• 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. R

    Is it safe to have a baby?

    Thanks for the replies... plenty of food for though. As usual with ME their is not clear cut path forward!
  2. R

    Is it safe to have a baby?

    Hi, I have been sick for nearly 17 years now. I had some good improvements over the last few years after some antibiotic treatments (after testing positive for Bartonella and suspected Lyme) but am gradually going downhill again now. I now test negative for Bartonella and Lyme. I met my...
  3. R

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

    I have been on GcMAF for over a year and a half now with moderate improvements. I recently got a Kidney and Liver function test and both were fine.
  4. R

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

    Hmmm, made a post earlier but dont see it! I was saying the stuff about the swollen Saliva glands was interesting as i have had swollen cheeks for a good while now. Always thought it was a fluid or muscle thing but after checking where the Saliva gland is it fits perfect. Anyone know what i...
  5. R

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

    Im doing fairly well on the GcMAF but still plenty of room for improvement. I just tested positive for Lyme this week so thats the next thing to start working on
  6. R

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

    Hi daffodil. Could it be possible that you have Lyme? KDM says that when people with Lyme take GcMAF that they can feel worse in the beginning because Lyme exists in Cysts and once on GcMAF you immune system starts attacking the Cysts and releasing more of the Lyme bacteria into your system...
  7. R

    Lyme and Post Exertional Malaise

    I'll have to ask my doc about it on my next visit and see if i should be tested for any other coinfections. I have been on GcMAF for a year and a half and he claims to be getting good results treating Lyme after patients have first got their Negalase levels into normal range before treating the...
  8. R

    Lyme and Post Exertional Malaise

    Interesting Ema. Thanks. I was tested for Bartonella and Borrellia but not Babesia and from that thread it seems Babesia cause PEM and is often a coinfection with Lyme.
  9. R

    Lyme and Post Exertional Malaise

    Hi, I have been sick for over 10 years now am have also been under the impression that it was ME. I have now just tested positive for Bartonella and my ME doctor says this is the probable root cause of all my problems. I am going to start treatment now for Lyme. I am cunfused about one...
  10. R

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

    Yep, still taking 50ng once per week. I tried doing full dose again about a month ago but i was getting a bit of a runny nose so thought if was probably a bit too much inflammation being caused. I seem to be doing a bit better on the lower dose now.
  11. R

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

    Good news Sushi... nearly in range now. I am expecting a new result back as well but it will probably be another few weeks yet. On a side note, i just started Caprystatin yesterday and have major head fog today. Could this be Candida die off? I have been feeling a bit better over the last...
  12. R

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

    GcMAF is a long process with various ups and downs. I would try not to think about it on a day to day basis as you are just causing yourself stress and anxiety which wont help the situation. Just take it and try and forget about it as much as possible and maybe have a review once a month. All...
  13. R

    Dr. success using higher doses of GCMAF

    I have to agree, i havent seen anyone with a complete recovery on GcMAF yet... although i have heard anecdotally about some who have. I'm on it for about a year and a half and have had about 30% improvement which is great but i dont expect this treatment to give me the full recovery...
  14. R

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

    I bumped up my GcMAF dose to the full 1ng again a couple of weeks ago and have noticed an inflammatory response from doing this. Worse this week. I will be reducing the dose again next week. I was wondering though, i know a big inflammatory response is bad but is it not a good thing when you...
  15. R

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

    Interesting! Doesn't surprise me though. He was continually posting outlandish claims with no data to back it up after repeated requests from some members. It such a shame that people try to take advantage of vulnerable people like this who are desperately trying to figure out the best course...
  16. R

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

    As far as i know it can be refrozen a good few times without any loss of potency. Although maybe that source is different to mine?
  17. R

    Candida Treatment

    Thanks Sushi, i'll ask KDM about it on my next visit.
  18. R

    Candida Treatment

    I was thinking about trying to sort out my long standing Candida problem again but was wondering if their is even a point when sick with ME? I have tried to treat it in the past with diet and Nystatin with very limited success and within a couple of weeks its back to square one anyway. This...
  19. R

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

    Just the same, the last 4/5 years the Colds have been rampent so I don't think it's anything to do with GcMAF. Although I did have a 6 weeks thing before Xmas that at the time I thought was a cold that wouldn't go away but looking back now it was probably an inflammatory response. It was never...
  20. R

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

    So I have another cold... sigh. Colds are literally dominating my entire life, if I don't have one I'm terrified of getting one. This time of year I have a cold every 2-3 weeks, and when I say a Cold is usually it involves 3-4 days in bed feeling terrible and then another week after to get rid...
  21. R

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

    No need to apologise Daffodil, I totally understand your scepticism and anxiousness :) Nabo, I'm sorry to hear what your dealing with. Is it possibly a herx reaction or a coinfection your immune system is now dealing with.... or just a bad reaction in general?
  22. R

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

    It took me many months to start to notice improvements. It's been very gradual over a year so it's even hard to notice improvements from month to month but when I compare how am now to before I started I see a difference. Saying that, my Neglase is still well above normal range and it's only...
  23. R

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

    I got mild side effects for the first month or two. Nothing very bad, just a dull headache on the 3rd and 4th days after injection. I took it as a good sign... at least it was having an effect on my body! I'm doing better on the GcMAF by the way too. A year in I am getting out a lot more...
  24. R

    Tai Chi

    Hmmm, doesn't sound too promising. I might look into Yoga instead. I tried Yoga before with poor results, maybe another go starting off slower than last time.
  25. R

    Tai Chi

    Anyone tried out Tai Chi? I've heard its a very slow moving technique without too much movement so thought it might be worth a go. My only worry is an hour long class would be too much for me probably. If anyone on here has given it a go I'd love to hear how you got on with it
  26. R

    Does anyone else feel revolting after a shower?

    I started a thread on this subject a while back too. Showers are my biggest problem after exercise but I can avoid the exercise. I take a cool shower in the evening time once a week and feel good straight after it but a few hours later I'm all pale, fuzzy head and body temperature rises and I...
  27. R

    Super 8

    Hi, I was on VSL for a good while but didn't think it was doing much for me so I have recently started Super 8. Since starting the Super 8 I have been getting loads of flatulence. Does anyone know if this is a good or a bad thing? Thanks!
  28. R

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

    Hi Daff, just to add to my recent post about my GcMaf response that I have been unwell for 10 years now.
  29. R

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

    I'm on it about a year now and have had some success. A lot more active now than I used to be, still get bad spells but they are not nearly as long now. I had to come of the GcMaf for a bit because of an inflamatory response and I went downhill quickly afterwards but improved again when I went...
  30. R

    Success! from GCMAF, and New Videos from Doctor Bell, Enlander and Peterson!

    Here's an interesting quote in relation to duration of illness and expected response: With a small study and only 15 patients in each group is too little data to say anything certain about the duration of the disease in relation to response. We'll look at in the new studies.