <7.0 U/ml: negative > 7.0 U/ml: positive 11.5 (positive)
Anti a-2- adrenergic Antibodies <15.0 U/ml: negative > 15.0 U/ml: positive 9.7 (negative)
Anti b-1- adrenergic Antibodies <15.0 U/ml: negative > 15.0 U/ml: positive 24.3 (positive)
Anti b-2- adrenergic Antibodies <8.0 U/ml: negative 8.0 – 14.0 U/ml: at risk 7.5 (negative)
> 14.0 U/ml: positive

anti-Muscarinic Cholinergic Receptor 1 - Antibodies <9.0 U/ml: negative > 9.0 U/ml: positive 21.4 (positive)
anti-Muscarinic Cholinergic Receptor 2 - Antibodies <9.0 U/ml: negative > 9.0 U/ml: positive 19.0 (positive)
anti-Muscarinic Cholinergic Receptor 3 - Antibodies <6.0 U/ml: negative 6.0 – 10.0 U/ml: at risk 8.0 (at risk)
> 10.0 U/ml: positive

anti-Muscarinic Cholinergic Receptor 4 - Antibodies <5.0 U/ml: negative 5.0 – 7.0 U/ml: at risk 5.2 (at risk)
> 7.0 U/ml: positive

anti-Muscarinic Cholinergic Receptor 5 - Antibodies <14.2 U/ml: negative > 14.2 U/ml: positive 12.8 (negative)
 

Kati

Patient in training
Messages
5,497
Hello, All. I have been following this thread and it has helped when preparing my labs to send to Germany. Thanks for putting this together. I just received my results but have not discussed them with my doctor. I do not know for sure if they are significant before I do so but thought I would paste them here if it helps others. Thank you

Parameter Cut off Units/ml
Anti a-1- adrenergic Antibodies <7.0 U/ml: negative > 7.0 U/ml: positive 11.5 (positive)
Anti a-2- adrenergic Antibodies <15.0 U/ml: negative > 15.0 U/ml: positive 9.7 (negative)
Anti b-1- adrenergic Antibodies <15.0 U/ml: negative > 15.0 U/ml: positive 24.3 (positive)
Anti b-2- adrenergic Antibodies <8.0 U/ml: negative 8.0 – 14.0 U/ml: at risk 7.5 (negative)
> 14.0 U/ml: positive

anti-Muscarinic Cholinergic Receptor 1 - Antibodies <9.0 U/ml: negative > 9.0 U/ml: positive 21.4 (positive)
anti-Muscarinic Cholinergic Receptor 2 - Antibodies <9.0 U/ml: negative > 9.0 U/ml: positive 19.0 (positive)
anti-Muscarinic Cholinergic Receptor 3 - Antibodies <6.0 U/ml: negative 6.0 – 10.0 U/ml: at risk 8.0 (at risk)
> 10.0 U/ml: positive

anti-Muscarinic Cholinergic Receptor 4 - Antibodies <5.0 U/ml: negative 5.0 – 7.0 U/ml: at risk 5.2 (at risk)
> 7.0 U/ml: positive

anti-Muscarinic Cholinergic Receptor 5 - Antibodies <14.2 U/ml: negative > 14.2 U/ml: positive 12.8 (negative)
Hi @kms1990 thank you for sharing your results. I wonder what's next, what to do with these results? And do you have ME? Thanks!
 
Messages
53
@Kati . I spoke with my doctor and he does think my results are significant. It seems like whats next is to figure out how to deplete or reduce these antibodies to see if it makes me feel better. I don't think I have classic CFS. Three different CFS specialists have said over the years I have a unique case with different immune markers than most of their patients. I do have tick borne infections and have responded significantly to Antibiotic treatment. However, something is still keeping me ill with a lot of strange dysautonima symptoms and neurological issues that come and go. Im hoping its these elevated antibodies. I think the options on the table are IVIG, Plasma exchange, and Rituxan. Ill keep this thread posted what we do and if it helps.

Im hoping I can try IVIG first because I already know I have infections which I think are contributing to my illness and probably kicked it off in the first place. Im not sure I want to take something like Rituxan which depletes a part of my immune system when I have infections my body is having trouble fighting off on its own already.
 

halcyon

Senior Member
Messages
2,482
Here are my results from Celltrend for whatever it's worth. I have ME and lab confirmed POTS/autonomic neuropathy.

Anti α1 adrenergic antibodies (> 7.0 U/ml) 23.3 (positive)
Anti α2 adrenergic antibodies (> 15.0 U/ml) 19.7 (positive)


Anti β1 adrenergic antibodies (> 15.0 U/ml) 11.0 (negative)
Anti β2 adrenergic antibodies (> 14.0 U/ml) 15.1 (positive)

Anti M1 cholinergic antibodies (> 9.0 U/ml) 4.5 (negative)
Anti M2 cholinergic antibodies (> 9.0 U/ml) 3.2 (negative)
Anti M3 cholinergic antibodies (6.0 - 10.0 U/ml at risk) 6.1 (at risk)
Anti M4 cholinergic antibodies (> 7.0 U/ml) 47.0 (positive)

Anti M5 cholinergic antibodies (> 14.2 U/ml) 2.4 (negative)

I haven't come across anything about the α2 antibodies yet; I don't think anyone else here has had them yet that I've seen.
 

RL_sparky

Senior Member
Messages
379
Location
California
Here are my Celltrend results for what it's worth:

Anti α1 adrenergic antibodies (> 7.0 U/ml) 11.2 (positive)
Anti α2 adrenergic antibodies (>
15.0 U/ml) 10.5 (negative)

Anti β1 adrenergic antibodies (> 15.0 U/ml) 15.0 (positive)
Anti β2 adrenergic antibodies (> 14.0 U/ml) 9.4 (at risk)

Anti M1 cholinergic antibodies (> 9.0 U/ml) 8.9 (negative)
Anti M2 cholinergic antibodies (> 9.0 U/ml) 19.5 (positive)
Anti M3 cholinergic antibodies (6.0 - 10.0 U/ml at risk) 7.5 (at risk)
Anti M4 cholinergic antibodies (> 7.0 U/ml) 6.0 (at risk)
Anti M5 cholinergic antibodies (> 14.2 U/ml) 23.8 (positive)
 
Last edited: