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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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  1. Carla-nl

    Histamine and Encephalomyelitis

    You know.... most of the long term patients got psyched at some stage by a new topic that came out there, had it investigated and then were dissapointed when they learned it didn't apply to them. It's very good to bring idea's to the board. And it's also a good thing to mention that even if...
  2. Carla-nl

    Histamine and Encephalomyelitis

    I do appreciate your statement, but i do not agree with you and i am not going to debate with you over this. Reason being, as i said before, that i have not updated my knowledge since 2010. Other reason is that i don't have time for elaborate online discussions. I just wanted to give people an...
  3. Carla-nl

    Histamine and Encephalomyelitis

    Hi Nanonug, forgive me if i have not updated my knowledge about systemic mastocytosis since i first investigated it in 2010. But, the conclusion of the research i did then is that if you have a mastcell disorder, the treatment for it should take care of all the symptoms after crisis has...
  4. Carla-nl

    Histamine and Encephalomyelitis

    I'll try Wave, At my sickest, i could only tolerate a few things. Everything made me sick. I did not even tolerate any vitamins or supplements. I reacted to everything. I weighed 8,5 stone (54 kg) and had great difficulty to maintain that weight, eventhough i ate a lot (of that i could...
  5. Carla-nl

    Histamine and Encephalomyelitis

    hi, butting in here.... I studied the topic of Systemic Mastocytosis ages ago and even got a referral to a specialist to get tested for it. I ended up there years later, test is now in progress. Saying that, i don't think ME is undiagnosed MCAS/SM but i believe MCAS/SM is PART of ME. I have...
  6. Carla-nl

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

    The anti histamine helps to modulate the inflammation without taking away the good parts. Brain fog is for me a result of infections. Wherever they may be. If that has not cleared up at all on the gc-maf something weird is happening.
  7. Carla-nl

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

    Hi Daffodil, have you tried an anti histamine for the diarhea? May sound odd, but it works often. Use clemastine (OTC) if you can. And yeah, i'd try to find a doctor. Gc-MAF is not an off the shelf product, it needs tailoring per individual and often it requires co-treatment with prescription...
  8. Carla-nl

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

    I think IRIS. Can you get your hands on anything anti viral (perhaps even Artusenate) and a proper anti histamine ? Do you have a (alternative) physician with you in this ? Some people are never able to tolerate a full dose but with co-treatment (anti viral, antibiotic, antihistamine) they do...
  9. Carla-nl

    GcMAF trial

    Belgium (i think) collects their samples and has the Nagalase test done via the Dutch branch of Health Diagnostics.... Possibly even sent through from there to New Jersey.... Going straight to Health Diagnostics in New Jersey should be easier and cheaper.
  10. Carla-nl

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

    Daffodil, are your results from last week back in yet? Did you also test for Kidney function ? Did you experience an increase in muscle weakness prior to the increasing lower back pain ? Carla
  11. Carla-nl

    GcMAF trial

    Hi Self, Jenny and all, BGLI has a 2-3 day delivery service to the US and they work with any physician that's interested in Gc-MAF. So that can be your GP, Family physician, integrative medicine physician, alternative practitioner, anything like that. Cheney has run a trial with their product...
  12. Carla-nl

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

    Hi Aquariusgirl, After i found out it worked, my family physician simply wrote the scripts as he did not know what else to do with me. I think any proper integrative medicine clinic would be willing to help out with this. Otherwise, contact BGLI, they have doctors working with their protocol...
  13. Carla-nl

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

    Is it possible for you to get your Calcium levels measured ? And, Calcitriol (1.25 Dihidroxy vitamin D) ? See, what happens is this; gc-maf normalises the bodies own vitamin D metabolism. If you supplement with either Vitamin D or calcium, your calcitriol levels might get too high, setting you...
  14. Carla-nl

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

    Daffodil, are you taking any calcium supplements ? (bear with me...) Carla
  15. Carla-nl

    Comment by 'Carla-nl' in 'GcMAF trial'

    Hi Moonwalker, I think the responders to David's product are those that also use other means Whether that be chemo, DCA, etc. The fact that it doesn't work for viruses to me is a very clear sign it won't work for anyone of us here, as viruses are our main burden. Yes, i know IV works...
    • Carla-nl
    • Blog entry comment
  16. Carla-nl

    Comment by 'Carla-nl' in 'GcMAF trial'

    Genetics does seem to be an issue, that's what Ruggiero found out. He's not working with patients i think (in the sense as Yamamoto's research was) but more technical, monitoring much more than just nagalase. From that he concluded there are some individuals who do not respond. That will be...
    • Carla-nl
    • Blog entry comment
  17. Carla-nl

    Comment by 'Carla-nl' in 'GcMAF trial'

    Ok, I'll try to translate this as even the Dutch is not origial. I think it came from Italian. The GcMAF from David Noakes does not work. In addition he has no medical staff or infectious disease specialist (eg HIV) on his team. CD4 cells dropped quickly when on this gcmaf Yammamoto's...
    • Carla-nl
    • Blog entry comment
  18. Carla-nl

    GcMAF trial

    No, he's not Leela. He indeed has some mental issues (yes, i've spoken with him). He has no respect for patients whichever illness they might have and is just doing this to make some money and to get his face on national TV with the miracle clure against cancer. CFS patients are of no interest...
  19. Carla-nl

    GcMAF trial

    No, he's not Leela. He indeed has some mental issues (yes, i've spoken with him). He has no respect for patients whichever illness they might have and is just doing this to make some money and to get his face on national TV with the miracle clure against cancer. CFS patients are of no interest...
  20. Carla-nl

    GcMAF trial

    to me it sounds more like this Noakes person has no idea what our illness entails. in addition, there are NO good reports what so ever from his product. HIV viral loads going up, cancers going awol. Dont think their product will be of any benefit to us. Have spoken to some patients who used it...
  21. Carla-nl

    GcMAF trial

    to me it sounds more like this Noakes person has no idea what our illness entails. in addition, there are NO good reports what so ever from his product. HIV viral loads going up, cancers going awol. Dont think their product will be of any benefit to us. Have spoken to some patients who used it...
  22. Carla-nl

    Video's of CFSAC oct.2009 are now uploaded, call for assistance with video's May 10th

    Dear all, The video's of the CFSAC meeting 2009 have now all been uploaded onto www.youtube.com/cfsacvideos If you feel anything is missing, please contact Diagnose Support. Please note that this channel will hold all CFSAC video's in future and will be managed by patient organisations...
  23. Carla-nl

    Scandal in BMJ's XMRV/CFS Research

    Hi Parvo, i'm unable to do this myself on short term, but i've sent out the message to people who speak the language. It might be someone else who reports back on this. I think your dog looks great : ) I didn't understand the connection with a dogpicture next to the article when i read it...
  24. Carla-nl

    Scandal in BMJ's XMRV/CFS Research

    This thread made it to the Dutch press I'm in serious AWE http://nujij127.betafase.nl/beerput-nijmeegs-onderzoek-xrmv-bij-me-cvs.8207866.lynkx Carla PS, the preliminary translation (improvements welcome) “An American patient opens a Can of Worms from Nijmegen” The Nijmegen...
  25. Carla-nl

    Who found XMRV in Japan

    bugger... i found it cited in 2 other publications, which for me is enough for now. i went ahead and published it naming the researchers as a source. will try to set up the translation over the weekend to make it more widely available :Retro biggrin: THanks ukxmrv, Carla
  26. Carla-nl

    Who found XMRV in Japan

    It would certainly help if there was a link to the publication. Since UKxmrv was able to retrieve the contents, would you also be able to inform if there's a link? I'd like to publish this on the site and add it to the newslinks we send out to press. Thanks, Carla
  27. Carla-nl

    Article: Third Time Is Not the Charm - Dutch XMRV Study Comes Up Negative

    can't figure out how to make paragraphs ! Oh Cort, for Pete's sake.... You know who Jos van der Meer and Blijenburg are.... For your information, Van der Meer posted in the Dutch News paper NRC back in October that he didn't have much respect for the WPI study and that he was 'going to...
  28. Carla-nl

    Dr. Reeves Removed from the CDC's CFS Research Program

    Hi all, i'm still smiling :d We have some translations coming in (of the CFIDS announcement) at www.diagnosesupport.com/translations Feel free to repost on National Forums / platforms. Thanks to all who contribute to our translations ! Carla
  29. Carla-nl

    NL: a twist in acnowledging M.E or C.F.S. (?) as a chronic illness & Canadian C. NL

    On a day with such good news (Reeves exit and Clara Valverdes book coming out) I am sorry to have to report a less positive issue. Last week, very enthusiastic, I posted the information regarding the State Secretarys decision to recommend M.E./C.F.S. as a chronic illness in the next...
  30. Carla-nl

    Article: Dr. Reeves Out at the CDC

    Translations CFIDS article ur fast ! i'll see if i can get a translation up today. Let's hope this is another major step for us EDIT: translations are coming in, for future easy reference, the full url: http://www.diagnosesupport.com/translations Feel free to copy/paste onto...