• 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.

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Search results

  1. S

    I was cured with GCMAF

    I lost the website to order gcmaf at saisei mirai and I want to make sure its the right website??
  2. S

    Ptosis/drooping brow.

    I had something similar and it was herpes zoster (shingles) which is dangerous on your face please go to doctor asap and get Valtrex. You will have permanent nerve damage if you don't go to doctor within 72 hours and if it goes in your eye, you can lose your vision.
  3. S

    Light on ME/CFS III: A Different Herpes Virus for CFS? - Varicella-Zoster, Shingles and ME/CFS

    Where did you go to get your valcyte and IVIG...I live in Virginia?? message for Learner!
  4. S

    Brain Damage?

    where did you buy the alpha lipoic acid + acetil I cartinine….did you buy it from GMC store I have a lot of brain tingling and stinging??
  5. S

    IVIG and Working

    I live in Virginia by the way??
  6. S

    IVIG and Working

    I saw where you responded to pins and needles all over even in brain...I am having Lupus symptoms now like rash on face, rashes on legs, cant take sun, getting full fast when eating, nausea at times, cant take the heat, insomnia headaches. You responded to some about pins and needles is herpes...
  7. S

    Light on ME/CFS III: A Different Herpes Virus for CFS? - Varicella-Zoster, Shingles and ME/CFS

    I think I have vsv in the spinal cord because my brain is on fire tingling stinging and back of neck is stiff and stinging too. Please help what would help???
  8. S

    Doctors Prescribing Valcyte?

    Thank you so much for info
  9. S

    Doctors Prescribing Valcyte?

    Do you know of any doctors that provide valctye that are closer to virginia beach virginia area???? I was going to dr lerner until my mom got sick. Mom has passed and now dr lerner has too???
  10. S

    cost of gcmaf

    Has anyone picked up gcmaf in reno nevada if so how much is it....???
  11. S

    The Slightest Touch HURTS

    I have pins, needles and stinging all over my body plus skin is raw.....extremely painful any suggestions for help...cant keep living like this. Wish it were just my feet!!!
  12. S

    My Prof De Meirleir patient experience...

    ok Thanks for the reply!
  13. S

    My Prof De Meirleir patient experience...

    What is habitual treatment? Dr De Meirleir says I have to do the treatment?
  14. S

    In Belgium to see KDM

    Wow, I guess i worry because I had breast cancer in 2000! Thanks for the info!
  15. S

    In Belgium to see KDM

    Does the test for IL-1betaS mean you could have cancer...mine is 5 range is 0,00 - 3,00 pg/ml Can someone explain this test to me???
  16. S

    Comment by 'scarlet56' in 'KDM in September'

    I just went to kdm.. how do u like his treatment so far
  17. S

    new type of muscle spasms

    I too am experiencing muscles spasms all over.....pulling and tighting and it moves around...unable to sleep...it started when I accidently took two Hydrocodone apap 10-500 by mistake...thought I was taking famvir. But also I have just came off of Kelfex for a uti...maybe that caused...
  18. S

    Comment by 'scarlet56' in 'Which treatment works better??? Gcmaf or Valcyte Please give me your opinion please???'

    Thanks for your response....yes my cmv is very high....I forgot to add that to my conditions??? My hhv6 is not that high yet?? CMV is 168
  19. S

    scarlet56

    • scarlet56
    • Blog
    • Blog entries: 1
  20. S

    Which treatment works better??? Gcmaf or Valcyte Please give me your opinion please???

    I am considering one of these treatments.....please help....Valcyte or Gcmaf from Dr Kenny Del Meir??? I am extremely sensitive to everything...have alot of pain?? I have had beast cancer, shingles which was due to the ME...have hsv, hhv6, hp pylori, and ebv??? Any advice would help....I...
  21. S

    Mold Illness Physicians

    Hello Slayadragon....would you happen to know which one might take insurance....I contacted Shoemaker and he does not...he is very expensive!
  22. S

    Breathing issues with Mold exposure

    Thanks for the info....I will never clean anything with mold on it again...because today I went to help the lady groom my dog because is the dog is older and scared....I almost pasted out and sweating from the dog hair....never had the problem before getting exposed to the mold....I want to find...
  23. S

    Breathing issues with Mold exposure

    Has anyone experienced severe breathing problems along with pain and tightness of the chest? I cleaned a shed wearing gloves, goggles and a mask, but everysince I have suffered? Any treatment or help in this matter would be appreciated??? I am going to a pulmonary doctor soon, wish me luck??
  24. S

    Detection of Mycotoxins in Patients with CFS

    Hello Slayadragon: I was told you know alot about being exposed to mold with cfs...I was working on my shed the last couple of weeks and got exposed and have had terrible pins and needles and headaches for week or so...what can I do to get back where I was??