The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Postural tachycardia syndrome (POTS) with anti-NMDA receptor antibodies after human papillomavirus v

Discussion in 'Other Health News and Research' started by Kati, Aug 28, 2016.

  1. Kati

    Kati Patient in training

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    http://www.ncbi.nlm.nih.gov/pubmed/27561785

    Immunol Res. 2016 Aug 25. [Epub ahead of print]
    Postural tachycardia syndrome (POTS) with anti-NMDA receptor antibodies after human papillomavirus vaccination.
    Blitshteyn S1, Brook J2.
    Author information
    • 1Department of Neurology, State University of New York at Buffalo School of Medicine and Biomedical Sciences, Buffalo, NY, 14203, USA. sb25@buffalo.edu.
    • 2Department of Psychology, University of California, Los Angeles, Los Angeles, CA, 90095, USA.
    Abstract
    We describe a young woman who developed POTS with positive serum anti-NMDA receptor antibodies and no evidence of encephalitis after vaccination with HPV vaccine, Cervarix. Her symptoms improved significantly with immunomodulatory therapy and re-occurred after immunomodulatory therapy was stopped, suggesting an autoimmune etiology of POTS after vaccination.
     
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  2. Kati

    Kati Patient in training

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    Then I found this site on 'Anti-NMDA receptor encephalitis'
    http://www.antinmdafoundation.org/the-illness/what-is-anti-nmda-receptor-encephalitis/

    It gets curiouser and curiouser. If only we had research funding...
     
  3. Justin30

    Justin30 Senior Member

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    I read way back an article about the HPV vaccine where thousands of young children had adverse effects.

    I never heard anything about it since.

    Have no clue where the article is now....i was really shocked when I read it.

    Its was before I got sick.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    One of my best friends has a friend whose daughter was in perfect health until she got the Gardasil HPV vaccine. She then became so sick she was bedbound and had to drop out of college and was considering a stem cell transplant in another country b/c no treatments were working for her. Thousands of girls and women have had adverse effects from this vaccine and we are not allowing our daughter to have it even though the doctors push it like crazy.
     
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  5. natasa778

    natasa778 Senior Member

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    The story is tightly controlled by the media, very few articles manage to seep through.

    The Times has just written about this one case, a girl was diagnosed as 'CFS' and left to rot ... see this new thread http://forums.phoenixrising.me/inde...er-own-rare-illness-written-off-as-cfs.46459/
     
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  6. Groggy Doggy

    Groggy Doggy Senior Member

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  7. voner

    voner Senior Member

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    By coincidence I'm reading a memoir about Anti-NMDA receptor encephalitis titled, "brain on fire – my month of madness". I am not yet finished, but items of note in her experience:

    - sometimes the symptoms were initiated after a bout with a infection, like the flu, and at times associated with occurrence of a benign tumor.

    - The psychosis was really severe and is accompanied by movement and speech difficulties, and

    -they treated her with IVIG, massive amounts of steroids, and plasmapheresis.

    - confirmation of the diagnosis required them to drill into her brain and take samples of her brain tissue.

    - at a point, like nine months later, she returns to work.
     
    Last edited: Aug 28, 2016
  8. Jammy88

    Jammy88 Senior Member

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  9. Gingergrrl

    Gingergrrl Senior Member

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    Similar book is "The girl on the 6th floor" which is about the anti NMDA antibodies and they treated her with IVIG and Rituximab and she made a good recovery. I know I do not have this particular Ab based on my symptoms but I believe the potential link is the paraneoplastic syndromes and autoimmunity. I wish someone in the US was studying these autoantibodies but right now it seems to be limited to Dr. Vincent in the UK and Dr. Shiebenbogen in Germany. I know this is part of a spectrum of illnesses which include ME/CFS. Well, I guess I don't know for sure but this is my gut feeling.
     
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  10. voner

    voner Senior Member

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    @Gingergrrl,

    I know nothing about this subject other than having read that book, but the book mentions Dr Josep Dalmau at the university of Pennsylvania, which has expanded its research and clinics in autoimmune neurology. Here's a tidbit from his bio on their website:

    Here is a page from their website that describes some anti-bodies and associated diseases:

    http://www.med.upenn.edu/autoimmuneneurology/classification.html
     
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  11. NL93

    NL93 Senior Member

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    I got really ill 1 year after getting the HPV vaccin. My health and energy slowly began getting worse at around the time i had the vaccinations. But it wasn't that bad at first. Full ME+POTS developed about one year later.
    I also have positive ANA.

    Anti mnda encephalitis seems to have a lot in common with severe ME. I have had all the symptoms described.

    I have thought about anti mnda encephalitis before, because i had a very big tumor on my ovary (it caused my ovary to twist, and i needed surgery to take the entire thing + ovary out), and that type of tumor is highly associated with anti mnda encephalitis.

    It makes me think.. I don't nessecarily think i have exactly this, but maybe something in the same group of illnesses?

    What immunomodulatory therapy are they talking about?
     
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  12. Kati

    Kati Patient in training

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    Hi @NL93 I am very interested a out 'that type of tumor is highly associated withanti-NMDA encephalitis- do you have reference for that?

    At onset, I had lab comfirmed EBV. I had liver involvement. Then after a gallbladder attack 2months later, I had an abdominal ultrasound which revealed a 8,5 cm ovarian cyst. It was the weirdest thing.
     
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  13. voner

    voner Senior Member

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    Kati,

    From the University of Pennsylvania center for auto immune neurology's website:

    http://www.med.upenn.edu/autoimmuneneurology/nmdar-encephalitis.html
     
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  14. NL93

    NL93 Senior Member

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    http://www.antinmdafoundation.org/the-illness/what-is-anti-nmda-receptor-encephalitis/

    I had a 10cm ovarian teratoma.
     
  15. NL93

    NL93 Senior Member

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    Omg.
     
  16. voner

    voner Senior Member

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    Looks like the University of Pennsylvania hospital lab will do a autoimmune encephalitis panel...

    http://www.med.upenn.edu/autoimmuneneurology/patient-care.html
     
    Last edited: Aug 28, 2016
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @voner, Thank you for that link which I think I may have seen before but have now officially bookmarked on my computer and on PR. My autoantibody (n-type calcium channel, not NMDA) links to a paraneoplastic syndrome via small cell lung cancer which I now have to be checked for ongoing for the next 3-5 years. But in some cases, there were a few cancer cells and the body knocked them out but the PNS remains.

    In the "Girl on the 6th floor" she had hardcore NMDA encephalitis but they never found an ovarian terratoma or any cancer and checked for years. She was given IVIG and RTX. It just seems that there is a group or subgroup of people who get diagnosed with ME/CFS but ultimately have some type of PNS from one of these autoantibodies.

    I cannot figure out if we (b/c this is the group I am in) are along some kind of ME/CFS spectrum or have a different illness. I wish there was a study of us with IVIG and RTX that correlated with specific autoantibodies. Maybe the link you gave me does these kinds of studies or research and I need to look at it further. So far, there is no cancer in my case and hoping there never will be.
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    @Kati and @NL93, I was wondering in either of your cases if the cyst or teratoma was viewed as part of a paraneoplastic syndrome? It seems that this terminology (PNS) is very new (or at least it is very new to me!) so I am guessing autoantibodies were not even on the radar at that time as they are still barely on the radar now.
     
  19. Kati

    Kati Patient in training

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    Mine was a benign cyst filled with liquid. There was no mention of paraneoplastic syndrome, and just like my gallbladder, the surgeons (gyne and GI) both said there was no link with my very recent of history of EBV infection (year, right)

    It would be interesting if each patient asked their primary doctor whether they know what paraneoplastic syndrome is. I would guss that 95% have never heard of it and wouldn't know how to diagnose it.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Agreed and not just for the PCP's. I suspect most doctors outside of neuromuscular specialists, oncologists, and a few others who are really up to date, have not heard of this and would not know how to treat it.
     

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