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

[lobba123]

one guy at questioing aids got hivrna und and cd4 rise on injections every 3 days (never checked his nagalase).........
by the way dr bradstreet is curing austism too and there is a research on anaglase in US for cancers which have no biomakers (brain cancer, melanoma), dont remember the university.study is funded by donations, not from drug industry of course

we have to wait for data to be published as sushi said, all the rest is just qua qua qua...and what do the qua qua have to offer...nothing just confusion before the data is published

Hi all,

I guess everyone knows and reads the blog of Jamie Deckoff-Jones ? If not, you can find it here:

http://treatingxmrv.blogspot.com

If yes, there's this comment on her last blog ('Null Result'), more particularly from the well known Phd Michael Snyderman, which 'worries' me a bit. Let me post a part of his comment here:

" GcMAF. Yamamoto is not a physician and is probably not a PhD. He appears to have been a research technician in Philadelphia who set up the FOR PROFIT "Socrates Institute" and invented the term "nagalase." His publications demonstrate ups and downs of "nagalase" in patients with HIV and cancer in response to treatment with GcMAF yet never, ever supply any actual clinical data to prove benefit. He is said to believe based on this poor data that he can cure HIV and cancer so I would doubt any claims that GcMAF can benefit CFS. "

I don't want to upset anyone, not more than needed, but have we seen any objective measurement that Gc-Maf is of benefit to our health ? I have received more than 60 injections by now, my labs are improving, i.e. just regular bloodtests. BUT, I don't know if I can attribute that to Gc-Maf... I didn't have any of the 'fancy' bloodtests, like the Natural Killer function test, because I think this would proof my health was getting better. So, no objective measurement. Anyone ?

Yes, we have Nagalase...but, is that a biomarker ? There are examples within the HIV community where Nagalase goes down, and viral load even increases...


OS.

 

[Advocate]

Hi all,


If yes, there's this comment on her last blog ('Null Result'), more particularly from the well known Phd Michael Snyderman...

"Michael C Snyderman, MD
Hematologist, Internist, Medical Oncologist
Internal Medicine
Sub-specialties: Hematology & Oncology, Hematology, Medical Oncology
View ABMS certification
Special Expertise:
Adult T-Cell Leukemia-Lymphoma

Dr. Snyderman is affiliated with 4 hospitals

Temple University School of Medicine
Medical Oncology, Completed: 1967

Appointments:
SUNY AT BUFFALO SCHOOL OF MEDICINE & BIOMEDICAL SCIENCE, BUFFALO, NY: 1978 present

 

[Overstressed]

"Michael C Snyderman, MD
Hematologist, Internist, Medical Oncologist
Internal Medicine
Sub-specialties: Hematology & Oncology, Hematology, Medical Oncology
View ABMS certification
Special Expertise:
Adult T-Cell Leukemia-Lymphoma

Dr. Snyderman is affiliated with 4 hospitals

Temple University School of Medicine
Medical Oncology, Completed: 1967

Appointments:
SUNY AT BUFFALO SCHOOL OF MEDICINE & BIOMEDICAL SCIENCE, BUFFALO, NY: 1978 present

Sorry Advocate, my mistake!

Best regards,
OS.

 

[Forebearance]

GcMAF beginner's doses

Hi you all!

I decided to try some GcMAF, with caution.

I've been practicing mold avoidance for more than two years, and it has made my immune system hyper reactive to even minor irritants. Plus I usually need smaller doses of treatments than most people.

So I started with 1/10th of a dose. It was a drop. I rubbed it into the skin on the back of my hand. I had a strong reaction to it, with many of the symptoms that others have reported on this thread. It was clearly way too much for me.

For my second dose, I took 1/100th of a dose (approx.) and again rubbed it into my skin. It still produced symptoms, but this time they were more manageable. This may be a good dose for me.

We're supposed to feel slightly flu-ish for a few hours. So I am aiming for a dose that produces that level of symptoms.

 

[janey]

Good luck, Forebearance. I hope it works for you.

Janey

 

[lobba123]

i dont think that putting gcmaf on the skin has any value, it is not liposomes and can t enter the skin or blood flow......maybe it is better to use maf if immune system is so bad

Hi you all!

I decided to try some GcMAF, with caution.

I've been practicing mold avoidance for more than two years, and it has made my immune system hyper reactive to even minor irritants. Plus I usually need smaller doses of treatments than most people.

So I started with 1/10th of a dose. It was a drop. I rubbed it into the skin on the back of my hand. I had a strong reaction to it, with many of the symptoms that others have reported on this thread. It was clearly way too much for me.

For my second dose, I took 1/100th of a dose (approx.) and again rubbed it into my skin. It still produced symptoms, but this time they were more manageable. This may be a good dose for me.

We're supposed to feel slightly flu-ish for a few hours. So I am aiming for a dose that produces that level of symptoms.

 

[Forebearance]

Thanks, Janey! It seems to be producing some good effects already. In addition to the inflammation.

Hey lobba123, you might be interested to know that I am using GcMAF from gcmaf.eu.

I wish I had a baseline C4a test done before beginning this, but I am not near my doctor's office. Joey, I think the C4a and C3a tests are supposed to be done through Quest, which can send them to National Jewish Hospital in Denver if you request it.

Now that I've finally caught up on reading this thread, I want to reply to some posts from way back.
Sphinx on roundabouts, breast pain is one symptom I get when I am being poisoned. Leonora, pins and needles and burning skin are symptoms I get when I am being poisoned. I would suggest that the GcMAF might be making you more sensitive to toxins. You might want to check your environment, or check to see if you could have Lyme disease.

I know that the increased inflammation that the GcMAF has caused me (starting the day after I took it) has made my reaction to toxins skyrocket. Now I have to take doxycycline for a while and that is making things even worse.

The bottom line for me is that GcMAF may help me a lot in the long run, but in the short run I may not be able to stand any buildings while I do it.

Garcia and vii, in a similar vein I would propose that maybe the inflammatory effects of GcMAF build up over time if the person who is taking it is being exposed to some toxins the whole time.

Forbearance

 

[mojoey]

Forebearance,

Your experience with gcmaf is very telling. I was almost 100% sure that it would raise reactivities since it raises inflammation (they're one and the same!) So having the dreaded HLA-DR myself, I would never even attempt GcMAF unless my inflammation was reduced first by another medication (and LDN is not that medication for me) or if I was living in a trailer in the middle of nowhere. But that's just me, and many people that respond well to GcMAF might not have the HLA-DR that makes them react to everything.

If Ampligen were available as a generic, this would be such an easy call. Ampligen + GcMAF, in a staggered fashion. Take ampligen first, wait until th1/th2 are rebalanced, then add in the GcMAF while remaining on a stabilizing dose of ampligen. Cost-wise, it probably would be the same since you could probably afford to take a lower dose of GcMAF anyway while on ampligen (since ampligen has broad spectrum antiviral properties too).

 

[lobba123]

whatever the gcmaf it must be injected, any substance laid on skin cannot enter blood flow, only liposomals enter the skin

even assuming some got under the skin, which i think not posible, that would be such a low quantity to be of no therapeutic use.better solve the inflammatory state another way before gcmaf

Thanks, Janey! It seems to be producing some good effects already. In addition to the inflammation.

Hey lobba123, you might be interested to know that I am using GcMAF from gcmaf.eu.

I wish I had a baseline C4a test done before beginning this, but I am not near my doctor's office. Joey, I think the C4a and C3a tests are supposed to be done through Quest, which can send them to National Jewish Hospital in Denver if you request it.

Now that I've finally caught up on reading this thread, I want to reply to some posts from way back.
Sphinx on roundabouts, breast pain is one symptom I get when I am being poisoned. Leonora, pins and needles and burning skin are symptoms I get when I am being poisoned. I would suggest that the GcMAF might be making you more sensitive to toxins. You might want to check your environment, or check to see if you could have Lyme disease.

I know that the increased inflammation that the GcMAF has caused me (starting the day after I took it) has made my reaction to toxins skyrocket. Now I have to take doxycycline for a while and that is making things even worse.

The bottom line for me is that GcMAF may help me a lot in the long run, but in the short run I may not be able to stand any buildings while I do it.

Garcia and vii, in a similar vein I would propose that maybe the inflammatory effects of GcMAF build up over time if the person who is taking it is being exposed to some toxins the whole time.

Forbearance

 

[Forebearance]

Oh, Sphinx and Leonora, I had another idea. Maybe we are feeling poisoned because some critters are releasing toxins as they are being killed by the more active immune system. I've been drinking detox tea and it has been helping.

 

[Sushi]

Oh, Sphinx and Leonora, I had another idea. Maybe we are feeling poisoned because some critters are releasing toxins as they are being killed by the more active immune system. I've been drinking detox tea and it has been helping.

I also have to do a lot of detox therapies while on GcMAF--FIR, epsom salts baths and other things. What you say makes sense to me.

Sushi

 

[sphynx on roundabouts]

Hi!
Does anyone know if very severely affected people could use FIRs on a start very low and slow basis? I have bad mcs that has just become run-away mcs since starting new antibiotic and am desperate
to make some improvement.

I saw a blanket FIRS that can be used while lying down, was wondering if I should try it. I cant use detox teas as I have bad diarrhea despite all dietary adjustments so thats not an option at the moment.

Good luck to all!

 

[Sushi]

Hi!
Does anyone know if very severely affected people could use FIRs on a start very low and slow basis? I have bad mcs that has just become run-away mcs since starting new antibiotic and am desperate
to make some improvement.

I saw a blanket FIRS that can be used while lying down, was wondering if I should try it. I cant use detox teas as I have bad diarrhea despite all dietary adjustments so thats not an option at the moment.

Good luck to all!

Can you try this FIR blanket before purchasing? I needed to start very low and slow with FIR and I think most with ME/CFS would need to also. I think I started with about 10 minutes on a very low setting.

Hope you find it helps you.
Sushi

 

[mojoey]

I would also get one of those portable FIRs where you lie down, as opposed to sit up. That would make a big difference with tolerability since it worsens OI

Sphynx--are you talking about the Biomat? I've heard good things about that. The one I got was actually a collapsible half dome with your neck sticking out and a fan blowing the hot air from your feet. It was about $500. In theory the combination with that and a biomat would be best since with the dome your backside doesn't get any exposure to the IR

 

[willow]

Hi!
Does anyone know if very severely affected people could use FIRs on a start very low and slow basis? I have bad mcs that has just become run-away mcs since starting new antibiotic and am desperate
to make some improvement.

I saw a blanket FIRS that can be used while lying down, was wondering if I should try it.

Sphynx, the FIR blankets are made from plasticised materials. I've got MCS and hadn't factored this in when I bought the blanket. many times I heated it, aired it, got my other half to use it and it stil kicked out high VOCs when on. Maybe try one before you buy?

 

[leela]

Mojoey--are you MCS-y? Did your half-dome stink? I have been researching options for years but fear The Stink as I am sensitive to
pretty much everything new.

Someone was kind enough to loan me their half-biomat for a year (I've got friends with a full one I lie on when visiting them too)
and I must say, they are *terrific*. It is one of the only MLM-scheme products that is actually for real great. You can set it really low
(I like it a bit high) and control how much time you spend at which temp, etc. Most heat I cannot tolerate at all or I get utterly debilitated. The FIR is totally different.

It ain't a cure, but it's one of my favorite feel-better tools. Wish they didn't cost a small fortune or I would definitely get one.
The half ones are like $800 and the fulls like $1400. If it wasn't set up as MLM they might be cheaper by now.

 

[Sushi]

Mojoey--are you MCS-y? Did your half-dome stink? I have been researching options for years but fear The Stink as I am sensitive to
pretty much everything new.

Someone was kind enough to loan me their half-biomat for a year (I've got friends with a full one I lie on when visiting them too)
and I must say, they are *terrific*. It is one of the only MLM-scheme products that is actually for real great. You can set it really low
(I like it a bit high) and control how much time you spend at which temp, etc. Most heat I cannot tolerate at all or I get utterly debilitated. The FIR is totally different.

It ain't a cure, but it's one of my favorite feel-better tools. Wish they didn't cost a small fortune or I would definitely get one.
The half ones are like $800 and the fulls like $1400. If it wasn't set up as MLM they might be cheaper by now.

Hi Leela and others,

I also use a BioMat. I got one that had been used for demo at a health fair and though it was in new condition, the price was reduced. I got it from a BioMat distributor in Florida and they let me try it for several weeks before buying it. As Leela says, it is a great "feel-better" tool.

Sushi

 

[sphynx on roundabouts]

Thanks Mojoey, Leela, Willow, Sushi and Forebearance for sharing information that is very helpful to me. Things are extremely bleak for me at the moment and it made me smile so much that someone thousands of miles away is sharing info to help preserve the hotness of a sick stranger's ass - thanks Joey! My buttocks appreciate the tip/trick on how to maximize the heat in the FIR.

The FIR blanket I was thinking about is listed on Dr Myhill's website, it's like a shiny sleeping bag (firzone.co.uk). Thanks so much Willow for letting me know about the kick of the dreaded VOCs. :mask: Do you think it would help to air and outgas the FIR blanket for a few weeks and then when using it to place a cotton/wool blanket over the top to dampen the rising chemical smell (so that just the head is sticking out over the top of the FIR and the covering blanket)? Are you able to use it at all? I really though it would be ok since it was on Myhill's site but I guess not. Sorry you had such trouble with it (Btw, just in case you're interested Willow, someone mentioned that the Biomat did not need any outgassing)

Thanks all for mentioning the biomat too. I'm confused about how people use them. Do they only work when the FIR slsment is switched on? Considering the risk of re-contamination if the sweat is not washed off after FIRs I don't really understand how people can use them for sleeping on all night.

Some of you mentioned they the biomat is a really nice feel good item. Can you say anything more specific about this?

Sushi, had you been using it prior to commencing GcMAF adn did you use it throughout MAF?
I wonder can FIR be used when there is inflammation in the body? My C4a had been normal before MAF and became elevated as if by helium balloon during and after MAF so I'm wondering if FIR could be beneficial - God know's I have plenty to detox. If anyone has suggestions on how to prize the C4a down from the ceiling I'd love to know.

Leela, I hope you don't mind me asking but what kind of difference do you notice between using the small one and the regular sized one? Do you ever sleep on it all night and if so, do you have the FIR switched on or off? Do you think a bedbound person could lie on it all the time?

I know these product will not cure anything but I am looking for ways to improve my health in anyway therefore I am interested in things that may be able to move me up a step or three on the healing ladder. After many months on GcMAF adn many years under a CFS specialist I now discover I have tick-borne infections. I'm not tolerating the antibiotics very well so I'm desperate to find complimentary or alternative routes.

Thanks to all for reading,
Sphynx :In bed:

 

[ukxmrv]

Hi Sphynx,

I've not tried the blankets but I have tried a FIR sauna. The effects were terrible for me because I stopped sweating over 10 years ago and have a lot of trouble with heat. It was really unpleasant and got worse over time. I never sweated and I found the heat as bad as ordinary heat.

I did hear of one other person who did start sweating again after repeated FIR's so I did persevere.

Good luck with the blanket.

 

[leela]

Hi Sphynx,

The biomats big and small are different only in that the small one goes from about neck to butt, (depending how tall you are)
and the big one is full-body. I would totally have a full-body one if I could afford it. Forget the stupid overpriced "pillow", totally useless.

I have never been on a brand new one, but the newish one my friends have doesn't smell one bit. (I am very MCSy.)
You can buy or make a little felt/cotton/whatever pad or use a towel to put atop it for sweating (which I do not when I use it, but I'm under regular blankets, not the FIR blanket.)
For the small unit I had, I jut slipped it into a large flannel pillow case, which I could remove for washing.

I sleep on it often in the cooler months and it really helps me sleep more deeply. It is not recommended to sleep with it on high
(which does make sleep unpleasant, anyway.) The only negative about sleeping with it is that it is quite hard--as it is filled with jade and amethyst--and heavy to move out of the way if you decide in the middle of the night you don't want to be on it anymore due to its hard and rigid nature.

I like to start with it really warm, which makes me nice and sleepy, and then turn it down for sleeping all night. I don't do well with heat in general, but for some reason with the biomat it is totally welcome. Different kind of heat. When it is on low, you don't even really feel the heat, but the FIR is penetrating without changing your core temperature.

As I said before I do not tolerate heat well at all, but for some reason the biomat heat is gorgeous. When you get on it you immediately relax and ground right down, as if the weight of the thing underneath you were having an effect. It is a lovely deeply relaxing and grounding experience for me. It makes a twenty minute nap feel like two hours worth of sleeping