1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

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

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

  1. Rrrr

    Rrrr Senior Member

    Messages:
    1,402
    Likes:
    271
    many of us ME/CFS patients are on hydroxocobalamin, injectable, subcutaneous. ME/CFS doctors have been prescribing this for a long time now.

    KDM has many of his patients on 10,000 mcg 3x per week. i'm on less. recently i crashed, and stopped my b12 injections, just in case the high doses were contributing to too much detox and adding to my crash.

    over the years i have found that b12 shots give me more energy and stamina, but i personally have not found them helpful with brain fog. i do find B complex pills help me with irritability.

    i do not take magnesium, except a 250 mg pill at night, to help with sleep. i tried weekly magnesium shots many years ago. painful! and they did not help with any of my symptoms.
     
  2. vli

    vli

    Messages:
    2,052
    Likes:
    2,172
    CA


    I just had a phone consult with KDM a few hrs ago. I just wanted to say that I asked him the simple question: "Can GcMAF reactivate viruses?" and he said NO. Very clearly. Now I'm not saying I don't believe what Joey's contact told him but this is the most up-to-date answer I have got to the question, and I wasn't hoping for the answer to turn out either way, so I don't know what to think. BUT, the interesting thing is even though he affirmed that gcmaf does not reactivate viruses, he then said that if a nagalase test showed someone's level to be sufficiently low he WOULD prescribe valcyte! So the "result" is the same as Joey's contact.
     
  3. Leonora

    Leonora

    Messages:
    32
    Likes:
    0
    Norway
    Hi you all! I am new to this forum, but have been following this thread somewhat. I have also filled out my data on the spreadsheet now. I have been in KDMs treatment for about 1 1/2 years. I was also on Gcmaf last 4 1/2 months of 2010 and unfortunately experienced a huge relapse and got sicker than I've ever been.
    I think I might be Joey's contact that you are referring to, Vli. My C4a was normal prior to Gcmaf, it spiked extremely on Gcmaf and is still very high (6000). Six months after stopping it still hasn't gone down. I have also gotten a really bad colonic inflammation from Gcmaf which has not subsided. It was on the basis of this that KDM said HHV6 might be reactivated. There is no other obvious reason why this inflammation has gotten so bad and won't get better. To my understanding, HHV6 and in particular HHV7 can be found in the intestines (gut lining) and thrive on inflammation. However, I guess it's difficult to get "proof" that this is really what is going going on. I think I am an extreme case though, when it comes to experiencing side effects. I was one of the first patients on Gcmaf, and now KDM seems to be more cautious when it comes to dosage and frequency of the shots. He also told me that they now treat HHV before starting with Gcmaf injections.
     
  4. vli

    vli

    Messages:
    2,052
    Likes:
    2,172
    CA
    Hi Leonora, thanks a lot. Your explanation helped a lot. I guess the keyword in your post is "MIGHT" (be reactivated), so strictly speaking KDM didn't say two opposite things because he might've changed his mind on this issue in the months since... it's also extremely interesting that you got such a huge relapse from Gcmaf (sorry about that), I don't think i've heard of anyone who's suffered so dramatically and I personally actually did pretty well in the first four months of treatment...

    When you say that he told you he now treats HHV before starting patients on gcmaf, do you know if he means using valcyte? Are you currently on valcyte, and if so how are you finding it?
     
  5. Leonora

    Leonora

    Messages:
    32
    Likes:
    0
    Norway
    Hi Vli! Regarding HHV6 possibly being reactivated, he said that 2-3 weeks ago. So I don't think he would have changed his mind since then. I am not on Valcyte, but KDM talked about starting with this medication during the last consultation. I haven't received the new treatment plan yet, so I don't know if Valcyte will be on the plan. If it is, I will have to do a lot of considering, as I am very ambivalent when it comes to starting any new "heavy" treatment at the moment. Right now I am far from how I felt a year back...It's actually really sad, but I try as best as I can to stay positive about it. Unfortunately I don't know whether it's Valcyte he uses on HHV patients before Gcmaf... My Nagalase result is also ready, but haven't received the result yet - do you know what KDM means by sufficiently low and why this is important when starting Valcyte?
     
  6. vli

    vli

    Messages:
    2,052
    Likes:
    2,172
    CA
    Then why did he tell me today that gcmaf doesn't reactivate viruses??! *the mind boggles*

    He didn't explain to me why nagalase had to be low before starting valcyte, and I don't know what "low" is to him either. :S
     
  7. Spring

    Spring Senior Member

    Messages:
    133
    Likes:
    88
    Netherlands
    Hi Leonora,

    Welcome here and thank you for explaining some things. I saw your input on the Gc Maf sheet and worried about you and the treatment. I hope you will continue to post here because we can learn a lot from each other. I had allready high C4a before Gc Maf, but no HHV or other proven infections. Now I'm on a 5 week break after 8 shots because of severe fatique. I will know my nagalase this week.
    Hope you will improve very soon!

    Best regards,
    Spring
     
  8. Leonora

    Leonora

    Messages:
    32
    Likes:
    0
    Norway
    Hi Spring :) Thanks for welcoming me. Yes, I will try to keep you guys posted...May I come with a suggestion? Maybe the spreadsheet should also contain value of PrPc (prion functioning test) ? Mine is extremely low and KDM seems to think that's one of the reasons why I've gotten so ill...
    Vli, I don't know why he would say that - maybe I am just an exception (?) He doesn't think that XMRV has been reactivated though...
     
  9. Spring

    Spring Senior Member

    Messages:
    133
    Likes:
    88
    Netherlands
    Hi Leonora,

    You could ask Mojoey (in a private message) to add PrPc because he made the sheet. I asked him to add Nagalase.

    Bye
     
  10. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    60
  11. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    60
    I hope someone can get him to elaborate on what he means by nagalase being sufficiently low before going on valcyte...I would've thought it had to be sufficiently high, since herpes is suspected of inducing nagalase as well.
     
  12. Leonora

    Leonora

    Messages:
    32
    Likes:
    0
    Norway
    Thanks Joey!
    Maybe you can add that reference is 10-100 ;)
     
  13. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    60
    will do. what's the unit? I'm anal about symmetry with the rest of the spreadsheet :)
     
  14. Leonora

    Leonora

    Messages:
    32
    Likes:
    0
    Norway
    I'm glad you are Joey :D The unit is index (10-100 index)
     
  15. froufox

    froufox Senior Member

    Messages:
    398
    Likes:
    66
    Hi Leonora

    Welcome from me too and I'm really sorry to hear that you had such a severe negative reaction to the GcMAF, and that you're still suffering the effects of the inflammation, it must have been very demoralising to go downhill so much. GcMAF seems to be very very potent at least for some of us...I also had a massive increase in inflammation since being on GcMAF, though that was more or less from the very beginning in my case. So i can only tolerate taking it every fortnight or less, at the lowest dose. I dont know if any of my markers increased, but id be surprised if they hadnt. My C4A was already pretty high before i even started on GcMAF, so i dont know if that was a factor.

    I was curious about the dosage u were on and also the frequency of the injections? I hope that u get some answers soon and lots of luck with whatever treatment u try next.

    Thats interesting what KDM said about the PrPc...i did wonder that aswell as mine was low too (4.8), but i know Sergio had a very low result too, worse than mine if i recall right, but he seemed to respond better than me to GcMAF so i dont know if that makes any difference. Also i know that others have had more normal results but have responded worse. But i guess there might be multiple factors at play here.

    Just one final thing, does anyone know if RedLabs send test kits out for nagalase and if they do, does the sample have to be shipped frozen, or not?

    Thanks.

     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,299
    Likes:
    6,369
    Albuquerque
    They give a reference range, but no units. I guess because it is a "functional" test.

    Sushi
     
  17. vli

    vli

    Messages:
    2,052
    Likes:
    2,172
    CA
    Joey,

    I know how completely wrong this sounds, when I got off the phone that's what I thought too--that since I have HHV6 my nagalase would be high, right? but I looked at the notes I made and I'd scribbled, "nagalase down 1st, then valcyte", but I admit even now it makes no sense to me. I was too frazzled in the midst of the call to think about what he said let alone challenge him, and I only had 10 min (having been accused by him of being late when I wasn't). So I'll try to find out about this again when i see him but it won't be far off--a month's time.
     
  18. Leonora

    Leonora

    Messages:
    32
    Likes:
    0
    Norway
    Hi Froufox!

    Thanks :) I started out with 100 nanograms as IV for the first 5 times, after that I continued with IM for another 16 injections. Same dose each week. I also reacted strongly from the very beginning, but I was told that this was normal and because I'm a high responder in both genotypes. From what I know now the reaction actually depends on a mix of your genetic make up, PrPc test and number/type of co-infections. In my case the Gcmaf also opened the calcium channels which gives an array of very uncomfortable symptoms, and when the PrPc test is low the calcium channels don't get closed. There are too many misfolded proteins in the body which is due too a high copper level. I actually know several patients where the value is a lot lower than yours (0,5-4). The PrPc test is also very sensitive and can show a result that is too low if it has been transported and analyzed some days later.
    Apparently, it's difficult to know the correct Gcmaf dose on beforehand, but I know that KDM is more cautious when PrPc is low. . It's like with the heart medication digitalis - the medication needs to be administered in a certain amount - either too little or too much is wrong.
     
  19. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    60
    No prob Vli! Thanks for goin out of your way to post about your phone consult since so many of us have been wondering about the reactivation issue with suspense. Any little bit is helpful as KDM doesn't seem to take kindly to too many questions.

     
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,299
    Likes:
    6,369
    Albuquerque
    Hi Leonora,

    Again, nice to meet you here...but sorry you have had such problems. I was very interested in what you said about the intermix of elements that can effect your response to GcMAF.

    KDM also told me to avoid any copper supplementation and talked about the calcium channels even before my test results were in. I am (according to RedLabs) a medium to low responder but my PrPc was in the low normal range (12.11). I started GcMAF at 50 ng IV then after a few weeks tried 100 ng but that was too much and I went back down to 50. At my last appointment KDM told me to stay at 50.

    I have not had problems with inflammation (perhaps because I also take LDN and curcumin?), and perhaps because my PrPc was in the normal range I have had fewer problems with GcMAF (actually, I have had very few, other than feeling achy and totally drained around the time the macrophages might be peaking. This meant one or two days a week where I needed to stay lying down). I did, however feel a marked response (that something very different was happening in my body) from the first week and that has continued.

    As far as co-infections, I had high titers of reactivated EBV, am positive for C. Pneumonia (not very high titers), and I don't know about hhv-6--I tested negative on antibodies but that does not seem to be a very reliable test. My nagalase test was done when it was still experimental and didn't yield results.

    As I am in the States, I won't see KDM face-to-face soon, but I will make a phone appointment and I will continue to email him when I have questions about my treatment.

    My symptoms seem to be exacerbated more by the B12 and nexavir injections rather than the GcMAF and these symptoms subside if I space out my injections and lower the dose.

    This is very complex indeed! But we did "sign-up" knowing we were guinea pigs and some of the first to try GcMAF.

    Best wishes and please keep in touch here. I really hope you get better soon.

    Sushi
     

See more popular forum discussions.

Share This Page