The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
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More info on GCMAF...

Discussion in 'GcMAF' started by SB_1108, Feb 4, 2015.

  1. SB_1108

    SB_1108 Senior Member

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    Recently, I’ve been researching GcMaf and its counterparts: MAF and GOleic and I’ve found very little information other than very promising statistics with little to no sources to back them up (quick example):

    https://www.gcmaf.eu/patient-resources/me-cfs/

    I see patients experiences on Phoenix Rising saying that they have improved but the GcMAF forum gets minimal traffic. I’ve even checked the autism forums but it just seems like the majority of the posts are from 2012… nothing recent.

    For some time, the major CFS doctors like Cheney, Enlander, and De Meirleir were working with GcMAF but now… I know that Cheney is no longer using GcMAF as a part of his treatment protocol but Enlander is (and I’m not sure about De Meirleir) - Anyone know why?

    If the improvement rates are so high why isn’t the forum more active?

    Its just so difficult to find information about this…
     
    Madison likes this.
  2. halcyon

    halcyon Senior Member

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    Agreed, it seems like almost nobody is talking about it anymore and I'd love to know why. My nagalase levels tested high so I'm interested in it.
     
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  3. JayS

    JayS Senior Member

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    I am a patient of Dr. Enlander. Been on his maf87 yogurt for 3+ years now. Most effective treatment I've had in 15+ years of this disease. Which of course is not to say it's for everybody, nor is it a miracle treatment that's allowed me to go back to work. But, it has made my life easier. Six weeks in, I started to notice my sleep was improving, and with the sleep dysfunction in ME that was something I'd never had. Klonopin can help one get to sleep, but I didn't find that it regulated it, and while that seems to generally work well in ME, I mostly have used it for insomnia. With the maf yogurt I was soon getting to sleep at a normal hour, and sleeping 6, 7, 8 hours straight, consistently. I've gone off it a few times, and when I get back on it, it's always at the six week mark that I start to feel the improvement. I've had this long enough that the typical advice one hears, which is that sleep is very, very important, becomes difficult to absorb. I probably tuned it out after awhile. Well, with no good options, what are we going to do. With this I saw how important it really is. Once I was sleeping better, I saw some increase in strength and stamina as well. Overall I'd say it added 10-15 to my Karnofsky score--again, not a miracle cure, but nothing to sneeze at, either. So, although everybody is different, and this should be taken on a case by case basis with expert medical advice, I can recommend at least looking into it based on my experience. Dr. Enlander does phone & skype consults. I don't think this is exactly the same as Cheney's yogurt, KDM's injectable, or the gcmaf.eu (which I saw got into some trouble), but whatever it is, it has definitely helped me.
     
  4. halcyon

    halcyon Senior Member

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    Thanks for the info Jay. Is this the same thing that Dr. Enlander sells on eBay, listed as MAF 878 starter? Do you use this starter to make your own or does he provide you with something else?
     
  5. Antares in NYC

    Antares in NYC Senior Member

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    I would also be very interested in knowing if this is the same product that Dr. Enlander sells. He doesn't work with my insurance, and I can't afford to pay for his consultation off pocket. At this point, with my condition steadily worsening, I would try this. Nothing to lose at this point.
    Thanks.
     
  6. Daffodil

    Daffodil Senior Member

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    hi all. I took gcmaf for a couple of years....maybe less, I cannot remember. I took very small doses. it helped maybe 10% or something. to be honest, I was doing other things too so I cannot be sure, but I know for sure that it did help and at the very least, took the edge off. I was in a very very bad state back then.

    my improvement plateaued and I guess I was supposed to increase the dose, but by that time, I had been diagnosed with active borrelia and started antibiotics. I was advised to stay on the GcMAF but it just became too hard with all the other supplements and injections...just couldn't keep up with it all cuz of the brain fog....so its just sitting in the freezer for now.

    I do plan on starting it again at some point.

    I know a woman personally who was helped tremendously by it and it seemed like her CFS "went away". I am not sure if it lasted since I have not spoken to her in a while.

    xoxoo
     
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  7. Sushi

    Sushi Senior Member Albuquerque

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    GcMAF has been an enormous help for me. My nagalase is now normal. The only difficulty I had with it was, if I took too large a dose, I got inflammation and would have to lower my dose. I have stopped it temporarily as antibiotics for Bartonella have also raised my inflammation levels.

    I am waiting for may latest inflammation markers to see if they are low enough to start injecting again. I did not get mine from GcMAF.eu, however.

    The injectible form that Dr. Enlander supplies does not come from GcMAF.eu either.
    Sushi
     
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  8. capnJack

    capnJack

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    They switched from injectable to the oleic sublingual form because it is more active and doesn't require needles. I used FirstImmune's product and liked it. My nagalase levels did lower. They also do a lot of research on it. This is no fly by night company.
     
    Olena likes this.
  9. Antares in NYC

    Antares in NYC Senior Member

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    As of today, First Immune (GcMaf.eu) no longer sells any products. They haven't made an announcement yet about it.
     
  10. Olena

    Olena

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    I am very good with GcMaF, but I need more dose.
    I have a low inflammation, cytokines low, I want to raise them.

    Really looking forward to that factory will open again.
     
  11. xrunner

    xrunner Senior Member

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    I have used the probiotic GcMaf (314) for twelve months and it worked very well for me. Maf and abx accounted for most of my recovery. The abx helped me out of being bedridden/housebound, whilst the maf helped with my immune system which felt a lot more stronger and stable after it, gave me further improvements in stamina and sleep when abx had stopped working.
    It's not been a complete cure for me but I'd say it's one of the very few treatments worth trying, although I'm aware that responses can vary from person.

    I thought Cheney had given up the injectable maf but was using the probiotic one.
    http://mdwme.blogspot.co.uk/2013/04/dr-paul-cheneys-latest-observations.html
     
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  12. SB_1108

    SB_1108 Senior Member

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    I called to ask if they were still using this as a treatment and the front office staff said no. I've read that Cheney had some patients experience vitamin D toxicity from GcMAF, so that is likely why he has abandoned that treatment.

    http://solvecfs.org/iacfsme-international-conference-summary/

    I would like to try it and I'm wondering if this is something my naturopath could work with me on? Anyone know if a naturopath could even manage that treatment, especially if I'm doing the probiotic versus injectable?

    @xrunner - I'm glad it has helped you some... I'll take any bit of improvement I can get! Even the smallest gains can make a world of difference!
     
  13. ErdemX

    ErdemX

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    Hi Olena,

    I was thinking that you were using GcMaf from Sensei-Mirai (and also very happy with the results).. I think they still produce GcMaf without any problem.
     
  14. xrunner

    xrunner Senior Member

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    @SB_1108
    Regarding vit D toxicity I never took any vitamin D while I was on maf. The link article said that 2 out 21 patients reported that problem and it was the sublingual form not the probiotic one.
    Regarding getting worse, yes I got worse during the initial few weeks, felt quite fatigued and a bit of headache but no other major symptoms. But after a couple of months I started to get better compared to before starting the treatment.

    In my case I tried Gcmaf after about three years of Lyme/abx treatment. I am not sure it would have worked as well if I had tried it before that. I suspect specific chronic infections require specific treatment.

    For the probiotic one I'm not sure it's necessary to have a doctor to supervise the treatment, as long as you stick to the instructions and don't overdose.
     
    Sushi likes this.
  15. Sushi

    Sushi Senior Member Albuquerque

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    Note: Dr Cheney was also giving higher doses than some other practitioners--100 ng I believe. In my experience, I could not tolerate over 25 ng, but at that dose did get very noticeable improvements. I have checked my Vit D levels regularly (both 25 and 1,25) and they have remained normal.

    Sushi
     
  16. SB_1108

    SB_1108 Senior Member

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    @Sushi - You have probably said this a hundred times but I can't find the information in your previous posts... Were you doing only injectable GcMAF? No yogurt, right? Also did you receive it from Dr. Enlander?

    I'm curious what Dr. Lipkin's thoughts are on GcMAF. Since Lipkin believes that CFS/ME is a bacterial/pathogen infection and isn't GcMAF more for viral infections or did I misunderstand?

    My symptoms are primarily gastrointestinal so I feel like the probiotic form would be more appropriate for me but I can't have dairy.

    Does Enlander allow you to buy his GcMAF yogurts without being his patient?
     
  17. Sushi

    Sushi Senior Member Albuquerque

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    I only do injectable. And no, I don't get it from Dr. Enlander. Dr. Enlander gets it from Dr. De Meirleir and I get mine from Dr. De Meirleir.

    GcMAF activates macrophages. Macrophages
    He used to sell it on Ebay. You can call his office and find out the situation now.

    Sushi
     
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  18. abporter

    abporter

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    After almost 7 years of undiagnosed Bb, my nagalase in Nov. 2013 was 1.08 (from Red Labs ordered by Dr. De Meirleir). I started injecting GcMAF (100 nanogram/wk) in Feb. 2014, ran out of it, and took a break from July to December 2014. I've had no adverse IRIS reactions from taking GcMAF and have felt fine at this dosage. I have been injecting again for about 10 weeks. In January (one month ago after being back on for 6 weeks) I had my nagalase retested from Health Diagnostics, by a doctor in Austin who is not very familiar with it, and my it is now 3.0! I haven't seen De Meirleir yet to follow up and share these results as he is not in the States until March. However, very different results from Red Labs and Health Diagnostics. I'm wondering why my Nagalase would suddenly INCREASE after taking GcMAF. Are viruses suddenly acting up (see http://www.ageofautism.com/2011/10/dr-bradstreet-nagalase-and-the-viral-issue-in-autism.html) or maybe the labs don't give the same results? Any thoughts are appreciated!
     
  19. Kapualahi

    Kapualahi

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    Are injections 1x/wk or 2x/wk.? I have read both, but the company says it is 2x/wk. So I am doing 100ng/2wk. ( I don't have a md). Just wondering what most people are doing. thanks
     
  20. Sushi

    Sushi Senior Member Albuquerque

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    Generally most docs recommend 1 injection a week. Taking 100 ng twice a week increases your risk for systemic inflammation and toxicity from high Vit D 1,25, which usually rises in tandem with calcium. If you are taking that high a dose, testing your D 1,25 once a month would be recommended by many docs. I can only tolerate 25 ngs once a week as inflammation can build up over time. It is thought that the cycle of macrophage activity lasts for about 6 days after an injection. That fits with my personal experience.

    Do you have ME/CFS? Patients who have other conditions seem to tolerate higher doses than the ME/CFS patients.

    Sushi
     

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