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

[Rrrr]

what is the reason for doing the lactose and fructose intolerance tests KDM offers? it is to diagnose ME/CFS or is it so i will know to keep away from lactose and fructose?

it is 90 euros per test.

 

[filfla4]

what is the reason for doing the lactose and fructose intolerance tests KDM offers? it is to diagnose ME/CFS or is it so i will know to keep away from lactose and fructose?

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.

 

[Nabo]

hello everybody,

i have a question:
A few people on this forum take 1/5 dose of gc maf.
What do you do with the rest?
How many times can you freeze it?

I would like to lower my dose from 1 to 0,5.
Can i freeze the other 0,5 back in the freezer?

 

[garcia]

hello everybody,

i have a question:
A few people on this forum take 1/5 dose of gc maf.
What do you do with the rest?
How many times can you freeze it?

I would like to lower my dose from 1 to 0,5.
Can i freeze the other 0,5 back in the freezer?

Ok this is what I am planning on doing for 1/4 dose (and what KDM told me to do):

1) You take 1 vial of GcMAF out the freezer, defrost it for an hour (or whatever).
2) Now I take a needle (I use 0.5ml insulin needle) and draw up 0.25ml, then cap this
3) Repeat step 2 with 3 other needles until you have 4 needles each with 0.25ml in them
4) Inject one of the needles
5) Cap the others and re-freeze.
6) On your next injection of 1/4 dose, take out one of the above needles from the freezer, defrost and use.

If you want to use 1/2 dose then simply draw out 0.5ml in 2 needles instead.
If you want to use 1/5th dose, simply draw out 0.2ml in 5 needles instead etc.

Please no follow-up questions. Don't have energy to answer.

 

[cansado]

I cannot stress enough the important role of diet in this condition.

I can not agree more. We are thinking in medicine but a personal diet is as much important. Maybe even more important.

 

[girlinthesnow]

The amount of fluid in the vials does seem to differ. I prepared 4 needles to draw up 0.25 into each but instead filled 3 and the vial was empty. So I injected a 1/3 dose and froze two needles instead. As KDM wrote "20-50 nanograms per week" on my treatment plan I assume it's ok to do this. I had a full dose (1cc) last week so will titre down to a quarter dose in 3 weeks provided there is enough fluid in the vial I defrost next to do this.

 

[froufox]

Yeah thats the problem I had girl. When I divided my doses into separate needles....1/4 dose was filled up to the 0.20ml mark, not 0.25. So the total volume of liquid in that particular vial would have been 0.80ml, not 1ml.

The secretary did tell me that the amount of liquid can vary due to differing amounts of water in there, although the amount of GcMAF should be the same in each one. One vial I had (when I did a full dose) actually turned out to be about 1/2 or even less, compared to the amount of liquid in the previous vials!

Also it is hard to judge because u cant see how much liquid is in each vial as u are looking down into the vial...at least it was hard for me to see as the liquid is transparent, and the vials are so small, and also because there is a label on the outside of each vial, u cant see from the outside either.

I guess one way around this would be to pour the liquid into another (sterile) container, so that u can see the total amount and can divide up your doses more easily.

 

[leela]

No no! No pouring into another container!
Keeping things sterile is important when doing injections!

I would suggest drawing a little less than the desired amount into each needle, and then distributing as best as possible the remaining liquid into each needle. I always like to swab the top of the vial with an alcohol wipe each time too, though I'm not sure what
kind of vials you all are using--are they the resealable rubbery tops?

 

[froufox]

Sorry Leela, I did mean to edit my post earlier about the sterile issue, but have been so drained today I ended up going to bed to rest. Ive been so tired today so wasnt thinking straight.

 

[leela]

Ive been so tired today so wasnt thinking straight.

Don't worry frou, we've all been there...over and over again....Just wanted to make sure everyone stays as healthy as possible
I remain in deep gratitude to all of you who are forging a new way for us all, and sharing so freely about it.

 

[froufox]

Thanx Leela!

 

[Sushi]

Hey Leela,

I always appreciate your posts on this thread. It is encouraging for guinea piggies to have a fan club!:victory:

There are ups and downs and we are have all invested a lot of money and "psychic energy" putting ourselves out there on the edge, so cheers are much appreciated....as well as common sense responses when we are wandering in brain-fog land and could goof up!

Thanks!
Sushi

 

[AlexMac]

Gcmaf = danger or "merely" a waste of money???

Hi Jenny and everyone here,

I don't know if you're already using it but I suggest that you see a doctor before becoming a lab rat to these people. I know how hard (almost impossible) is to find a doctor that treats/understands M.E. But I wrote an email to these people, and they said that I could buy it straight away, no prescription needed, selling it like "candies". When I asked about my concern about not being followed up by a doctor, David NOAKES told me that doctors don't know anything, that I don't need a prescription, that I had to do my own research (well that was why I was contacting the company...) and I even got insulted by him! Just because I asked about my concerns.

Please be careful about this. Ask, read what well-known doctors have to say about this. I am desperate as you are, after having tested positive but please think twice before trusting "miracle cures".

Best wishes.

Alex

ps: Here's the emails I sent and the response I got from David Noakes from GcMAf, Is this a professional way of treating queries?????

After David Noakes sent me a looong email with an extensive explanation on GCMAf, the fact that big pharma and doctors refuse to use this medication, but without saying why doctors would refuse their patients this "miracle cure", how I could get this medication, etc etc... I sent him the following reply :

From: ALEXANDRA <alex.maclachlan@free.fr>
Subject: RE: GcMaf
To: "'David Noakes'" <davidjnoakes@yahoo.co.uk>
Date: Monday, 21 March, 2011, 17:14
Ok so basically youre advising to buy a drug for which there were no clinical trials performed. Even if its true what you say, how can I trust this drug, wouldnt I need medical supervision? Has this drug been approved in Europe? You mention cancer and HIV but what about M.E.? No trials are being conducted then? We patients have to pay for a drug, and take the risk of being lab rats ourselves?

You see I agree with some of the things you say in your mail, but I find it very suspicious to get this message from a yahoo email address, trying to sell a drug, now of course you might be an honest person but I ignore who you are, and whose interests you are defending. In five years Ive seen so many unscrupulous people trying to get advantage from desperate patients, M.E. and fibromyalgia patients. And now with the xMRV I wouldnt be surprised things will even get worse for dirty businesses.

Is there a doctor I can ask for further information?

Regards,

Alexandra Maclachlan

I got the following answer afterwards:

De : David Noakes [mailto:davidjnoakes@yahoo.co.uk]
Envoy : lundi 21 mars 2011 22:29
: ALEXANDRA
Objet : RE: GcMaf

Yes there are, but you need to want to do this, and you clearly don't. You are not a suitable candidate for self administration. If you were, you would already have done your own research, and none of this would be new to you. YOU'RE ACTUALLY AN IDIOT TO ASK THESE QUESTIONS.
You need to know what you are talking about before you get involved, not afterwards.

David Noakes.

Now I don't know you people but I wouldn't trust guys like this one, Does anyone have a similar experience???? Now with XMRV I wouldn't be surprised to see bastards out there selling miracle cures that could even make you worse! This guy is talking about Self administration!!! Patients buying this stuff and administering it themselves!!! please BE AWARE!!

 

[Sushi]

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

 

[Ronan]

Hi Jenny and everyone here,

I don't know if you're already using it but I suggest that you see a doctor before becoming a lab rat to these people. I know how hard (almost impossible) is to find a doctor that treats/understands M.E. But I wrote an email to these people, and they said that I could buy it straight away, no prescription needed, selling it like "candies". When I asked about my concern about not being followed up by a doctor, David NOAKES told me that doctors don't know anything, that I don't need a prescription, that I had to do my own research (well that was why I was contacting the company...) and I even got insulted by him! Just because I asked about my concerns.

Please be careful about this. Ask, read what well-known doctors have to say about this. I am desperate as you are, after having tested positive but please think twice before trusting "miracle cures".

Best wishes.

Alex

ps: Here's the emails I sent and the response I got from David Noakes from GcMAf, Is this a professional way of treating queries?????

After David Noakes sent me a looong email with an extensive explanation on GCMAf, the fact that big pharma and doctors refuse to use this medication, but without saying why doctors would refuse their patients this "miracle cure", how I could get this medication, etc etc... I sent him the following reply :

From: ALEXANDRA <alex.maclachlan@free.fr>
Subject: RE: GcMaf
To: "'David Noakes'" <davidjnoakes@yahoo.co.uk>
Date: Monday, 21 March, 2011, 17:14
Ok so basically you’re advising to buy a drug for which there were no clinical trials performed. Even if it’s true what you say, how can I trust this drug, wouldn’t I need medical supervision? Has this drug been approved in Europe? You mention cancer and HIV but what about M.E.? No trials are being conducted then? We patients have to pay for a drug, and take the risk of being lab rats ourselves?

You see I agree with some of the things you say in your mail, but I find it very suspicious to get this message from a yahoo email address, trying to sell a drug, now of course you might be an honest person but I ignore who you are, and whose interests you are defending. In five years I’ve seen so many unscrupulous people trying to get advantage from desperate patients, M.E. and fibromyalgia patients. And now with the xMRV I wouldn’t be surprised things will even get worse for dirty businesses.

Is there a doctor I can ask for further information?

Regards,

Alexandra Maclachlan

I got the following answer afterwards:

De : David Noakes [mailto:davidjnoakes@yahoo.co.uk]
Envoy : lundi 21 mars 2011 22:29
: ALEXANDRA
Objet : RE: GcMaf

Yes there are, but you need to want to do this, and you clearly don't. You are not a suitable candidate for self administration. If you were, you would already have done your own research, and none of this would be new to you. YOU'RE ACTUALLY AN IDIOT TO ASK THESE QUESTIONS.
You need to know what you are talking about before you get involved, not afterwards.

David Noakes.

Now I don't know you people but I wouldn't trust guys like this one, Does anyone have a similar experience???? Now with XMRV I wouldn't be surprised to see bastards out there selling miracle cures that could even make you worse! This guy is talking about Self administration!!! Patients buying this stuff and administering it themselves!!! please BE AWARE!!

First time i've heard GcMAF described as a Miracle Cure. I'm taking it with the hope it will help me, possibly even cure me but i dont expect it to be a miracle cure. I also think just about everyone on GcMAF is doing it under the direction of a doctor. Your tone on this thread always seems to be a bit strange! We are not all fools taking some random medication that we found on some dodgy website. The leading ME/CFS doctors in the world are using this as part of their protocol. Sure it doesn't come with any guarantees but by all accounts it is a far less toxic treatment option than the alternative of Anti Retrovirals. I'll happily give GcMAF a good shot before going down the Anti Retroviral root.

 

[filfla4]

Well put Sushi and Ronan! I agree completely. I didn't go into this lightheartedly. I have spent a lot of money to be tested and treated by the leading ME/CFS doctor in Europe, Prof Kenny De Meirleir. GcMAF is part of his treatment protocol. He was one of the four international experts on the panel that developed the Canadian Consensus Document for ME/CFS and he has also been invited to join the new panel which will be revising this document. He will be presenting at the upcoming "Invest in ME" conference to be held in London in May, together with Judy Mikovitz, Annette Whittemore, David Bell, John Chia and others. You can read more about that here: http://www.investinme.org/IIME Conference 2011/IIME 2011 International ME Conference Agenda.htm

 

[leela]

I would like to add that, while I realize this is a veeeeery long thread, a quick perusal will make it clear that no one on these forums has considered using the source you mentioned, Alex. While careful discernment is wise, alarmist reactivity and jumping to conclusions might not be prudent.
No sense in throwing the proverbial baby out with the bathwater, after all.

 

[Nabo]

@ Garcia
Thank you so much!

@ Serge
My vit D results are:

Vit D 25 : 25,7
Vit D 1,25: 69,5

Calcium is ok, everytime about 95.

 

[vli]

I would like to add that, while I realize this is a veeeeery long thread, a quick perusal will make it clear that no one on these forums has considered using the source you mentioned, Alex.

---Indeed.

 

[garcia]

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.