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

Shoesies · Feb 1, 2013

Hey SanDiego#1 I will be going back in another week to see Dr. Bradstreet. We will go over test results and decide on other tx modalities. Hopefully nagalase will be back then. The office said that it should take three weeks..I understand that is unusually fast. Dunno.

Symptomatic · Feb 1, 2013

Sasha said:

Oh my...this isn't making me want to run right out and try it!

Sasha · Feb 1, 2013

Symptomatic said:

No, no - otherwise it tastes like cold vomit! Shove all that other stuff in and it's like a refreshing yoghurt shake!

Symptomatic · Feb 1, 2013

Sasha said:

I got ya, but if it's that bad to begin with....blech! I don't eat yogurt or kefir either, have all kinds of texture/taste issues with that stuff.

Sasha · Feb 1, 2013

Symptomatic said:

I shouldn't have mentioned the cold sick...

Honestly, the other stuff transforms it! Transforms it! I have actually missed drinking it (I've had to have a MAF holiday). I don't like yoghurt either. It's more like a slightly tart chocolate milkshake. Maybe a liquid chocolate cheesecake.

And the consistency isn't like yoghurt, it's like milk. When you make it up, the starter is in colostrum (milky stuff) and you add a pint of milk, two pints of kefir (consistency of milk) and a pint of yoghurt, so the yoghurt is very, very diluted.

Basically, shove enough of anything in there and I reckon you can obliterate any hint of anything else!

SanDiego#1 · Feb 1, 2013

Symptomatic said:

Sym- I Loved this one. You can put in Berry juice as long as it has no art sweetners. The Kirland Labs is unflavored-YOU CAN'T TASTE IT!!!! NO TROPICAL FRUITS (ALA CHENEY).

STILL LAUGHING!!!

San Diego

suzanne · Feb 3, 2013

Hi all,
Just an update about my continual struggle with inflammation and trying to control it before I am prepared to do another trial of GcMAF.

I seem to have responded badly to most supplements that are supposed to help inflammation. Some, like curcumin took me days to recover from even when I took what seemed a tiny dose.

A glimmer of hope ( altho' early days), seems to be cats claw. I have trialled this before and felt initially good and then crashed. I wen thru my diary notes and found out that when I trialled this last, I took about 45 mg.

So this time I have gone for a speck ( technical term for nano dose).

I am having definite feelings of improved wellness and energy. Hard to believe but true.

In my early attempt I took the speck 2 days consecutively and then crashed- it took me 4-5 days to recover.

I now take the speck with a gap of 2 1/2 days...I have done this for a week now and actually did a low impact aerobics class this morning! I am *thrilled*

I hope this information may help someone...I know there is still room for me to crash and so I intend to take the dosing regime very easy...and try not to rush into to much exercise. That said, I have missed my aerobics classes so badly, I couldn't help myself but to give it a bash, just to know I am still alive.

Will let you know how I progress. Perhaps this will be my companion with the GcMAF. I hope.

Oh, I should have mentioned, it has also slowed down my rate of migraines

GcMAF Australia · Feb 3, 2013

suzanne said:

Hi all,
Just an update about my continual struggle with inflammation and trying to control it before I am prepared to do another trial of GcMAF.

I seem to have responded badly to most supplements that are supposed to help inflammation. Some, like curcumin took me days to recover from even when I took what seemed a tiny dose.

A glimmer of hope ( altho' early days), seems to be cats claw. I have trialled this before and felt initially good and then crashed. I wen thru my diary notes and found out that when I trialled this last, I took about 45 mg.

So this time I have gone for a speck ( technical term for nano dose).

I am having definite feelings of improved wellness and energy. Hard to believe but true.

In my early attempt I took the speck 2 days consecutively and then crashed- it took me 4-5 days to recover.

I now take the speck with a gap of 2 1/2 days...I have done this for a week now and actually did a low impact aerobics class this morning! I am *thrilled*

I hope this information may help someone...I know there is still room for me to crash and so I intend to take the dosing regime very easy...and try not to rush into to much exercise. That said, I have missed my aerobics classes so badly, I couldn't help myself but to give it a bash, just to know I am still alive.

Will let you know how I progress. Perhaps this will be my companion with the GcMAF. I hope.

Oh, I should have mentioned, it has also slowed down my rate of migraines

I am glad to hear this Suzanne

Sushi · Feb 3, 2013

suzanne

That is really encouraging! I hope the good effects continue. No one would believe the kind of nano dosing we need to do.

Also wondering if you have ever checked the balance between your phase one and phase two liver detox? If, for instance, your phase one were fast and phase two slow, that could make it very difficult to process supplements and drugs. Or, maybe it is something else!

Sushi

suzanne · Feb 4, 2013

Sushi
I am jumping out of my skin I am so encouraged. I can feel it doing something, at tiny doses even, it is truly an amazing feeling. The aerobics session may have been a bit overkill, as tonight I have had terrible head pain, but, no migraine for nearly a week...amazing. I wish I could adequately express how it feels- sort of increased energy and less toxic poisoned feeling but some increased nausea and itch- but tolerable on my newly created protocol for dosing nano every 2-3 days depending on how I feel.
I do have some problems with liver processing. My liver detox tests were run quite a few years ago, and phase 1 and 2 are both under performing. Trouble is I have found the recommended supplements to improve my liver too impossible to tolerate.
That is one of the many difficulties we face with this type of illness- it seems to effect all our body processing and where to intervene to start to break the downward spiral can be tricky ( another technical catch all term

)

GcMAF Australia. Thx for your kind support.

I have been trialling supplements for better inflammation control since last July when I had my first experience of what others describe as IRIS. I am hoping that this cats claw lets me get back on the GcMAF, but I think for now I will stick with the cats claw until I feel I am much improved and in control of migraines- I hope. I have also researched licorice, including the DGL type. Seems promising for both my inflammation and candida problems, but at this point I am not wanting to mix too many things. I'll report in again soon. Perhaps others may be helped, by this tedious trial and error to try and wrestle the inflammation under control

Shoesies · Feb 4, 2013

suzanne It is so nice to hear what is helping others. I am keeping a log...but hesitant to add anything else as during my last relapse I threw a ton of stuff at my illness. Now I am slowly stopping most of the supplements except cucurmin to see what actually helps. Second week on GcMAF...so far just a few bad days and then improving through the week. Please God let it continue!

suzanne · Feb 5, 2013

Shoesies I have had to learn the hard way about not throwing too many supplements at so called, 'normal' doses, down my throat. I inevitably go from feeling bad to feeling couch ridden.

My experience on GcMAF was that I had 4bad days and then 3 good days. That went on for a month and then I crashed, due to what has been described as an inflammatory cascade kicking in- apparently this is not uncommon.

Luckily I had spoken with Sushi about her dosing and the experience of others and I did start on a fairly low dose of about 20 ng. I have since tried 10 ng and less. I still get a bit flair up. So now I am trying to get on top of the inflammation symptoms before I try again.

It is great to hear of your progress. Whatever you do- stop the GcMAF at the first signs of protracted inflammatory symptoms. I took an extra dose in order to be sure it was the GcMAF and just made matters worse

Daffodil · Feb 6, 2013

does anyone have low CD4 count? demeirleir says when CD4 count is low and immune system is too damaged, you may not be a candidate for gcmaf. this has me concerned, since my CD4 count is always low these days (usually 500 and some). also, i am not doing that well. i am better but still not well at all.

suzanne · Feb 6, 2013

Daffodil That's interesting. I'd love to know where this information came from? I have border line low C4 and under reference range C3. Many immunologists have scratched their heads about this. I suspect it is a profile not uncommon with this type of illness. I wont share my results as in Aus the measurements do not align with your reference scales.

Interesting stuff. I have definitely struggled with the GcMAF. But doing considerably better on a low dose pulsed, cats claw- who would believe?

I hope you find a pathway to feeling better ... soon

Daffodil · Feb 6, 2013

thanks suzanne. this information was in a summary of a talk given by demeirleir at the boston lyme conference in 2012, which sushi kindly shared with me. here is a link:

http://www.betterhealthguy.com/joomla/blog/277-ilads-2012-boston

Daffodil · Feb 6, 2013

i am thinking that since nothing seems to help my brain fog and severe CNS stuff, i shoud give MAF314 a try. i tried reading the MAF314 thread but with the fog, it is next to impossible. i wonder if i will even be able to make it. also, the price is more than i can afford, i think. wonder if it's possible to share with someone.....

why does everything have to be so difficult!?

Shoesies · Feb 6, 2013

((((@daffodil)))) I know that it is probably no where near as effective as MAF314, I have been making my own yogurt and adding colostrum and super probiotics. I figured every little bit helps and at least I am supporting my gut and immune system..cannot hurt, right?

Tito · Feb 6, 2013

Daffodil said:

My CD4 counts was in the 300s last time it was checked. I remember KDM once told me that patients with similar immune problems as mine are quite rare, around 2% of patients.

Daffodil · Feb 6, 2013

hi shoesies

thats a good idea, actually.

tito..i was under the impression that most advanced CFS patients had lower cd4 counts...
xox

ukxmrv · Feb 6, 2013

I've got a low CD4 count (well it was in around 2003) and I'm doing OK on MAF314.

At the same time I am taking Imunovir and Valtrex and that may be making a difference.

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

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