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

[Daffodil]

hi OS....i heard you have to have vit-D testing pretty often with Gc-MAF. I take 1000 IU's a day when I remember, which is what Dr. Enlander suggested.

Thanks Neilk. Are you going to begin Gc-MAF or have you already?

xoxoxo

 

[Nabo]

i am still very sick from the gc maf.

already 10 weeks in IRIS.

Never again these gc maf injections.

 

[Nielk]

hi OS....i heard you have to have vit-D testing pretty often with Gc-MAF. I take 1000 IU's a day when I remember, which is what Dr. Enlander suggested.

Thanks Neilk. Are you going to begin Gc-MAF or have you already?

xoxoxo

Hi Daffodil.

I didn't sart yet. I'm kind of in a crisis mode right now due to adverse (really bad) reaction to a medicine. It's really very unusual how I reacted. I must be very sensitive to it and I can't withdraw from it either because that makes me worse. I have to first get through this hurddle and get stabilized before I can try anything else.
I'm rooting for you with the Gcmaf. I hope you are feeling better today.

 

[ukxmrv]

Sorry to hear how you are still suffering Nabo. It's awful to try something new (and expensive) and then have such a bad reaction. Hope the IRIS is over soon.

Also Neilk

and anyone else suffering badly bacause they are trying something to get over this serious and horrible disease.

 

[Daffodil]

neilk i am sorry to hear this.....may i ask which medication you reacted to?

nabo....how much GcMAF did you take??? ughhh that sucks.

everyone is advising me to stop 0.25 ng and take only 0.1 ng.....i again asked my doctor if i can do this....i hope he answers me. i dont know what to do now. everyone is telling me i am making a big mistake by staying on this dose and that my IRIS will keep going if i do not stop, and that there is no benefit to the higher dose.

but i cannot make my doctor think i am being non-compliant - what if he stops seeing me!?
xoxoxo

 

[Nielk]

neilk i am sorry to hear this.....may i ask which medication you reacted to?

nabo....how much GcMAF did you take??? ughhh that sucks.

everyone is advising me to stop 0.25 ng and take only 0.1 ng.....i again asked my doctor if i can do this....i hope he answers me. i dont know what to do now. everyone is telling me i am making a big mistake by staying on this dose and that my IRIS will keep going if i do not stop, and that there is no benefit to the higher dose.

but i cannot make my doctor think i am being non-compliant - what if he stops seeing me!?
xoxoxo

Faffodil,

You should listen to what people who had experience with this tell you to do. Your doctor is not going to stop seeing you for changing the dosage. Please listen to your inner wisdom!

 

[Daffodil]

Faffodil hee hee

inner wisdom? where can i buy that?

thanks Nielk

 

[sprankel]

Daffodil: Please do what you think is best for you. If you think you need to lower the dose, then do it.
You can always switch to a higher dosis when you feel better.

I am reading a lot here, but must of the time I can't post messages.
Wish you the best, also for Nielk and Nabo

 

[Daffodil]

thanks sprankel

so the doctor said i could lower dose...he said try 0.15 and if i need to, i can drop to 0.1

xoxoxo love u guys

 

[janey]

Daffodil, when I had a similar experience to you, I stopped completely for a couple of weeks until I recovered, and then started again on 0.1 and slowly built it up to 0.25, which I am now tolerating well. This really worked for me. I hope that whatever you decide to do works for you.

 

[Daffodil]

thanks janey! ok i am going to stop for a couple of weeks. so many people are telling me this, i may as well take advantage of the knowledge from the people who have done this before me.

have you improved a lot on the gcmaf?

thank you!

 

[janey]

Daffodil, some of my symptoms have improved, mainly cognitive functioning and quality of sleep.

 

[Daffodil]

janye thats great.

so i did 5 injections so far and as you know, i had quite a flare up. i am still very ill and feel like i have a cold/flu type of thing coming on now. interesting.

xoxoxo

 

[Rrrr]

i thought i'd post my update on how i'm doing on GcMAF.

background: i have been sick with me/cfs for 23 years. much of it homebound and bedridden.

i have been on gcmaf + nexavir for 1 year now and i recommend it. i get my GcMAF from a doctor in europe and my Nexavir from Johnson Compounding Pharmacy in the Boston area. but there are ways to get GcMAF in the USA, that is, through the labs called BGLI.com and gcmaf.eu). this is my summary of my experience so far on GcMAF. the trick for me, i think, and the good results I am having, is that I am taking GcMAF in a tiny tiny dose once a week. if i were to do larger doses, i'd likely get that poisoned feeling back again (see below for what i mean.)

March 2011: I started Nexavir, building up to 2 ml per day.
April 2011: I started GcMAF at 0.20 ml (also known as 0.20 ng) per week. (My Nagalase was 1.90)
June 2011: After my 7th injection of GcMAF 0.20 ng, I suddenly began 6 wks of feeling very sick, poisoned and bedridden. I stopped GcMAF for 6 wks.
September 2011: After poisoned feeling passed, I felt better and started to go on 30-45 minute walks for the first time in 3 years. A major accomplishment!
September 2011: I began the Creon (digestive enzymes), probiotics and antibiotics -- all according to my doctor's instructions -- and felt worse.
October-December 2011: During and after the antibiotics and other new treatments i tried, I was near-bedridden. Liver function test was slightly elevated.
January 2012: I felt much better and able to start using an exercise bike in my living room for 15-30 minutes each day with only mild PEM. I have never been able to do that in 22 years of being sick! A major accomplishment.
February 2012: I got a cold and was weak for 1 month. Could not bike or walk.
March 2012: I began again to use the indoor bike 15-30 minutes each day, with only mild PEM. And I am able to go out of the house more often than before. A major accomplishment.

Personal comments
I feel like I crave GcMAF. I want to take GcMAF 1-2 times per week (0.20 ng each time), but each time I take it I am sicker for 1-2 days. Then I feel better. So I just do it once per week.
I just did my 45th shot of GcMAF and I can tell that it certainly helps me. On the GcMAF, I can go out more, and I can exercise (walk and bike in my living room and only sometimes get PEM).
But I'm still exhausted much of the time, so the GcMAF has not cured me, yet.

Nagalase
1st test in March 2011 (pre-gcmaf): 1.90 (ref range of 0.32-0.95)
2nd test in July 2011 (after 11 shots of gcmaf, most 1/5th of a dose): 0.80
3rd test in October 2011 (after 25 shots of gcmaf, most at 1/10th of a dose): 0.60

 

[bertiedog]

That's good news Rrr, glad that you have some major improvements. Maybe you will be able to raise your dose a little as time goes on?


Does anybody know if private doctors in the UK can prescribe GcMaf?

Thanks
Pam

 

[Sushi]

That's good news Rrr, glad that you have some major improvements. Maybe you will be able to raise your dose a little as time goes on?

Does anybody know if private doctors in the UK can prescribe GcMaf?

Thanks
Pam

Yes, any doctor can "prescribe" GcMAF, as it is not a drug. The trick is getting it as no pharmacy would supply it. You would have to (or your doctor) order it from one of the places Rrrr mentioned or get it from a doctor who keeps a supply of it.

I don't know of any doctor in the UK who does this, but there may be some. I also go to Europe to see a doctor and to get GcMAF there. I have also improved a great deal on it--also low doses. I really can live a pretty normal life now, just can do less than a "healthy" person. But I no longer crash unless I do a lot of aerobic exercise and then only for a day or two.

In the experience of a lot of us, raising the dose doesn't seem to give a better effect. We seem to need to find the dose that works best for us and doesn't raise inflammation too much.

Best,
Sushi

 

[Rrrr]

gcmaf + nexavir is not a cure for me, at least so far. but i'm amazed at what i can do now. i went on a 2 mile walk the other day. it is true that i did have some PEM after that walk. but i pushed past it and then spent the next day doing too much on top of it all (including 20 minutes on the indoor bike). so i was asking for trouble. and i thus spent the weekend near my bed. so as you can see, i'm not cured. still, the week before i had been on the indoor bike or walking 30-60 minutes each day! that is amazing for me!!!

i think you do not need a doctor's prescription to get the gcmaf from bgli.com or gcmaf.eu

contact them to ask.

warning: i heard gcmaf.eu is 4x more potent than bgli. not sure if this is true, but if it is, start slowly.

i will say, i do think the trick for me is to stay on this absurdly low dose, and not to take much more than it (0.20 ml per week of gcmaf). i think i felt poisoned earlier because i was on too high a dose for me. but everyone is different! some can tolerate more and some can only tolerate less.

 

[Daffodil]

hello. is there anyone out there whose brain fog improved on Gcmaf? i know a few people who are doing well in that respect but mostly people who have not been sick that long.

thank you
xoxo

 

[Sushi]

hello. is there anyone out there whose brain fog improved on Gcmaf? i know a few people who are doing well in that respect but mostly people who have not been sick that long.

thank you
xoxo

Mine has, not entirely but maybe 50% better. Enough to get an A in a university language course (doing more studying than other students, but still making it).

Sushi

 

[jo1974]

I have also improved a great deal on it--also low doses. I really can live a pretty normal life now, just can do less than a "healthy" person. But I no longer crash unless I do a lot of aerobic exercise and then only for a day or two.
Best,
Sushi

Sushi,
From what you write it seems that you have overcome any PEM issues. Can I ask a couple of questions to have an idea of your improvements.
About your exercise habits, are you able to do any of the following cycling, swimming or running and for how long?
How long would you say it took you to get to a stage where you don't experience PEM any longer?
It's really interesting and also comforting to read of some who seem to break free from CFS.