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How to know if my POTS is autoimmune?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by men100, Aug 22, 2018.

  1. men100

    men100

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    Good Morning.

    I am a patient from Spain and I do not speak English very well, so I use the Google translator, excuse me if there is an error.

    I have POTS and I am researching all forums, studios, etc. to see if I can find a cause and solution. I have verified that in the USA, if the POTS is of autoimmune origin, they prescribe inmonuglobulinas IV (IGIV if I am not mistaken) with enough good results. So the first thing is: how to know if the POTS is of autoimmune origin? What do I ask in the analyzes? I guess I'll have to ask for autoantibodies, like beta adrenergic. But I do not know what else to ask, nor if they will do it in a laboratory in my country. If I test positive for autoimmunity, in Spain they do not prescribe this treatment, I would have to try to ask some good doctor to listen to me and read the cases of improvement / cure in the USA. But the first step is to know if my POTS is self-imposed.

    I am also looking at mast cell activation syndrome because, apart from POTS and more, I have positive dermographism. I have taken blood to look at the triptase and go to a center specializing in mast cells.

    Thanks and regards!
     
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  2. jason30

    jason30 Senior Member

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    I don't have an answer to your questions, but my POTS gets triggered by toxins such as mold toxins. Hopefully this helps a bit.
     
  3. Hip

    Hip Senior Member

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    To my knowledge, there is only one lab that can detect the autoantibodies found in POTS, and that is CellTrend in Germany.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    This is a relatively new treatment option and not many doctors are doing it yet. One of the main doctors in the US who is researching and prescribing IVIG for Autoimmune POTS is Dr. Jill Schofield in Colorado and she has some interesting presentations on this topic with Dysautonomia International. My doctor also prescribes IVIG for Autoimmune POTS and I was very lucky to have the opportunity to try it. (I had other autoantibodies and diagnoses in addition to POTS as well).

    You would definitely want to test for beta-adrenergic autoantibodies and like @Hip said, the main lab that I know of which runs this test is Cell Trend in Germany. They have full instructions on their website and you can send them a blood sample from anywhere in the world. You might want to also test for other autoimmune conditions and test your ANA titer to see if it is elevated.

    POTS and MCAS often go together (they did for me) and some of the other tests you can ask for besides Tryptase, (if you find a doctor who will do them in Spain) are Histamine, Prostaglandins, and Chromogranin A. A very good website with lots of information is "Mast Attack" (Lisa Klimas).
     
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  5. kangaSue

    kangaSue Senior Member

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    I would suggest that POTS can also be considered "a symptom of autoimmunity" when it occurs with one of the other autoimmune conditions where POTS is known to be a common symptom too.

    There's a number of antibodies that may be involved with this and screening would entail doing an ANA panel, an ENA panel and something similar to the Mayo DYS1 Autoimmune Dysautonomia blood panel.
    https://www.mayomedicallaboratories.com/test-catalog/Overview/37428
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    I totally agree with everything that @kangaSue said above and my mind blanked on the Mayo panels when I was typing my reply! When I re-test my autoantibody levels in a few weeks, I will be doing the Mayo DYS1 Panel that kangaSue mentioned above, in addition to the Cell Trend Panel (to compare all of my results to pre-treatment levels back in 2016).
     
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  7. men100

    men100

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    Good morning everyone and thanks for the answers.

    I do not think the origin is mushrooms, but it is true that in my current house there is one in the bathroom grilles (and in the house where I grew there was also a little). Where I live now, I have this:



    Thank you, it is a bit far but in my country I doubt there is anything like it. I will contact them to see if they can see the autoantibodies for POTS.

    Thanks for the info. I know it's new, but it seems to be successful because of what I've been able to read. If you succeed, I do not know why you can not supply it to me in my country. That's why I want to gather the evidence that my POTS is autoimmune to present to some body and to look at my case (and that of other colleagues) so they can help us. Going to USA for us is very difficult economically, the health there costs hundreds of thousands of dollars, I imagine. We do not have that money, nor sure it covers it.

    How was your treatment with inmonoglobulins? Did you improve?

    The German laboratory is familiar with the procedure to analyze if POTS is autoimmune? I think there are about 9 known autoantibodies involved. Let's see if I can contact them and they guide me. My ANA have once been negative and again "doubtful". Let's see if I find the analysis and I share it. The CH50 supplement is quite high, but they do not give importance to it.

    Regarding the matocitos, I will try to analyze later what you said. Tryptase is on the way, yesterday I drew blood. In Spain there is a center specialized in mast cells, it is a reference center and you can go there to see if they know something about POTS and know their opinion.
     
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  8. men100

    men100

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    Wow, that Mayo Clinic test seems very specific to POTS, right? They do it also in the German laboratory? The language barrier for me is quite important, it's a shame.

    It is assumed that if these autoimmunity tests are positive, I could benefit from the immunoglobulins, right?
     
  9. kangaSue

    kangaSue Senior Member

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    Mayo just does the tests listed under "Profile Information" first as a screening measure and these particular antibodies can be found in a number of neuromuscular disorders so this panel is not specific to POTS as such.

    I don't think the laboratory in Germany does these other tests but should be able to get all of these screening tests done in any developed country, except for the test listed as GANG, AChR ganglionic neuronal Ab at Mayo. This particular one (more specifically, the test is for the alpha 3 nicotonic acetylcholine receptor antibody) is only done by a few laboratories in the world.

    Mayo is one place of course but Oxford University in the U.K. also does it and is where I had blood sent to from Australia to do this test and they would be the closest one to you being in Spain.
    The rules for accessing IVIG differs between countries so you would have to check with your own healthcare authority but typically, a positive ANA (Anti-Neuronal Nuclear Ab) test result alone wouldn't qualify for access to immunoglobulin treatment but there is precedence in the medical literature for trying this with having any of the other antibodies.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    That was my experience and Mayo offers several panels that are very similar with some overlapping tests. The panels I did in 2016 were PAVAL for paraneoplastic autoantibodies and one for Myasthenia Gravis/MuSK (I forget the name of the panel) plus GAD65. The one I will be doing in Sept is called DYS1 (what kangaSue mentioned a few posts above) and it includes everything that we want to re-check in my case (for neuromuscular, autonomic, and paraneoplastic autoantibodies).

    The German Lab (Cell Trend) offers different tests than Mayo which include beta-adrenergic and anti-muscarinic/ cholinergic. They've also added two new tests for Angiotensin-II-Receptor-1 (AT1R) autoantibodies and Endothelin-Receptor-A (ETAR) autoantibodies.

    In the US it is challenging to get high dose IVIG for autoimmunity, but it definitely can be done if you have lab tests showing autoantibodies, significant physical impairment that matches, and a doctor that is willing to battle it out with your insurance!
     
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  11. men100

    men100

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    In other words, does the German laboratory not perform specific autoimmunity analyzes for POTS? Because this is what they announce:

    [​IMG]


    and what they analyze is this for POTS:

    [​IMG]


    and this for Chronic Fatigue Syndrome:

    [​IMG]


    What does the Mayo Clinic or the University of the United Kingdom analyze that Alamenia does not do? The goal is that if positive autoantibodies are released from me and my colleagues, do not treat with inmonoglobulins. In my country we will have to fight a lot with the authorities I imagine, but we must try and the first step is to know who can benefit from this treatment, therefore, we must check if our POTS is autoimmune.

    Thank you!
     
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  12. kangaSue

    kangaSue Senior Member

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    @men100 Cell Trend's testing for these antibodies is not establisheded as being an industry standard and I don't think there is any consensus at this point as to how pathogenic or not these antibodies might be.

    If muscarinic, adrenergic and angiotensin antibodies are the only positive one's that you have, the likelihood is that you will still have to cover the cost of IVIG yourself.

    For the Mayo antibody panel though, there is precedence for treating positive antibodies with IVIG but POTS alone typically doesn't qualify though and you usually need to put another name to a specific condition (that may also have POTS as a symptom) such as Myasthenia Gravis or LEMS (Lambert Eaton Myasthenic Syndrome) for instance.

    It's usually a battle to have any health insurer pay for it regardless.
     
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  13. men100

    men100

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    @kangaSue ,

    Well, from Spain, what I have most accessible is to do the analysis of Germany. I suppose that, if they announce it, it is validated for the diagnosis of autoimmune POTS. I also have other symptoms and as my colleagues in the forum have told me, I am going to look at the mast cell activation syndrome (in addition to POTS, I have positive dermographism, a lot of reflux and other valid symptoms for this syndrome).

    In the hypothetical case that I went to the Mayo Clinic, would your analyzes know for sure if my POTS is autoimmune? It is the first step to receive therapy with immunoglobulins. In Spain it does not work like in the USA, health is public and generally free. This has advantages and disadvantages, because they do not usually prescribe a medication unless it is validated as a treatment for that disease. It would be a fight against the authorities, but what I need is to know that a positive analysis for POTS autoimmunity is a treatment option as has been successfully tested in the US.

    Also, doing it at the Mayo Clinic would mean a lot of money for the trip, stay and tests, I suppose. I would have to ask for a budget and see if I can afford it. The only thing I need to know is if it serves as a diagnostic test and, therefore, if it comes out positive, susceptible to treatment.

    Would not you do the tests in the German lab? However, I will call to ask about the validity of your test.

    Thank you!
     
  14. kangaSue

    kangaSue Senior Member

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    @men100 You don't need to go to Mayo Clinic personally, you just need to have arrangements made to have some blood sent to them for analysis. Same as for Oxford University too, they both accept international blood samples for testing.

    Your healthcare system sounds similar to ours in Australia where POTS alone (even if it is considered autoimmune) doesn't qualify for access to IVIG. You must have another (specified) condition that might or might not have POTS as a symptom as part of the autoimmunity so that's why I had to do the other tests listed in the Mayo panel.

    I don't actually have POTS myself, only Autonomic Neuropathy which can also be autoimmune. If I tested positive to something in the Mayo panel (other than ANA), it could have qualified me for IVIG here.

    That would be the same case if I had POTS rather than Autonomic Neuropathy but if I had testing done in Germany and only had antibodies to muscarinic, adrenergic and angiotensin receptors, this is not approved for accessing IVIG here, and not in America under any insurance plan either as I understand it.

    They do have the option of paying out of pocket for IVIG in the U.S. if the patient so chooses but that's not an option here in Australia
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    Exactly and you can have the blood sample sent to Mayo in the US just like you would send it to Cell Trend in Germany. I live in the US, but am nowhere even remotely near Mayo, so I have the blood tested at a private lab or hospital lab and sent to Mayo.

    Does the Autonomic Neuropathy qualify you to try IVIG now? (sorry for my confusion @kangaSue).

    I believe this is accurate and most doctors and insurance companies do not accept the Cell Trend testing to be valid at this time since it is not from an American Lab (which is pure nonsense IMO). In my case, because I had a LEMS diagnosis w/the Calcium Channel autoantibody & clinical symptoms, then the 7/9 positive Cell Trend autoantibodies showing Autoimmune POTS strengthened my case along with other autoantibodies (Hashimoto's, anti-GAD65, positive ANA titer, etc). But Cell Trend alone would not have gotten me the IVIG and Rituximab.

    But the Cell Trend results were very informative and something we can continue to track and measure into the future. I do 100% believe the Cell Trend tests will be considered valid in the US in the future (and Germany is just ahead of the curve)!
     
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  16. men100

    men100

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    @Gingergrrl

    @kangaSue

    OK, then I understand that the German CellTrend analyzes are reliable and give a lot of information, but it would take something else to justify the use of inmonoglobulins. I sent them an email to inform me of some things, and I will do the same for the Mayo Clinic, which I guess their analysis will be more internationally endorsed (also they, as the analysis comes out, can tell me if they see fit to treat me, even if it's country, with IV immunoglobulin). The bad thing is that I imagine that these analyzes will be very expensive and even more so with international shipping.

    In my case I am also looking at whether I have "Mastocyte Activation Syndrome" since in addition to POTS I have positive dermographism and gastroesophageal reflux (treated with Omeprazole, I have been told that it is very bad for the Chronic Fatigue Syndrome). I also have wheezing and some other symptom so I will go to a referral center in my country. In case of having POTS, and Mastocyte Activation Syndrome, I imagine that I should be treated with the immunoglobulins.

    By the way, I am taking a multivitamin in "high doses" and it also has minerals. I'm also going to start taking a fungus: Mico-Polypor (Polyporus umbellatus). Could this alter the result of autoimmunity analyzes?

    Regards!
     
    Last edited: Aug 27, 2018
  17. Gingergrrl

    Gingergrrl Senior Member

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    Do you have doctor that you could consult with? I imagine this varies a lot depending which country you live in, what insurance you have, etc.

    It really depends and I don't think anyone could make a blanket statement about this. Not all POTS is Autoimmune (although it may turn out some day that it is when the science is more advanced). But if you have Autoimmune POTS and Mast Cell Activation Syndrome (MCAS) plus a positive ANA titer and other autoantibodies, I would think that high dose IVIG would be very reasonable to try (although insurance does not always agree from a payment perspective)!

    I've never heard of Mico-Polypor but can't see how a multi-vitamin or anti-fungal treatment could interfere with autoimmune testing. IVIG itself can interfere with results but this is not an issue in your case since you have not done IVIG yet.
     
  18. kangaSue

    kangaSue Senior Member

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    No, it doesn't qualify here for IVIG because I don't have a high enough level of any of the antibodies in the Mayo panel so Autonomic Neuropathy is categorised as idiopathic rather than autoimmune (my voltage gated calcium channel antibody titre falls in the "normal" range) . The irony is that Autonomic Neuropathy could be part of having seronegative Autoimmune Autonomic Ganglionopathy, which happens in up to 50% of cases of this, but seronegative means no IVIG for this little black duck.
     
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  19. kangaSue

    kangaSue Senior Member

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    I would certainly get the mast cell testing done first because, while Dermographism can occur along with Mastocytosis, it can also be an idiopathic thing where there is no known cause and may just be a coincidental thing.
    I wouldn't think so but I'm no expert on either one.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    All I have to say about all of this is :bang-head::bang-head::bang-head:. Actually I have more to say... First I don't understand why your AN is considered idiopathic if your VGCC antibody titer is positive? On the Mayo Panel that I did, it was considered positive if it was over 0.03 (and mine was 0.05) but it seems like anything over ZERO should be a positive! Also, if AAG can be seronegative in 50% of cases, don't they take this into consideration?
     

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