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

[hixxy]

I briefly discussed GcMAF with my GP today and he wasn't overly interested in persuing it.

Does anyone know of any doctors in Australia that ARE prescribing or at least supervising GcMAF use other then Dr Don Lewis, Melbourne?

I know Dr Lewis has a trial of 20 patients doing MAF yoghurt at the moment. The clinic wasn't able to elaborate on when this number will grow or if the yoghurt will be made available to non-patients.

 

[Undisclosed]

A recent investigation has revealed that the forum member davidnoakes, who stated that he was a representative of a European company that sells GcMAF, appears to have been using multiple accounts on this forum. These 'sockpuppet' accounts were used to post links to the GcMAF business and to repeat claims concerning alleged failings of rival companies' products.

We therefore feel that we should let members know that the accounts of 'freda' and 'tobermory' were using the same IP address as davidnoakes' account, so that they can take this information into account when asssessing davidnoakes' claims and the relative merits of the various rival companies and their GcMAF products.

We would also like to add that we consider 'advertising' to include providing direct links to a business a member owns or is an employee of, promoting the business on the forum in posts, or calling attention to a product for the purpose of financial gain. In order to keep the forum free of advertising and self-promotion that is of benefit to business owners, we will ban a business owner or employee regardless of whether or not the information may be of benefit to our members. Davidnoakes falls into this category as he has provided numerous links to the GcMAF business for which he works, has promoted the business on numerous occasions in numerous posts under his own name, and has apparently been using sockpuppet accounts.

We do appreciate that there may be some value to our members in reading information posted by representatives of commercial interests. We are therefore considering how we can provide a 'marketplace' feature where such representatives can advertise their products and services and discuss them with members in a transparent way. However, until we have prepared the guidelines necessary in order to enable this new service, all advertising and promotion of products and services by commercial representatives is not permitted on these forums, as explained above.

 

[Ronan]

Interesting! Doesn't surprise me though. He was continually posting outlandish claims with no data to back it up after repeated requests from some members. It such a shame that people try to take advantage of vulnerable people like this who are desperately trying to figure out the best course of action to help their situation.

 

[Spring]

A recent investigation has revealed that the forum member davidnoakes, who stated that he was a representative of a European company that sells GcMAF, appears to have been using multiple accounts on this forum. These 'sockpuppet' accounts were used to post links to the GcMAF business and to repeat claims concerning alleged failings of rival companies' products.

Thank you Kina! Great job whoever found out about this!

We all know we must be carefull who to trust. Looking at postings in different subjects, how long one is a member etc, but you can't control anyone. And this is a very important one. It made me doubt about my own source of Gc Maf, but never liked the Noakes because of his agressive approach. Agressive promotors should always be distrusted.

I like the idea of a separate place for marketing stuff. We should benefit from new products and there is nothing wrong with advertising them, as long as we know who is behind it.
New members who claim to have been cured from a certain product or who are promoting one agressively should be investigated.

Best regards,
Spring

 

[Ronan]

I bumped up my GcMAF dose to the full 1ng again a couple of weeks ago and have noticed an inflammatory response from doing this. Worse this week. I will be reducing the dose again next week. I was wondering though, i know a big inflammatory response is bad but is it not a good thing when you have a slight inflammatory response? In my head it means its doing something????

 

[Sushi]

I bumped up my GcMAF dose to the full 1ng again a couple of weeks ago and have noticed an inflammatory response from doing this. Worse this week. I will be reducing the dose again next week. I was wondering though, i know a big inflammatory response is bad but is it not a good thing when you have a slight inflammatory response? In my head it means its doing something????

Hey Ronan,

As you know, I'm no expert but I have also taken different doses with different results. Here is what I am thinking now: Any dose of GcMAF is going to bring some inflammation, whether you feel it or not. As soon as you activate a huge number of macrophages the immune system will "do its job"--part of which is an inflammatory response which can have uncomfortable side effects (think fever) but is a necessary part of the job.

But, in my experience, if you can feel the inflammation with GcMAF, it may be too much. My lab tests show that even when I was taking a low dose and was not feeling the inflammation, it was there--IL 8 was elevated. When it gets to the point where you can really feel it, the inflammation, which is usually part of the problem in ME/CFS patients anyway, may be doing more harm than good.

Just my thoughts. Nagalase seems to creep downwards even at doses where you don't feel the inflammation. This is a really good question though: how much inflammation is too much?

Best,
Sushi

 

[Rrrr]

sushi, nagalase creeps downward? you mean once we stop gcmaf? do we know this for sure? -- rrrr

 

[Rrrr]

my update: i was doing GREAT on gcmaf injectable (0.10 cc per wk), and then i started to be able to walk outdoors and bike indoors (stationary bike). and i over did it. now i'm in a horrible crash. been 1 month already that i have lost all gains and have been near-bedridden (again -- after 23 years, this is getting very old!!!!!!!!!!!!!!!!!!)

rrrr

 

[Sushi]

sushi, nagalase creeps downward? you mean once we stop gcmaf? do we know this for sure? -- rrrr

It seems to creep downwards for most while you are taking GcMAF. I don't know if anyone knows what happens if you stop and don't take a maintenance dose.

Sushi

 

[Rrrr]

oh, sorry, i was thinking you meant creep back upward. my mistake. i had it all backwards in my head. sorry.

 

[Spring]

My nagalase was measured a few weeks after my last injection and than 3 months later. It stayed te same without a maintenace dose.I'm within ref range. I'm not given maintenance, probably because my c4a is skyhigh (above 12.000) and because I'm very sick.

 

[Daffodil]

spring....may i ask how long you took the gcmaf and what dose you used?

so the gcmaf didnt help you at all?

 

[Daffodil]

i find that after each gcmaf shot, i am sicker for about 2 days, better for 2-3 days, then sicker for another 2 days. i really wish i could take it every 5 days instead of 7. perhaps things will get better when i increase to 0.25 again.

i wish my brainfog would improve a little. its really hellish.

i am also concerned about my 1,25-vit D levels going too high. my doc said it wasnt high enough the last time to be too concerned about (it was higher than normal, though). i will retest soon.

i heard some people had to stop gcmaf because of this.

 

[Overstressed]

Hi Daffodil,

I felt immediately better the same day, the day after, and on the third day, I felt tired, without any energy. From day 4 onwards I felt an increase in histamine. My bloodwork from last week showed the lowest vit-D value, nl. 21. No wonder I feel bad. I have the feeling Gc-Maf did my vit-D levels go down. Unfortunately, I don't have any figures on my 1,25-vit D levels.

Best regards,
OS.

 

[Daffodil]

overstressed....you must test both, i think.

i still dont understand the vitamin D thinig. if my 1,25 - D goes down, maybe it will be a good sign but its going up

 

[whu-1]

Hi guys ,
Im interested in people 1st hand experiences on Gcmaf products , would you say this is a fair round up

Im guessing there are no cures or close to cures on Gcmaf or maf314

Most people find it hard to tolerate either maf 314 or Gcmaf

The small groups that can tolerate it over 6 months to a year show improvements ..small in the bigger picture but great personally ..

Is there still a spread sheet running or a poll ?

Personal Ive bean on maf 314 for 6 months .i think with small steps to getting better , but it so hard to tell with small improvements spread over a long time .

Will be on it for at 6 months more .as I have it all ready .

I seam to be able to tolerate high doses of maf314 with out side affect, which I think is very rare . witch Im very grateful for

For me personal b 12 injection daily are a must to clear brain fog , and I use mag. oral spray and cream 4 time a day when need

Unfourtunealy I can only get vit d testing were Im at , so I have no data either way how im doing .



p.s the guys that have bean following the thread , dose it seam to matter if your from Europe or the state regarding Gcmaf effectiveness ?

cheers for any response ..just trying to get my head round how ppl are going .

Any one got question there like to ask me ?

 

[Sushi]

Hi guys ,
Im interested in people 1st hand experiences on Gcmaf products , would you say this is a fair round up
Im guessing there are no cures or close to cures on Gcmaf or maf314
Most people find it hard to tolerate either maf 314 or Gcmaf
The small groups that can tolerate it over 6 months to a year show improvements ..small in the bigger picture but great personally ..
Personal Ive bean on maf 314 for 6 months .i think with small steps to getting better , but it so hard to tell with small improvements spread over a long time .
Will be on it for at 6 months more .as I have it all ready .
I seam to be able to tolerate high doses of maf314 with out side affect, which I think is very rare . witch Im very grateful for
cheers for any response ..just trying to get my head round how ppl are going .

Hi whu,

I've been taking injected GcMAF for about a year and have had a lot of improvement--maybe 30%. Some I know have had more, yes, some up to 70% functioning and leading fairly normal lives.

The statistics I have been given for injected GcMAF are that about 65-70% respond with some degree of improvement--more or less for each individual. Some don't respond at all and some don't tolerate it at all. This may be due to certain co-infections.

We are no longer keeping up with a spreadsheet so anything you find there is unlikely to be current. It seems true that you need to take it for a long time. People I know started getting the most improvement after 6 or 7 months. Also, many have switched to lower doses to prevent inflammation.

I can't comment on MAF314 but I am really glad you are doing well on it.

I don't think either of these are going to be a cure but are proving very helpful for a pretty good percentage. It is a tricky protocol to get dosing and other supporting medication and supplementation right, so I'd advise doing it with the help of an experienced doctor.

Thanks for posting. Let us know how it continues to go for you.

Best wishes,
Sushi

 

[Daffodil]

hi sushi. i had the idea that your improvement was a lot more than 30%. may i ask why you estimate only 30?

i am going through a difficult time. i took a higher dose of gcmaf this week, 0.18 instead of 0.15. its the 3rd day and my brain fog is unbelievably horrible. also, i feel a little toxic, almost like i did with the 0.25 dose.

however, if i stay on the 0.15 dose, i am virtually certain my brain fog will not improve. i have some energy improvements at that dose but it did not touch the fog.

i am trying to understand why my brain has been giving me such intense problems, throughout my illness. it is unbareable.

i am scheduled for a sinus CT and i am still undecided about further gut testing.

i cannot help but wonder if i should just push through this brain inflammation and remain at 0.18 or 0.2, despite the fact that KDM's patients are telling me not to.

dr. enlander mentioned a "herx".....?

i actually was supposed to take 0.15 this week and not 0.18..i was supposed to increase next week but was impatient. blahhh

thank you

 

[sprankel]

Daffodil: With the GcMAF it is not that a higher dosis works better. It's about finding the right dosis for you.
Some just need a little amount. Sometimes the improvements take some time.
I heard some patients didn't notice anything until they felt better after 6 months.
So your brainfog can still improve later on.
Just listen to your body.

Good luck!

 

[Daffodil]

thank you, sprankel

regarding finding the right dose...i am confused because my doctor seemed to imply that eventually, he wants me to slowly move the dose upwards...so perhaps a higher dose is better in some respects?

xoxoxo