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

[Nabo]

I have AGAIN lots of side-effects.
Started with 1 full dose (15 weeks)
Then 3 weeks on 1/3 en now 2 weeks on 1/5.

And still so many side-effects.
Cant sleep at all, lots of pain etc...

Really dont understand.. my first 7 weeks on full dose where good i felt nothing.
And after those 7 weeks it went bad bad and worse ....

 

[froufox]

Thanks rrrr, thats interesting about the other person, but not nice at all for them im sure! I've not vomited or anything but have come close to it a few times. Maybe its just a way for the body to expel the toxins.

Do u find the daily cholestyramine helps?

Sorry your last dose hit u hard, have a good break anyway, hope u get some strength back soon. I missed my dose last week, did one last night instead...just 1/6th, so hopefully i can cope with that.

Sorry you have such a lot of side effects Nabo, it sounds really tough. It sounds like it might have built up in your system? What do u think? Have u tried taking a break? Hope things ease up for u soon!

 

[vli]

i think i saw someone else seeing kdm was told to take another probiotic called VSL or something like that...?

where does anyone outside the US order their VSL from? The company website says it would ship to US customers only.

 

[*GG*]

i take cholestyraimine daily. i take the one with sugar, but i'm eating sugar lately...

rrrr

My Dr has my Cholestryramine made with Stevia, FYI Perhaps you could ask for this substitution instead of sugar and/or aspartame!

GG

 

[aquariusgirl]

Sounds like a lot of ppl are hitting a hump at a certain point...i'm wondering whether the folks on LDN are weathering the hump (IRIS?) better, cos they have the inflammation under control.

hard to know though. doesn't sound like folks are getting much support from brussels ....is that right?

 

[aquariusgirl]

gg: have u posted elsewhere what yr cholestyramine protocol /dosage is?
also, i'm confused by yr post.. I thought you had 2 options with cholestyramine.. flavoured (with aspartame) or unflavoured.
don't most ppl get it from the pharmacy... ?

 

[mojoey]

Curious: has anyone asked KDM about kefir? It has been far better for my gut than anything else I've taken, including all the d-lactate free formulas. I've taken plenty of VSL too with no benefit.

Kefir is so much more cost effective with over 40+ strains and I've read it's d-lactate free as well so what gives?

 

[Sushi]

Sounds like a lot of ppl are hitting a hump at a certain point...i'm wondering whether the folks on LDN are weathering the hump (IRIS?) better, cos they have the inflammation under control.

hard to know though. doesn't sound like folks are getting much support from brussels ....is that right?

Hi aquariusgirl,

Interesting about the LDN, I guess it is anecdotal, but the few I know who are on LDN don't seem to be getting these symptoms--I am not. Most of my ups and downs seem stabilized. I'll take my 16th injection today at half a vial.

Re: support from Brussels--it comes immediately for something acute or possibly dangerous. Another patient told me of an immediate response today. Other questions do get answered by email, but more slowly. He reviews patient emails first thing in the a.m. for acute situations. Also, he is part-time clinician and full-time Univ. Professor, so he is not there all day, every day.

Sushi

 

[aquariusgirl]

Cheney is saying goat milk kefir is getting far better results than any probiotic according to Carol Sevierling.

Sushi: I did not know KDM was still teaching. Now that is multi-tasking. And I shouldn't have posted that really ...given I have no first hand knowledge.
Roll on July. I cannot wait to get my hands on some gcmaf.

 

[Rrrr]

can you use/take goat milk kefir if you are lactose intolerant?

cholestryamine (sp?) (also known as CSM): no, i don't notice anything good from taking it. however i take only 1 scoop per day. and i take it even tho i don't get anything good from it because i assume it is helping somehow. i had a lot of mold exposure. i'm also on nystatin (sp?)

i don't mind the sugar in my CSM. i'm not sugar free. and i never feel any better or worse when i *am* sugar free. i just gain more weight when i eat sugar, and that sucks.

 

[Sushi]

can you use/take goat milk kefir if you are lactose intolerant?

Good question! I tested at the highest sensitivity to everything that had anything to do with dairy--including goat's milk, yogurt etc. KDM has prescribed VSL-3 twice a day--but only after an antibiotic killing spree. I've been taking good probiotics for years and they have done nothing--I had no good bacteria in the gut and one whopping infection. Maybe you have to get rid of bad guys before the probiotics are effective?

Sushi

 

[mojoey]

I use water kefir. Can't tolerate a lick of dairy.

 

[Rrrr]

joey, can you send us info or to a link with how you make it?

 

[Rrrr]

need basic info on gcmaf

i have a number of folks asking me for basic info on what gcmaf is and where to get it (all the options). does anyone feel like writing that up so i/we can easily distribute it? (i posted it once on this thread, but don't know where, and this thread is so darn long.)

 

[mojoey]

I get mine from kefirlady.com. They come with full instructions. All you need in advance is organic sugar, organic molasses, a big glass jar, some cloth + rubber band to cover the jar, mineral water or reverse osmosis water + minerals (I use cell food).

 

[freda]

Rrr as you say this thread is so long it is hard to keep track of everything xxx. There are loads of websites with gcmaf info but is written by scientists and goes way over my head most of the time. My partner has been very unwell for a long time so we have been on the internet hoping to find treatment that will help.

 

[Ronan]

Colds, colds and more colds!!!! Has anyone else been experiences loads of Colds since starting GcMAF? In the last few years i have had huge problems with colds, I get them all the time and they last for ages and develop into flues most of the time. Since starting GcMAF though about 6 months ago i have had 7 colds, the first 3 were my normal type of cold but more recently i have got 4 colds in the space of just over 2 months. It's so frustrating because i have no way of gauging how well the GcMAF is working as i'm down with a new cold a week or 2 after the last one is gone. The only change is the severity of the colds as the last 4 have been fairly mild for what i usually get. I'm half thinking that maybe its some kind of immune response even. Anyone else having similar problems?

 

[greg22]

Colds, colds and more colds!!!! Has anyone else been experiences loads of Colds since starting GcMAF? In the last few years i have had huge problems with colds, I get them all the time and they last for ages and develop into flues most of the time. Since starting GcMAF though about 6 months ago i have had 7 colds, the first 3 were my normal type of cold but more recently i have got 4 colds in the space of just over 2 months. It's so frustrating because i have no way of gauging how well the GcMAF is working as i'm down with a new cold a week or 2 after the last one is gone. The only change is the severity of the colds as the last 4 have been fairly mild for what i usually get. I'm half thinking that maybe its some kind of immune response even. Anyone else having similar problems?

Hi Ronan,

Parodoxically you getting colds is a good sign. Your immune system was probalbly overactivated because fighting plenny of opportunistics infections. Staying constantly on alert your immune system would shoot any rhinovirus that showed out before it had a chance to trigger a cold. Under GcMaf your immune system has strengthened and probalby got rid of some of chronic infections you used to have and then could get back to a normal level activity allowing you to catch colds...

 

[mojoey]

Hi Ronan,

Parodoxically you getting colds is a good sign. Your immune system was probalbly overactivated because fighting plenny of opportunistics infections. Staying constantly on alert your immune system would shoot any rhinovirus that showed out before it had a chance to trigger a cold. Under GcMaf your immune system has strengthened and probalby got rid of some of chronic infections you used to have and then could get back to a normal level activity allowing you to catch colds...

I'm not so sure about this. I used to think this for sure, but it now seems than an overactive immune system is no more beneficial than an underactive immune system in terms of functionality. Getting colds again might be a good thing--getting colds nonstop? Not sure.

For example, it seems people on LDN get colds less frequently. I thought it was a good sign that I was getting a cold every 2 weeks this year (in past years I'd get at most 1 cold a year), but I wasn't feeling any better. I started LDN 2 months ago and since then I haven't gotten a single cold. Coincidentally, sergio and sushi are both on LDN and they seem to be experiencing less of the adverse effects of gcmaf while still experiencing the same, if not more, benefits.

Just my 2cents

 

[greg22]

I'm not so sure about this. I used to think this for sure, but it now seems than an overactive immune system is no more beneficial than an underactive immune system in terms of functionality. Getting colds again might be a good thing--getting colds nonstop? Not sure.

For example, it seems people on LDN get colds less frequently. I thought it was a good sign that I was getting a cold every 2 weeks this year (in past years I'd get at most 1 cold a year), but I wasn't feeling any better. I started LDN 2 months ago and since then I haven't gotten a single cold. Coincidentally, sergio and sushi are both on LDN and they seem to be experiencing less of the adverse effects of gcmaf while still experiencing the same, if not more, benefits.

Just my 2cents

Hi Majoey,

I agree with most of thing you said. Getting a cold every two weeks cannot obviously be interpreted positively. I was pointing out the fact that getting a cold espcially with fever consecutively to GcMAF treatment could be a sign of immune restoration.Maybe worsening of cold symptoms with GcMAF (especially sore throat) can also be related to herxheimer reaction and LDN with its anti-inflammatory effects contribute to ease it.... Anyhow I think aggravation of some ME symptoms while starting GcMAF cannot be seen negatively on the contrary it shows the treatment is effective.

Wish you the best