Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

Autoimmune Basis For POTS

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Peyt, Jul 19, 2018.

  1. Peyt

    Peyt Senior Member

    Messages:
    501
    Likes:
    159
    Hi,
    I came across this study: http://jaha.ahajournals.org/content/3/1/e000755
    and wanted to see if anyone has been diagnosed with a viral or bacteria infection that was the underlying cause of their POTS?

    Honestly, I understand if someone has mechanical issues with their heart that is causing Tachycardia, but if the heart is fine (verified on EKG and Holt and other tests) and they also have food allergies or severe seasonal allergies (or both) I would think the next logical step would be to look into some kind of immune problem....

    Does anyone know of any viruses or bacteria that once treated could help improve the symptom of POTS?
    I remember I read something a while back about EBV being one virus that even in dormant state could effect the heart but I can't find it now.

    Any information is appreciated.
     
    manasi12, sb4 and Gingergrrl like this.
  2. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,109
    Likes:
    35,405
    USA
    @Peyt I have an official diagnosis of "Autoimmune POTS" and it was virally triggered. I had severe Mono/EBV and then a second virus. I developed POTS in less than two weeks after getting the second virus and never had it before. It took a long time for doctors (and myself) to figure out that it was POTS but I met the full criteria and saw three different cardios, neuros, and had two TTT tests.

    I developed MCAS/ anaphylaxis to food almost exactly two years after the POTS began. The virus(es) led to other immune issues (Hashimoto's Disease and my official diagnosis now of "Atypical LEMS"- thank God the non paraneoplastic/cancerous form).

    I am in remission now but the final problem that was the most intractable was the POTS. It both started and ended this entire nightmare. I have no idea if my remission is permanent and only time will tell. The treatments that helped my illness were high dose IVIG and Rituximab. There is a group who I strongly believe it can help (those with autoimmune dysautonomia) but I also believe there are many people in which it would not be helpful.

    Getting accurate testing was absolutely critical in my case and I spent a lot of time trying things that did not help or even made me worsed. Sorry I am rushing to type this but wanted to reply.
     
    Gemini likes this.
  3. Peyt

    Peyt Senior Member

    Messages:
    501
    Likes:
    159
    Thanks Gingergirl,
    What was the name of that 2nd virus?
     
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,109
    Likes:
    35,405
    USA
    Unfortunately, I will never know. It was Jan 2013 and was an upper respiratory virus. I ended up going to Urgent Care and was given a cough medicine w/codeine but no testing was done. We later wondered if it was the reactivation of EBV from 10 months earlier or something completely new? My husband had pneumonia about a month prior and I do not know if I caught it from him? We had also moved into a rental with toxic mold only two months prior so I do not know if the mold exposure was the true trigger?

    In any case, in mid-Jan right after the virus, I had very first POTS episode but I never again got sick (and I have not had a cold, flu, or traditional illness of any kind since Jan 2013 - now 5.5 years). It's not that I "want" to get sick vs. that I do not seem capable of it. That final virus did something to my immune system that eliminated my ability to get sick. When my mom was dying of cancer, I was at the hospital every single day for eight weeks, during a huge flu epidemic, and I was technically immunocompromised from Rituximab, and every single member of my family (like six people) got sick except for me. It was truly bizarre.
     
  5. Peyt

    Peyt Senior Member

    Messages:
    501
    Likes:
    159
    Interesting, when I was 2, I got an upper respiratory infection (not sure if it was a virus or bacteria) and was given very strong antibiotics for it. Since then I had reoccurring sinus infections every year (3-4 times a year) . I have also had the fast heart beat ever since. But since there was nothing wrong with my heart mechanically the Doctors just over looked it until the last 10 years when the blood pooling to the legs and other symptoms got worst.
     
    Gingergrrl likes this.
  6. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,026
    Likes:
    5,179
    Pacific Northwest
    I have autoimmune POTS, diagnosed with the CellTrend test. I also had EBV, HHV6, CMV, HDV2, Zoster, Parvovirus B19 and 2 atypical pneumonias. My doctor suspects that the EBV triggered the POTS but who knows?

    I've had the POTS for about 2 years, so it was not an initial infection, but more of a reactivated chronic infection that seems to trigger it.

    I am getting high dose IVIG and take beta blockers and pyridostigmine and my symptoms are much improved, but I'm not cured yet.
     
    Peyt likes this.
  7. Peyt

    Peyt Senior Member

    Messages:
    501
    Likes:
    159
    Hi Learner1,
    Was the IVIG prescribed by a Cardio or an immunologist doctor?
    My cardio has never mentioned IVIG nor has he ever tested me with CellTrend test, so I am wondering if I need to see a different type of doctor for that.
     
  8. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,026
    Likes:
    5,179
    Pacific Northwest
    The IVIG was prescribed by my ME/CFS specialist. I wouldn't think a cardiologist would be prescrubing autoimmune treatments.

    However, any doctor can prescribe it with the right diagnostic codes. You might get familiar with the approved ICD10 codes and testing needed by your insurance or in your country and see if any fit. I was lucky, as I had low Immunoglobulins, which is one of the more common reasons.

    You might also see if the attached case study fits you, and if so, share it with your doctor in support of your request for IVIG. I've also attached a couple of other documents that might be helpful.
     

    Attached Files:

    voner, manasi12 and Peyt like this.
  9. Peyt

    Peyt Senior Member

    Messages:
    501
    Likes:
    159
    very interesting, thanks
     
  10. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,109
    Likes:
    35,405
    USA
    I think I forgot to mention that part in my reply @Peyt but the Cell Trend testing was also an important part of confirming that I had autoimmune POTS b/c I was positive for 7/9 autoantibodies including the beta-adrenergic ones that correlate with POTS. I know many people with POTS who were not positive for these autoantibodies, suggesting a non-autoimmune cause in their cases.
     
    Learner1 likes this.
  11. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,026
    Likes:
    5,179
    Pacific Northwest
    Or, it could have been other antibodies causing their POTS.
     
    Gingergrrl likes this.
  12. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,109
    Likes:
    35,405
    USA
    I agree and was just thinking of the beta adrenergic autoantibodies when I typed my reply but I know there can be others (I think the angiotensin autoantibody on the new Cell Trend Panel is one of them)?
     
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,109
    Likes:
    35,405
    USA
    I am going out shortly but was just searching Phoenix Rising to see if @Cort's new blog re: the 2018 Dysautonomia Conference has already been posted? If not, I will post it later and summarize the highlights.

    It's an excellent blog and basically confirms that there is a huge subset of POTS for which is is autoimmune (like me)! It quotes several top doctors and researchers on this topic (Dr. Blair Grubb, Dr. Kaufman, Dr. Scheibenbogen, and several I am forgetting without re-reading the blog).

    I thought it would interest you @Peyt because of this thread. I will post the link & highlights later (unless it has already been posted on PR and I am missing it)?
     

See more popular forum discussions.

Share This Page