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

Messages
85
Location
USA
Nabo I suspect that this is because Prof De Meirleir is in Australia at the moment (unless he's back already). What I did is I wrote an email addressed to Prof De Meirleir but sent it to the general email address. At the top I wrote "Kindly forward this email to Prof De Meirleir". I think they must have forwarded it to him because the response I got was my same email, with his comments next to my various questions written in a different colour - I'm almost certain they were his comments.

Hi fifla4!!!!!!!!!!!!!!!!!!!!

He is back from a trip around the world in one week. Spoke to him today. Hope you are okay. How is the rice syrup tasting? Is that more like a sweetner? A little off topic probably. Take care.
 

vli

Senior Member
Messages
653
Location
CA
For the one person I know who lives outside of Europe, he supplied enough GcMAF to probably cover the whole treatment.

Just wanted to say I live in Asia and KDM gave me 40 vials, total costing 1400E (40 x 35 E).
 

Ronan

Senior Member
Messages
122
So i just found out the name of the Acne medication i took just before the ME started. It wasn't Accutane after all, i had Dalacin T which seems to be an anti bacterial cream from what i just read and also Minocin SA which is an antibiotic, primarily bacteriostatic (stops bacteria to reproduce) and is believed to exert its antimicrobial effect by the inhibition of protein synthesis. Anyone heard of these in relation to ME causes?
 

leela

Senior Member
Messages
3,290
OMG I used to get Dalacin T from out of the US and use it for zits! I had totally forgotten about it!

It was years and years later that I got diagnosed, but....during the Dalacin time (this is after a youth rife with ABX use) I was working in a place where I had prolonged occupational exposure to a multiplicity of chemicals and particulates in huge amounts 60+ hours a week.

I then got hepatitis A (I don't eat seafood) which took me down for seven weeks. Once out of the chemically laden job, I continued to push myself for another number of years, exhausted and migraining all the time, thinking it was "just me." It wasn't until I got Giardia from a trip abroad that I went down and stayed down and got diagnosed. I then discovered I had 175 times the reference range for lead.

All this to say in my case it likely was not the Dalacin by itself (I didn't use it too much, as I just had random pimple attacks) but it could have been a factor in a whole picture:
-overuse of ABX as child
-severe overexposure to chemicals and particulates
-landlord's tenting of my house for termites
-severe mental and physical overwork
-rodent infestation in later house where I was finally diagnosed (mice and packrats)
 

leela

Senior Member
Messages
3,290
I know I'm way off thread here, but I have to add this: At the rodent house, even though I told my landlord (a friend) not to use poison in my house, he snuck in when I was travelling and put poison around without telling me, thinking I'd never know. I came in from a long long oveerseas flight and went straight to bed.

Upon arising in the a.m., I turned down the covers, and there were little green poison pellets and rat poops in the sheets I had been sleeping in all night:eek:

For months later I would find poison hidden by the packrats, like behind books in the bookshelf. Packrats are smart, and they know how to say Frak You!!

I do have to wonder if I had so overdosed my immune system previously that living (and apparently sleeping) with rodent leavings was the vector for XMRV.
 
Messages
5
Indeed Dps Mr Noakes post is so misleading..so misleading..a greater seller tho.

Things that do not even match on his site

He says that he is getting stunning results "

Breast cancer with bone and lung metastasis

Woman age 67. [blah blah]. She dropped it all to take just our GcMAF on its own. In 7 weeks she was clear of symptoms, breathing well, her pain gone. She has good energy levels, her whole life back. She will complete the 22-25 week course of GcMAF.

Update after clinical tests 8th July, 10 weeks in: The fluid in the lungs from her lung metastasis has diminished from 1,5 l to 1 l and her cancer marker Ca 15-3 has diminished from 268 to 193 during GcMAF treatment.

SO MR NOAKES WHAT IS HAPPENING? WE ARE IN JANUARY WHY NO UPDATES?

Pancreatic cancer with liver metastasis

She had pancreatic cancer of the neuroendocrine type with liver cancer secondaries. She had pain in her stomach and abdomen so bad she was on morphine. Now, after 7 weeks, she has no symptoms, no pain, gave up the morphine and is a happy active person. She too plans to continue the GcMAF for the full course.

SO MR NOAKES WHAT IS HAPPENING? AGAIN NO UPDATES..

Ovarian and lung cancer

I first contracted cancer in the form of a granulosa cell tumour in 2005. [blah blah]. After that scan in January I was told the chemo had failed, my 5 tumours were still growing, given Tamoxifen hormone, told I had between 3 months and 2 years left to live, and sent on my way. I started taking Gc MAF at the age of 56 on 16th May 2010; [blah blah].On the 21st Oct I had another scan; the improvements continued; the secondaries appeared to be merely specs, or scar tissue, and the pelvic tumour had shrunk to 3.5 cm

I will keep you updated. But I am over the moon and feel my old self again.
THE FACT IS "42% of tamoxifen-treated patients experienced clinical benefit, defined as complete or partial response, or disease stabilization lasting at least 6 months. http://annonc.oxfordjournals.org/content/14/9/1391.full"
SO THE ONLY PEOPLE YOU REPORT ARE FROM MAY JUNE LAST YEAR (did you even do your gcmaf then?) AND THEN TAKE CREDIT FOR SOMETHING THAT CANNOT BE CHECKED

SO YOU SAID YOU HAVE 30 PATIENTS BUT NO DESCRIPTIVES OF ANY RECENT RESULTS EXCEPT FOR ONE THAT ALSO STARTED TAMOXIFEN AT THE SAME TIME

"We can put you in touch with all our patients, 30 so far." REALLY?????? I WILL BE IN TOUCH SHORTLY MR NOAKES, ANY CFS PATIENTS?

ALSO ON YOUR SITE:

Independent longevity assays of our GcMAF:

"Badly kept" assay: 7 degrees in frequently opened freezer, shots removed by needle: Good activity after 4 weeks, nearly zero activity after 8 weeks. 11th Feb 2011 THIS IS EXACTLY THE PROBLEM !!!!!!!

THIS IS WHAT EVERYONE DOES: TAKE A VIAL AND TAKE SOME SHOTS FROM IT (BUT FOR YOU IT IS A" BADLY KEPT ASSAY") YOU ARE SUCH A RIDICULOUS MAN

SO ONLY THE FIRST SHOT OR TWO IF YOU RECEIVE A FRESH SAMPLE MADE RECENTLY WORKS (PERHAPS).. THAT MAKES IT VERY EXPENSIVE!!!!!!!!!!!

"Well kept assay" at +4 degrees in fridge: reduced, but still good activity at 8 weeks. 11th Feb 2011 REDUCED WHAT THE F--- MEANS REDUCED AND "GOOD" IS 90% REDUCED JUST "REDUCED"....SO A WELL KEPT ASSAY IS A VIAL YOU DO NOT USE.. AND DO NOT WITHDRAW SHOTS FROM..
 
Messages
5
I have cut and pasted pages of your sites in cases you change them

Participant's progress
Below are the stories of patients who are using GcMAF. We're compiling this information right now. More to come.

All patients who participate will have access to extended patient resources such as a forum, treatment strategy information etc.

Our aim with this project: To make GcMAF available to the public. It has been used in studies for years, but no institute has made it available to more than a selected few. We hope to help as many people as possible and to collect their status reports in order to build the case that GcMAF is a cure for various diseases.

Most of the longest standing patients on our GcMAF are from only 7 weeks in. But

Breast cancer with bone and lung metastasis

Woman age 67. Initially she had breast cancer for 16 years held at bay with vaccines, then better with LDN , anti-hormone treatment, DCA and other complimentary treatments..

But finally she ended up with metastasies (secondaries) on her ribs, other bones and in her lungs.

She had fluid on her lungs, breathing problems, pain in her bones and was on anti-oestrogen too.

She dropped it all to take just our GcMAF on its own. In 7 weeks she was clear of symptoms, breathing well, her pain gone. She has good energy levels, her whole life back. She will complete the 22-25 week course of GcMAF.

Update after clinical tests 8th July, 10 weeks in: The fluid in the lungs from her lung metastasis has diminished from 1,5 l to 1 l and her cancer marker Ca 15-3 has diminished from 268 to 193 during GcMAF treatment.

Pancreatic cancer with liver metastasis

She had pancreatic cancer of the neuroendocrine type with liver cancer secondaries. She had pain in her stomach and abdomen so bad she was on morphine. Now, after 7 weeks, she has no symptoms, no pain, gave up the morphine and is a happy active person. She too plans to continue the GcMAF for the full course.

Ovarian and lung cancer

I first contracted cancer in the form of a granulosa cell tumour in 2005. After 2 operations and 3 months of chemo by January 2010 it had reached stage 4 and had spread from my ovaries to my lungs. After that scan in January I was told the chemo had failed, my 5 tumours were still growing, given Tamoxifen hormone, told I had between 3 months and 2 years left to live, and sent on my way.

I started taking Gc MAF at the age of 56 on 16th May 2010; the only feeling or side effect I have from GcMAF is I felt almost from the beginning that I had my old energy back and was feeling much better and fitter in myself. After 8 weeks of taking only GcMAF and Tamoxifen I went for a scan. This showed all tumours had shrunk, the four in my lungs were now hardly noticeable and that the aggressive tumour in my pelvis had shrunk from 7.4cm to 4.1 cm. This is a significant decrease in size.

The stand-in consultant was very excited, and said these were excellent results. As I did not know her, and she did not ask, I did not tell her why.

On the 21st Oct I had another scan; the improvements continued; the secondaries appeared to be merely specs, or scar tissue, and the pelvic tumour had shrunk to 3.5 cm

I will keep you updated. But I am over the moon and feel my old self again.

Gail in London.

We can put you in touch with all our patients, 30 so far.

Of the first 5 cancer participants, 3 have quite stunningly good results already, as do both aids participants. We have not had success with people over 67.

But we are only 10 weeks in, and our average patient 4 weeks in.

What have we learned?

Yamamoto cured 22 people shortly after he first made GcMAF in 1992. Recently he began again and has now cured over 100 people. But in every case he takes young, fit people with early stage cancers.

We believe we can show that GcMAF can work for older people too, and for severe cancers, not just minor cases, providing and only if the patient has a positive attitude and is sufficiently fit to exercise, say two 40 minute brisk walks a day. The immune system just doesn't seem to wake up without exercise.
Our assays
Every batch of our GcMAF is subjected to internal and external assays.

Its has the following internal assays:

1. Sterility - Includes tests for HbsAG, anti-HCV, anti-HBc, and negative for anti-HIV 1 & 2. Prepared in sterile conditions, Lyophilised and put through a 0.22 micron filter to confirm the absence of viruses and bacteria.

2. Protein Quantification

3. Electrophoresis for product identification

4. Activity: Moving from Phagocytosis to Macrophage RAW 246.7 murine cell line superoxide assay

External assays our GMAF has passed in Universities/laboratories over the last year include:

USA - Activity: Macrophage J774 murine cell line activity assay - Ohio University (Feb 2010 onwards)

In Europe - Activity: Chorioallantoic Membrane (CAM) Assay (First 16.05.2010 Last 26.01.2011)

In Europe - Activity: Destruction of cultured human breast cancer cells (Latest 18.01.2011.)

In Europe - 17 day sterility assay: 7 days at 30 degrees C, 7 days at 25 deg, + sub culture aerobic, anaerobic, at 25 degrees. All results negative, "clear as a bell" (Latest 18.01.2011.)

Our GcMAF has twice been shown by independent laboratories to be as potent as samples provided by Dr Yamamoto.



Assays are vital - GcMAF must be proven to exist, be sterile, and most importantly, be active, and activity assays are the best way of proving this. If you have any questions about assays, email or call us by clicking on "Contact" at the top.



Independent longevity assays of our GcMAF:

Test after 8 months stored in a freezer: Our GcMAF retained good activity. 2nd Feb 2011

CAM assay: Kept at room temperature for 10 days: lost 15% of its activity. May 2010

"Badly kept" assay: 7 degrees in frequently opened freezer, shots removed by needle: Good activity after 4 weeks, nearly zero activity after 8 weeks. 11th Feb 2011

"Well kept assay" at +4 degrees in fridge: reduced, but still good activity at 8 weeks. 11th Feb 2011
 

Sushi

Moderation Resource Albuquerque
Messages
19,938
Location
Albuquerque
I can't report on other GcMAF products but the one supplied by KDM is one dose per vial and each dose/vial contains 100 ng GcMAF in 1 ml of solution. I believe that Mr. Noakes said the standard was 400 nm per 1 ml, which would mean using a vial 4 times. We only use each vial once and it is kept frozen until just before use.

Sushi
 

serg1942

Senior Member
Messages
543
Location
Spain

Hi folks,

TONY:


I am very glad to know KDM is prescribing to some patients activated folateUnfortunately you are the only patient I know of whos taking it, out of about 15 I think I am going to start soon the methylation support. If theres a time to do it, it is nowI am doing anaerobic exercise, so what I have left to do, to support my immune system, is give it the chance to 1- Replicate (by forming new DNA/RNA) and 2- imporve my redox status to help the white blood cells to engulf infected cells

CORT:


I think we can do a sub-forum in the XMRV treatment Forum. You want a subforum that you can start different threads on GCMAF in?

Exactly! This is what we need! I know it is possible to do this in 1 minute, as I run 2 PhpBB forumsAs far as where to open the sub-forum for GcMAF, I think we should put it under the Treatment section, because by taking GcMAF, we are not treating just XMRV. We, indeed, are stimulating the cellular immune response, so we are helping our immune system to get rid of most of the vital infections (not just XMRV), and also cancerous cellsSo I think it is a much more generic treatmentAnyway, this is just my opinion. But I think itd be great to open the sub-forum, either where I am suggesting or where you propose. I will PM you this post.

NABO:

Hi,

I understand you must be angry because of the curt reply you got from KDM or his stuffBut if you think about it, it is the right thing to doIf you are getting worse and worse, any good doctor would tell you: STOP, and come here to run some tests, and see what is going on, and how can we tweak the treatment for youI know this response would have made you happier. But hey, we already know how KDM worksAnd we have to take it! (I am still waiting for a reply to an e-mail about my severe insomnia and possible drugs I could try, that I dont know if they could interfere with GcMAFWellso farsilenceProbably I will have to wait until my next 15 mins on April 19th!!!). So, hang in there! I think you are so far the best genetically responder to GcMAF weve met hereMaybe your dose should be titrated somehowSo I dont think this are bad news at all! (Actually the other way around!)


TEST RESULTS PROGRESS:


Interestingly, my liver enzymes are perfect now (lower than usual), my inactive vit D (0.25) is getting lower, and my active vit D (1.25) is getting higher (on the top of the normal range)This would fit with GcMAF work

Saluditos,
Sergio
 

Tony

Still working on it all..
Messages
363
Location
Melbourne, Australia
Hi Sergio, I'm sure there are many here in Aus taking the metafolin in conjunction with the hydroxo B12 injections as I understand it helps the B12 to be effective. Can't say I noticed any difference when I added it to my regime though... Are the patients you know mostly new patients yet to receive a full program after testing? Maybe ask KDM when next you seem him.
 
Messages
92
Location
Holland
Hi Serg,

Yes i am really angry, i still dont know why i have to stop.
All these patients of DML are getting worse in the beginning and they dont have to stop the nexavir. So why me???
I really dont want to stop.

You think i am the best genetically responder to GcMAF?
Well thats good news.

But you think this is all good news, then why are my symptoms getting worse?
Today i get my 10th shot.. and i think i am taking it.
I mean.. i dont know why i need to stop and KDM tells me nothing.
So we will see what will happen.

and there are other people on this forum, who are getting worse by gc maf. and they continue it to.
 

Charles555nc

Senior Member
Messages
572
Im sorry, but with my brain the way it is, its tough sifting through many pages of chat and retaining the information afterwards.

1. Is there a place that sells gcMAF with the approval/guidance of Yamamoto?
2. What do people think of the gcMAF thats sold on the internet (I think it in the netherlands)? I bet it would lose tons of potency from custom delays or not show up at all.
3. Is there an american company that sells/produces it?
 

Sushi

Moderation Resource Albuquerque
Messages
19,938
Location
Albuquerque
Hi Charles,

Yamamoto licensed his product to an Israeli company (PPS). I don't think he supervises the use of that product. This product is available in Israel and Germany at approximately $1000 a shot.

I don't think any American company makes it. The two most common sources are BGLI in the Netherlands and Dr. Kenny De Meirleir in Brussels. BGLI will ship to the US, but I don't know if they have worked out the customs issue--last I heard about 80% of the shipments were getting through. Getting it fast from the lab to the doctor/patient is important though.

De Meirleir doesn't seem to ship it outside of the European Union. Most of his patients bring it back to their countries in their luggage (frozen)--this is what I did. De Meirleir's product is 35 eu per shot. I think the BGLI product is 2 or 3 times more expensive, but I'm not sure.

Hope this helps!
Sushi
 

mojoey

Senior Member
Messages
1,213
Dr Meirleir is shipping it outside of the EU to some patients (I believe they are exceptions rather than the rule), but he is not selling it commercially so this doesn't affect the rest of us anyway.
 

Ronan

Senior Member
Messages
122
Hi Serg,

Yes i am really angry, i still dont know why i have to stop.
All these patients of DML are getting worse in the beginning and they dont have to stop the nexavir. So why me???
I really dont want to stop.

You think i am the best genetically responder to GcMAF?
Well thats good news.

But you think this is all good news, then why are my symptoms getting worse?
Today i get my 10th shot.. and i think i am taking it.
I mean.. i dont know why i need to stop and KDM tells me nothing.
So we will see what will happen.

and there are other people on this forum, who are getting worse by gc maf. and they continue it to.

Hi Nabo,

I understand how frustrating this situation must be for you but if you look at it from KDM point of view i dont think he can do much more. You have been in contact a couple of times by email saying your symptoms are getting worse and it is illegal for him to practice medicine over the telephone as far as i know so unless he see's you again in person all he can do is recommend you stop the treatment. Without seeing you are doing some further testing there is no way of him knowing what might be causing it so the safest option is to recommend you stop taking it. Can you setup another appointment with him soon?
 
Messages
85
Location
USA
Hi,
I am not sure if I already reported this but my NK cells are back to normal after being very low for years and years and years. The perforin has normalized. I also tested negative for XMRV culture (serology not in yet), and leaky gut within the range as well. There are no abx anymore on my treatment plan! I have had 28 gcmafs. Moderate to low responder. My immunesystem is still not in order. The anti-oxidant IV's are getting more benificial.
Just a little update for you all. I am doing a little better very very slowly and I can hardly keep up with all of my contacts.
 

richvank

Senior Member
Messages
2,732
Hi, cansado.

This is wonderful! If this keeps up, you may have to change your name from cansado to vigoroso!

Best regards,

Rich
 
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