Saturday, June 11, 2011


I've been on GcMAF 30 days now and I'm starting to worry I might be a non-responder. I should probably wait at least another three weeks before I let myself get too concerned, but I can't really help it.

I have to say that it's been a good 30 days, relatively speaking. I still have good days and bad days, but the bad days haven't been as bad, and the good days have been a little better. It's been a little easier to fall asleep at night, and easier to get up in the morning. I really felt better. I didn't know my test results yet, if my Calcitriol levels were rising, indicating the GcMAF was active, or if I had the right VDR polymorphism.

Someone in Europe, I don't know if it was Kenny De Meirleir or BGLI or what, had said that only 5% of the population had the bad VDR type that didn't respond to GcMAF. Recently Dr. Cheney said that among his patients it was more like 50%. I won't know my VDR test results for at least another three weeks.

I haven't gotten the results in the mail yet, but I found out over the phone that my Calcitriol has not gone up, in fact it's gone down a little. But, when I took the test, I had only been on GcMAF for two weeks and had only had 3 doses of 20ng each. It won't be for another two weeks that I get up to the full 100ng dose. So I'm hoping that that has something to do with it.


Dr. Cheney suggested I do another nagalase test to see if that has at least gone down. The results from my first test came, and I've got it. My level was 2.2. The normal/healthy range is 0.32-0.95. So I am not normal or healthy. There isn't a lot on the internet about nagalase, but as far as I understand, it's only seen in cancer, HIV, and certain autoimmune diseases. I looked at a chart in one of Dr. Yamamoto's papers, and found that his HIV patients nagalase levels ranged from 3.06 to 5.58. The healthy control was .23. The goal of the GcMAF therapy is to get the nagalase down to zero.

As for XMRV, as far as I can tell, everyone in the retrovirology world seems to agree with John Coffin that XMRV is a recombinant virus, and a lab contaminant that does not infect humans. On the other hand, I got an email recently from a patient who saw Dr. Cheney in May and he still wanted her to get an XMRV test from VIP. I guess that's all I'm going to say about that, because retrovirology is pretty much impossible for me to understand. All I know is that something in me is making nagalase.

My next calcitriol test is in a little less than two weeks, but even by then I still won't have been up to full dose. Still, I'm hoping it shoots up.

I still have not experienced any GcMAF side effects, like the IRIS effects, flu-like symptoms that last anywhere from 2 days to two weeks.

If I'm not responding to GcMAF, and the good days I've had this month are just a coincidence, or a product of hope, there are two possibilities. One of course is I have the bad VDR mutation. If I don't though, I'm worried that my bad digestion could be the cause. And since gut health is so important to the immune system, maybe I'm screwed.

There might be a study conducted with Dr. Cheney's patients and a Dr. Ruggiero from Italy. He makes a product that combines GcMAF with a raw milk colostrum. It's supposed to be good for gut issues. Maybe if I am not responding to GcMAF this way I will be able to get in on that study, but I don't know, it's a pretty small one.

If GcMAF works for me, and it has for many with CFS, it could make such a difference in my life. Maybe I could go back to college. Maybe I could work. Maybe I could go grocery shopping and cook for myself again. I would love to take dance lessons with my boyfriend. But if things stay as they are, I have to spend most days sitting on the couch. Or if I am up to it, I can sit on someone else's couch, or on a couch at a party. Or even in the passenger seat of a car for a weekend roadtrip.

What I really need is to do some real clothes shopping. I'm sure that's the most energetically demanding chore of a person's life. Walking around to different stores, trying a bunch of different things on. That's the only way I know to maintain a decent wardrobe. I've been shopping a little, in spurts, one, maybe two stores at a time, with my mom or boyfriend to carry things for me. But I have to be done in a half hour, 45 minutes. There's more pressure. I don't always buy the right things. And then my weight is always going up and down so much, so something I bought two weeks ago won't fit today.

There's got to be some workaround for the shopping thing. Maybe my own private tailor who makes house calls?

I don't even go out that much, but I do go out sometimes. And when I do...I get very self conscious about wearing four year old clothes that don't fit. And also, it matters very much what I wear just sitting around the house. It has to be comfy, but I can't stay in my pajamas all day or I'll have nothing to change into when it's time for bed.



    i dont know if you have checked the other patients on gcmaf for cfs, the link is a thread on many patients on it.
    for CFS you might have to wait many weeks, most start improvments at 40-50 injections, only cancer or hiv might have a response at 8-10 weeks but nobody so early as 4-5 weeks

  2. Thanks for the summary. Ever since I've been sick it's been really hard to keep up with forums. They get so monstrously long. I'm basing my expectations only on what my doctor has told me about his patients. Also I'm not doing a weekly injection like many, I'm doing sublingual, every 5 days. Anyway, good to know.

  3. Hi, I am Lisa one of Dr. Cheney's patients. I haven't started on the GcMAF yet. I am going to try the GI GcMAF hopefully soon, since that may be a better way for me to try it. I have some other autoimmune issue as well. All I want to say is hang in there. You are doing well. I have heard it takes time, and your nagalase has to really come down. I was also using a wheelchair to get around the first ten years I had CFIDS. I am doing much better, but have been seeing Dr. Cheney for four years. I still cannot work though. Good luck, and you have a great blog!!!

  4. Hi Lisa, thanks for your comment. Let me know how it works out with the Gi GcMAF if you can.

  5. Alison, thank you for sharing you experiences. I find it very helpful to know how people are doing with specific treatments.


  6. My doc (who consults closely with Cheney) says it can take two months or longer to see if one is a responder.

    I'm keeping my fingers crossed for you. It sounds like it is doing something.

    I can related to the need to go real clothes shopping. I miss shopping (I used to love it).

    Oh, and the gut issues. I need to figure out how to fix mine too. It is a mess.

  7. Hi,
    Many thanks for writing about your experiences with gc-maf. I was wondering how you are getting on now? I hope you are doing well.

  8. Does any one know where to get Nagalase testing done in the United States? What lab to use? Thanks.

  9. As far as I know there are no commercial labs offering nagalese testing. My doctor made a deal with a research lab or something.

    I've heard that nagalase testing might not be very reliable anyway.

  10. Hi, I just wanted to say I did the GcMAF injections for over 4 months and saw no improvements. I do another Nagalase test on Tuesday. I have also been doing the K-MAF and K-Harmony and K-Bart and K-Bab for Late lyme, bartonella, and babesia. These products come from Europe. I have viral overload and cancer. Prayers and Blessings to you all! Debbie Guilbeau

  11. Hi Debbie,

    Were you taking the GcMAF for cancer? I hadn't heard of people doing that.

    Take care,


  12. alison gcmaf has been developed for cancer and used for it, viral infections, cfs and autism trials came later on

    it just had front page of oncology immunology this agust