Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Autoimmune Basis for Postural Tachycardia Syndrome

Discussion in 'Other Health News and Research' started by Firestormm, Mar 2, 2014.

  1. Firestormm

    Firestormm

    Messages:
    5,022
    Likes:
    4,826
    Cornwall England
    Via Tate Mitchel and Co-cure
    @Legendrew thought you might be interested as well as others.
     
    Justin30, Lolinda, Gingergrrl and 9 others like this.
  2. Kate_UK

    Kate_UK Senior Member

    Messages:
    256
    Likes:
    318
    What did Alan and Kathleen Light find about adrenergic receptors, is it similar to this, or something different?
     
  3. Firestormm

    Firestormm

    Messages:
    5,022
    Likes:
    4,826
    Cornwall England
    I can't remember. The above is a small study but hopefully they will repeat it with more patients (and controls) if they can secure funding. Personally I don't tend to follow research in this area very closely but thought it might be of interest to those affected by POTS. I couldn't understand the paper but thought the blog was easier to follow.
     
  4. Legendrew

    Legendrew

    Messages:
    541
    Likes:
    737
    UK
    Interesting stuff, the sudden onset triggered by infections and female predominance has always suggested such, and now we have a glimpse as to what exactly is 'going on' in POTS. I look forward to a larger study which it sounds they are already planning.
     
    taniaaust1 and Firestormm like this.
  5. Ema

    Ema Senior Member

    Messages:
    4,276
    Likes:
    5,996
    Midwest USA
    I was reading about some "new" autoimmune antibodies that Vandy researchers were looking for just a few weeks ago. I looked for the "further research" they alluded to, but couldn't find anything.

    Must have been just *this* much too early. LOL.

    Thanks for posting!
     
    Firestormm likes this.
  6. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    That was adrenergic alpha-2A, so a bit different from receptors for adrenergic alpha-1A or adrenergic beta. But they are all involved in various aspects of the same system, so it might go toward explaining why some people have POTS, some have NMH, some have both, and some have hypertensive POTS.
     
  7. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,021
    This fits my experience. Alpha-1 agonism seems to abolish OI for me, but I still have tachycardia. Beta-blockers take care of tachycardia, but makes OI worse. Perhaps combining alpha-1 agonism (or alpha-2 antagonism) with a beta blocker would perhaps be optimal.

    Is there any way to clear the antibodies? Would an antiviral help?
     
    Last edited: Mar 3, 2014
    kisekishiawase and Valentijn like this.
  8. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
    Does anyone happen to know if these auto-antibodies were previously known to science? i.e. had they previously been detected in other research? (I haven't read the full paper.)
     
  9. Marco

    Marco Grrrrrrr!

    Messages:
    2,379
    Likes:
    3,175
    Near Cognac, France
    From the above :

    A while back I wrote about a condition called complex regional pain syndrome - a chronic multi-symptom disorder that follows a relatively trivial peripheral injury with symptoms as follows :

    An autoimmune contribution to CRPS now seems likely with similar receptors affected :

    I thought CRPS might be quite a good model for ME/CFS :

    http://www.cortjohnson.org/blog/201...lgia-mecfs-spreading-neuroinflammation-model/
     
  10. kangaSue

    kangaSue Senior Member

    Messages:
    838
    Likes:
    912
    Brisbane, Australia
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,904
    Likes:
    12,727
    Sth Australia
    Thank you very much for that
     
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,904
    Likes:
    12,727
    Sth Australia
    It would be interesting if something like POTS research leads ME to be finally known to all as an autoimmune disease. I have the POTS due to the ME.
     
  13. est_sunshine

    est_sunshine

    Messages:
    30
    Likes:
    25
    I've got Pots and I recently checked if I had the SLC6a2 snp using 23 and me and livewello and I don't. So.... Am thinking if it's not a genetic issue with the NE transporters it could be antibody driven. I hope they get some answers from the next larger study. Earlier this year they used the Dysautonomia conference in the US to collect blood from pots patients I hope this sample shows a link and treatment options follow soon
     
  14. est_sunshine

    est_sunshine

    Messages:
    30
    Likes:
    25
    Am thinking of trying Anatabine supplement which has been shown to help reduce thyroid antibodies
     
  15. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,411
    Likes:
    24,315
    USA
    @Firestormm

    My brain can't follow anything scientific today but thank you for posting this study and tachycardia was the very first symptom that I got following mono before I had full-blown dysautonomia and ME/CFS.

    My 2nd cardiologist said she had seen inappropriate sinus tachy/POTS in female patients around my age (then 42) who had mono/EBV in the prior year. This was the first time I made any connection. She had no idea how to treat it other than trying beta blockers and hoped it would resolve on it's own in six months (which it didn't.)

    I am now on a whole cocktail of meds for cardiac/autonomic issues but nothing is working correctly at the moment which is very discouraging.
     
    kisekishiawase and est_sunshine like this.
  16. est_sunshine

    est_sunshine

    Messages:
    30
    Likes:
    25
    There are currently treatments like IVIG and plasmapheresis that will reduce the antibodies but I don't think they are permanent. I'm sure now they are looking in the right place solutions will come.
     
  17. kisekishiawase

    kisekishiawase sad

    Messages:
    291
    Likes:
    117
    southeast asia
    Is this antibody not limitted of effecting pots patient only? From googling i also find other heart issue.
    Why does it say betablocker wont work :(

    Anyway it seems its not known to many doctors.:(
    Im worried also what to do then.
     
    Last edited: Jan 13, 2015
  18. kisekishiawase

    kisekishiawase sad

    Messages:
    291
    Likes:
    117
    southeast asia
    Last edited: Jan 13, 2015
  19. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    3,021
    Florida
    Has this already been posted? Dr. David Kem of OU interviewed on Oklahoma News 9:

    The OU researchers have "identified a decoy protein to short-circuit those antibodies responsible for the condition”.

    Dr. Kem: “This would be a cure, and we hope even an oral cure."

    http://www.news9.com/clip/11462578/medical-minute-pots
     
    ScottTriGuy, mango and Sushi like this.
  20. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,336
    Likes:
    21,485
    Albuquerque
    This is a really short clip and worth watching. There is always the question, when you talk about a cure, what are you curing, what caused this? This is talking about a sort of by-pass, or as they say short-circuit--which would be very welcome, but what went wrong that might still need to be fixed after the "short-circuit" treatment?

    Sushi
     

See more popular forum discussions.

Share This Page