• 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. S

    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    I thank you for your work in this area and believe that it is crucial to keep asking questions of these harmful people who have such little understanding of the suffering they cause. Its marvellous that she knows that she will have to face you after false accusations. Sometimes our battle gets...
  2. S

    KDM abx protocol for borrelia

    Hi Joel Do you know if I can use my EHC card to get the pharmacists in the EU to dispense a prescription from a fellow member country free of charge?? The pharmacist here was telling me that if I go to an Eire GP, the GP will then write me an Eire prescription equaivalent to KDMs, which I...
  3. S

    KDM abx protocol for borrelia

    Hi Joel Thanks so much for your help. This might sound stupid but how do i send you a private message??
  4. S

    KDM abx protocol for borrelia

    Hi All! Ive had a positive LTT for borrelia from infectolab and KDM says i have a Lymes infection. But my GP does not accept this as proof that i have a Lymes infection, she did the usual NHS tests for Lymes and they were negative??. She also says that the the Clarithromycin 500mg per day is...
  5. S

    KDM abx protocol for borrelia

    Hi has anyone had a diagnosis and treatment from Prof KDM for Lymes disease? Was the diagnosis based on symptoms or tests or both? and Have you been treated, how is it going etc?
  6. S

    IS PROFESSOR SIMON WESSELY GUILTY OF MISLEADING

    Here Here MeSci! All I can say is well done to whomever it was that compiled that pdf . Ok It may be true that it has no real chance of being effective but there is more going on here. With so little wider recognition of our desperate plight documents like that will inspire us to carry on. To...
  7. S

    Invest In Me 2013 conference speakers announced

    Please forgive me if I let of a bit of steam here. It is beyond me how a group who claim to want to raise money for biomedical research into ME can have a woman who advocates CBT speak at their conference. While we, are after more than 20 years still scratching around for money for research she...
  8. S

    Reaction to first GcMaf injection? is this inflammation? what is happening here?

    I have just seen KDM and had a 1/2 vial IV of GcMaf while I was there due to my sensitivty to drugs etc and as a test for my reaction. I have experienced a slow exacerbation of burning behind eyes and headaches with associated depression, joint pain and heart rate over reaction, also when waking...
    • self
    • Thread
    • Replies: 1
    • Forum: GcMAF
  9. S

    Gcmaf-reactions and side effects

    I have just seen KDM and had a 1/2 vial IV of GcMaf as a test for my reaction. I have experienced a slow exacerbation of burning behind eyes and headaches with associated depression, joint pain and heart rate over reaction, also when waking from sleep it regularly takes me some time to work out...
  10. S

    Has anyone been treated by de meirlier who was found to have low nagalase, what did he prescribe?

    Hi Sushi, Thanks for that response. Its such a lot of money for me to go and have all the tests that I was thinking of getting a Nagalase test done in uk. But the truth is that unless I know that Demeirlier just abandons you if your nagalase is low I would like to know what he would suggest...
  11. S

    Has anyone been treated by de meirlier who was found to have low nagalase, what did he prescribe?

    Has anyone been treated by de meirlier who was found to have low nagalase and what did he prescribe? Im assuming that if your nagalase isnt high then GcMaf isnt taken as its not likely to be effective?? Also how long does GcMaf have to be taken , do you have to stay on it for good or is its...
    • self
    • Thread
    • Replies: 8
    • Forum: GcMAF
  12. S

    GcMAF trial

    Hi Jenny, Im new to this group ,Ive had ME for 28 years. Im very interested in any GcMaf trials . I tried the link you supplied but it is not functional. Do you know anything about the trial in UK? or do you have any contact info for any of the trials you mentioned?