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~Naomi~

Promising New Pots Autoimmune Research Study

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This is all good information. I have a lot of autoimmune diseases as well as CRPS and POTS. CRPS and POTS both appear to be heterogeneous conditions but I'd guess mine are autoimmune in nature.

These types of studies are good to help backtrack to the original causes. But what I really wish is for us to be able to get to the core of these problems rather than putting bandaids on the abnormalities produced downstream. I could try to shotgun the autoanitbodies with plasmaphoresis but they will just come back. I'll take whatever treatment has reasonable scientific backing for the risk but I just keep thinking the scientific penny will drop all of the sudden on a magic bullet to help all of it at once. Maybe stem cell...

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And there it is. Game set and match. I was already about 90% certain my condition was caused by 'local interference' of alpha 1 mediated vasoconstriction with compensatory overactivity of the general sympathetic nervous system. My general belief is that its specific to alpha 1b subgroup and as a consequence some vasoconstrictors work better than others.

ive been pushing for research into autoimmunity beyond the acetylcholine receptor autoantibodies since 2005 due to the overwhelming evidence that pots is autoimmune in some patients (acute onset, fluctuating course, female to male ratio).

Its also important to note that kidney alpha 1 receptors may be involved in sodium retention.

congrats to dys int and Lauren Stiles for facilitating this discovery and Dr Kem and Dr Raj for their work.

in the words of an important POTS researcher - autoantibodies are here to stay (in pots research).

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I was just recently in NZ and saw a POTS specialist. I asked about this research and they said they had just been to a international POTS conference and it looks like it's normal for the general population to have these types of autoantibodies. I thought it a strange answer and they basically wrote off the research. Is this a common perception?

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Hmmm..... well, ANA and rheumatoid factor are fairly common in the general population, but that doesn't stop them from being part of the puzzle in autoimmune diagnosis and research. Autoantibodies are one part of the complex process of autoimmunity, and much in unknown. It certainly does not seem like a reason to "write off the research" - particularly at this early stage.

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If these receptors are being found in other autoimmune illness and POTS is showing up with this illness. I would think POTS would be autoimmune. Just my personal opinion. Not hearing anything on the research at OU. I have asked our doctor about getting Tyler into the study. Our doctor said the researcher does not think anything would show up in the research test because Tyler has been treated with plasma exchange. I think he's wrong because Tyler still has POTS symptoms.

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My POTS doc said he is reserving final judgment but is hopeful that this will be the answer for some patients that have more of an autoimmune presentation with no other clearly identifiable autoimmune disorder. For example, I have inflammation issues that can not quite be explained. But, when my inflammation flares, so does my POTS (and now bp issues, too.)

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And there it is. Game set and match. I was already about 90% certain my condition was caused by 'local interference' of alpha 1 mediated vasoconstriction with compensatory overactivity of the general sympathetic nervous system. My general belief is that its specific to alpha 1b subgroup and as a consequence some vasoconstrictors work better than others.

ive been pushing for research into autoimmunity beyond the acetylcholine receptor autoantibodies since 2005 due to the overwhelming evidence that pots is autoimmune in some patients (acute onset, fluctuating course, female to male ratio).

Its also important to note that kidney alpha 1 receptors may be involved in sodium retention.

congrats to dys int and Lauren Stiles for facilitating this discovery and Dr Kem and Dr Raj for their work.

in the words of an important POTS researcher - autoantibodies are here to stay (in pots research).

hello! is there some way you can explain this in ... "simpler" terms? i'm really lost here.

i will say that i do suspect that my dysautonomia is autoimmune, because i already have 1 other autoimmune disease.

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It is dissappointing that it is taking so long for this research to become public and be published. Also if it's true that only Alpha 1 and Beta 1s were tested then that is terrible. The reason I'm saying that is because of the cost and the amount of samples that went into this study. There are tons more of autonomic receptor antibodies that need to be tested in order to treat a patient in a balanced way. The only win here is finally pointing to a big autoimmune link but that has been brewing for ages and as Rama noted it was pretty obvious. Also what is interesting is that sometimes amount of antibodies does not relate to how bad autoimmune symptoms are but here they are saying amount related to HR... Wish they would give a timetable on when they plan of publishing the entire study..

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Hi,

Has anyone heard anything further on this. The original post was 2 years ago and the follow up study was supposed to be huge at the Dysautonomia Convention in July 2014 with 100 study participants live. There was never any reply to this extensive thread. I do not follow the literature much anymore so maybe something was published.

Was the study with 100 participants published after 1 1/2 years? Is there any information out there?

Thank you.

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Nothing has been published. Subjects were sent a letter in July 2015 with an update stating there were issues with the test (paraphrasing) and they were developing a better test. I think this is okay to say since Dysautonomia International made the letter public. I don't know how to share it, but it's still on their Facebook page - August 21, 2015 if anyone is interested in reading it. There has been no further update. Have to say.. this has been a long, torturous wait and I hope something is released soon.

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Do you know what company is doing this? I ask because there is a company I am watching that is doing similar research. I heard about them on CNBC when the CEO was interviewed. It sounded promising.

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Not a company it is a doctor at Oklahoma University in tandem with Vanderbilt. I believe it is delayed because they mishandled the samples, but not sure

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I can't believe it is the summer of 2017 and we have no results from that study. Hundreds of Thousands if not millions $$$ were raised for that research and hundreds donated free sample for it. 

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