• 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 (FM), 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. S

    Gcmaf-reactions and side effects

    Hi there, My mouth is not burning, but as I've mentioned here earlier my back has been 'on fire' since my first Gcmaf injection. I had to stop Gcmaf 5-6 weeks ago due to insomnia which hit me hard after my 7th injection - the burning sensation is slowly fading, but is still there at times...
  2. S

    GcMAF trial

    Good to hear that you are doing so much better!!! Would be iteresting to know what kind of symtpoms you experienced from Gcmaf during IRIS. Have the treatment been symptom free after this? If understand you correctly you started to improve app. after 5 shots or so? Enjoy the new activities:)...
  3. S

    Nagalase levels

    That is interesting for sure! Good to hear that the Gcmaf has had a positive effect on your Nagalase levels. But sorry that you're not feeling better. Have you had the chance to discuss this with KDM - would be interesting to hear his views on this and what treatment he would suggest from now...
  4. S

    Gcmaf-reactions and side effects

    I have been puzzled by the very strong reaction I got after the 1st Injection-as described above intense burning/pain in my lower back i.e. I decieded to postphone my 2nd injection for a week due to this, and I have so far taken 2 doses at home -SC- and have hardly had any reaction at all...
  5. S

    Gcmaf-reactions and side effects

    Thanks for sharing in re to burning sensation. How long have you been on Gcmaf? What I find strange is that this pain/burning startet after just 1/4 dose of Gcmaf-at least my body is reating to Gcmaf. Just had my second dose today. Hope someone have some experiences to share in re to your new...
  6. S

    Gcmaf-reactions and side effects

    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. I have heard that flu-like symptoms, fatique and pain might be good signs...
  7. S

    Gcmaf-reactions and side effects

    I tought it could be an idea to have a seperate thread on side effects during Gcmaf treatment-to share our experiences and learn from each other. There seems to be some signs/symptoms that might be telling is that it works while others are indicators to reduce the amount or stop treatment for...
  8. S

    XMRV positive and cytokine profile?

    Thanks for your reply maryb. I am not really familiar with the results you are referring to - I guess we all take different bloodtests. But since there are quite a few patients of KDM i.e. sharing their experiences at the forum I thought it would be interesting to compare the il8 as well as MIP...
  9. S

    XMRV positive and cytokine profile?

    I am a patient of KDM and have tested negative for XMRV (co-culture, serology. stomach biopsy). Still other values could indicate that I am retrovirus +, i.e. extremely low CD 57 (8), high sCD 14 (almost 11 000), and Nagalase 1,7 (ref. 0,32-0,95). However, my cytokine profile may not be typical...