Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Brain on fire and treatment

Discussion in 'Other Health News and Research' started by Nickster, Aug 29, 2017.

  1. Nickster

    Nickster Senior Member

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  2. Tammy

    Tammy Senior Member

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    I don't know if I missed it.............but what was the treatment?
     
  3. Nickster

    Nickster Senior Member

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    Ivig
     
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  4. Gemini

    Gemini Senior Member

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    Some familiar, to us, treatments: [excerpts from Wikipedia]

    first-line immunotherapy... involves steroids to suppress the immune system, intravenous immunoglobulin, and plasmapheresis to physically remove autoantibodies. A study of 577 patients showed that over four weeks, about half the patients improved after receiving first-line immunotherapy

    Second-line immunotherapy includes rituximab, a monoclonal antibody that targets the CD20 receptor on the surface of B cells, thus destroying the self-reactive B cells. Cyclophosphamide, an alkylating agent that cross-links DNA and is used to treat both cancer and autoimmune diseases, has sometimes proven useful when other therapies have failed.

    Other medications, such as alemtuzumab, remain experimental
    .

    https://en.wikipedia.org/wiki/Anti-NMDA_receptor_encephalitis
     
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  5. Gemini

    Gemini Senior Member

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    @Nickster, by any chance was this post moved to a different thread?

    Anti-NMDA receptor encephalitis, 3 patients, and the book "Brain on Fire" were featured on a one-hour program on HLN Network two nights ago...

    Interestingly, the Autoimmune Encephalitis Alliance website indicates 15 different types of AE and three labs offering testing: Mayo Labs, Euroimmun, and Athena Diagnostics...
     
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  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    I've never heard of them. For anyone who wants to have a look: https://aealliance.org/

    There's a call for brain tissue samples too. (I presume from autopsy)
     
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  7. Nickster

    Nickster Senior Member

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    I have left a message and emailed the primary neurologist and his clinic to get more information.
    I think there is so much more to these different types of disease and inflamation. More diseases seem to have similarities.
     
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  8. Nickster

    Nickster Senior Member

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    This thread is under news and research
     
  9. lnester7

    lnester7 Seven

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    FYI i had great success with this supplement for brain on fire:
    http://www.gnc.com/l-carnitine/043112.html?productId=16513066
    GNC ACETYL-L-CARNITINE ALPHA-LIPOIC ACID

    I am glad I found a solution, mine was so bad I remember thinking this is why people jump without thinking when a building is burning. It take a few weeks to work but once it does is amazing.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    Another excellent book on this topic is "The Girl on the 6th Floor". She has anti-NMDA receptor encephalitis which if hadn't been discovered in time, I don't think she would have survived. It is told from the perspective of her father and is very easy to read.
     
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