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

Discussion in 'GcMAF' started by Sushi, Jun 30, 2010.

  1. Lou

    Lou Senior Member

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    Hi Rivka,

    If this is needed for chart I am not on nexivir, but have taken artenuate previously and starting up with it again.

    Thanks for all you add to this thread.

    Lou
  2. August59

    August59 Daughters High School Graduation

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    Might naglase not be elevated with xmrv since it typically has very low copy numbers? I could be looking at this the wrong way too, but I did actually have a thought pop into my head today for change. Thanks
  3. Tony

    Tony Still working on it all..

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    Hi Rivka, No, I'm not on GcMAF. I'm awaiting results of xmrv/mlv testing which I'll post on my thread when I know...:)
  4. Mark

    Mark Acting CEO

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    AHCY-01 variance is probably due to ethnicity of population studied

    For anyone following the GcMAF threads, I've created a new thread specifically for analysis of the data in the spreadsheet of the genetic testing:

    http://forums.aboutmecfs.org/showthread.php?9702

    I'm afraid that my analysis in the last day or so has uncovered a serious flaw in that data, which rather undermines the strength of the whole dataset. What I've found is that the variation found in the AHCY-01 gene is explained by ethnic variance, as shown by the datasets at the bottom of this page:

    http://www.ncbi.nlm.nih.gov/SNP/snp_retrieve.cgi?subsnp_id=ss48292451

    Very disappointed that this is the result of my investigations - I was hoping to find something much more positive - but it is what it is...I think the data are so clear that I don't see how I can be wrong about this, much as I'd like to be...
  5. tormenta

    tormenta

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    Gcmaf this working very well for my.

    I believe that there is to have hopes in gcmaf, although some patients express not to feel changes, at the moment it seems the best option of treatment and perhaps the improvement comes a little ahead but.

    some indirect effect and possible reactions of the organism

  6. tormenta

    tormenta

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    I also undergo some indirect effect the 24-36 first hours after the injection, like metallic flavor in the mouth, small headache, a slight fatigue and a little febricula, but the days 3, 4, 5 and 6 after the injection are wonderful for my, every time a little better, have many positive sensations, better mental capacity, are but positive, not migraas, non nocturnal perspiration, I do not feel my heavy body, can go to gim and on the following day to realise aerobic exercise during 10-15 minutes and non experiment fatigue post exercise, has improved my pulmonary problems and my muscles have a normal sensation, I am scared of which the effect is fleeting, the disease I feel that it follows there, but Friday and past Saturday forgets that I am ill

    I have reduced the supplements to 50%, because they do a little agitation to me from gcmaf, I am not in still nexavir, I am taking an antibiotic also.

    I hope more people have improvement soon.
  7. Tony

    Tony Still working on it all..

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    Hi tormenta, thanks for letting us know you're improving. I hope you continue to tell your story here. We're very interested!

    Good luck with regaining more good health...:)
  8. citybug

    citybug Senior Member

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    Thanks Lou , garcia and everyone else answering questions. I'd like to know how the KDM patients take artesunate, swishing one pill 2 x a week, or swallowing or more?
    Is there any difference in his treatment if you have lyme, since gordon medical said half of their CFS/xmrv are positive for lyme? (is this by a wpi test?) Thanks,

    NY is not best for doctors since very restrictive on testing.
  9. leela

    leela Slow But Hopeful

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    Citibug,
    I was at the conference and did not write this down, but I believe Dr Gordon said that 50% of his Lyme patients were + for XMRV, not that half his CFS/XMRV patients were positive for Lyme. This was in response to Dr. Mikovits stating that they had found XMRV in 100% of the Lyme patients they tested.

    Edited for correction: In a comment by a GMA researcher over on Paula Carins' blog, there was this:
    "In the Gordon Medical Group, the statistic is not that we found 50% of our CFS and fibromyalgia patients were positive. What we found, so far, is that 50% of our XMRV positives also have Lyme disease.

    I will see if my voice recorder picked up that part of the talk--it was misbehaving.
  10. Lou

    Lou Senior Member

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    Hi all,

    Thanks Tormenta for the update and the good news. Personally, my last update was no response, but that I'd taken not even a full dose at the time. Okay, I think after the last injection, which was bumped up to 2/5 dose, I can confidently say something's going on. Still subtle--slightly more energy, maybe more bounce in my step, better attitude(more positive, friendlier), just feel a little better-- changes to date except for this one thing that happened today. It was not subtle, this hasn't happened since I got sick many years ago. I needed to pick up some paint at Sherwin Williams. I always call ahead, ask them to have it ready and bring to my car as the fumes inside paint stores give me instant and prolong brain fog.

    For some reason I just 'felt' that I could go inside the store today. I did and haven't had the slightest adverse effect. May not sound like much, but it was a HUGE sign to me. Maybe we ARE on to something!!

    Best,

    Lou
  11. RivkaRivka

    RivkaRivka Senior Member

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    UPDATED LIST (Jan 30, 2011)

    can we get a list of
    - who is now on GcMAF
    - level of severity of ME/CFS
    - length of time sick with ME/CFS
    - when they started GcMAF
    - their source of GcMAF
    - their VDR results
    - if they are having any good or bad effects from the GcMAF
    - NEW QUESTION: are you on Nexavir and Artesunate, too?

    if you send me the names, i'll keep adding them to this list. or you can cut and paste the list and add it yrself to yr own post.

    == Past ==
    Joey (Undisclosed source. No response from GcMFA, but it was only a limited trial of a pre-curser of GcMAF)

    == Now ==
    1. Cansado
    KDM, Fall 2010

    2. Overstressed
    Moderate ME/CFS. Ill 3 yrs. Started May 2010, FOK Low responder, BSM moderate to low responder. No signficant response to GcMAF.

    3. lili85
    Increasingly ill for 5-6 years, positive for XMRV & MLV related virus. KDM, started Nov 2010. VDR: FOK high responder, BSM moderate or low responder (Redlab). Good effects so far (9 weeks into the treatment).

    4. CindyWilliams
    Dr. Sharp, Nov 2010??

    5. Nabo
    Severe ME/CFS (only sitting and bedridden). Ill 2.5 yrs. Started GcMAF with KDM at end of Dec 2010. VDR results: Only know that i am high responder. No effects yet.

    6. Ronan
    KDM, Dec 2010

    7. Lou
    Sick 20+ yrs. Got GcMAF direct fr BGLI, thru his doctor. Started GcMAF and artesunate Jan 2011. No response yet.

    8. Garcia
    KMD, Jan 2011

    9. Froufox
    Ill for 18yrs, moderate/severe. Started GcMAF 11th Jan 2011. Source of GcMAF - KDM. VDR: FOK1 - moderate responder, BSM1 - Heterozygote. Effects so far - increased depression, lots of headaches, lethargy, light sensitivity, inflammation in sinuses. Possibly some mild good effects at times eg extra energy, less inflammation in head.

    10. Tormenta
    KDM. Started GcMAF on Jan 2011. FOK Low responder, BSM moderate to low responder (test done at redlab). Great response!

    11. Sergio: KDM, Jan 26, 2011

    12. Sushi: KDM, Jan 26, 2011

    13. Vli: KDM, Jan 26, 2011

    14. Fili: KDM, Jan 2011, VDR Moderate responder/High responder
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Sergio and I have started GcMAF.

    KDM gave us each a half dose (IV) in his clinic. We were given half doses just as a precaution against any adverse reaction. I don't think we had any except perhaps being a bit more tired--but we were so tired to begin with it was hard to tell.

    I had flown from the US two days before, Sergio from Spain. We visited the clinic 3 times in order to get tests done, pick up the GcMAF for travel etc. We flew to Spain with 12 vials each and made follow-up appointments for April when all our test results will be in.

    We will continue to get GcMAF (a full vial) once a week by IV while in Spain, and have blood tests for levels of Vit D and calcium--at first twice a month, then, if these are normal--monthly.

    I am still too tired to write more now, but will fill in more details when I have rested up a bit from the trip.

    According to the nurse at the clinic it is OK to let the GcMAF thaw briefly and then to refreeze it. Of course this isn't the optimal storage strategy, but he said it could be done several times without the GcMAF losing potency.

    For those considering a trip to Brussels to see KDM, it was hard, very hard, energy -wise, but doable if you are at the functional level of being able to "go out" a couple of times a week. We had to push past our limits (and are paying for it now), but it can be done. We managed it, but it wasn't easy.

    We did learn a good bit we didn't know and we'll share it later.

    But we are GcMAFed! :Retro smile:

    Sushi
  13. richvank

    richvank Senior Member

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    Hi, Sushi.

    Bravo to you and Sergio! You made it! I think we'll all be very interested to hear how it goes for both of you. In meantime, I hope you will be able to get rested soon.

    Best regards,

    Rich
  14. vli

    vli

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    I just came back from Belgium as well, having seen KDM on the same 2 days he saw Sergio and sushi. Sushi, since we're all tired I hope you don't mind me simply copying your email and changing where your experience differed for me and writing the differences in red!

    This was my experience adapted from Sushi's report:

    "Sergio and I have started GcMAF. So have I.

    KDM gave us each a half dose (IV) in his clinic. We were given half doses just as a precaution against any adverse reaction. I don't think we had any except perhaps being a bit more tired--but we were so tired to begin with it was hard to tell.I was a bit more tired too a coupla hours after the injection, felt a bit of OI but that could just be OI I experience now and then normally anyway. Otherwise I was "fine", also.

    I had flown from the US two days before, Sergio from Spain. I had taken the Eurostar from London to Brussels Midi station.We visited the clinic 3 times in order to get tests done, pick up the GcMAF for travel etc. I also ended up going to the clinic 3 times but sadly only saw sushi and Sergio on 2 of those as I picked up my gcmaf on the day i travelled, not the day before.We flew to Spain with 12 vials each and made follow-up appointments for April when all our test results will be in.I took the train back to London and now have 40 vials of gcmaf and 20 vials of nexavir--super pricey, total was 4400 E. But I'm in a slightly diff situation from sushi and Sergio in that i may not come back to Europe again in 7 months, so unless you live in Asia i wouldn't expect to get as many vials from him as I did.

    We will continue to get GcMAF (a full vial) once a week by IV while in Spain, and have blood tests for levels of Vit D and calcium--at first twice a month, then, if these are normal--monthly.I'll also be doing the exact thing Sushi's just described they'll do :)

    I am still too tired to write more now, but will fill in more details when I have rested up a bit from the trip.same!

    According to the nurse at the clinic it is OK to let the GcMAF thaw briefly and then to refreeze it. Of course this isn't the optimal storage strategy, but he said it could be done several times without the GcMAF losing potency.I'm not sure in what context sushi was told that, but when i asked him the nurse just told me to store it all in the freezer.

    For those considering a trip to Brussels to see KDM, it was hard, very hard, energy -wise, but doable if you are at the functional level of being able to "go out" a couple of times a week. We had to push past our limits (and are paying for it now), but it can be done. We managed it, but it wasn't easy.Totally agree w sushi here--I couldn't have said it better except she had even less support as I'd at least had a brother and parents with me. Thank God for anyone in say the UK or Spain as I think all follow-ups can be day trips which I think are MUCH easier (and cheaper, FAR FAR cheaper, thank God).

    We did learn a good bit we didn't know and we'll share it later.I don't know what sushi means here, but i'm wondering if it's something she told me immediately after she came out of her appointment :)

    But we are GcMAFed! So for Rivka's list me, vli, can also be updated to now being on gcmaf :)

    Sushi vli (i'm gonna check w you but if you don't like the way I used your post to reply sushi i'll take it down!
  15. richvank

    richvank Senior Member

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    Hi, vli.

    Ditto to you! Glad you made it, hope you can recuperate soon, and will look forward to hearing how it goes for you. You "pioneers" are so valuable to the CFS community!

    Best regards,

    Rich
  16. undcvr

    undcvr Senior Member

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    Glad all you guys got back and things went well from the travel part at least. Rest well and please keep us posted on your experieces. Hoping this works out for you guys, Im sure everyone else here feels the same way too and are rooting for you.

    Congrats on finally getting your hands on the GcMAF.
  17. RivkaRivka

    RivkaRivka Senior Member

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    very exciting! thanks for those updates.

    how are the "old timers" doing lately? the folks who started GcMAF last month? lou, ronan, others?
  18. filfla4

    filfla4 Senior Member

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    Hi,

    Like Sushi, Sergio and Vli, I too had my appointment with KDM this week. I had my first shot of GcMAF yesterday!! I am feeling extremely exhausted but I don't think I can put that down to just the GcMAF. Travelling here has been very tiring, as well as going back and forth from the clinic. Thankfully I travel back home this evening. The supply of GcMAF (12 vials), ie one per week for three months, was frozen when it was handed to me. I was told that it is fine at ambient temperature for 72hrs but should be frozen when I get home. It should be defrosted for 1hr prior to being injected. I will also be getting it by I.V.

    I also got my first shot of Nexavir (2cc) yesterday, as well as a shot of Hydroxycobalamin (10mg), both intramuscularly. I will be having the Nexavir daily and need to learn how to self-inject and the Hydr... twice a week, GcMAF once a week.

    In his report, KDM said that amongst other things I have a chronic inflammatory disorder. When I met him, he told me that only 20% of ME patients have this. I am also being treated with antibiotics, probiotics, and a list of 5 other meds/supplements.

    Sushi/Sergio can you please tell me more about the interim testing, particularly the calcium? This wasn't mentioned to me. In fact he has prescribed Calciumcarbonate (500mg) to be taken in between meals and before bedtime. I think I should find out more about this. I had lunch with Cansanado, (and I know you met up with her too) and she also mentioned testing for Calcium levels.

    So you can add me to your list too Rivka!!!

    Best
    filfla4
  19. acer2000

    acer2000 Senior Member

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    Can you expand on this some more? What does "chronic inflammatory disorder" mean and how is it different than what other ME patients have? What are the markers and what are the implications?
  20. Alexia

    Alexia Senior Member

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    Thank you so much Sushi, Sergio, Vli and Filfla!! It's great that you could start taking GcMAF. We can all imagine how difficult and exhausting must be for you all. You are really courageous people!
    We will be anxious to know how you will be reacting. I hope you can rest now and soon get to the level of energy you had before this adventure.
    All the best!

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