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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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  1. tomcy6

    Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

    Hi IreneF, I have MGUS or that was my initial diagnosis. It was recently changed to a type of lymphoma, but my hematologist says that it's the same thing. I believe that this has evolved out of my ME/CFS. I believe that I am like the PWCs that Fluge and Mella came across while treating...
  2. tomcy6

    Rituximab in CFS - as a psychotherapy.

    I think that by the time you get to Rituximab you will have tried so many treatments (prescription and nonprescription) and had so many changes in symptoms that your placebo effect capacity will have been used up.
  3. tomcy6

    Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

    Silky, we PWCs don't get to meet very often and we're talking about a pretty small number of people, so I would contact OMI and see if they can connect you with anyone who is in remission.
  4. tomcy6

    Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

    Zostavax is a live virus vaccine so anyone having problems fighting viruses should be very wary of it. Maybe we should get back on topic now. Sorry Silky.
  5. tomcy6

    Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

    Hi Mij, I think in my case it's catching common viruses. I do get symptoms from out of the blue that may be reactivations and I'm scared to death of getting shingles, but usually I come down with a cold or flu-like illness after being out in public, which I avoid as much as possible.
  6. tomcy6

    Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

    You have my sympathy, Woolie. When you put constant viral infections on top of everything else that comes with this illness, it's a miserable way to live. I hope you get well soon and stay that way as much as possible.
  7. tomcy6

    Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

    Hi Gingergrrl, Thanks for the kind wishes. I have been reading your thread on Rituximab and I wish you the best also. Maybe we can get some good news going here. What I was treated for is called a monoclonal gammopathy. Most people with ME/CFS do seem to fall into the no colds or flu...
  8. tomcy6

    Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

    Hello everyone. My name is Tom. I guess it's time for me to get back in here. I have had ME/CFS for over 20 years. I have a bad case of it. I would qualify under any criteria. I am now in what Dr. Cheney would call phase III, IIRC, I don't feel too bad as long as I stay within my...
  9. tomcy6

    Gamma globulin

    Thanks Ema. I'll check that site out. Tom
  10. tomcy6

    Gamma globulin

    Hi Everyone, I have been trying to get help with my immune system for many years now and I would like to ask if someone can point me in the right direction. When last tested my IgG was 531, IgA was 102, IgM was 647. I did a pneumonia vaccine test and on the first check I did not respond...
  11. tomcy6

    Alcohol Tolerance Poll

    I enjoyed alchohol a great deal before CFIDS. After sudden flu-like onset 20 years ago I can't drink even small amounts without sufffering immediate sickness and a hangover. I read an explanation once but it was biochemistry and I can't find it now.
  12. tomcy6

    Article: WPI Throws the Glove Down

    I don't understand why anyone would accuse Cort of trying to cast doubt on the work of the WPI based on the article above. This observation is correct until WPI's work is replicated by another lab. Everyone is free to draw their own conclusions at any time they want, but that's not going to...