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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. C

    Urinary Problems

    Hi Christalone, I experience the same: thinking you are finished but you need to go again a few minutes later. It drives me nuts. But with me it only happens around my menstruation and at night. Also very prone to UTI's. I take cranberry pills when I feel one coming up, and they help. Have...
  2. C

    Does anyone notice getting relief by going in the water?

    I am better in the water as well, especially the ocean without all its chemicals. Even the brainfog clears...I wish I had the ocean nearby. But like ukxmrv says can't move around too much or the PEM strikes..
  3. C

    Sun or heat makes you ill?

    I feel slightly better in heat. It is more comfortable. It can't be too hot!
  4. C

    Did KDM's treatment help you or did you get worse?

    Vojta, I also tested positive for those. Do you have any clue why GcMaf is not kicking in? I had 38 full doses shots without any results. I don't respond to medicine although there are a few antibiotics which made a little difference. Maybe it is the leaky gut? It is difficult situation for...
  5. C

    Did KDM's treatment help you or did you get worse?

    I did not get worse..I did not get better from the last treatment. It depends maybe what kind of symptoms you are suffering from. I dont have a lot of inflammation. I am not responding to a lot of medications so he is still missing something.
  6. C

    Informative video on the gut by De Meirleir

    Thanks for this informative video!
  7. C

    raw cannibis as anti-oxidant, anti-inflamatory, anti-cancer

    I believe in this. We (or I am) need to think out of the box in order to feel better. THis is the time. I tried cannabis oil for 3 weeks but in California they seem to have more sorts and different advanced methodes. Thanks for the post.
  8. C

    EECP Treatment is Very Helpful/My Daughter Helped Alot

    yes last time I was there I spoke to a lady who experienced good results. I am a little scared though since it is aerobic excercise lying down. PEM!! I have read that you tried it for only 2 times Nielk.
  9. C

    EECP Treatment is Very Helpful/My Daughter Helped Alot

    HI, I woulld like to bump up this message and hear about the status of these patients who succesfully tried the EECP treatment. On which basis does Dr. Enlander selects his patients for this treatment? Thanks for every bit of information!
  10. C

    App with KDM

    Helene, Don't worry about the Marshall Protocol I have been a KDM patient since 1999, and I have never heard about him perscribing the Marshall Protocol/HIV medicines until Athena mentioned it. I do know quite a number of his patients. He is focused on the gut, or actually focused on the whole...
  11. C

    App with KDM

    Regarding the Marshall Protocol: Did you have to eliminate exogenous sources of vitamin D both dietary and sunshine? Which ABX did he prescribe you? Which AVR's against XMRV did he prescribe all his patients? Please let me know. Thank you. C.
  12. C

    Probiotics Overview

    probiotics what I am wondering about is if I would take the lactobacillus strain would the other friendly strains also gain in volume? Otherwise I need to take quite a few strains and not all of them are favorable to my bowel..
  13. C

    Probiotics Overview

    probiotics Thanks for the vital information!!! I have just started with making my own yogurt from coconut/goatmilk with a yogurt starter which consists of LACTOBACILLUS BULGARICUS STREPTOCCUS THERMOPHILUS and LACTOBACILLUS CASEI. Sorry for the caps. Also started with a specific carb diet. Good...
  14. C

    Bladder/urinary symptoms!

    My symtoms do fit that diagnosis. Especially one week before my period I nearly always get feelings of a bladder infection and/or significant urgency as well. I often have bladder infections but I have them under control now with a cranberry supplement and a kalium supplement as well. Feeling...
  15. C

    CFS, PMS and Perimenopause

    I am like you Spitfire and all the others. Remember that you are not suffering alone if this is any consulation...... .
  16. C

    MAF 314 - All Natural GcMAF Plus Probiotics

    I agree with Lobba. Making the Maf ourselves.........making your own medicines and use a compound like that? That will do more harm than good. But voila something new.... I really like the probiotic idea but also there lots of us who are lactose intolerant or as I am, yogurt intolerant. But we...
  17. C

    CFS, PMS and Perimenopause

    That is the pill I am talking about. You get your period every 3 months. Seasonique. What do you do to get some relief? Meditation gives me relief in better dealing with the illness at that specific time.. But I do eat a lot of tylenol and that gets me into troubles as well.. The brainfog is...
  18. C

    Mesologist/mesology

    Here is a link in English... http://www.mesologen.nl/index.php?page=48&section=1
  19. C

    Successfull GcMAF Therapy

    Aquariusgirl, I had them tested about 6-8 weeks after the treatment and it was 1.8 Before I also had them tested however at that time the results were not accurate b/c of technical failure in the lab. So I have only one result unfortunately.
  20. C

    CFS, PMS and Perimenopause

    I suffer from PMS as well although you can't call it PMS I think.. Once my ovulation starts I feel extremely bad, and then during my menstruation I am an even bigger mess. I am not able to find anything against it for now. Only against my migraines I am on a low histamine diet and that seems to...
  21. C

    Mesologist/mesology

    Is this therapy available in the USA? In Europe it is well known and I think the aim of it is treating the whole person. I did hear some promising results using this therapy.. Thanks
  22. C

    Successfull GcMAF Therapy

    That is a great report, and I am glad for that patient and others who experience improvement. Just wanted to inform you that I was on GcMaf for 38 full doses and it didn't do anything to me. Nothing happened so I am back to square one. Maybe I do feel a little worse regarding the brainfog..
  23. C

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    How about adding Leaky Gut Syndrome (soluble CD14)? Because the GcMaf should get a grip on this as well. But it is kind of tricky because once you test 3x negative then it is officially gone according to KDM. C.
  24. C

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    According to the H2S Protea Biopharma sheet: There is negative of course Moderate positive (2-3) Strong positive (4-5)
  25. C

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Has anyone done the H2S test during or after the GcMaf treatment? Before mine was mild positive (2) and after it came back strong positive (4)
  26. C

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hello dear patients!! What thread this is. The power of sharing. Anyway since I lived in Brussels for a while and moved back to the US I have been a little out of touch...... But I am back... well sort of... First to refresh our minds, I am a KDM patient, and was interviewed by the...
  27. C

    GcMAF plus antivirals. A good idea?

    FYI: B12 has been taken off my protocol, and I KDM won't tell me exactly why. My H2S levels have gone up considerably so it probably has something to do with toxicity?
  28. C

    Nagalase levels

    Same here no Nagalase results before GcMaf. After 38 shots, and one month break I tested 1.8 for nagalase.
  29. C

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    After 38 shots, and a 10 week break my inflammatoir blood panel has increased.
  30. C

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hola! No plan whatsoever Sergio! I am very hopeful for you when reading your posts! All the best, C.