Angiotensin II Type 1 Receptor Autoantibodies in Postural Tachycardia Syndrome, 2018, Yu et. al.

[pibee]

(If they still have my blood from the POTS-Panel last month, which they weren't sure about when I called, I will have the antibody tested.)

damn i tested in October, guess shouldnt even hope they have my blood... usually labs keep blood quite longer.

 

[Gingergrrl]

As I remember, Vanderbilt tested for this but probably only on patients in their Autonomic clinic--might be worth checking though.

I know Vanderbilt is one of the best for autonomic testing but there is no possible way that I could travel there for too many reasons to even list! If I do anything, I might send new blood sample to Cell Trend to test for it.

Here is an important point: there are a number of causes for POTS and while decreased NO is an important subset, it is probably not true for the majority. (increasing NO is Julian Stewart's usual treatment choice). If you increase NO, you increase vasodilation. The majority of POTS patients seem to respond better to vasoconstriction (hence Midodrine works).

In my case, vasodilation makes me worse and vasconstriction (like Midodrine) is very helpful. In relation to the study (which I still have not had time to read but it is on my list ), does that mean that people w/this particular auto-antibody, do better w/vasodilation? Is Losartan a vasodilator? If so, then I know it would not be helpful for me. I think I got excited re: that study b/c I interpreted the small section that I read to mean that if you had that autoantibody, it was further evidence of Autoimmune POTS (which I already know I have) so I wondered if that med could pertain to me. But I know it is a long-shot. Once I read the study, I will be able to comment better.

damn i tested in October, guess shouldnt even hope they have my blood... usually labs keep blood quite longer.

You never know how long they keep the blood samples (if they freeze them?) but I agree it is probably unlikely since it was from Oct! Mine was from 2016 so if I want to test for this auto-antibody, I'd have to start from scratch. I'm still not sure if it's worth it for me (but it might be). Do you think you will test for it @pibee ?

 

[Gingergrrl]

(If they still have my blood from the POTS-Panel last month, which they weren't sure about when I called, I will have the antibody tested.)

I missed this part but if you decide to do the test @Malea, please let me know what happens!

 

[JES]

Olmesartan, another angiotensin II blocker, is active against coxsackievirus B3, one of the viruses that is associated with CFS/ME and is probably the most common one to cause of myocarditis.

Edit: losartan also seems to share this property (source).

 

[Malea]

I missed this part but if you decide to do the test @Malea, please let me know what happens!

I got my result from the ATR1-antibodies test today and it‘s positive. (And so much higher than my results for the adrenergic and muscarinic antibodies)
I guess I have reading work to do now!

I asked again at celltrend how long they‘re keeping the blood samples and unfortunately it is only around 4 weeks.

 

[Malea]

Oh and Celltrend expanded their POTS-Panel with the ATR1-antibodies and endothelin-antibodies this week.

 

[Gingergrrl]

@Malea thank you for sharing your results and I am going to ask my doctor if he thinks it is worth it for me to do the new Cell Trend testing.

In the past he felt that knowing if I had additional autoantibodies would not change my treatment plan (IVIG & Rituximab) but this autoantibody sounds different if people who test positive might benefit from Losartan for POTS?

I need to read more about all of this as well. When I get more organized, I might send you a PM

 

[Malea]

I responded extremely well to Strattera, a norepinephrine reuptake inhibitor.

I have a question that has nothing to do with the angiotensin-topic but I just came across what you wrote earlier.
I had a total system crash last year when I tried a lot of things which I now know have been really wrong. One thing I did at that time was to stop Venlafaxine (after 5 years of taking it), which is also a norephinephrine reuptake inhibitor.

Is there a possibility that the norephinephrine reuptake inhibitors generally could stabilize POTS? (So one of the reasons I crashed so badly could be that next to the withdrawal I took away the only thing that stabilized my POTS?)

I‘m sorry if this is too far away from the main topic and will delete it if not okay.

 

[Malea]

@Malea thank you for sharing your results and I am going to ask my doctor if he thinks it is worth it for me to do the new Cell Trend testing.

In the past he felt that knowing if I had additional autoantibodies would not change my treatment plan (IVIG & Rituximab) but this autoantibody sounds different if people who test positive might benefit from Losartan for POTS?

I need to read more about all of this as well. When I get more organized, I might send you a PM

Would be happy to read from you.

I‘m still very confused about these antibodies and a bit worried, because they have also been found in sclerodermia which often starts in the fingers with Raynaud‘s. And as I‘ve developped a very strange form of Raynauds in the past year the results make me a bit nervous now.

——————————

And, a question: If Losartan is a angiotensin blocker and it is helpful for people with these antibodies the receptors might be activated from the autoantibodies?

 

[Gingergrrl]

I‘m still very confused about these antibodies and a bit worried, because they have also been found in sclerodermia which often starts in the fingers with Raynaud‘s. And as I‘ve developped a very strange form of Raynauds in the past year the results make me a bit nervous now

Do you mean the angiotensin receptor autoantibody specifically correlates with scleroderma? Are you working with a doctor or interpreting the results on your own?

And, a question: If Losartan is a angiotensin blocker and it is helpful for people with these antibodies the receptors might be activated from the autoantibodies?

I’m not sure if I understand this question? I tried to read that study re: Losartan but got kinda lost and didn’t really understand it (beyond that it can help some people with POTS). Have you tried Losartan?

 

[pibee]

@Gingergrrl , yes I'll likely test them, even though they threw away my samples so i need to resend. But i want to have as much as possible documented info about my condition before I do some drastic treatments.

 

[Gingergrrl]

@Gingergrrl , yes I'll likely test them, even though they threw away my samples so i need to resend. But i want to have as much as possible documented info about my condition before I do some drastic treatments.

Thanks @pibee and do you know if Cell Trend has a new lab requisition form for the angiotensin autoantibody test? Is it just one new test or are there others, too? I don't need to repeat the nine that I did before but would like to do the angiotensin test and any other new ones that they offer. No worries if you don't know!

 

[pibee]

Thanks @pibee and do you know if Cell Trend has a new lab requisition form for the angiotensin autoantibody test? Is it just one new test or are there others, too? I don't need to repeat the nine that I did before but would like to do the angiotensin test and any other new ones that they offer. No worries if you don't know!

I dont know, i'll just send my samples and email them or call them or write on my test tube.
I am thinking should I repeat at least some former muscarinic/adrenergic antibodies to check again. Not all but just some that were highest. For me highest was alpha1 adrenrgic, B2, and M4.

 

[Lisa108]

The Celltrend homepage is available in english, too. (link here)
The new form for the lab tests is on the end of this page here

 

[Gingergrrl]

The Celltrend homepage is available in english, too. (link here)
The new form for the lab tests is on the end of this page here

Thank you so much @Lisa108 and I just bookmarked this info on my computer. I am going to ask my doctor about the two new Cell Trend tests:

• Angiotensin-II-Receptor-1 (AT1R) IgG-auto-antibodies
• Endothelin-Receptor-A (ETAR) IgG-auto-antibodies

I am confused, though, what is the second test "Endothelin-Receptor-A (ETAR) IgG-auto-antibodies"? I need to read more about this in addition to asking my doctor. If I am reading the Cell Trend prices correctly, it looks like each of these tests cost 27 Euros or $33 which is very cheap (although still expensive when you add in the fee for a private blood draw and shipping it from the US to Germany with Fedex Overnight International). But I would love to know if I have the angiotensin autoantibody (and am not sure yet what the second one is or can't remember)!

Thank you again, Lisa, for linking me to the info in English and I really appreciate it!

 

[Malea]

Do you mean the angiotensin receptor autoantibody specifically correlates with scleroderma? Are you working with a doctor or interpreting the results on your own?

(...)

I’m not sure if I understand this question? I tried to read that study re: Losartan but got kinda lost and didn’t really understand it (beyond that it can help some people with POTS). Have you tried Losartan?

Unfortunately I havn‘t found a doctor yet who knows anything about the autoantibodies. I‘m happy to have one doctor who is open to learn with me together, but of course this is all new to her, too and she doesn‘t have the time to do much further reading.


Yes, I meant that the angiotensin-autoantibodies (and also endothelin-autoantibodies) also correlates with scleroderma: http://www.celltrend.de/tl_files/in...Riemekasten- ATR1 ETAR Systemic Sclerosis.pdf


I think it is really interesting that there is a similar mechanism (these autoantibodies) found in POTS- and Scleroderma-patients. (Even though it troubles me a bit)


What I meant with Losartan and the autoantibodies:

In another thread Hip explained to me, that if we have autoantibodies against receptors, the receptors are either blocked or constantly activated.

And what I‘ve thought now: if Losartan is a angiotensin-blocker and it works well on PoTS-patients who have angiotensin autoantibodies, the angiotensin-receptors may be overactivated by the autoantibodies?

 

[Gingergrrl]

Unfortunately I havn‘t found a doctor yet who knows anything about the autoantibodies. I‘m happy to have one doctor who is open to learn with me together, but of course this is all new to her, too and she doesn‘t have the time to do much further reading.

So your doctor is open to the autoantibody testing? I had assumed that doctors in Germany might be more open to the tests since it is a German lab but I realize that might be an incorrect assumption.

Yes, I meant that the angiotensin-autoantibodies (and also endothelin-autoantibodies) also correlates with scleroderma:

I think it is really interesting that there is a similar mechanism (these autoantibodies) found in POTS- and Scleroderma-patients. (Even though it troubles me a bit)

Thank you and that is interesting. I really want to test for these two new autoantibodies now that Cell Trend is offering them. I am definitely going to ask my doctor what he thinks about them.

What I meant with Losartan and the autoantibodies:

In another thread Hip explained to me, that if we have autoantibodies against receptors, the receptors are either blocked or constantly activated. And what I‘ve thought now: if Losartan is a angiotensin-blocker and it works well on PoTS-patients who have angiotensin autoantibodies, the angiotensin-receptors may be overactivated by the autoantibodies?

Thank you and that makes sense that if Losartan is an angiotensin blocker that the receptors could be overly activated by the autoantibodies. Would your doctor be open to you trying Losartan for POTS to see if it helps?

I get so confused by the calcium channel autoantibody that I have (not from Cell Trend and I learned of it from a test from Mayo Clinic's lab). I wish I could retain scientific information. With the Calcium Ab, it blocks the receptor so I am not supposed to take any other meds that are calcium channel blockers (and I don't). Does this also mean that the receptors are constantly over-activated by the CA+ Ab?

 

[bthompsonjr1993]

@Gingergrrl , I just shipped my serum via fedex priority to celltrend in Germany, it is supposed to arrive tomorrow; however, I am concerned that they are not going to receive it or that they will not test it and get the results back to me, because I have not been able to make any type of contact with them. I have tried calling both of the phone numbers that they have listed, and tried emailing both of the email addresses, but no response.
On the website it says to email them the tracking number when you send your serum, and I did that, but since they didn't respond I am not even sure if their listed email address is active anymore.
I had it shipped to the address listed on the "sample preparation and logistics" form on their website, so hopefully it gets to the right place.
I know that you have successfully gotten test results from them before, do you think there is anything else I should be doing?

 

[Gingergrrl]

@Gingergrrl , I just shipped my serum via fedex priority to celltrend in Germany, it is supposed to arrive tomorrow;

It was over two years ago when I first did this but I remember using a "Fedex Clinical Pack" which kept it cold and Dr. Heidecke (the head of Cell Trend) told me that even up to 72 hours was okay. I sent it with "Fedex International Overnight" knowing it was not possible to get from LA to Germany in 24 hours but I tracked the package and it arrived within 48 hours which was okay.

I have tried calling both of the phone numbers that they have listed, and tried emailing both of the email addresses, but no response.

I would have to search for the e-mail and Ph#'s that I used in 2016 and am not able to do it right now. At that time, they got back to me fairly quickly but I was one of their first (US) customers and I think they are a lot busier now. I will try to do it over the weekend and send it to you by PM (and please remind me if I forget).

On the website it says to email them the tracking number when you send your serum, and I did that, but since they didn't respond I am not even sure if their listed email address is active anymore.

I vaguely remember e-mailing them the Fedex tracking # but it was two years ago. I'd have to go through all of my e-mails to try to find it (but am pretty sure I saved it).

I know that you have successfully gotten test results from them before, do you think there is anything else I should be doing?

Not that I can think of but maybe when I find the e-mails, it will trigger my memory!

 

[Ema]

Hmmm, I have some losartan in my drawer. It's used in the Shoemaker protocol to lower inflammation, specifically TGF-b, which is also implicated in allergies, and I would assume MCAS, according to a recent study at Johns Hopkins.

I also saved this paper a while back, Angiotensin II AT(1) receptor blockers ameliorate inflammatory stress: a beneficial effect for the treatment of brain disorders.

I really might try it now, given that I was positive for the a1 adrenergic antibodies as well.