Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Retuximab coverage

Discussion in 'General ME/CFS Discussion' started by Butydoc, Sep 26, 2017.

  1. Butydoc

    Butydoc President

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    Because of the recent events on Phoenix Rising and the way I have been characterized, I don't feel comfortable posting this on the open forum. I will respond to PM with the understanding this is confidential. Hopefully some will find this useful in the pursuit of coverage of this expensive drug. My wife use to run my office and is very knowledgable of this process. Presently I appear to be having a positive response to Retuximab at the 6 month mark.

    Gary
     
  2. shannah

    shannah Senior Member

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    Yay @Butydoc !

    Terrific news! Thanks for sharing...
     
  3. NelliePledge

    NelliePledge plodder

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    @Butydoc I think you need to move this to members only general me/cfs discussion this is in general me/cfs discussion on the main forum
     
    AndyPR, Gingergrrl, barbc56 and 3 others like this.
  4. Cheesus

    Cheesus Senior Member

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    Gingergrrl, barbc56, Molly98 and 2 others like this.
  5. Invisible Woman

    Invisible Woman Senior Member

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    Great to hear @Butydoc! I hope the improvement continues.

    Thanks for letting us know. I would be interested in hearing more, but only what you feel comfortable sharing.
     
  6. perrier

    perrier Senior Member

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    Please consider posting on members only. It is urgent for all the suffering to hear your details.
     
    Hanna, AndyPandy, Gingergrrl and 2 others like this.
  7. Barry53

    Barry53 Senior Member

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    That is good to know.
     
    Gingergrrl, Aroa, Jennifer J and 5 others like this.
  8. Gingergrrl

    Gingergrrl Senior Member

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    @Butydoc That is great news and I will definitely send you a PM and want to hear more about this. I agree with the other members who suggested moving this to the "Members Only" section... (and Cheesus I recognize you again w/your old Avatar back)!
     
  9. geraldt52

    geraldt52 Senior Member

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    I'm thinking that you might be overwhelmed with PMs, @Butydoc, as so many are desperate for such information. Before we overwhelm your inbox, maybe you should come up with some sort of "standard response", so that everyone who PMs you would receive the same thing, without you having to answer individual questions?...not trying to tell you what to do, just trying to be helpful. I do hope that any improvement you're seeing is a response to the Rituxan.
     
  10. Butydoc

    Butydoc President

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    Thanks Geraldt52 for your suggestion. This is really not a problem for me.

    Kind Regards,
    Gary
     
  11. Jesse2233

    Jesse2233 Senior Member

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    @Butydoc grest news! Congrats, hope improvements continue

    What sort of benefits are you seeing, and did you have any autoimmune indicators (labs, POTS, etc)?
     
    Molly98, perrier and Gingergrrl like this.
  12. Cheesus

    Cheesus Senior Member

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    The macaque and I were just not meant to be.
     
  13. snowathlete

    snowathlete

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    good to hear you are reacting positively to the treatment @Butydoc I hope that continues.
     
  14. Alvin2

    Alvin2 If humans were rational...

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    i seem to have missed that avatar experiment
     
    Mrs Sowester likes this.
  15. PNR2008

    PNR2008 Senior Member

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    Great news.
     
  16. Countrygirl

    Countrygirl Senior Member

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    So pleased to hear this and would like to know more.

    I do hope your improvement continues @Butydoc .

    Thank you for sharing your encouraging news.
     
  17. Skippa

    Skippa Anti-BS

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    Hi, I am really pleased to hear your success with Rituximab.

    I wonder, would you be willing to share any details of side effects? Did you experience any? ... were there any bad effects that offset your gains?

    Thanks :)
     

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