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.

Thursday, June 2, 2011

Word Fog

Pasting my url into Wordle is a lot easier than writing an actual blog:

"Wordle is a toy for generating 'word clouds' from text that you provide. The clouds give greater prominence to words that appear more frequently in the source text."