MAF 878 Available - Anyone already using it?

[Daffodil]

ok so i have now heard 2 stories of people relapsing. has anyone asked demeirleir about this? whats going on?

 

[Lou]

Hi Lou...there is one other person who reported hair loss too, on another forum but I cannot find it now.

I read that mold also can cause hair loss. So maybe fungal infections in general...?

Maybe so, Daffodil, but why is gcmaf triggering the fallout, if that indeed is the reason?

 

[SickOfSickness]

I'm wondering if some of us could chip in to get a trial amount. Say a 3 day supply. (So it lasts 12 day if you take 1/4 each day.) I would be willing to order starter and immediately repack and ship it out to everyone.

Would this amount be worth trying? At least we wouldn't be out $137 if we didn't tolerate it, but it would raise the cost since it was shipped twice and repacked.

Or I'm interested in sending out or receiving yogurt. Shipping it frozen and keeping it cool costs more, but then everyone doesn't have to wait, get the milk and kefir, and do the work.

 

[Sushi]

...
This is awful! I don't want to do this for a year and then relapse! Another useless treatment..I cannot handle.
...

Why do you think you would relapse? What evidence are you referring to?

Best,
Sushi

 

[maddietod]

I'm wondering if some of us could chip in to get a trial amount. Say a 3 day supply. (So it lasts 12 day if you take 1/4 each day.) I would be willing to order starter and immediately repack and ship it out to everyone.

Would this amount be worth trying? At least we wouldn't be out $137 if we didn't tolerate it, but it would raise the cost since it was shipped twice and repacked.

Or I'm interested in sending out or receiving yogurt. Shipping it frozen and keeping it cool costs more, but then everyone doesn't have to wait, get the milk and kefir, and do the work.

SOS, I've asked Dr. Enlander on FB (just last night) if there's a best way to do this, as I have more starter than I can use before it goes bad. From what I've read and seen, the starter is shipped at room temperature, but the yogurt has to be cultured at 80 degrees, and then it has to be refrigerated. He has said that he doesn't know if it remains viable once frozen.

I'm guessing that the starter could be divided and shipped again, but I don't actually know how long it stays viable at shipping temperatures. Also, it has to be kept in glass only. I think it would have been shipped in plastic if that was OK. So no containers with screw-on plastic or metal lids.

I think sharing this way is a great idea for those of us taking small doses. I hope we can come up with a way to make this work.

 

[SickOfSickness]

The shipping container has a glass lid? Is there a rubber seal or anything that comes in contact with the starter?

Yes, although he hasn't said frozen is OK, some of the posts in this thread show it would have effect. Probably less effect.

 

[maddietod]

The shipping container has a glass lid with a rubber sealing gasket. Like this:

 

[mellster]

The MAF314 is made with one packet of both starters every 8 weeks (in between you use the yoghurt to incubate). That would be the safest place to start so that the person trying it out can start from scratch rather than shipping live yoghurt stuff around. For the MAF 314 one 8 week trial course (2 starters, one of each starter #1 and #2) would cost around $350 though. And you need to add one bottle of fresh colostrum each week. This is supposedly long term treatment, usually 6-12 months, so I'd say you need those 2 months to get a sense of how well it works for you.

 

[alice]

The shipping container has a glass lid with a rubber sealing gasket. Like this:

Earlier someone wrote that some of the starter had leaked out of the jar - my thinking is that a rubber sealing gasket should have prevented leakage from occurring. Packages get bounced around quite a bit while in transit I suspect. I may be all wrong, but if something can leak out, something could also "leak" into the jar - maybe I'm a germ freak.

Too bad the starter can't be in powder form.

Has anyone used goat yoghurt?

 

[alice]

Dr.Enlander has a new video on his Facebook page of a short interview with one of this patient's and himself.
https://www.facebook.com/derek.enlander
The patient has been taking GcMaf. He did not say that it was GcMaf878, but I suppose that it is. The patient is doing well. Her diagnosis is FM/CFS. She was/ and is able to work fulltime while doing the treatment..

 

[Sushi]

Dr.Enlander has a new video on his Facebook page of a short interview with one of this patient's and himself.
https://www.facebook.com/derek.enlander
The patient has been taking GcMaf. He did not say that it was GcMaf878, but I suppose that it is. The patient is doing well. Her diagnosis is FM/CFS. She was/ and is able to work fulltime while doing the treatment..

I just watched. I'd guess it is injected GcMAF since she had been taking it 5 or 6 months. I don't think MAF 878 has been available that long. Also, she is taking hepapressin and that is usually given with the injected GcMAF.

Nice to see someone doing well. She even took an overseas trip for work!

Sushi

 

[maddietod]

My sleep has gotten worse and worse during this week on a 1/4 dose of maf 878. Last night it took 45 minutes to get to sleep, and then I woke up every hour.

Is this a response others have seen to MAF? Any thoughts?

 

[alice]

I just watched. I'd guess it is injected GcMAF since she had been taking it 5 or 6 months. I don't think MAF 878 has been available that long. Also, she is taking hepapressin and that is usually given with the injected GcMAF.

Nice to see someone doing well. She even took an overseas trip for work!

Sushi

So if a person takes Maf 878 or Maf 314 then they will not be doing the hepapressin or Nexavir injections? You mentioned that you use GcMaf eu (injection) and Nexavir (injection?). What is your opinion of Nexavir.

From what I have gathered from this website
http://www.mecfsforums.com/index.php/topic,3002.0.html
(these are posts from 2010)
different doctors use different types of this - for various reasons, Nexavir (kutapressin) is porcine liver extract. According to one of the posts, Dr.Cheney uses buffalo liver because he indicates pig liver extract is bad for his patients (toxins in some pig liver?).. Dr.Cheney's buffalo liver extract I think is in gel form, so maybe transdermal?
Dr.Enlander uses hepapressin from Argentinian bovine liver.
I imagine each doctor has his very own reason for going with a certain product.
Wonder how important it is to take one of these along with the MAF? Sushi, what was your experience with Nexavir? Incidentely, are you still doing the GcMaf injections?.Thanks
Alice
I'm still trying to decide which route to go - therefore all these questions. Thanks. Alice

 

[Sushi]

So if a person takes Maf 878 or Maf 314 then they will not be doing the hepapressin or Nexavir injections? You mentioned that you use GcMaf eu (injection) and Nexavir (injection?). What is your opinion of Nexavir.

From what I have gathered from this website
http://www.mecfsforums.com/index.php/topic,3002.0.html
(these are posts from 2010)
different doctors use different types of this - for various reasons, Nexavir (kutapressin) is porcine liver extract. According to one of the posts, Dr.Cheney uses buffalo liver because he indicates pig liver extract is bad for his patients (toxins in some pig liver?).. Dr.Cheney's buffalo liver extract I think is in gel form, so maybe transdermal?
Dr.Enlander uses hepapressin from Argentinian bovine liver.
I imagine each doctor has his very own reason for going with a certain product.
Wonder how important it is to take one of these along with the MAF? Sushi, what was your experience with Nexavir? Incidentely, are you still doing the GcMaf injections?.Thanks
Alice
I'm still trying to decide which route to go - therefore all these questions. Thanks. Alice

Hi Alice,

Some may be taking Nexavir or Hepapressin with MAF 314 or 878, but it is usually given with the injections and since this person has been taking GcMAF for about 6 months, I think it is likely she is taking the injectible form.

I don't use the GcMAF.eu form -- I use the same source that Dr. Enlander uses and my doctor precribes the porcine type of Nexavir by injection. His patient data indicates that some form of Nexavir plus GcMAF gives a better patient response than either by itself. While Nexavir is not an anti-viral itself, it does help deal with viral infections by doing something like healing the cell wall (very layman's terminology--I don't know how to describe it).

Dr. Cheney does use a transdermal form but it is only available to his patients or to patients of a few doctors who work with him.

Since I have been taking Nexavir almost as long as GcMAF by injection, I can't separate the effects. But, they have helped me and yes I am still taking injections though I will probably go on a maintenance dose soon.

Questions are totally welcome! It's just that everything is still experimental with this protocol so there are not a lot of definite answers.

Best wishes,
Sushi

 

[Lou]

A question for Sushi:
Can't remember exactly what Dr. Snyderman said about antibiotics and gcmaf use. Was it 'can't do them at all when taking gcmaf' or was it 'wait a few hours after injections before using diflucan? Thanks.

 

[Sushi]

A question for Sushi:
Can't remember exactly what Dr. Snyderman said about antibiotics and gcmaf use. Was it 'can't do them at all when taking gcmaf' or was it 'wait a few hours after injections before using diflucan? Thanks.

Hi,

I don't know what Dr. Snyderman said, but doctors do give antibiotics and also diflucan at the same time as GcMAF. With any drug, since there have been few studies about what might block the effect of GcMAF, it is probably better to take them 6 hours after the GcMAF. One doctor who has done some study of this mentioned 6 hours after as the safest time.

Best,
Sushi

 

[maddietod]

I found 3 oz (89ml) glass clamp-top jars at Bed Bath and Beyond this morning. A pack of 4 costs $5.00. 3 oz is a bit more than 1/3 cup, so these would work to ship starter, for people taking a small dose, or wanting to try it for a week at full strength. The clamp isn't particularly strong; taping around the seal would be smart.

http://www.kitchencollection.com/temp_products.cfm?sku=00928651&alsobought=00547634

I also saw these : http://www.boscovs.com/StoreFrontWeb/Product.bos?itemNumber=100720 which are 4 oz and have a stronger seal. But the plastic goes all around the inside of the lid, and didn't feel like I could cut it off.

 

[Lou]

Hi,

I don't know what Dr. Snyderman said, but doctors do give antibiotics and also diflucan at the same time as GcMAF. With any drug, since there have been few studies about what might block the effect of GcMAF, it is probably better to take them 6 hours after the GcMAF. One doctor who has done some study of this mentioned 6 hours after as the safest time.

Best,
Sushi

There again, thanks very much.

 

[Ember]

I ordered my MAF 878 through my naturopath. His office just called to say that it arrived leaking badly and unsafe for sale. I think I've read comments about others experiencing broken seals on arrival, so I'm raising the safety concern. The packaging obviously needs attention. I'm glad I didn't have to deal with the problem myself.

 

[Forebearance]

My MAF 878 starter had leaked during shipping, but it looked like what happens to liquids when they fly on an airplane and the pressure change forces some liquid out. So I wasn't alarmed by it.

Maddietodd, your insomnia sounds like a reaction to poisons. It could be the MAF is making you more sensitive to your environment, in which case I would try washing your bedding. Or it could be the MAF is causing your body to kill something that is releasing toxins internally, in which case I would take some toxin binders. Those are just ideas.

Elisabeth, how are you doing?

I took my second tiny dose today, and I am wiped out, but not Herxing. At least not so far.

Forebearance