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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. frujo

    Article about new potential treatment by Victoria Bohne, in Norwegian

    I would aslo like to try this myself, how is it going for you?
  2. frujo

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    You are right, I am not in the study. The treatment at Kolibri is not part of any study. But we stil must be quit about our sideeffects so our treatment doesn't affect the people in the study. They might know what they get if we tell everyone about how it feels to get rtx. Are you with me? :)
  3. frujo

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    I am so sorry but I cannot share this information because of the study. It is important that the participants cannot guess if they got Rtx or not, therefore I cannot share my process or side effects, I am sorry. :vomit:
  4. frujo

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    Hello, yes I have made up my mind and have now taken 2 infusions of Rituximab. The last on monday. :)
  5. frujo

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    Yes I do have ME/CFS, but I have never been testet on the Elispot - test, just the Elisa test. I am very uncertain what I think about the lyme debate.
  6. frujo

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    I have now made up my mind, I will go to Kolibri instead of KDM. I feel there is now way I might now which one is the best for me, it´s lika a lottery! But after reading threads here and on Facebook I finally made up my mind. I have an appointment next friday for blodtests and meeting with the...
  7. frujo

    About to start KDM treatment

    I completely understand that you reacted on this! I also think it´s very annoying that they don't respond quicker. I have now had a change of heart. I am instead going for Rituximab treatment in Norway. I am really unsure about long term treatment of abx and also about the lyme thread in...
  8. frujo

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    Yes it is, I spoke with them today.
  9. frujo

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    Ok! Best of luck! I appreciate you comments. (Y)
  10. frujo

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    Yes I agree! The more I read I get the same impression. I have already made an appointment with KDM, but I think I will re-cancel. I have today made an appointment with Kolibri also. But I am still a bit unsure. So it is really good to get som input from more people. Have you tried Rituximab?
  11. frujo

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    With KDM i meant Kenny de Meirleir. Thats a complete other type of treatment.
  12. frujo

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    Thank you :) I live in Norway so I am going to Kolibri.
  13. frujo

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    Hello, I am new here on the forum. I am considering Rituximab or KDM, but I am so unsure! Does anyone else has any thought about this?
  14. frujo

    About to start KDM treatment

    Hello, I am new here. :) How is it going now trickthefox? I have an appointment with KDM in late May, but I am not completely sure about going.