Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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How I found the underlying cause of my CFS--anti NMDA antibodies

Discussion in 'General ME/CFS Discussion' started by SK2018, Oct 16, 2016.

  1. SK2018

    SK2018 SK

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    Wear a mask but infection risk is only slightly raised without B cells no big deal.
    I suggest you read this article life without B cells.


    https://www.ncbi.nlm.nih.gov/m/pubmed/22792128/
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    @Shawn Thank you for the article and I just read the abstract and bookmarked it to read the rest later. My doctor (and a few other docs & nurses that I asked) said it was not necessary to me to take anti-virals or wear a mask. If I do have to go into a hospital or am near someone sick, I might wear a mask temporarily out of caution (after I have done Ritux, not this week). I'm glad you are doing so well post treatment, that is really good news!
     
  3. erin

    erin Senior Member

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    @Shawn, how do you feel in general? Do you think you are better now, I mean cured? Do you still feel tired, ME tired? Would you say are you back to your normal self before the infection?
     
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  4. SK2018

    SK2018 SK

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    No I am not back to my normal but better than before for sure I aim to reach 80%,anyway less fatigue now less twitching ,less weird neuro stuff and less confusion bouts.
     
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  5. erin

    erin Senior Member

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    So glad you are better. I hope you keep getting better and better. Thanks for keeping us informed.
     
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  6. abc123

    abc123

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  7. abc123

    abc123

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    aealliance.org has some doctors listed, thanks for mentioning that site.

    Anyone used any labs in the U.S. for NMDA antibody testing?

    I found that Arup Labs seems to have a test...

    http://ltd.aruplab.com/Tests/Pub/2004221
     
  8. boolybooly

    boolybooly Senior Member

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    Interesting Shawn. Sounds a lot like what happened to me back in 1986. I caught HSV2 and had a rash, thought it was over then it came back in monthly-ish cycles and my brain started to get weird, as you describe and more and its stayed that way ever since. Its been a hell of a job just to stay sane. I was undiagnosed for ten years.

    Autoimmune responses make a lot of sense, but clarity regarding cause and effect eludes me, in that autoimmune causes for brain problems are a fit but I dont know if that would explain the chronic immune failure, recurring viruses of several different types piggy backing on the problem and TH2 shift symptoms of very severe allergies which I also experience. Its a bit of a conundrum.

    But I will return to read more and think about it and am very interested to know how you get on.

    Good luck :)
     
  9. Fogbuster

    Fogbuster Senior Member

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    Thankyou so much for this @Shawn. Very inciteful! I might drop you a PM sometime soon to ask a couple of questions, would that be ok?
     
  10. boolybooly

    boolybooly Senior Member

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    One thought I just had was whether NMDA might also be involved in neuroimmune processes. If that was the case then an antibody could cause both neurological and immunological disruption at the same time. Just thinking out loud.
     
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  11. Fogbuster

    Fogbuster Senior Member

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    Personally, I think we should have a section on this forum devoted to Neuro-immune discussions. Seems a lot of us have symptoms with this combination.
     
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  12. SK2018

    SK2018 SK

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    Sure
     
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  13. SK2018

    SK2018 SK

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    Did you get tested for anti NMDA antibodies or a rat brain Assay to detect novel antibodies ?

    Also was HSV 2 ever detected in your CSF?

     
    Learner1 likes this.
  14. Jesse2233

    Jesse2233 Senior Member

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    @Shawn if one is serum negative for the MAYO panels do you think it's likely their CSF will be negative as well?
     
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  15. SK2018

    SK2018 SK

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    CSF should be tested also esp if you have nuero issues
     
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  16. Jesse2233

    Jesse2233 Senior Member

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    @Shawn thanks, how's it going with the Bortolizimab?
     
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  17. rodgergrummidge

    rodgergrummidge Senior Member

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    Shawn[/QUOTE]
    Very interesting @Shawn , I hadnt considered anti-NMDA antibodies have a possible roll in some CFS. You and others in this thread (@Jesse2233 @boolybooly @Fogbuster @abc123 ) may be interested in a recent case study publication where D-cycloserin was successfully used to treat a patient with auto-NMDA receptor antibodies who was suffering from anti-NMDAR encephalitis. The authors point out that while immunotherapy can successfully treat patients suffering the consequences of NMDA autoimmunity (Such as in your case @Shawn ), D-cycloserin may also be a potential therapy in more difficult cases.

    Are they the same research team that treated you in China @Shawn ?

    I have pasted the front page below. The full article is available free online.

    Rodger
    upload_2017-9-22_16-27-10.png
     
  18. boolybooly

    boolybooly Senior Member

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    No and no. I am averse to disturbing the dura membrane while in this situation I have with recurring viruses so I have had no CSF tests. This also makes me cautious wrt rituximab.
     
  19. Okian

    Okian

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    How do you feel nowadays @Shawn ?
     
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  20. Aubry

    Aubry Senior Member

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    I have very high Herpes IGG titers. What could this mean and what should I do about it? Taking longterm antivirals?
     

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