Invest in ME Conference 12: First Class in Every Way
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Autoantibodies research in POTS: promising or not?

Discussion in 'Other Health News and Research' started by sillysocks84, Jun 29, 2015.

  1. sillysocks84

    sillysocks84 Senior Member

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    Never Give Up, Hutan and Marky90 like this.
  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Could very well be the case!
     
  3. adreno

    adreno PR activist

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    Sounds plausible to me.
     
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  4. sillysocks84

    sillysocks84 Senior Member

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    "Researchers from the University of Oklahoma and Vanderbilt University have identified evidence of adrenergic receptor autoantibodies in a small group of POTS patients, suggesting that POTS may be an autoimmune condition in these patients."

    If it's in a small set of patients, I'm thinking it won't lead to treatments for us all. How do you know if you may be in this subset? Irritated once again. I didn't pick that up.
     
  5. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Well thats how almost all new discoveries start out. No point testing something on one hundred persons the first time:)
     
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  6. halcyon

    halcyon Senior Member

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    Their initial study was on 12 POTS patients, so it was pretty small but they found the autoantibodies in 100% of the patients. My understanding is a larger study is going to be conducted. Sadly I don't believe the test for these antibodies is available commercially and I don't think that the results of their study can be applied to ME patients directly. We'd want a similar study done on ME patients.
     
  7. sillysocks84

    sillysocks84 Senior Member

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    No need to let hope die yet lol. Thanks!
     
    Marky90 likes this.
  8. sillysocks84

    sillysocks84 Senior Member

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    I agree. Sometimes I wish I had a bazillion dollars.
     
    Sasha likes this.
  9. Sasha

    Sasha Fine, thank you

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    I constantly wish that!
     
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  10. Hutan

    Hutan Senior Member

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    Not a bazillion dollars, but $200,000 is a good start.

    http://www.dysautonomiainternational.org/page.php?ID=200

    Dysautonomia International Announces $200,000 Research Grant
    to Study Often Misdiagnosed Neurological Condition



    EAST MORICHES, NEW YORK (February 12, 2015) - Dysautonomia International, a not-for-profit patient advocacy organization focused on disorders of the autonomic nervous system, has awarded a three-year $200,000 grant to Dr. David C. Kem at the University of Oklahoma to support innovative new research on postural orthostatic tachycardia syndrome (POTS). The $200,000 grant is the largest private grant ever awarded for POTS research.

    POTS is a debilitating neurological condition that impacts an estimated 1-3 million Americans; 85% are young women between the ages of 12 and 40. POTS is often misdiagnosed, resulting in an average six-year diagnostic delay. There is currently no cure for POTS, and few effective treatments, but Dysautonomia International is seeking to change that.

    Dr. Kem is a George Lynn Cross Research Professor of Medicine at the University of Oklahoma Health Sciences Center and Oklahoma VA Medical Center. Last year Dr. Kem's research team, working with researchers at Vanderbilt University, identified adrenergic receptor antibodies that they believe may be contributing to symptoms in some POTS patients, providing evidence that POTS may be an autoimmune disease (when your immune system attacks your own body). This grant will allow Dr. Kem's team to continue their pursuit to develop a blood test for these antibodies that could potentially be used to help diagnose POTS, and to develop new treatment options targeting these antibodies. "We're researching potential drug therapies that may be used to block and inhibit production of these autoantibodies, and thereby lesson their burden on the patient," says Dr. Kem.

    The grant was made possible by a donor family that wishes to remain anonymous, whose daughter has POTS and an inherited connective tissue disorder known as Ehlers-Danlos syndrome, which is found in approximately 30% of POTS patients. She has also tested positive for some of the antibodies involved in this research. The three-year post-doctoral fellowship position created with the funding will be named the "Meghan's Hope POTS Research Fellowship" in honor of their daughter.
     
    ahmo, Never Give Up, Sasha and 3 others like this.
  11. sillysocks84

    sillysocks84 Senior Member

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  12. BurnA

    BurnA Senior Member

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    If POTS does turn out to be caused by autoantibodies would that mean in theory that b cell depletion ( via RTX) could work for POTS ?
     
  13. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Yep
     
  14. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Yes, but within reason and within context.

    POTS patients range from conditions such as Diabetes to Lyme disease. Generally, Diabetes doesn't render you bedridden unable to move (unless you're in a flare up). Lyme disease and ME in severe cases, does. So we have to think what 'POTS' means to different 'POTS' patients and how ill they are to begin with (their base line health level) when dreaming of an effective treatment.

    Naturally someone 'just' with Diabetes who has their autonomic problems helped considerably with b cell depletion may be helped very significantly indeed. Conversely someone crippled with Lyme disease or ME, who has a prolonged disease state with multiple other bad effects of their body, not so much.

    Here is why:

    Examples of damage found in ME CFS EDS (Many who have POTS), other than 'just' immune mediated autonomic dysfunction:

    Asthma.
    Allergies including hyper drug sensitivity (makes taking medications very hard).
    Accelerated ageing (oxidative stress damage) and brain shrinkage.
    Atherosclerotic plaques in arteries that increase risk of premature death.
    Osteoporosis.
    Cancer.
    Destructive arthritis.
    Eczema.
    Heart Failure and venous insufficiency.
    Immune suppression (Dreadful NK function, RN-aseL gene defect - no defence against viruses).
    Pituitary disease/hormonal deficiencies, pituitary cysts/adenomas, adult growth hormone deficiency.
    Lax, floppy skin and risk of internal rupture from collagen defects (EDS)

    So with POTS, as with 'ME' and 'CFS', it would seem likely that the less severely ill you are, and (in my view) + the less time you have been ill, would all lead to more favourable outcome from trying b cell depletion (if you're proven to be a 'responder' by using a biomarker before the therapy).

    I'd love to be proven wrong, but as someone with a lot more than just my POTS diagnosis, I need to be realistic. This doesn't mean other younger people couldn't be made completely better, so it is positive news, someone is trying to find out the cause of POTS.

    Whilst we're wating years for more autoimmune research, the next step would be for the CDC and British to make a TILT table test (to diagnose POTS) mandatory for all new diagnosese of ME CFS. Currently they still refuse, as then ME CFS are demonstrated (not proposed) as neurological if many with ME CFS are then diagnosed as having POTS.

    This doesn't fit in with the CBT GE ruse of 'beliefs' perpetuating ME CFS, when it is autoimmunity and lack of drug therapy.
     
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  15. BurnA

    BurnA Senior Member

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    Thanks, yes I realise some people will have many other symptoms or indeed underlying problems. But my query was based purely on POTS, and it seems the consensus is that RTX could alleviate it if it us autoimmmune.

    The Open label trial did not really show a favour towards any patient group afaik. It might seem logical the less severe or less time you have symptoms then more likely to get a response but this was not observed imo.
     
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  16. sillysocks84

    sillysocks84 Senior Member

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    Lately I have had histamine issues... very uncomfortable. Have any of you had this? Would this be a sign of autoimmune pots?

    Also, if anyone can find out how histamine and adrenergic receptors relate, maybe we could see how it becomes an issue for us. And bonus points for whoever can explain it. I will always think the vaccine I had three years ago caused a difference in my immune system. It definitely has been amped up, I see a direct correlation. I haven't been the same since.
     
    Violeta likes this.
  17. sillysocks84

    sillysocks84 Senior Member

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    https://www.drlam.com/blog/histamine-and-adrenal-fatigue-syndrome/4642/

    Long read but attempts to explain histamine in relation to adrenal release. To much histamine causes high heart rate, fatigue, muscle pain. What if some of us are dealing with histamine not being broken down efficiently which over works our adrenals?

    I'm copy pasting into a new post.
     
  18. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hi.

    If you have verified histamine release with it's hallmark symptoms and (very hard to measure unless blood is taken in a flare up in ER). then you might want to look into Mast Cell Activation. Also, out of interest, if you have signs of allergy, have you measured your IgE? (Non specific Allergy marker).

    Here's a few links:

    Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders
    http://hyper.ahajournals.org/content/45/3/385.full


    A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome

    http://www.jacionline.org/article/S0091-6749(14)02927-3/abstract


    An interesting blog to read....
    http://www.dysautonomiainternational.org/blog/wordpress/a-tale-of-two-syndromes-pots-and-mcas/
     
    Last edited: Sep 23, 2015
    sillysocks84 likes this.
  19. Violeta

    Violeta Senior Member

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  20. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Thanks, that's great news then if it rings true, although I think the first study was only 14 patients. I'm still cautious though, as getting housebound and bedridden POTS patients to be part of their research (unless the samples were taken from home) wouldn't have been possible. In addition, POTS comes in subsets, but due to their being no real agreed testing protocols (other than a TILT test), few know what subsets they are part of.

    Perhaps what this research group of Dr Kem has found, is a possible cause of hyperadrenergic autoimmune POTS? A niggle of mine is we don't know 'who' the severely affected are medically, and if their 'POTS is still of the proposed treatable form - or another neurological condition, leading to Postural Tachycardia, mimicking this POTS or a subset of others POTS. We know other POTS patients (approx 12-25% have brain antibodies - E.g. nicotinic, muscaranic acetylcholine antibodies. So we need to keep that in mind I feel. other forms of POTS aren't POTS but are neurological conditions mimicking it due to those conditions causing other forms of autonomic dysfunction?

    What do you think? I don't want to get too excited as in the ME CFS world, we always have news that tends to be dashed.

    Thinking best possible outcomes:

    Wouldn't it be amazing if these antibodies could negatively affect brain blood flow (vasodilation) and thus cause a brain hypoperfusion (found in ME CFS research already). Imagine blocking that. It could transform patients lives if their brains 'worked'. I don't know how this is linked or explains elevated brain lactate though (very high) in CFS.

    ME model: Perhaps there is mitochondrial brain dysfunction, hence the high lactate? The brain is exhausted cellularly.
    POTS model: Perhaps get multi site blood flow derangement, including brain blood pooling? (hypoperfusion)?

    Thanks to all for posting, and here is sillysocks's link again:
    http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/

    The juicy bit for me was this:
    What if this form of POTS is a multi site (organ) circulatory disorder? That would be amazing if it was the case.
     
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