• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
why does vitamin diagnostics - the people who test nagalse - insist that you tell them what disease you have?

I don't remember them doing that--maybe it is new? Probably they are trying to correlate test results with different conditions.

Sushi
 

john66

Senior Member
Messages
159
Hi Daff, I took the yogurt MAF earlier this year, it has been about six months and I still do not feel at the level I was when I started. I had my kidneys checked a few weeks later and they were fine. I still seem to get foamy urine too often since then, which means protein leakage. Overall, I dont think this or antivirals do my kidneys any favors. I take Benicar, which is the drug that the Marshall Protocol uses. Please be careful with that as more than a few people have had kidney issues with the huge doses of benicar that are required. There are three phases of antibiotic that are required. Any negative comments get you banned on his site, and I have found people are very defensive of questions or criticism.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hi John was it the MAF314 or the MAF878 that you took?

Sorry to hear that your health has been worse as a result.

The Marshall protocol was banned from one CFS group very early one due to problems with comments. That was before AB's were part of the protocol. Seems like the program has evolved since then and become more like others around.
 

Tito

Senior Member
Messages
300
I'm not that surprised. My personal experience of GcMAF was a short improvement (7 weeks) followed by a very prolonged deterioration (22 months so far). I experienced suicidal thoughts and that day I just stopped the injections. The thoughts stopped but then I developed severe POTS. I also had a bout of psoriasitic arthritis, which made me believe that immune simulation was turning into auto-immunity. Knowing what I know today, I would advise to stop GcMAF as soon as the positive effect fades away. When these doctors prescribe that drug they know absolutely nothing about interaction with other drugs. For them it's just trial and error, for us, it's beyond dramatic. I have noticed that when a drug starts to show its side-effects, instead of just stopping, doctors prescribe something else on top, and then when that too gives side-effects, then a third drug is prescribed, etc.
 

mellster

Marco
Messages
805
Location
San Francisco
There is a big difference between the yoghurt forms and the injected GcMAF in terms of absorption. I haven't heard from anybody experiencing serious side effects from MAF314, but I cannot say anything about the GcMAF.
 

john66

Senior Member
Messages
159
Ukxmrv-it was the 878, Daff, there is no way of knowing that it made me worse-I had a strong reaction to it and seem to be on a downhill slide since then. Is it CFS is progression or the MAF?? I dont know, or think there is a way to know.
 

Daffodil

Senior Member
Messages
5,875
maybe getting worse for a while is good? dr. enlander said that some people feel awful for weeks even months and then come out of it with a lot of improvement...

i think its very important to keep getting bloodwork and checking nk cell function too.

i was doing well on gcmaf + tenofovir. maybe some people would do well on both drugs? maybe gcmaf targets one infection while tenofovir targets some retrovirus? who knows.

tito..may i ask what dose you were on?

thanks
 

Tito

Senior Member
Messages
300
I think it was 100 ng (the whole mini flask sold by KDM)
The whole story about 'you need to get worse to get better' has never worked for me. I was told to keep chelating despite being so unwell. I took an extra tablet and the following day my arm was paralysed. 7 years later my arm is still numb (but painful!) and I feel it is not part of me. I can move it for big gestures but cannot write any longer.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I think it was 100 ng (the whole mini flask sold by KDM)
The whole story about 'you need to get worse to get better' has never worked for me. I was told to keep chelating despite being so unwell. I took an extra tablet and the following day my arm was paralysed. 7 years later my arm is still numb (but painful!) and I feel it is not part of me. I can move it for big gestures but cannot write any longer.

They now have learned that 100 ng is too large a dose for most of us to handle. Sorry it hit you like this. I started with a much lower dose and have avoided these problems.

When you mention "I took an extra tablet," a tablet of what?

Thanks,
Sushi
 

Daffodil

Senior Member
Messages
5,875
i'm sorry to hear that, tito.

i took a low dose of gcmaf and still crashed so i dont know....
 
Messages
63
Tito~
I am sorry you had such a decline.how frustrating isnt it? I too am saddened that the doctor who told me that,"within
3 months of taking GCMAF, you will be cured", had no idea what he was talking about. He since, has taken that protocol off for lyme patients. we were all reacting violently to it. even in small dosages. When I kept asking his assistants that it was contraindicated w/ high blood levels of tgf-b1, they said..."oh, ok, yeah, you should not take it until you get that down". so, 900 and something dollars later... for a pretty bold statement. he wouldnt get back to me about my reactions and frankly did not know how to handle it. I thought I was dying. We are left with the fall out of poor treatment. espeially when seeing doctors outside the insurance realm, where they know there would be no recourse.
I have tried it repeatedly in really small doses still react. w/o feeling good afterwards...which it would be worth it.

So,I am very happy for people who seem to be doing well on it. I have an extra vial that is still in the packing it came in,
in the freezer if anyone is interested. Even for a cancer patient, which it was originally made for.
thanks and prayers to everyone~
Barb
 

Daffodil

Senior Member
Messages
5,875
well i stopped gcmaf about 4 weeks ago i restarted tenofovir about 2 weeks ago. i am getting worse and worse now, with labored breathing, chest pain, severe malaise and an awful feeling in my brain, around the brain stem.

i am supposed to stay on tenofovir 2 more weeks, then get nk cell function test before i restart gcmaf. however, i am feeling so sick, i dont know if i can wait. i really want some relief so would like to see if gcmaf might help me again.

xox
 

Daffodil

Senior Member
Messages
5,875
hi all. i just got my c4a results back from a month ago, after my crash. it is 17 728 with normal range of 0 - 2830
 

Clodomir

Where is the sun?
Messages
212
Location
Belgium
Hi all,

Before taking GcMaf, my CD57 were at 11. Now, they are at 40. I have the impression to feel better, but my VO2Max was at 8! ( normal range: 25-35). My macrophages are working now. I have no infection ( no borrelia, toxoplasmosis, etc...). I am only tired, and severegastritis ( no h pylori)
Is it a good sign?, or no?
If my CD57 get back to normal range, would i be back to normal or not?
Hove someone some experience?

Thanks

Have a good day

Clodomir
 

CindyWillis

Senior Member
Messages
116
I haven't been on the website for 3 months but wanted to let everyone know that at 100 (1ml) of GCMAF for two months now I am symptom free except for intensive exercise. I have averaged 80-95 hours a week at work for those two months and even with all nighters etc. have not have symptoms except for the intensive exercise. I find that I can exercise and am doing so but can't do it intensively without a problem. Otherwise, I am 100% good. I am also taking heppapressin from Dr. Enlander and find that it is extremely important. I ran out of it and couldn't get it for 2 weeks 7 weeks ago and started to have trouble without it. I take it daily at .20 a day (5 days) and then take .6 when I take my GCMAF shot. The heppapressin has been as important as the GCMAF. I am hoping to take the 100 (1 ml) for another 8 months and by then I should be able to start going off of it slowly. I will log back in once I can exercise intensely and let everyone know. My husband is also taking 100 (1ml) a week for the past month and is also doing very well. We are also taking B12 shots, Dr. Endlander's morning and night immune strengther and probiotics.
 

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
I am so happy for you, Cindy!

I am sad for you, John and Tito and Barb. Being a human guinea pig sure has its risks.

I may be reaching the point where I will have to stop taking MAF or at least take a break for a while. My reactivity to mold toxins is getting so ridiculous that I can't find a safe place to sleep. Everywhere seems to either make my kidneys hurt or my skin burn (depending on the type of toxin that is there).

As much as I want MAF to work for me, I have to go by my symptoms and respect them. Rats. And I was only taking a tiny bit of the yogurt.
 

Daffodil

Senior Member
Messages
5,875
i have been feeling a little better the last 4 days. no way to tell if its from tenofovir or treating my recently discovered iron deficiency (9). i get the feeling its the iron.

will restart gcmaf in a week or 2.
 

Overstressed

Senior Member
Messages
406
Location
Belgium
i have been feeling a little better the last 4 days. no way to tell if its from tenofovir or treating my recently discovered iron deficiency (9). i get the feeling its the iron.

will restart gcmaf in a week or 2.

Hi Daff,

if your iron was low, it might mean an activation of latent virus. It's typical that you run low on iron after an infection. It's strange, compared to me, while I relapsed, my iron didn't get low. I will have a new bloodwork, this- or next week, and I'll check whether my iron is low too.

Best wishes,
OS.