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New Study - Adrenergic Autoantibody‐Induced Postural Tachycardia Syndrome in Rabbits


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Researchers at the University of Oklahoma have published a study on the first animal model of POTS, an essential step in confirming whether or not a condition is an autoimmune disease. Additionally, they report that antibodies similar to those found in POTS patients cause tachycardia in rabbits. Perhaps even more importantly, they have identified a potential new drug that inhibits the effect of the antibodies.

This study demonstrates for the first time a role of adrenergic autoimmunity in the pathophysiology of POTS in two related animal models.

The study also demonstrates that the effects of adrenergic autoantibodies are largely reversed using a compound that blocks the autoantibodies, which was developed by the University of Oklahoma researchers.

The JAHA research article: www.ahajournals.org/doi/10.1161/JAHA.119.013006

The JAHA editorial that emphasizes the importance of the findings: www.ahajournals.org/doi/10.1161/JAHA.119.014084

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While its true that the forum is 16 years old (and pots has only really been around since 1993 officially) i don't understand your last point. Are you suggesting that this study isn't new at all and they knew about it years ago? 

Treatments options are the same because the knowledge about the disease was still the same. Thats why treatment has stagnated. 

I still remain positive about it.

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2 hours ago, FileTrekker said:

I mean literally nothing has changed in 16 years, despite all the published papers and "discoveries" - is all I mean. I just have little hope left.

I can’t help but comment because you bring up an interesting point... I also have endometriosis (which was first discovered in 1860 according to my google research) and there has yet to be a cure let alone a decent treatment to control it!! 

Obviously there are a ton of things out there worth researching, but I think the ones that hit us close to home and are more personal clearly bring on more frustration and doubt. To sum up, as positive as I try to stay, I totally understand where you’re coming from!

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@Starkthank you so much for posting this.  Anything that bolsters the existing evidence that this is autoimmune for many of us is very welcome.  I have seen my greatest improvements with SCIG after testing positive for the alpha a-1 antibody on the Celltrend test.  There are existing treatments that help although they definitely don’t cure this disease.  I welcome this further evidence and if a better treatment comes in 10 or 30 years I will welcome it with open arms.  No, I don’t want to wait that long but I will because I will have to.

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18 hours ago, FileTrekker said:

I mean literally nothing has changed in 16 years, despite all the published papers and "discoveries" - is all I mean. I just have little hope left.

I know it seems like research in this field is so patchy & they just go around & around, with promising leads picked up then dropped & picked up again ten years later, but IF the evidence continues to come out that some people have an autoimmune cause, I think treatments will start to emerge. In the UK it will probably be some years before they are made accessible for patients, but at least there would be a direction for many people to pursue who don't currently have one. 

What I can say that might provide a little bit of hope is that when I went to the NHNN in London, despite the neurologist there missing absolutely classic symptoms, inciting event, upright MRI signs & connective tissue disorder all pointing to the spinal CSF leak that I am now being evaluated for, I was asked if my blood could be taken for research looking for autoantibodies in the blood of patients diagnosed with POTS/OI. I agreed, although they would not disclose specifics of what was being tested & nor was I told whether participants would ever be contacted if they tested positive for anything.

So there is clearly something going on along these lines in the UK at this time.

B xxx

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i recently had to see a Rheumatologist to get checked for autoimmune issues. I asked him about POTS being an autoimmune related condition, especially about these antibodies. he smirked and said it is just another theory. I had the distinct suspicion that he simply did not want to consider this possibility because he did not know anything about POTS and did not want to have to be responsible for it. ... I talked to a FNP who was writing a paper on POTS and had done a lot of research on dysautonomia. she told me that the autoimmune theory is becoming more and more studied and they find more and more evidence about it. However - as with anything POTS they have to have hard evidence to convince the medical community or else they get eye rolls. That might be a reason why there is talk about it and studies being done but as of yet there still is no hard proof of it. They are looking though. 

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57 minutes ago, Pistol said:

i recently had to see a Rheumatologist to get checked for autoimmune issues. I asked him about POTS being an autoimmune related condition, especially about these antibodies. he smirked and said it is just another theory. I had the distinct suspicion that he simply did not want to consider this possibility because he did not know anything about POTS and did not want to have to be responsible for it. ... I talked to a FNP who was writing a paper on POTS and had done a lot of research on dysautonomia. she told me that the autoimmune theory is becoming more and more studied and they find more and more evidence about it. However - as with anything POTS they have to have hard evidence to convince the medical community or else they get eye rolls. That might be a reason why there is talk about it and studies being done but as of yet there still is no hard proof of it. They are looking though. 

And they wonder why people turn to alternative medecine and lose faith in doctors. 

 

Not all of them are like that of course. Many really try to seek their patient's wellness, but im telling you, they're just a bunch of money maker in suits. 

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It makes me so sad whenever a physician is not interested in research, or learning something new.  

The attitude that "if it wasn't known when I was at medical school then it either doesn't exist or isn't important" becomes more and more dangerous the more time elapses since they qualified. 

I was always interested in science & new discoveries. Every day that I worked I learned something new, sometimes from publications but often from patients. 

It is always OK for a doctor not to know something (as long as they are honest about that & make it their business to either find out or refer you to someone more appropriate), but it is never OK not to care. 

The AChR antibody was at least part of the routine battery of clinical tests at NHNN London when I went. It was not part of the research study that I submitted blood to. 

B xxx

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This is why seeing a knowledgeable dysautonomia specialist is so very important.  I am lucky that I have two in my backyard so to speak.  My neurologist tested me for the AChR antibody among others on my second appointment.  That appointment was 6 hours long and included an EMG and TTT and 24 tubes of blood for tests.  I believe the Mayo panel includes the AChR, so in those places that specialize they are applying the research.  I don’t go to a big research center but my neurologist worked at Mayo previously.  I was told that rheumatologists are very hesitant to treat without positive blood work and I believe that’s true.  However my neurologist persuaded my rheumatologist to agree to SCIG therapy based on new research showing autoimmune causes. It’s a matter of finding the Drs that stay up to date on research and listen to us.  I know that is difficult but there are a fair number now prescribing IG therapy.  I feel so badly for those that can’t travel to one of these places but I think it’s definitely worth it if you can.

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