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How I found the underlying cause of my CFS--anti NMDA antibodies

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

  1. Shawn

    Shawn Senior Member

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    I emailed Angela Vincent a few weeks ago by myself ,she replied and sadly she has now retired.
     
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  2. frederic83

    frederic83 Senior Member

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    Hello Shawn, I don't post in this thread but I'm following it :D

    Is the list above in your preference order?
     
  3. Shawn

    Shawn Senior Member

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    Thanks ,No just in random order.
     
  4. frederic83

    frederic83 Senior Member

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    The smiley beside prednisone means you particularly like it, or it was to make the list prettier ? :)
     
  5. Shawn

    Shawn Senior Member

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    Auto screwed by iOS ;)
     
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  6. Tofer

    Tofer

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    Shawn thank you!

    She hasn't tried fasting, cause she is under-wieght. It's really hard for her to gain some weight, especially now. But in theory it sounds interesting. Your body just start eating what it needs the less and IS cells as well.
     
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  7. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    @Shawn Apart from NMDAr AB, were there any other antibodies that you were tested for, in CSF or in blood? I think of a DDX list. Thanks!
     
  8. Shawn

    Shawn Senior Member

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    Yes all negative ,there are so many yet undiscovered auto antibodies .
     
  9. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    would you mind posting the list of tests? even if all were negative in you, they could help other people (and me :) ) looking for differential diagnoses....

    Also you wrote that Angela Vincent retired. Did she imply that the lab which did the NMDA tests for her also ceased? (I have difficulties to imagine that as so many doctors from so many countries sent her their pateint's samples for testing...)
     
  10. Shawn

    Shawn Senior Member

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    I have no idea about her lab i would imagine it's taken over by someone equally as capable.The panel they did was almost the same as the" mayo clinic auto immune encepalopthy panel" so try searching that it's pretty much identical.
     
    Last edited: Nov 21, 2016
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  11. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    Found!
    http://www.mayomedicallaboratories.com/test-catalog/Clinical and Interpretive/61510
    http://www.mayomedicallaboratories.com/test-catalog/Overview/61509

    What I found interesting, that they emphasize so much a paraneoplastic situation as a typical indication for these autoantibody tests. This makes a lot of sense: when the body fights some cancer, it must develop means to destroy cancerous tissue. So here it is not implausible that autoantibodies arise and studies have shown exactly that. Unfortunately for me, I just realized that I have some worrysome results in this regard: my fasting amino acid profiles in blood are almost identical to the gastric (GC) and colorectal cancer (CRC) profiles in this study, see Fig 2 (the image below. blue colour means deficiency, red excess). I eat fully enough protein. Have no malabsorption or other digestive issues. Have eaten 87.8g protein that day, which is more than fully enough. Had the amino acid profile in the next morning, fasting. -> There is no normal explanation for deficiencies.

    IMG_20161122_075912.jpg

    Legend: blue = deficiency, white = normal, red = excess, GC = gastric cancer, CRC = colorectal cancer

    In sum:
    • Cancer is a reason for neuronal autoantibodies. (I have high alpha1 adrenergic receptor AB. NMDAr AB is a possibility. A neurologist recently diagnosed autoimmune polyneuropathy in me)
    • Amino acid profiles are an ingenious and scientific way for an early diagnosis of cancer, when one can still do sthg and when other means of diagnosis do not yet show much.
    I hope for you that in case you take the test, you wont have anything resembling the pictured situations... I discovered all this today, after last week doctors looked baffled at my lacking amino acids that did absolutely not fit my abundant protein intake... Certainly, they did have no clue how that is possible...

    Thanks to @Shawn for pointing me to the Mayo panel!! Without that hint, I would not have found the starting point for all this. Could be that you saved my life... further tests will show...
     
    Last edited: Nov 22, 2016
  12. frederic83

    frederic83 Senior Member

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  13. kangaSue

    kangaSue Senior Member

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    While a high emphasis is placed on paraneoplastic syndromes, this is the rarest outcome to have for those with a positive antibody titer and from memory, I think it mostly only occurs in those with grossly elevated antibody results.
     
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  14. Shawn

    Shawn Senior Member

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    I have attempted to contact him via email to find out.
     
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  15. Shawn

    Shawn Senior Member

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    Fascinating information thanks for posting ,except for HSV there could r an underlying discreet cancer somewhere also that would make B cells so paranoid and on edge as to make this mistake to a "common" virus in the first place.Did you have a full body MRI or PET? Or a "Tumor marker" test? I know negative results don't 100% exclude cancer as the tumor could be microscopic but its presence eliciting Neuro immune dysfunction.
     
  16. Shawn

    Shawn Senior Member

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    Sometimes I read these holistic solutions to auto immune diseases,it's good advice but when he says confidently "remove the trigger of your autoimmune reaction" well that's easier said than done and sadly not possible when it's a herpes virus like HSV , HHV6 ,CMV ,EBV that started it ,as your body is making cross reactive antibodies against the virus that hits your own tissue at the same time ,but sure lets just go and "remove"those latest viruses it's easy right ?as the article says so.

    It seems a lot of people with ME ,CFS get chronically sick after an initial viral infection despite usually negative readings for viral DNA or infectious maker thus it's most likely a persisting cross reactive auto immune response.

    I understand leaky gut can cause auto immune issues also but seems most people with ME had a viral trigger and many of the flu like symptoms can be attributed to one part of the immune system (the good part) constantly suppressing /fighting the bad part ,such chronic immune activation can't be doing any good long term and will burn out the system way earlier than should be.
     

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  17. Tofer

    Tofer

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    Shawn, please, I know it's not easy for you and you might have your problems. But can you provide contacts of the clinic in china, that can make autoimmune analysis, cause in Russia nobody makes it in a proper way.
     
    Last edited: Nov 23, 2016
  18. kangaSue

    kangaSue Senior Member

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  19. Shawn

    Shawn Senior Member

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    Have sent you via PM
     
  20. ebethc

    ebethc Senior Member

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    how many rounds of Rituximab to ppl typically do? I only have EBV - not CMV or HHV-6, so I am lucky in that regard b/c those infections seem to be much stronger than EBV from what I've read. thx.
     

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