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

[AlexMac]

Here's the source I used

AlexMac,

I don't think anyone here is getting GcMAF from the source you contacted. If you look at the spreadsheet you will see our sources and doctors--and we do have qualified and experienced doctors following us.

https://spreadsheets.google.com/ccc...iV2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0

Sushi

I contacted the Gcmaf site in the UK, here's the link : http://www.gcmaf.eu/info/

And according to what appears to be an offical site for this drug the contact person is Noakes, the nasty guy that gave me these answers:

David Noakes
Patient Communications




Clos de Balade 21
1140 Evere

Brussels
Belgium

+44 752 844 1672

Email is not reliable. So I'd rather you called me first. When filling in this from, make sure you enter a valid email address. Please include your phone number and your country.

If you don't receive a reply, call me.

copied and pasted directly from the site. Go and ask and judge by yourself.

 

[AlexMac]

Alex is there any way you can remove your post from this thread? It is inflammatory and does nothing to inform those of us who have done our research and are trying to share our GcMAF experiences. Maybe start another thread on your experiences with David Noakes?

GcMAF is experimental treatment. If you don't understand that then please don't post on this thread. Diabetics "self administer" insulin every day of the week, so I don't understand what the big deal is. We are all here under medical supervision.

Also it is not good to post private emails without the other person's permission as it is a breach of confidentiality.

Are you a seller?

 

[AlexMac]

and no, I'm not removing my post, people are free to go and ask and decide for themselves, to me this is nothing but one of those miracle cures, I did nothing to get insulted. This does not seem to be a serious company to me. Period.

 

[garcia]

and no, I'm not removing my post, people are free to go and ask and decide for themselves, to me this is nothing but one of those miracle cures, I did nothing to get insulted. This does not seem to be a serious company to me. Period.

This thread is not about David Noakes. You are posting off-topic as a number of people have already politely told you. I am no friend of David Noakes, which is why I suggested you start another thread. I'm not saying you shouldn't post your experiences, just not in this thread.

 

[Ronan]

This thread is not about David Noakes. You are posting off-topic as a number of people have already politely told you. I am no friend of David Noakes, which is why I suggested you start another thread. I'm not saying you shouldn't post your experiences, just not in this thread.

This is the reason i finally got the hump and replied the way i did. Alex has been posting this same info for the last week in various threads. Alex, you have warned everyone about this company so thanks for that but give it a rest now. The reason your getting "insulted" is because of the repetitive nature and the tone your refer to GcMAF. As stated, nobody here is getting it from this guy and we are all under doctor supervision with our own supply. I suggest you do the same or just dont persue it any further. Now lets get back on topic of discussing how we are getting on with our treatment!

 

[Alexia]

Alex why are you so bitter? why do you want to "prove" that others are making the wrong choices?
We are all trying our best to improve our health, we all need to make choices and maybe use experimental therapies if that's what seems better at a certain moment .
You are making your own choices so let others do the same. Why try to fight agains personal choices?

I'm not taking GcMAF but I'm very grateful to all these pioneers that are sharing their experiences with us in an open and friendly way, so please appreciate and respect that.

 

[lobba123]

i also agree alexmac is totally off topic here and post should be moved

i have been looking where to test nagalase for sometime and redlabs told me they dont test now, probably because they are now focused on CFS and not interested in hbv alone

i have found this other lab that test nagalase, what do you think?anybody tested nagalase in a different lab than redlab?
off course i'd like to test nagalase level anyway even if i making different combo therapies than gcmaf.if it suppresses or interfere with immune response it is good to have normal anyway

http://www.europeanlaboratory.nl/

 

[Overstressed]

Hi Lobba,

I had my Nagalase levels checked with this laboratory. Sadly, I was already on Gc-Maf therapy for some time, so I didn't have a baseline to compare with. I don't know how Nagalase levels are with HBV, but with CFS, they tend to be already low. That was confirmed by this lab.

OS.

 

[lobba123]

Hi Lobba,

I had my Nagalase levels checked with this laboratory. Sadly, I was already on Gc-Maf therapy for some time, so I didn't have a baseline to compare with. I don't know how Nagalase levels are with HBV, but with CFS, they tend to be already low. That was confirmed by this lab.

OS.

nagalase low?aren they supposed to be high when they suppress macrophage and low on healthy individuals?
i sent an email to them, i hope they accept shipment of blood samples

i wouldn t be surprised to find similarities with CFS although i understand from your experiences that CFS can be by far more serious than hbv.

 

[Rrrr]

KDM's stool test

for those going to KDM for gcmaf, and if you will do the stool test while there, i just got this from his staff:

Date: Wed, 23 Mar 2011 16:05:29 +0100

You have to without antibiotics for about 1 month and without probiotics for 1 week.
Supplements = OK

 

[Jenny]

Alex - I had similar weird emails when I contacted these people. They were not rude, but the procedure they were advocating seemed very confused. So I decided not to get involved with them. I'm not doing GMaf - if I did I would do it through a doctor who knows what they are doing.

Jenny

 

[Rrrr]

i also agree alexmac is totally off topic here and post should be moved

i have been looking where to test nagalase for sometime and redlabs told me they dont test now, probably because they are now focused on CFS and not interested in hbv alone

i have found this other lab that test nagalase, what do you think?anybody tested nagalase in a different lab than redlab?
off course i'd like to test nagalase level anyway even if i making different combo therapies than gcmaf.if it suppresses or interfere with immune response it is good to have normal anyway

http://www.europeanlaboratory.nl/

hi lobba123,

i tested my nagalase at Vitamin Diagnostics, now called ttp://www.europeanlaboratory.nl/

i have yet to get my results. should be in this week. i'll report back when i get my results. i think the test was $65, not covered by insurance, and sent to their lab in New Jersey, USA.

 

[AlexMac]

Here's a thread I found on GCMaf, I think it explains some of your doubts, and after reading this, mine were confirmed : http://forums.aboutmecfs.org/entry.php?483-GcMAF-trial

Be aware of this kind of quacks like Noakes.

 

[lobba123]

Here's a thread I found on GCMaf, I think it explains some of your doubts, and after reading this, mine were confirmed : http://forums.aboutmecfs.org/entry.php?483-GcMAF-trial

Be aware of this kind of quacks like Noakes.

please stop spamming and acting like a trol otherwise we will ask moderator to ban you, nobody here use noakes products, nobody knows him and we said this many times

i think also that noakes might sue you for this and he has the rights to do so since you are nobody to judge

 

[Rrrr]

Rrrr's Thermos/Flask report (for transporting GcMAF back from Brussels to USA)

I bought and have now tested the Nissan Thermos, 48 oz size thermos. This is what the thermos looks like:
http://www.amazon.com/Thermos-Nissan-Ounce-Mouth-Stainless/dp/B00004S1D3

So, I filled the thermos up to about 1/5th of its capacity (to do this, I used less than 1 full try of ice). When I opened the thermos 24 hours later, I found that the ice was very much still there. Only about 1/4 to 1/3rd of it had melted. So the ice cubes were still very much ice cubes, but in some icy water.

I declare the trial a success.

I also bought a cooler bag to put the thermos in. I will put it all in my checked luggage.

And I have emailed US Customs to ask them if I can bring a thermos back into the country in checked luggage, or if that will be a problem.

I would say about 10 GcMAF tube would fit in the thermos with a whole lot of ice. I bought two thermoses.

Thanks to the person who had originally suggested a thermos.

Rrrrrrrrrrrr

 

[Rrrr]

I have now contacted both US Customs and TSA, and both said I can bring a metal thermos out of and into the U.S., as long as it is in my checked luggage.

"You can put the thermoses in your checked baggage. You will be OK if they are empty or contain water or another common liquid. I hope this answer helps and you have a good trip."

Of course, coming into the US, I'll have a letter from KDM saying what the GcMAF is (the GcMAF that will be in the thermos, in vials).

 

[Sushi]

Rrrr,

Good research! Thanks. You might want to put a copy of your emails from Customs and TSA along with your documentation from KDM. The little guy with the scanner might not be up on all the rules!

Sushi

 

[dannybex]

Gut issues and diet...?

I think that KDM believes that the main problem is in the gut. ME/CFS patients develop a compromised immune system due to gut dysbiosis and toxin transfection from gut to blood. It is pointless treating the xmrv if you don't get to the bottom of the problem first, thereby boosting the immune system.

I did my breath tests in November. I never thought I would be intolerant to either. It turns out I am very lactose intolerant and slightly fructose intolerant. KDM also works closely with a nutritionist. I have seen a lot of improvement in my stomach issues by cutting out dairy and following the recommended rigid diet for the first six weeks. Now after my second consultation with the nutritionist, I can begin to introduce a few other foods. I cannot stress enough the important role of diet in this condition.

Hi,

Can you describe what you mean by a 'rigid' diet? Were you allowed rice or other complex carbs, or was this a strict paleo-type diet?

Thanks in advance,

Dan

 

[Charles555nc]

Can someone who is seeing KDM please ask him when they plan to have a source of GcMAF available in the United States. Currently I dont want to pay 600$ for a spoiled source of GcMAF because of customs (I think a large delay is almost 100% likely- although the people selling it-and making a profit- say there isnt much of a delay)

I heard Cheney patients get it, but its probably reduced quality because of being shipped from abroad, and he doesnt seem to be getting good results with it- not to mentition Cheney charges several thousand dollars upfront just to be seen.

 

[Sushi]

Can someone who is seeing KDM please ask him when they plan to have a source of GcMAF available in the United States.

I am one of his patients and as far as I know he only supplies it to his patients--though he has successfully shipped it the the US. I don't think he plans to sell it--unless, perhaps, (and this is just supposition) he is working closely with a doctor in the US. I am in Europe now but plan to carry as much as he prescribes with me in my checked luggage to the States.

I agree, getting held up in customs could be a problem. Though he does supply documentation for customs, you cannot predict what an individual customs agent will do.

Sushi