MAF 878 Available - Anyone already using it?

[suzanne]

@ Deuce. I just typed out a response about my experience with the medical model here in Australia but decided against posting it. Not sure why. I guess I figured that the medicos are limited, in the main, by the lack of evidence, double blind trials etc.

So we are really moving about in a world at the fringes of the western medical model and that sure can be frustrating not to mention the huge personal cost of trying to pretend to live life when we can only engage and operate in a limited way. The drs that I have worked with that have helped me most are the ones that have been prepared to go outside of the medical models and to support me with appropriate testing regimes where I have trialled various treatments. Unfortunately it has all been trial and error.

I did the Marshall Protocol for 2 years and felt incredibly well until I had a relapse. So I do really believe that if we tinker with the immune systems and perhaps even treat some of the pathogen load, that an increased level of functioning is possible.

Unfortunately we often feel worse, and sometimes never better. Funnily, with the benicar I felt better immediately ( I think this may have been due to the anti inflammatory effect of the benicar) but now I cannot even take a nano dose of this. I guess something has changed for my body. I remain hopeful with GcMAF as I did experience good days within the weekly cycle of dosing, except I had a massive inflammatory crash at week 4. I am still trying to find a dose I can tolerate ( and even wondering if any of the MAFs may be easier for me to tolerate?).

Sorry this has turned into a huge blurb. Your post must have hit a pent up frustration that just resonated.

Let us know how you continue to get on with the MAF. It is probably something that will be a longish journey and so you will be the best judge of what level of symptoms you can tolerate and will adjust dosing accordingly.

RE anatabloc. It is great that you have had a good response on the anatabloc. It may be the anti inflammatory effect or the MAOI. When I have trialled, I never got past the massive headaches, on a really small dose...

ukxmrv I wonder why you can tolerate the MAF 314 but not the other types?

Apologies for the wordiness, I just wish all of this was easier for our 'select' group.

cheers
Suzanne

 

[ukxmrv]

Suzanne, I'm really stumped and amazed that I can tolerate the MAF314. I was fine on the MAF878 but I didn't see the good effects in that month that I did with the 314 version. The month on MAF878 was very strange in that I was badly hit by the flu (but so was my whole family) and I had weeks of terrible menstrual bleeding. Sorry if TMI.

Something changed in my immune system or pathogen burden in December 2011. After decades of having bad reactions to AB's I took some doxycycline for a sinus infection and felt better afterwards. This has never happened before. Usually I was worse off after AB's (and I've tried many types and different regimes).

My guess was that it was due to re-adding Immunovir to the mix. After years on Valtrex. Could only afford a small amount of each as the NHS won't pay for them.

My usual response to drugs is bad. Used to take ordinary supermarket probiotic yoghurt but after about 20 years the good effects on my stomach vanished.

No idea why this is a treatment I can tolerate on. The sad part is that the MAF314 seems to have plateaued me and I've never had the kick again that I got from my first trial. Still getting sick, have had colds, flues, stomach bugs but they are less severe. Very grateful for what gains I have made of course.

 

[deuce]

Thanks Suzanne, your response was really interesting. It sounds like you've really been on a journey. I wish you all the success you can find to get better.

GcMAF australia, thanks for your explanation of the herx being more apparent in ME patients. That's what I expected might be the case.

I am very grateful to be able to exchange here a learn a bit from this community. It's very welcoming and nice to find people who are caring and sharing.

Cheers

 

[baccarat]

Actually I have a question - if normal people (that is to say non ME/CFS sufferers) were to take MAF's, would they also feel very ill and knocked about by them?

yes, they can feel very ill. I know a couple, him with cfs, her apparently healthy "normal" (except for some arthritis) but initially she could not take the maf314 for longer than couple of weeks because she would feel wiped out.

I guess my question is really asking, does the fact that the MAF's create some terrible ill feelings when we take them demonstrate that they are actually hitting the very problem or cause of the ME? Perhaps nobody knows the answer to this ethereal question, but it intrigues me.

That's a very good question. It may depend on individual circumstances.
My friend could tolerate the 314 only after a course of ivermectin and antibiotics which would seem to point to the fact that it could trigger some adverse reactions in the presence of certain hidden infections. In my case I tried it last year following a nasty relapse after a couple of months of trying many things. It pulled me out of my relapse in about four weeks but the first couple of weeks especially I felt pretty ill and foggy. Then the ill effect reduced gradually but it's still there somewhat and it seems dose-dependent.

 

[Ember]

I guess my question is really asking, does the fact that the MAF's create some terrible ill feelings when we take them demonstrate that they are actually hitting the very problem or cause of the ME? Perhaps nobody knows the answer to this ethereal question, but it intrigues me.

Based on a 28-day probiotic GcMAF study, Dr. Cheney found that 24% of his CFS patients failed to respond or even got worse. He suggests that when patients with low nagalase activity and an over-active immune system have their nagalase activity drop into the very low range in response to probiotic GcMAF, “it's like their entire immune system blows up” (Paul Cheney Seminar - Part 2 at 48:50).

 

[Rita]

Are there any place in UK ,or in Europe,where there are selling MAF 878?
Because the shipping cost from USA is very high

 

[Sasha]

Are there any place in UK ,or in Europe,where there are selling MAF 878?
Because the shipping cost from USA is very high

Dr Enlander ships it to someone in the UK who will then ship it on to you - you would need to contact his office - details at:

www.enlander.com

 

[Sasha]

In general, if any of us has info that we think would be useful to others but it doesn't seem the thing to broadcast it, we can say what it is (e.g., 'I've got a UK address where we can get MAF') and ask people to send a private message to get the info.

A bit harder work but a good way to protect people's details, in case they're not happy to have them published.

 

[Sasha]

I have deleted my message

Thanks, Rita, that's good of you - you weren't to know!

 

[Sasha]

Please,delete yours number 428

Done!

 

[Anna Wood]

Hi I'm about to start taking MAF 878 - does anyone have any good experiences of it. I've read through most of the thread, but can't see any one reporting back........ Thanks Also, is anyone in the UK doing injections and if so how are you getting them prescribed (pm me if you like)

 

[Daffodil]

hi anna, I know a couple of people in a yahoo group called "CFSFMExperimental" who are doing well on it. You can join it and perhaps ask there; they will respond
good luck
xoxo

 

[GcMAF Australia]

Hi I'm about to start taking MAF 878 - does anyone have any good experiences of it. I've read through most of the thread, but can't see any one reporting back........ Thanks Also, is anyone in the UK doing injections and if so how are you getting them prescribed (pm me if you like)

There is a person who has links to GcMAF
She presented at the GcMAF conference in March.
I contact her regularly and have emailed her to assist in this matter
I think there is a GcMAF treatment centre being set up in Europe

 

[ukxmrv]

Hi Anna,

I only had a months supply of the MAF878 and changed back to the MAF314 because I didn't get the immediate kick-in of good benefits compared to the other.

 

[GcMAF Australia]

Hi I'm about to start taking MAF 878 - does anyone have any good experiences of it. I've read through most of the thread, but can't see any one reporting back........ Thanks Also, is anyone in the UK doing injections and if so how are you getting them prescribed (pm me if you like)

Hi Anna
Here is an email i received from Joan Crawford who presented at the GcMAF conference


"The patient led initiative is being led by a lady called Susan. She is has a lot on over the next few weeks so I have offered to be a contact to send out information over the next few weeks, so please pass on my e-mail to the group but please make sure they know I am not leading this venture and it is entirely a patient led group deciding for themselves to take GcMaf.

My role is largely as an independent assessor of patients. So when someone decides they want to try thyroid meds, the Perrin technique or GcMaf or whatever intervention they can ask me to assess them before and after. This makes it important that the context of who I am and what I can and cannot do is shared clearly with people before they contact me..... I can only pass on the standard info Susan hands out and also point them in the direction of Immunobiotech/GcMaf website. Patients need to read and do the deciding whether to take GcMaf for themselves.

It is important that people understand the context of what we are doing and how patients can go about trying GcMaf.....

Hope that makes sense?
joan.crawford@virgin.net
"
best wishes

 

[Anna Wood]

hi anna, I know a couple of people in a yahoo group called "CFSFMExperimental" who are doing well on it. You can join it and perhaps ask there; they will respond
good luck
xoxo

Thanks - will check it out

 

[suzanne]

Hi Anna
I have just ordered some from Dr E. He is going to ship it to Australia. It will be about 2 weeks before I get to trial it...I am hoping it may give me less of an inflammatory flare than GcMAF injections. I will post when I have something to report.

 

[suzanne]

I am hoping some of you taking the MAF 878 dehydrate form may be able to help me with. I have just ordered it...and am waiting for it to arrive.

I have read all your posts but have some questions ( forgive me if I missed some things):

1. When the starter arrives, can I freeze some and only make a small batch?
2. I assume I have to add kefir to the mix- is that kefir grains ( real) or is the kefir made up and refrigerated (eg from a health food shop) going to be ok?
3. When I have made the yogurt can I freeze some of the made up product/yogurt or does this make it ineffective?
4. Any tips with making this up- I assume it has to sit out on the bench top for 5 days. Where I live the daily temperature is currently about a maximum of 65 degrees- will I need to use a heat sourse of some sort...I seem to have read about this somewhere but now I cannot find it!

Any updates on how you are all doing on the MAF 878 and MAF 314?

I am planning on starting on a dose a lot lower than what Dr E recommends. They have advised 75ml but I am thinking about 1 teaspoon, which I think is 5 ml.

Thanks all for your tips or thoughts that will be handy

 

[ukxmrv]

The freezing is controversial. I've always been told not to every time I've asked.

However, I did freeze the yoghurt (both MAF314 and 878) and I also used the made yogurt to create some more. In both cases I got a kick from it. Over time though it wears off if further batches are made. Know other patients who have done this was well. I've only frozen for small periods of time but I know one patient who thawed a batch of already made MAF314 after 7 weeks and they still felt the effects.

I used kefir grains to produce a liquid milk kefir (and then put the grains back in the fridge). Others bought kefir from a shop.

As for freezing the starter. Once again, I was told not to. Not sure about the new dehydrated version though. Hopefully someone will know for sure. You can always email Dr E's office and ask. I got printed instructions with mine.

The heat source mentioned earlier was an aquarium warmer maybe (memory not too good sorry).

 

[suzanne]

Just got an emails:
Dr Enlander's office says that I just need to refrigerate the dehyrate that I do not make up in the first batch.
Thanks ukxmrv.

BTW, ((a bit off topic) I have experimented this week with a tiny amount of pycnogenol. I have been couch ridden. My symptoms feel just like it is mobilising mercury ( based on how if felt when I tried cutlers protocol). I did some research and have found articles citing that pyc. can increase glutathione. Interesting as I also felt this unwell on the B12 protocol.

I am going to rest it all for a bit and start again with the MAF 878 when it gets here. Hoping for a lucky break.