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

[minimus]

I spoke to Cheney last week about my experience with GcMAF so far. I have taken 5 doses and have noticed no flu-like (IRIS) symptoms. He said that so far the people who benefit from GcMAF have a pronounced flu-like syndrome after the third dose (about 10-14 days after the first dose) that usually lasts for a week or two. He said that patients with the BB phenotype in his practice are much less likely to respond positively to GcMAF than those who are bb or Bb. Turns out I am BB phenotype, which also may explain why I am not really seeing any effect from GcMAF (flu-like symptoms followed by functional improvement). He says one's Fok-l status (FF, Ff, ff) seems so far to not be particularly relevant in predicting response to GcMAF. Overall, fairly discouraging for me.

He said he is trying to work out changes to the protocol that might lower chances of non-response among the BB phenotype patients, but this would be somewhat experimental at this point and would involve a lot of time consulting with him on the phone as well as added expense of extra lab tests. In other words, he is willing to work with his non-responder patients to see if he can get GcMAF to work, but these patients would be sort of like guinea pigs. And they would have to pay for his time and for additional testing. I suspect he will try to work this through to the best of his ability, but he admitted there is some chance that non-responders will remain non-responders regardless of protocol.

 

[davidnoakes]

Ian Wong said:
"can anyone, anyone at all, direct me to a place where i could purchase it? i contacted David Noakes but apparently he's too busy to answer my inquiries seriously. no, he always replied, but he never read my questions: "You need to research and understand GcMAF yourself. You should not rely on us. And I don't have the time." and i was not even asking about GcMAF but the shipping procedure and custom. if you dont have the time to answer inquiries, why bother putting your email n phone number? the nice tone of his site is just a facade apparently."

My reply:
You sent me six emails asking me questions that are answered on the website. I answered five, which is more than I should have done.

You shouldn't rely on us; we are a manufacturer and therefore probably biased.

Self medication is something you have to research. If you don't understand it, you shouldn't be doing it. And you thought DCA was GcMAF, which again told me you hadn't done the research.

We are not doctors; we have five biomedical scientists; we are concerned with molecules, their biochemistry, structure and how to change it. So there are questions that we are not qualified to answer and will not answer.

There are lives that can be saved. But we will save less lives if we waste time cutting and pasting bits from our own website into emails. We work pretty hard as it is.

20% of participants take up 80% of the time, to the detriment of the majority.

Please spare a thought for them.

Some suppliers insist you go through a doctor just to stop this from happening.

To answer ianwong's question, can someone please tell me of someone else that makes independently tested, genuine GcMAF?

I can't find anyone.

David Noakes

 

[InvertedTree]

Ian Wong said:
"can anyone, anyone at all, direct me to a place where i could purchase it? i contacted David Noakes but apparently he's too busy to answer my inquiries seriously. no, he always replied, but he never read my questions: "You need to research and understand GcMAF yourself. You should not rely on us. And I don't have the time." and i was not even asking about GcMAF but the shipping procedure and custom. if you dont have the time to answer inquiries, why bother putting your email n phone number? the nice tone of his site is just a facade apparently."

My reply:
You sent me six emails asking me questions that are answered on the website. I answered five, which is more than I should have done.

You shouldn't rely on us; we are a manufacturer and therefore probably biased.

Self medication is something you have to research. If you don't understand it, you shouldn't be doing it. And you thought DCA was GcMAF, which again told me you hadn't done the research.

We are not doctors; we have five biomedical scientists; we are concerned with molecules, their biochemistry, structure and how to change it. So there are questions that we are not qualified to answer and will not answer.

There are lives that can be saved. But we will save less lives if we waste time cutting and pasting bits from our own website into emails. We work pretty hard as it is.

20% of participants take up 80% of the time, to the detriment of the majority.

Please spare a thought for them.

Some suppliers insist you go through a doctor just to stop this from happening.

To answer ianwong's question, can someone please tell me of someone else that makes independently tested, genuine GcMAF?

I can't find anyone.

David Noakes

Maybe its just me but it seems that when someone is writing you asking questions for their father who has stage 4 lung cancer, calls for a little compassion rather than a typical bureaucratic reply that isn't helpful.

 

[Overstressed]

I spoke to Cheney last week about my experience with GcMAF so far. I have taken 5 doses and have noticed no flu-like (IRIS) symptoms. He said that so far the people who benefit from GcMAF have a pronounced flu-like syndrome after the third dose (about 10-14 days after the first dose) that usually lasts for a week or two. He said that patients with the BB phenotype in his practice are much less likely to respond positively to GcMAF than those who are bb or Bb. Turns out I am BB phenotype, which also may explain why I am not really seeing any effect from GcMAF (flu-like symptoms followed by functional improvement). He says one's Fok-l status (FF, Ff, ff) seems so far to not be particularly relevant in predicting response to GcMAF.

Hi minimus,

I don't know my phenotype, I received my result from redlabs.be just as: FOK low responder, BSM moderate to low. If I look at my own experience from the beginning, I improved mostly in the beginning. Minor flu-like symptoms, but I had the feeling, and that's up 'til now, that Gc-Maf works 3 days, and then it's over. I've had app. 47 injections, and my doctor has put me on one injection/month. I feel like my body has just enough from Gc-Maf, because I get terrible headaches with each injection now.

Last weeks I was coping with the flu and again not refreshing sleeps. Last friday I received my Gc-Maf, and my flu is gone today, I had a good refreshing sleep and today I feel superb. This makes me conclude that my body is not able to clean-up the infection by itself, and Gc-Maf did not to the job for me until now, and probably it will not in the future. I guess my NK-cells still don't function properly...

However, my Nagalase level was 0.7, and that's clearly normal, and might conclude me to say that Gc-Maf probably lowered my Nagalase level. We still don't know what this Nagalase level means as a biomarker.

And last but not least, I feel better than before I started Gc-Maf, I don't know whether it will stay that way when I quit Gc-Maf.

OS.

 

[Nielk]

I went to KDM this morning and asked him how about the cryptovirus and the Rubalavirus? He said that it's impossible to test for these virusses. When I asked about Dr. Enlander's immunoprop, he told me Dr. Enlander is trying to make money with it. When I asked him about IL-7 He told me trials are going on. About stemcelltherapy he told me that little is known about it, because there is too much resistance from the authorities.
I also asked if there is a link between XMRV and the recently discovered proteins in the spinal fluid, but he told me that it is too early to tell. Than I asked if GcMAF would also be useful if you are XMRV- but have low NKC, but he told me that he uses GcMAF only against XMRV, and that people with XMRV have a high percentage of NKC because of the immunoreaction... In fact my question should have been if it would be effective agains a weakened immunesystem, be he seamed bothered by so many questions and let me out. I only did the XMRV PCR and serologytest, results in about three months.
After this meeting, I have the feeling that it's still too early because too less is known...but KDM told me that XMRV is THE cause of CFS....

I am spending the whole day reading this very interesting and informative thread. I am doing this because I am probably starting GcMAF next Thursday with Dr. Enlander in NYC.
When I came to this post #866 by Spacca, I felt that I had to comment. For KDM to answer to the question of Enlander's Immunoprop - saying he is trying to make money with it is really shocking! First of all, if you know Dr. Enlander at all, he is not doing this for money!!!!!!!!!!!!!!!!He has spent his own private money on studies for this illness. He charges $20 for a month's supply of Immunoprop. I do't think he is getting rich on this. Besides, they are colleagues and friends! Are you sure Spacca that this is what you heard? It doesn't sound very professional to me and it borders on unethical.This has me very disturbed.

 

[leela]

My reply:
You sent me six emails asking me questions that are answered on the website. I answered five, which is more than I should have done.

You shouldn't rely on us; we are a manufacturer and therefore probably biased.

Self medication is something you have to research. If you don't understand it, you shouldn't be doing it. And you thought DCA was GcMAF, which again told me you hadn't done the research.

We are not doctors; we have five biomedical scientists; we are concerned with molecules, their biochemistry, structure and how to change it. So there are questions that we are not qualified to answer and will not answer.

There are lives that can be saved. But we will save less lives if we waste time cutting and pasting bits from our own website into emails. We work pretty hard as it is.

20% of participants take up 80% of the time, to the detriment of the majority.

Please spare a thought for them.

Some suppliers insist you go through a doctor just to stop this from happening.

To answer ianwong's question, can someone please tell me of someone else that makes independently tested, genuine GcMAF?

I can't find anyone.

David Noakes

Yet somehow there's time to read this thread and post a snarky comment to the person who is desperately trying to sort out options for a parent with stage 4 cancer.
Time enough to read a thread about and for ME/CFS patients, for whom in the past you have indicated your product might not be of use.

 

[ianwong]

Ian,

I'm so sorry about your father. I'm in Hong Kong and am a patient of De Meirleir's. As far as I know, he'll only give you GcMAF if you go to Belgium yourself, but please try writing to him anyway explaining your father's situation and ask if he'll be coming through Asia any time soon and if so, if it would be at all possible for him to bring any GcMAF with him--at least try that! The little I know is that he goes to Australia often and sometimes stops over in Hong Kong but I don't know if he has any upcoming trips--two weeks ago I wrote him asking about GcMAF and he confirmed that I would have to return to Belgium for him to give me more (I am on 21 shots). I'm sorry I can't be of more help. I have sent you his email addresses on private message.

thank you for your pm! i've sent him a message.

you have to do your own research because those producing and supplying gcmaf are not doing this for commercial purpose, check everything carefully on all studies made on gcmaf and since only gcmaf.eu source have been assayed and compared to yamamoto one you'd better use that one, also because you have little time and you can t go trying one or another

we are using gcmaf.eu product for hiv and hbv infection (one guy tried bgli on hiv but failed and now he is starting gcmaf.eu)

i have little time to decide, yes. i can see my dad's condition worsen every day. i'm still trying to catch up. still reading more on GcMAF.

Hi Ian,
Try Dr Bradstreet in Florida. He is now using GCMAF in his practice according to his blog and he has researched it wrt cancer. Good luck.

GP

thank you for the info. will look him up.

Ian Wong said:

My reply:
You sent me six emails asking me questions that are answered on the website. I answered five, which is more than I should have done.

Hi David,
good to see you here. first of all, i'm sorry i was rude in my last email to you. it's because you seemed curt and rude in your replies, and my reaction was out of frustration more than anything. i considered your product my dad's 'last hope' but you acted like you're selling candy or something. i emailed you the same questions again and again because you didnt even bother to read them. it's obvious you just read the first sentence and just ignored the rest.

and no, the answers are not on the website.

You shouldn't rely on us; we are a manufacturer and therefore probably biased.

Self medication is something you have to research. If you don't understand it, you shouldn't be doing it. And you thought DCA was GcMAF, which again told me you hadn't done the research.

We are not doctors; we have five biomedical scientists; we are concerned with molecules, their biochemistry, structure and how to change it. So there are questions that we are not qualified to answer and will not answer.

then said that. just say, "wish i could answer that but we dont know". it takes just as much time to type that than to type 'go read up. i have no time for your questions', right?

the first time i got confused about DCA and GcMAF was the day i first heard of them, and it was through your site. pardon me for wanting to email you right away, instead of reading your site first in its entirety.

There are lives that can be saved. But we will save less lives if we waste time cutting and pasting bits from our own website into emails. We work pretty hard as it is.

20% of participants take up 80% of the time, to the detriment of the majority.

Please spare a thought for them.

Some suppliers insist you go through a doctor just to stop this from happening.

To answer ianwong's question, can someone please tell me of someone else that makes independently tested, genuine GcMAF?

I can't find anyone.

David Noakes

 

[leela]

Ian, I have PMd you with alternate info.

 

[Spring]

He said that so far the people who benefit from GcMAF have a pronounced flu-like syndrome after the third dose (about 10-14 days after the first dose) that usually lasts for a week or two.

Yippee!!! I'm feeling some flu-like symptoms. I was starting to get concerned about Cheneys statement because I'm in my 7th week now and did not have these symptoms so far. Now I my throat is a little sore, I have a painfull lymph nod and I feel flu-like in my head. Yesterday I also had a bit of a temperature. So I hope this is it. I have the right genetics, so I hope my body knows what to do now...

 

[ianwong]

leela:
thank you! much appreciated.

to all:
sorry if this has been asked in here by someone else, but can one take GcMAF while doing radiology? my dad has meta in his pelvis, causing sharp pain on one side of his leg. he's been unable to sleep for a week now because of it, and is now on painkiller. fever comes and goes also for a few days now(blood test result is good, so fever could be from his meta/primer in his lung?). doc said to do radio for his pelvis to ease the pain.

my question is, should i just take GcMAF right away and skip radio altogether? is GcMAF the better alternative? if we decide to do radio(for 15 days straight), can my dad take GcMAF while he's on radio? or should we wait until after radio is over before starting on GcMAF? any experience/info you want to share is much appreciated. thank you!

 

[Overstressed]

HI IanWong,

sorry, I completely forgot to answer your post. I have maybe information that's worth consideration - My father was also suffering from cancer, and we also considered Gc-Maf at that time. I think he was at the same stage your father is in now, and the oncologist at that very moment told us that Gc-Maf 'would work too slow' for my father.

Take this info with you, but if you want my opinion, I would take Gc-Maf anyway, together with DCA. DCA seems to work very fast if you read the literature.

I really hope your father will benefit and gets well!

take care,
OS.

 

[Charles555nc]

I personally spoke with David Noakes over the phone and he was very pleasant/knowledgeable. But Ive read everything I could find on the internet about GcMAF before speaking with him.

He was kind enough to send me an money order form even though I accidently called him at around 11:30pm. Sorry David!

One thing I did find funny was that David told me that a certain, different GcMAF in Europe was labeled vitamin D preparation and how bad David thought was, as far as hinting towards its legitimacy. Then when I ordered the GcMAF from his website, it was labeled "saline solution" (but this is just to get it through customs without delays). Maybe they both have to label their products differently for bureaucratic reasons.

I feel about 35% better on GcMAF and I am also taking low dose naltrexone, which I couldnt tolerate before the GcMAF. The low dose naltrexone really helped with the rage I was having, but I only take it once every 3 days, until I tolerate it better.

 

[froufox]

Hi Charles555nc,

Glad to hear that u are improving on GcMAF and that it is helping u tolerate the LDN. I just wanted to ask u what symptoms were u getting from the LDN, before u could tolerate it? Thanx a lot.

 

[Nielk]

I personally spoke with David Noakes over the phone and he was very pleasant/knowledgeable. But Ive read everything I could find on the internet about GcMAF before speaking with him.

He was kind enough to send me an money order form even though I accidently called him at around 11:30pm. Sorry David!

One thing I did find funny was that David told me that a certain, different GcMAF in Europe was labeled vitamin D preparation and how bad David thought was, as far as hinting towards its legitimacy. Then when I ordered the GcMAF from his website, it was labeled "saline solution" (but this is just to get it through customs without delays). Maybe they both have to label their products differently for bureaucratic reasons.

I feel about 35% better on GcMAF and I am also taking low dose naltrexone, which I couldnt tolerate before the GcMAF. The low dose naltrexone really helped with the rage I was having, but I only take it once every 3 days, until I tolerate it better.

Hi Charles,

Thanks for sharing your experience with us.
Can you tell us how long you have been on GcMAF? In addition, at which point were you able to use LDN?

Thanks,
Nielk

 

[Charles555nc]

I will be finishing up my first month on GcMAf in a couple days. I double dosed my first two weeks, as I worried I would be a low responder. I used the LDN about a week and a half in (2-3 days after my 2nd dose).

When I took LDN before I got this bad yeast taste in my mouth-which isnt surprising as I have had an oral thrush on my tongue because of my poor immune system, but it became more noticeable. I also had increased muscle and joint pain, worse numbness, and a worse ability to concentrate. Felt pretty beat down in general.

 

[Nielk]

Hi Charles,

Thanks for your response. It sounds like the GcMAF started to work pretty quickly on you. It's great that you feel better!
I hope you are getting tested as far as your vitamin D, calcium and kidney - liver levels. Especially since you took double doses.
I am contemplating starting on it and even the regular dose scares me! I don't know yet if I'm a good responder. I am also not sure how accurate the results of those tests are.

I hope you keep improving.
Good luck,
Nielk

 

[Rrrr]

charles, when you say you took a double dose, are you saying you took 2 full cc's of gcmaf for the first week and again for the 2nd week?

if i did this, i think it would have killed me. literally. i've been on 1/5th of a dose (0.20 cc) for a few months now. when i upped it to half a dose (0.50 cc) i was very very sick for a number of days. then i went back down to 0.30 cc and still suffered a lot for a few days.

i have heard from two folks on gcmaf that they were doing well on gcmaf, and feeling better, until they added in nexavir and b12 shots.

i have not yet experienced a "doing better on gcmaf" period of time. but i was on nexavir and b12 shots for 1 month before i started gcmaf.

 

[Charles555nc]

Rrrr,

I was told by the company that .25 was a dose, so I took .5ml the first and 2nd week (1/2 cc total I think). I used an insulin needle. Tbh I wasnt surprised about the rage side effect because I had read about it on other people's experiences. Your supposed to take vitamin D and try and do a bit of exercise while taking the GcMAF (also from the company).

You should look into low dose naltrexone also. Its very cheap at compounding pharmacies if you can get it prescribed to you. I think Kdm encourages ppl to try the combo together.

 

[Rrrr]

Rrrr,

I was told by the company that .25 was a dose, so I took .5ml the first and 2nd week (1/2 cc total I think). I used an insulin needle. Tbh I wasnt surprised about the rage side effect because I had read about it on other people's experiences. Your supposed to take vitamin D and try and do a bit of exercise while taking the GcMAF (also from the company).

You should look into low dose naltrexone also. Its very cheap at compounding pharmacies if you can get it prescribed to you. I think Kdm encourages ppl to try the combo together.

hi charles,

okay, so you did 0.50 cc for each of the first two weeks. that sounds reasonable! but i guess it totally depends on what strength the gcmaf is. i'm not sure there is an industry standard yet.

i did not know KDM was encouraging adding in low dose naltrexone. i heard he was tolerating it in a few patients who did not want to stop it, as LDN was helping them. but i had not heard he was encouraging it.

anyway, i'm glad to hear the gcmaf is helping you!!!!! great!!

can you tell us in what ways you feel the gcmaf is helping you? and if you are on nexavir and b12 shots, too?

rrrr

 

[vli]

i did not know KDM was encouraging adding in low dose naltrexone. i heard he was tolerating it in a few patients who did not want to stop it, as LDN was helping them. but i had not heard he was encouraging it.

He certainly didn't encourage me. When he gave me GcMAF he knew I'd already been on LDN for two years.