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I just take a cetirizine tablet (the generic of Zyrtec) before the shot and daily each morning.
GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?
- Thread starter Sushi
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Hi citybug,
I am tracked with those tests. They actually got better on GcMAF, so didn't, for me, seem related to the inflammation I get.
Sushi
Just watched Dr Cheney's March lecture video which includes a bit on MAF (2nd video at 35 mins):
http://cfspatientadvocate.blogspot.co.uk/2013/04/paul-cheney-lecture-march-22-2013.html
Interesting in that he says that probiotic GcMAF is better than chemical GcMAF and is cheaper. He uses the MAF developed by Prof. Ruggiero (MAF 314, presumably).
He says he only treats with MAF if nagalase levels are high and stops when they're slightly above normal. He says if you keep treating and nagalase levels keep falling, patients get sicker.
Has anyone come across this approach? I didn't have my nagalase levels checked before I started.
http://cfspatientadvocate.blogspot.co.uk/2013/04/paul-cheney-lecture-march-22-2013.html
Interesting in that he says that probiotic GcMAF is better than chemical GcMAF and is cheaper. He uses the MAF developed by Prof. Ruggiero (MAF 314, presumably).
He says he only treats with MAF if nagalase levels are high and stops when they're slightly above normal. He says if you keep treating and nagalase levels keep falling, patients get sicker.
Has anyone come across this approach? I didn't have my nagalase levels checked before I started.
I've always been confused about why Dr. Cheney refers to the injected GcMAF as "chemical GcMAF" since it is a natural substance, not something synthesized in a lab.
His experience with nagalase levels and continued use of GcMAF is not the same as some of the other doctors who prescribe GcMAF. Perhaps because of the different way he sets up the protocol? Or other aspects of treatment that he uses? Don't know.
I have been taking injected GcMAF (at lower doses than Dr. Cheney used--he also gave it sublingually, not by injection) for over 2 years and have continued to improve on it--so different patients have different experiences. I also use a support protocol that may make a difference too.
My nagalase levels came steadily down with treatment. I am waiting for the most recent results but the last one I had was 1.0--just slightly above normal--so I am likely to be in the normal range now as that was a few months ago.
Sushi
His experience with nagalase levels and continued use of GcMAF is not the same as some of the other doctors who prescribe GcMAF. Perhaps because of the different way he sets up the protocol? Or other aspects of treatment that he uses? Don't know.
I have been taking injected GcMAF (at lower doses than Dr. Cheney used--he also gave it sublingually, not by injection) for over 2 years and have continued to improve on it--so different patients have different experiences. I also use a support protocol that may make a difference too.
My nagalase levels came steadily down with treatment. I am waiting for the most recent results but the last one I had was 1.0--just slightly above normal--so I am likely to be in the normal range now as that was a few months ago.
Sushi
I just watched that too. Slightly above normal he says is good. He thinks nagalase might regulate HERV activation. Maybe the low levels that people take keep nagalase from dipping too much for some?
He also said Shoemaker's CIRS patients were indistinguishable from his patients.
He also said Shoemaker's CIRS patients were indistinguishable from his patients.
Thank you, that's a great lecture.
We have to consider that Dr C. conclusions are based on a small sample and all his patients.
The fact that his patients responded better to the maf314 vs the chemical gcmaf may be due to the fact that the probiotic version reduced gut toxicity as he mentioned, in addition to the immune effects. Also the probiotic version response was not predicted by the vit D genotype.
The nagalase being not too good if too low again is based on data extrapolated from a small sample. He thinks the nagalase may have a regulatory effect on the immune system, if it's too high the immune system is inactive, if too low it may cause the system to become overactive. It would be interesting to have a similar analysis conducted on a larger sample.
We have to consider that Dr C. conclusions are based on a small sample and all his patients.
The fact that his patients responded better to the maf314 vs the chemical gcmaf may be due to the fact that the probiotic version reduced gut toxicity as he mentioned, in addition to the immune effects. Also the probiotic version response was not predicted by the vit D genotype.
The nagalase being not too good if too low again is based on data extrapolated from a small sample. He thinks the nagalase may have a regulatory effect on the immune system, if it's too high the immune system is inactive, if too low it may cause the system to become overactive. It would be interesting to have a similar analysis conducted on a larger sample.
I think it's possible he only brings nagalase down to slightly above normal (I think it was 1.5) is because he is using the full dose. I believe he said he starts at 20ng and goes up 20ng each week to 100ng. Maybe a smaller dose is required as the nagalase comes down. I'm surprised he didn't consider lowering the dose over time.
My doctor told me about a patient that recovered on a very low dose - 15ng.
My doctor told me about a patient that recovered on a very low dose - 15ng.
Because I have only been able to get MAF314 in a stop/start way I may have luckily kept my nagalese (or whatever the effect is) from getting too low. The person who makes it for me is largely cured and back at work. He had severe stomach symptoms though. These improved from his first week and just kept getting better. He's not crashed on a full dose for over a year. Will check with him to see what his nagalase is like now.
The MAF314 was offered to me before I could get a nagalase test so I have no idea where I am.
I seem to have plataued though when I take the MAF and when I stop taking it I slip back into cold, flus, stomach upsets, less strength, more PEM, worse sleep.
The MAF314 was offered to me before I could get a nagalase test so I have no idea where I am.
I seem to have plataued though when I take the MAF and when I stop taking it I slip back into cold, flus, stomach upsets, less strength, more PEM, worse sleep.
Well, I woke up with a total sense of well being and without pain or inflammation in my body for the first moments in at least six months. I was so grateful that I just soaked in the experience and enjoyed the early cool spring rain and stayed in the sheets for a few hours. Lasted four hours. Now I am back to feeling horrendous and nauseous and fatigued/viral. So anxiously awaiting the next time. On GcMAF, increasing dosages...trying to get to dosage of 20ng. Expensive but prob worth it. I am spending close to that on supplements monthly. Had to stop the lyme herbs due to nausea. Sigh. Hopefully will start methylation protocol in May. Happy Birthday to me.
Very nice. Do you attribute this to GCMAF ? What dose are you on now btw ? My doctor has a patient almost recovered on only 15ng.
You are right Sue. Seems to be harder to find anything that works if the disease has been long term. I'm at about 29 years and the MAF314 is one of the few things that has helped me (plus the Valtrex and Immunovir).
Will check to see how long that person has been ill. They did tell me but I brain hasn't retained the info. It would be 20 years + as that would have been notable. Have a feeling it was 7 years.
Happy birthday Shoesies . Hope the improvement continues. Even these small moments are a relief. Glad one happened on your special day.
Will check to see how long that person has been ill. They did tell me but I brain hasn't retained the info. It would be 20 years + as that would have been notable. Have a feeling it was 7 years.
Happy birthday Shoesies . Hope the improvement continues. Even these small moments are a relief. Glad one happened on your special day.
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Happy brithday from me too
and good luck
and good luck
Any one doing well on a tiny dose of GcMAF?
I havent coped with doses from 5-20 ng and so my next attempt is going to be to trial 1.25 ng ( as best I could measure it out.)
I would be interested to know if anyone else is at these tiny doses.
I seem to be going around in circles. I have spent months trialling various natural supplements that are TNF-a inhibitors. I figured that if I could find something to control inflammation, then I would do better on the GcMAF. Trouble is, the various supplements seem to cause me problems to take- even at tiny doses. I have now found some research that might shine some light on this- that most of them also seem to boost the immune system. I have had terrible symptoms even when taking 1 drop of blueberry, but now find that it is an ACE inhibitor and is thereby probably boosting my immune system ( perhaps the research around the marshal protocol has some validity)...those of you familiar with olmesartan and its actions will realise that it too is a powerful anti inflammatory but also has another effect, being to boost the immune system.
Long story short- I have been trialling supplements for about 8 months and have found nothing that helps me with the inflammation that I can tolerate. Olmesartan is good at a low dose ( instant relief) but after a week on it I crash really badly with extreme symptoms that I think occur after the immune system becomes activated.
I am just going to go back and trial Gc MAF agin and go really low. Fingers crossed.
I havent coped with doses from 5-20 ng and so my next attempt is going to be to trial 1.25 ng ( as best I could measure it out.)
I would be interested to know if anyone else is at these tiny doses.
I seem to be going around in circles. I have spent months trialling various natural supplements that are TNF-a inhibitors. I figured that if I could find something to control inflammation, then I would do better on the GcMAF. Trouble is, the various supplements seem to cause me problems to take- even at tiny doses. I have now found some research that might shine some light on this- that most of them also seem to boost the immune system. I have had terrible symptoms even when taking 1 drop of blueberry, but now find that it is an ACE inhibitor and is thereby probably boosting my immune system ( perhaps the research around the marshal protocol has some validity)...those of you familiar with olmesartan and its actions will realise that it too is a powerful anti inflammatory but also has another effect, being to boost the immune system.
Long story short- I have been trialling supplements for about 8 months and have found nothing that helps me with the inflammation that I can tolerate. Olmesartan is good at a low dose ( instant relief) but after a week on it I crash really badly with extreme symptoms that I think occur after the immune system becomes activated.
I am just going to go back and trial Gc MAF agin and go really low. Fingers crossed.
Hi all,
as all of know, I have been using Gc-Maf for quite a while, and stopped more than a year ago. As some of you know, on top of all misery, I'm suffering from a widening of my thoracic aorta. Recently, my genetic doctor found a mutation on the FBN1-gene. The mutation is on the intron, not the exon, which is a bit strange he said. He thinks something is wrong with the splicing. I have my own theory what might be happening there, something I thought of in the very beginning. This gene is related to Marfan's syndrome. Though, he doesn't think I have Marfan's.
So far the background information. What I discovered is that ever since I quit Gc-Maf, the dilatation of the aorta stopped. My aorta didn't progress since a year now. In the beginning, I thought it was just good luck or related to something else, but it can't be that it stays unchanged for a year, especially when it grew 0.19 inch the year before. I was not taking much other supplements/treatments, and I added them one after one, but it doesn't affect my aorta.
The only question left is that vit-E that I took for some while after a great tip from a member here, made the difference. It might be, but I quit Vit-E too -as taking too much of alfa tocopherols is not good, as it lowers gamma-tocopherols as scientist say. And a lowering of gamma... increases the chances of cancer - and it doesn't change anything on my aorta. So, this leaves me with Gc-Maf...
My message would be, and this counts for everyhting you take which is scientifically not proven: be very careful, and have your main organs checked regularly.
Best wishes,
OS.
p.s. I now take every now and then a few drops of the K-Guard, the homeopathic version of Gc-Maf.
as all of know, I have been using Gc-Maf for quite a while, and stopped more than a year ago. As some of you know, on top of all misery, I'm suffering from a widening of my thoracic aorta. Recently, my genetic doctor found a mutation on the FBN1-gene. The mutation is on the intron, not the exon, which is a bit strange he said. He thinks something is wrong with the splicing. I have my own theory what might be happening there, something I thought of in the very beginning. This gene is related to Marfan's syndrome. Though, he doesn't think I have Marfan's.
So far the background information. What I discovered is that ever since I quit Gc-Maf, the dilatation of the aorta stopped. My aorta didn't progress since a year now. In the beginning, I thought it was just good luck or related to something else, but it can't be that it stays unchanged for a year, especially when it grew 0.19 inch the year before. I was not taking much other supplements/treatments, and I added them one after one, but it doesn't affect my aorta.
The only question left is that vit-E that I took for some while after a great tip from a member here, made the difference. It might be, but I quit Vit-E too -as taking too much of alfa tocopherols is not good, as it lowers gamma-tocopherols as scientist say. And a lowering of gamma... increases the chances of cancer - and it doesn't change anything on my aorta. So, this leaves me with Gc-Maf...
My message would be, and this counts for everyhting you take which is scientifically not proven: be very careful, and have your main organs checked regularly.
Best wishes,
OS.
p.s. I now take every now and then a few drops of the K-Guard, the homeopathic version of Gc-Maf.
Hi Rrrr,
thank you for asking. I feel quite well in fact, apart from the aorta, which is always on my mind. See, I don't yet want to die.
Since I quit Gc-Maf and took Vit-E, I feel much better. Seldomly I have a ''payback time'' -as I call it- for doing too much. Last week I just had this weird headache again, I think for the first time this year. Overall, I think I lifted the level of the things I can do. Sure, tiredness remains an issue, but as soon as I take a few drops, this problem gets much better.
And, I can repeat myself again: currently I'm taking anti-fungal medication(lamisil) because of general fungal infection(due to weak immune system?) and this is the best therapy for me. It was like this in the past, and it remains that way. It may explain what kind of infection I'm struggling with. I'm referring here to a recent article, where scientist explained HIV gets killed by Ciclopirox in vivo, an antifungal. Importantly here is, the virus didn't bounce back.
Of course, all need to be proven in-vivo...
Best wishes,
OS.
thank you for asking. I feel quite well in fact, apart from the aorta, which is always on my mind. See, I don't yet want to die.
Since I quit Gc-Maf and took Vit-E, I feel much better. Seldomly I have a ''payback time'' -as I call it- for doing too much. Last week I just had this weird headache again, I think for the first time this year. Overall, I think I lifted the level of the things I can do. Sure, tiredness remains an issue, but as soon as I take a few drops, this problem gets much better.
And, I can repeat myself again: currently I'm taking anti-fungal medication(lamisil) because of general fungal infection(due to weak immune system?) and this is the best therapy for me. It was like this in the past, and it remains that way. It may explain what kind of infection I'm struggling with. I'm referring here to a recent article, where scientist explained HIV gets killed by Ciclopirox in vivo, an antifungal. Importantly here is, the virus didn't bounce back.
Of course, all need to be proven in-vivo...
Best wishes,
OS.
There has been some well done research that shows that in Marfans (or connective tissue problems due to the gene associated with Marfans) taking Losartan (Cozaar) can interrupt the process that leads to aortic dilation. Its a pretty benign medication so if you fit the genetic criteria you might talk to your doctor about trying it.
http://www.sciencedaily.com/releases/2011/04/110414141402.htm
http://www.hopkinschildrens.org/Aortic-Aneurysm-Growth-Treatment-in-Marfan-Syndrome.aspx
http://www.sciencedaily.com/releases/2011/04/110414141402.htm
http://www.hopkinschildrens.org/Aortic-Aneurysm-Growth-Treatment-in-Marfan-Syndrome.aspx