Research 1st
Severe ME, POTS & MCAS.
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- 768
Some feedback if anyone is interested in Autoimmune POTS?
I've had my adrenergic receptor antibodies tested, namely:
alpha 1, alpha 2, beta 1, beta 2.
All of the antibodies I tested for were present in myself at elevated levels (to varying degrees) and ideally no one should have antibodies to adrenergic receptors so that's 'good' in terms of me wanting to see if I have possible Autoimmune POTS or not.
However, it should be remembered that healthy people or people without POTS can make antibodies to all sorts of things they shouldn't do. It should also be noted there are many forms of adrenergic receptor (not just the ones I listed) and these often cannot be tested for due to no commercial labs offering the tests, and potentially other antibodies exist in POTS that haven't been discovered yet by Scientists.
Anyway, my highest antibody result was on alpha 2.
Wikipedia has this entry what that receptor does (NB: I cannot vouch for any accuracy on Wikipedia as anyone can edit it).
Individual actions of the α2 receptor include:
Source: https://en.wikipedia.org/wiki/Alpha-2_adrenergic_receptor
I have no idea if this makes me a possible 'responder' to future treatment or not, or what symptoms (if any) it would produce, maybe someone can kindly theorise for me and 'us'?
Either way, until the Dr Kem study is complete (they had a healthy anonymous donation in 2015 for 3 years work), and the findings published we don't know what the novel medication proposed is (looks like it's IV at the moment) and we don't know which receptors needs to be at pathogenic levels to be able to be 'blocked' to stop the vasodilation/vasoconstriction, causing symptoms and disability.
Think of this as being an ME sufferer and not knowing if you'll respond to B Cell depletion therapy or not. I would presume unless one has markedly high levels, then one won't. I am thus guessing the same idea, would apply for POTS adrenergic antibodies in POTS patients,e.g. are they at 'pathogenic levels' or not......or just slightly elevated, the inference being if only slightly elevated, they wouldn't be high enough to be causing POTS symptoms.
And after al that, you then need other groups in other countries to find the same finding to really have made a breakthrough.
I would imagine it's going to be at least a few more years until we have some more solid evidence for Autoimmune POTS being not only a diagnosable condition, but a treatable one.
We then have a problem with people like myself and so many others, that you may well have treated POTS (great), but then you still have ME, Lyme, EDS etc on top and the secondary effects this can cause such as multiple allergies,heart failure, arthritis cancers etc. 'Curing' or should I say effectively treating one autoimmune disease in ME or POTS sufferers (who have multiple diseases), would still be an incredible achievement though and dreamed about by all.
I've had my adrenergic receptor antibodies tested, namely:
alpha 1, alpha 2, beta 1, beta 2.
All of the antibodies I tested for were present in myself at elevated levels (to varying degrees) and ideally no one should have antibodies to adrenergic receptors so that's 'good' in terms of me wanting to see if I have possible Autoimmune POTS or not.
However, it should be remembered that healthy people or people without POTS can make antibodies to all sorts of things they shouldn't do. It should also be noted there are many forms of adrenergic receptor (not just the ones I listed) and these often cannot be tested for due to no commercial labs offering the tests, and potentially other antibodies exist in POTS that haven't been discovered yet by Scientists.
Anyway, my highest antibody result was on alpha 2.
Wikipedia has this entry what that receptor does (NB: I cannot vouch for any accuracy on Wikipedia as anyone can edit it).
Individual actions of the α2 receptor include:
- Mediates synaptic transmission in pre- and postsynaptic nerve terminals
- Decrease release of acetylcholine[13]
- Decrease release of norepinephrine[13]
- Inhibit norepinephrine system in brain
- Inhibition[14] of lipolysis in adipose tissue[15]
- Inhibition of insulin release in pancreas[15]
- Induction of glucagon release from pancreas
- platelet aggregation
- Contraction of sphincters of the gastrointestinal tract
- Decreased secretion from salivary gland[5]
- Relax gastrointestinal tract (presynaptic effect)
- Decreased aqueous humor fluid production from the ciliary body
Source: https://en.wikipedia.org/wiki/Alpha-2_adrenergic_receptor
I have no idea if this makes me a possible 'responder' to future treatment or not, or what symptoms (if any) it would produce, maybe someone can kindly theorise for me and 'us'?
Either way, until the Dr Kem study is complete (they had a healthy anonymous donation in 2015 for 3 years work), and the findings published we don't know what the novel medication proposed is (looks like it's IV at the moment) and we don't know which receptors needs to be at pathogenic levels to be able to be 'blocked' to stop the vasodilation/vasoconstriction, causing symptoms and disability.
Think of this as being an ME sufferer and not knowing if you'll respond to B Cell depletion therapy or not. I would presume unless one has markedly high levels, then one won't. I am thus guessing the same idea, would apply for POTS adrenergic antibodies in POTS patients,e.g. are they at 'pathogenic levels' or not......or just slightly elevated, the inference being if only slightly elevated, they wouldn't be high enough to be causing POTS symptoms.
And after al that, you then need other groups in other countries to find the same finding to really have made a breakthrough.
I would imagine it's going to be at least a few more years until we have some more solid evidence for Autoimmune POTS being not only a diagnosable condition, but a treatable one.
We then have a problem with people like myself and so many others, that you may well have treated POTS (great), but then you still have ME, Lyme, EDS etc on top and the secondary effects this can cause such as multiple allergies,heart failure, arthritis cancers etc. 'Curing' or should I say effectively treating one autoimmune disease in ME or POTS sufferers (who have multiple diseases), would still be an incredible achievement though and dreamed about by all.
