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

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Search results

  1. Shoesies

    Experiences with Homeo KMAF?

    So Sushi? Is your nagalase near normal yet? I am 10-11 months in an take a full gcmaf.eu dose weekly. I am better, I function at maybe 65-75% of what normal once was. My doctor just did new nagalase test wants me to top shots until it comes back. I have a little inflammation coming back - not...
  2. Shoesies

    GCMAF Questions

    Hi all. Things continuing to progress well on GcMAF with the other herbals, supplements and probiotics/diet. I have energy, lots of it. So much in fact, I must stop myself from doing things. Going back in the studio soon and live sets start again in the next few weeks. I hope you are all having...
  3. Shoesies

    How do you personally deal/cope with nausea? More mentally rather than physically...

    Ay yi yi...every single day I deal with it. Gets better after 2pm. We have checked everything and tried everything. So far nothing helps. I just feel it until I puke enough to start feeling better. Keep pushing fluids and if I throw up my meal I eat again. Ugh. ETA - I have been dealing with...
  4. Shoesies

    GCMAF Questions

    Vit D 1,25 was off the charts on initial testing. It has come down as inflammation has reduced. I am still progressing. Scheduled for surgery this week. Sinus infection +six months...so we are dealing with it. I pray no relapse. Thanks for the response. My next months GcMAF is coming from...
  5. Shoesies

    Nuvigil (Armodafilnil) - anyone taking? experiences?

    Well when I cannot get the stimulants I need to function in relapse, I tried Ma Huang. Ephedra. Works ok. A little shaky, but energy and still ate and slept.
  6. Shoesies

    GCMAF Questions

    IDK but he and the other drs think they know it all. Pushing exercise and they are nuts.
  7. Shoesies

    GCMAF Questions

    Well I haven't been around lately for an update but yours will be interesting to see. Still on GcMAF. Seriously considering titrating myself and buying from GcMAF.eu Dr. Bradtsreet is too expensive. I have had some progress in the last three-four months of treatment. My stamina has increased. I...
  8. Shoesies

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

    Well, I woke up with a total sense of well being and without pain or inflammation in my body for the first moments in at least six months. I was so grateful that I just soaked in the experience and enjoyed the early cool spring rain and stayed in the sheets for a few hours. Lasted four hours...
  9. Shoesies

    gcmaf conference in frankfurt

    I am interested in the tested GcMAF yogurt. I would love to see testing results. My GcMAF is getting terribly expensive the more we increase it and I am looking at alternatives.
  10. Shoesies

    Ideas for rotating sleep meds

    heaps, good info. I have always thought that there could be adrenal issues due to some extreme adrenaline issues in childhood. Also, need to talk with Doc about not taking the metformin so late. Seems that might be causing the wakey-wakey with that article???
  11. Shoesies

    Anybody got problems with low body temperature?

    To answer, yes on the low body temp...for years. Yes to the low BP normal for 15 years 80/60. Cannot eat too much salt, CHF moderated by lasix daily. Have to take potassium because of lasix. See saw.
  12. Shoesies

    Borrelia – In the Lymelight

    Holy Toledo!
  13. Shoesies

    Ideas for rotating sleep meds

    seroquel, did not work. phenergan either. diphenhydramine, built up tolerance does not touch it, temazapam, nope, baclofen, have it - only helps for spasms not sleep, lyrica, nope. Will try researching the others and very thankful for the suggestions. I do believe I am a tough case with sleep...
  14. Shoesies

    Update on Alex3619: in hospital but doing well

    Hi Alex! Hoping you are giving those nurses hello and having a better day. Hurry up and get out of there, those places are dangerous!!
  15. Shoesies

    Ideas for rotating sleep meds

    GABA did not work. Glycine at ten times recommended dosage did not work (it did bulk muscles though). Ambien, nope. Amitriptyline, nope. Xanax, yep...stops working, detox hell...no mas. Any ideas? I need sleep!!!
  16. Shoesies

    Here is a real winner of a cardiologist...

    Oh ho SilverbladeTE..you are right! DH was less than sympathetic prior to his getting sick. He now has the same thing I do (or he did for a long time and just recently presented with the flu-like and cognitive symptoms). That thinking treatment was too expensive if not covered by...
  17. Shoesies

    Here is a real winner of a cardiologist...

    I would like to answer with a big fat kiss my A**.
  18. Shoesies

    Valley Fever in Western US

    http://news.yahoo.com/flu-valley-fever-increases-arizona-california-160350415.html
  19. Shoesies

    A Gift to All the Doctors who Patronized You?

    ...and it is like that in almost every developed country. It angers me greatly that willful ignorance is causing misery and even death to many. My cake would say "You SUCK".
  20. Shoesies

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

    I should have said "added faigue symptoms" I still have fatigue daily. I am only able to go to the store or doctor one daya week, then I am back down. I can now get up and cook a light meal for myself. Not often mind you, but that is still progress. The extra fatigue from the shot put me down...
  21. Shoesies

    Lyme Disease information bill to become law

    This sh*t is criminal! Do they want us all to die?????
  22. Shoesies

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

    Planniing on taking the benadryl this week before my shot. Good info, thanks!
  23. Shoesies

    KDM and sleep

    Minipress huh? I shall research. I just cannot handle anymore withdrawing like benzos. Perhaps some are more sensitive and have greater symptoms coming off. Me, color me Linda Blair when I stop that crap. UGH.
  24. Shoesies

    KDM and sleep

    Benzo's caused me HELL detox coming off...they do make me sleep but at what price? I think I puked for 4 months straight.
  25. Shoesies

    KDM and sleep

    heapsreal I understand the sleep issue and agree that something in intial infection screws the pooch for sleeping, Neurontin did nothing for me. Lyrica does not touch the sleep issue. I do have ambien...it will help me sleep 3-4 hours a night, I only use it after three nights of less than 3...
  26. Shoesies

    Quercetin's Effect on Mitochondial Production & Fatigue

    I actually have no certainty that quercetin has worked for me...my last relapse was so bad I threw everything and the kitchen sink at it. I am however, getting better. So, I plan to continue taking it. For what it is worth.
  27. Shoesies

    Experiences with Homeo KMAF?

    Sushi must have copied the wrong link They improve macrophage (white blood cell) activity making them up to ten times more effective in engulfing foreign matter. They enhance the macrophage's effectiveness in modulating the entire immune system. They enhance the macrophage's effectiveness to...
  28. Shoesies

    Are vaccines the cause of ME/CFS?

    Yes, we do not believe in mixing animal parts and humans. Many Jewish believers use the words of G-d to support this. We also do not believe in desecration of the body, so I will be buried in 24 hours without embalming. The religious exemption forms can be obtained online, you just need to look...
  29. Shoesies

    Experiences with Homeo KMAF?

    Found this about aloe and macrophage action. http://www.umm.edu/altmed/articles/aloe-000221.htm
  30. Shoesies

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

    IDK suzanne I am on 5ng and I have had some increase in stamina. I have a good day and a bad day so, will continue and see. The hubs is going on 20ng which is A TON. I know that he is 285lbs but man that is a lot. I think I am staying right here for a good while. My fatigue on shot day has...