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

[Sushi]

Thanks Daffodil. You touched on the real nub of the issue--crashes. I
....If someone could explain to me what these relapses really are, and what triggers them, it would be a real gift.

Maybe the crashes come because we still have some of the original onset causes waiting in the wings.

For me, so far (a bit over a year) I have stopped crashing since taking GcMAF. I still have to be careful to not overdo, but when when I do go outside my activity limits I don't crash anymore. Course I haven't tried riding a marathon, and that might do it, but so far so good.

As far as the GcMAF yogurt, Dr. Cheney makes it available to his patients who have done the training and Dr. Enlander has developed another version of it for his patients. Other than that, I don't know where you would get it in the States.

Best,
Sushi

 

[perrier]

Maybe the crashes come because we still have some of the original onset causes waiting in the wings.

For me, so far (a bit over a year) I have stopped crashing since taking GcMAF. I still have to be careful to not overdo, but when when I do go outside my activity limits I don't crash anymore. Course I haven't tried riding a marathon, and that might do it, but so far so good.

As far as the GcMAF yogurt, Dr. Cheney makes it available to his patients who have done the training and Dr. Enlander has developed another version of it for his patients. Other than that, I don't know where you would get it in the States.

Best,
Sushi

Thanks for your response Sushi. I distinguish between two types of crashes: 1) a relatively small one, which can last from a day to two or three or four weeks and 2) a nightmare which lasts for over a year, and way more, even two or three years. And this one consists of lots of bed time, and lots of sick feeling and lots of toxic feeling. And then this is the one which so deconditions you that you have to crawl out of the hole again, slowly trying to move about, and once again going through the pain of getting your muscles to move from being strings to something a little more substantial, though still not near normal.

Now I can sort of figure out why number 1 comes, overdoing it a bit (which is nowhere near normal folks' activity level), but crash type 2 is totally beyond me. And if it is that something from the initial collapse resurfaces, then why can't the physicians find it!!

As for the yogurt, I asked one of the prominent CFS physicians, and he said it was just Bifidum. Well, if it is 'just' this, a super good probiotic is worth gold. I have been reading Natasha McBride Campbell's Gaps book and she says pill form probiotics are useless on the whole. She argues for making your own yogurt. A good probiotic would help most of us. Still, I would really like to get some of this maf - yogurt.

Why are things moving so slowly with this illness? We are all young people, and it has been such a waste of what we could have brought to the country and to the economy.

 

[perrier]

Maybe the crashes come because we still have some of the original onset causes waiting in the wings.

For me, so far (a bit over a year) I have stopped crashing since taking GcMAF. I still have to be careful to not overdo, but when when I do go outside my activity limits I don't crash anymore. Course I haven't tried riding a marathon, and that might do it, but so far so good.

As far as the GcMAF yogurt, Dr. Cheney makes it available to his patients who have done the training and Dr. Enlander has developed another version of it for his patients. Other than that, I don't know where you would get it in the States.

Best,
Sushi

Sushi, I forgot to add: if you have stopping crashing since taking GCmaf, then I really consider that close to miraculous. Have other people you know also stopping crashing?

Kind regards, Helene

 

[Sushi]

Sushi, I forgot to add: if you have stopping crashing since taking GCmaf, then I really consider that close to miraculous. Have other people you know also stopping crashing?

Kind regards, Helene

Yes, some have, but others haven't. Again, we aren't clear about who it works for and at what level.

Sushi

 

[ukxmrv]

I've had some of the MAF314 yogurt and noticed good effects on my stomach functioning within a few days. This was significant for me as both probiotics in pill/capsule form and in live yogurt stopped having any good effects in me over 10 years ago.

Went back on some of the literature on HIV and yogurt so I am assuming that they started with the same strains reports there (?) but I guess no one really knows apart from the doctors using it / developing it.

 

[perrier]

I've had some of the MAF314 yogurt and noticed good effects on my stomach functioning within a few days. This was significant for me as both probiotics in pill/capsule form and in live yogurt stopped having any good effects in me over 10 years ago.

Went back on some of the literature on HIV and yogurt so I am assuming that they started with the same strains reports there (?) but I guess no one really knows apart from the doctors using it / developing it.[/QUOe


Thanks UKXMRV for the above information. This is very encouraging. Daffodil provided a list of physicians using GCMAF, and I am now asking: who are the physicians who use the MAF yogurt? Perhaps there is an overlap in some cases. But where would one get the yogurt. Dr. Cheney is very expensive and hard to get to. Did I understand that Dr. Enlander also uses the yogurt in addition to the actual GCMAF? Who might other physicians be? And where did you get it UKXMRV?

Thank you. And best regards, Helene

 

[ukxmrv]

Hi Helene,
There is a doctor in Austria who is teaching patients how to make the MAF314 and supplying them with the starter culture. The only other doctors I know of would be Dr Cheney who you mentioned and Dr Enlander with his own version. If you can't see one of these doctors yourself you may be able to find a patient who is making it themselves and giving spare yoghurt to others.

 

[perrier]

Hi Helene,
There is a doctor in Austria who is teaching patients how to make the MAF314 and supplying them with the starter culture. The only other doctors I know of would be Dr Cheney who you mentioned and Dr Enlander with his own version. If you can't see one of these doctors yourself you may be able to find a patient who is making it themselves and giving spare yoghurt to others.

Thanks UKXMRV for your prompt response. Thank You. I am going to Europe shortly and I am wondering if a side trip to Austria would be worthwhile. Please let me know who this Austrian doctor is. And what the contact numbers are.

I recall there was some discussion about this Austrian doctor some time back. How long does it take to learn how to make this? And does this physician provide the 'starter"? And what does this cost?

Can anyone indicate how this Austrian yogurt differs from that of Dr. Enlander? I believe there are patients here of Dr. Enlander. I know that Dr. Enlander has been kind and generous enough to have posted here too.

Has anyone taken the probiotic yogurt and the injections together? Is this recommended or not?

I had heard that a doctor in California was to get the yogurt, but no further news.

Why does everything move at such a snails pace? Our days evaporate and do not return.

Thanks so kindy. Cheers. Helene

 

[xrunner]

Cheney's yoghurt is the same as the one from Austria and it's sourced from Prof. Ruggiero. I've no idea how this compares to Dr Enlander's.
You can learn to make it in an hour or so, the manual is detailed and takes you step-by-step.
I'm not sure having both yoghurt and injections is advisable, it's probably going to cause too much collateral inflammation.
See pm for other details.

 

[Daffodil]

i notice when i cook (still not too often), i dont collapse right after anymore...i find myself doing the dishes and cleaning the counters. i also find myself not running into bed after going out for groceries anymore....i sit at the PC for a while...i am able to open mail etc.

i still need a lot of rest and naps, and still have awful days....but there are clearly small changes after 7 injections.

 

[Sushi]

i notice when i cook (still not too often), i dont collapse right after anymore...i find myself doing the dishes and cleaning the counters. i also find myself not running into bed after going out for groceries anymore....i sit at the PC for a while...i am able to open mail etc.

i still need a lot of rest and naps, and still have awful days....but there are clearly small changes after 7 injections.

That is definitely progress--congratulations! Just be cautious about your energy expenditure cause we don't get out of the potential crash zone quickly or easily.

Best,
Sushi

 

[Daffodil]

thanks sushi. i am making a point not to push myself. basically, the illness is just a tad more bareable right now..

i went to ENT doc today. he didnt see anything drainable in my sinuses but i told him that dr. enlander wants to know why sinusitis shows up on my CT and MRI's of head. the doctor said that there could be fungus or bacteria but there is no pocket of pus to drain. he is referring me to some prominent sinus specialist and getting me a CT of the sinuses.

i cannot imagine i will have any drainage procedure, but it will be good to get a second opinion as to why there is inflammation there.

love u!
xoxo

 

[Daffodil]

hi all. i spoke to dr. enlander today. i told him i was doing better and he was very pleased. he told me he had just returned from Italy.

he is sort of on the fence about vit -d supplementation and didnt tell me to supplement. i have low 25-D and high 1,25-D.

I believe his group at mt sinai will be doing a genome mapping study at some point.

he reiterated that i should not push myself. he wants me to stay on the 0.15 dose for 2 more weeks, then increase to 0.2 for 4 weeks and then try 0.25 again. he did tell me that one of his patients improved quickly, overdid it by trying to jog, and had a very bad crash.

i ordered more hepapressin by mail.

dr. enlander felt it was a very bad idea to self medicate with mail-order gcmaf which may or may not be sterile. he seemed to be concered about people doing this. i told him about this "2nd generation" gcmaf in japan but he hadn't heard about it.

xooxxoxo

 

[Henk]

Hi Helene,

The Name of the austrian doctor is Uta Santos-Knig. Living in Vienna. She teaches individually, not in groups. It takes 2-3 hours.
The course including the starter Set for 6 month costs 1300 Euro. Apart from that you would need to order colostrum (125ml weekly).
You can get that online. The course including Starters for 12 month would be 2300 Euro plu 125 ml colstrum weekly.

That's all the info I have. Hope I could help.

Henk

 

[Xandoff]

Sushi,

Never exceed that ME CFS energy envelope! Keep Healing Alive!

 

[perrier]

hi all. i spoke to dr. enlander today. i told him i was doing better and he was very pleased. he told me he had just returned from Italy.

he is sort of on the fence about vit -d supplementation and didnt tell me to supplement. i have low 25-D and high 1,25-D.

I believe his group at mt sinai will be doing a genome mapping study at some point.

he reiterated that i should not push myself. he wants me to stay on the 0.15 dose for 2 more weeks, then increase to 0.2 for 4 weeks and then try 0.25 again. he did tell me that one of his patients improved quickly, overdid it by trying to jog, and had a very bad crash.

i ordered more hepapressin by mail.

dr. enlander felt it was a very bad idea to self medicate with mail-order gcmaf which may or may not be sterile. he seemed to be concered about people doing this. i told him about this "2nd generation" gcmaf in japan but he hadn't heard about it.

xooxxoxo

Hi Daffodil

Very interesting post. Thanks for passing on Dr. Enlander's comments about Gcmaf. Does he use the same Gcmaf that Dr. Kenny de Meirleir does?

I would dearly like to know this?

Also, do I understand that Dr E. did CT and MRI scans of your head? Is this regular procedure in his clinic?
Best regards, Helene

 

[perrier]

Hi Helene,

The Name of the austrian doctor is Uta Santos-Knig. Living in Vienna. She teaches individually, not in groups. It takes 2-3 hours.
The course including the starter Set for 6 month costs 1300 Euro. Apart from that you would need to order colostrum (125ml weekly).
You can get that online. The course including Starters for 12 month would be 2300 Euro plu 125 ml colstrum weekly.

That's all the info I have. Hope I could help.

Henk

Hi Henk:
Thanks. Have your used this product? Has it helped you? I am not sure what to do: my worry is that I am so reactive that I am worried that if I try Gcmaf I may not react well and I want a back up. This illness has totally worn me out and down. Cheers, Helene

 

[Daffodil]

hi helene. no i had the MRI and CT procedures done years prior, not through his office.

I think he uses the same GcMAF as Dr. DeMeirleir.

xoxoxo

 

[Henk]

Hi Henk:
Thanks. Have your used this product? Has it helped you? I am not sure what to do: my worry is that I am so reactive that I am worried that if I try Gcmaf I may not react well and I want a back up. This illness has totally worn me out and down. Cheers, Helene

No, I have'nt tried it. Too expensive for me. But I know people who have good results with it. Especially the gut is improving.
I took KDM's GcMaf and found it really helpful but stopped due to inflammation. But it sure did something. Some people share Maf 314 as well. If you find someone to share you could try without spending all that money.

 

[hixxy]

hi all. i spoke to dr. enlander today. i told him i was doing better and he was very pleased. he told me he had just returned from Italy.

he is sort of on the fence about vit -d supplementation and didnt tell me to supplement. i have low 25-D and high 1,25-D.

I believe his group at mt sinai will be doing a genome mapping study at some point.

he reiterated that i should not push myself. he wants me to stay on the 0.15 dose for 2 more weeks, then increase to 0.2 for 4 weeks and then try 0.25 again. he did tell me that one of his patients improved quickly, overdid it by trying to jog, and had a very bad crash.

i ordered more hepapressin by mail.

dr. enlander felt it was a very bad idea to self medicate with mail-order gcmaf which may or may not be sterile. he seemed to be concered about people doing this. i told him about this "2nd generation" gcmaf in japan but he hadn't heard about it.

xooxxoxo

So the jury is still out on whether correction of low Vit D levels is necessary for GcMAF to be effective??