• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. P

    Gcmaf-reactions and side effects

    Has anyone had the headache and insomnia? "I did ask specifically about this when I started Gcmaf, and was told by KDM and th nurse that headache and insomnia were signs to look out as this would indicate that the body had problems tolerating the treatment." from previous submission Does...
  2. P

    What is causing hair loss?

    Mine is definitely from the ME I have been losing hair for the last several years that I know of. When I first noticed it it was coming out in handfulls. I didn't notice the loss when I first got the disease. I saw a dermatologist who took a history and blood tests. Finally she did a biopsy...
  3. P

    GcMAF - What dose, and how much does it cost?

    How are you doing now Daffodil? I read your earlier posts that you were having some symptoms from your treatment. Have they resolved and how are you doing now?
  4. P

    certain part of brain feels pressure/inflammed often

    Brain Pressure feeling Yes, I get that pressure also but on the upper left side. It gets worse with physical or mental stress and lack of sleep. I also have to eat regularly to keep it fro getting worse I have never had any studies done. Your EEG results are interesting. Maybe something...
  5. P

    Anyone who cannot tolerate Nexavir?

    I have had problems tolerating it. It gave me severe headaches which have only partially resolved and has made me feel more washed out and dizzy. I cannot do half of what I could do before and that wasn't much to begin with. Spent the entire last week in bed and just went out to do a couple...