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

[ukxmrv]

Hi GcMAF,

Patients of Dr Cheney's are buying a starter culture and preparing their own MAF314.

Other patients are buying their cultures from a doc in Austria and making their own.

I'm assuming that the same MAF314 culture is being shipped to all.

Don may be using the same Kirkman colostreum that Dr Cheney supplies to his patients?

I've only just restarted on it again after a long break. It's been good for me so far but I lost the gains from late last year when I couldn't get any MAF314. Starting just about from the same level and already benefiting but not as quickly as last time.

 

[Daffodil]

i am on injecitble gcmaf. yesterday. SEVERE lower back pain began again. i cannot move without intense pain. this happened the last time, i assume due to spinal inflammation from the GcMAF....it lasted about 4 - 6 weeks and i felt better afterwards...perhaps this is some kind of herx-like effect...?

 

[Carla-nl]

Daffodil, are your results from last week back in yet?
Did you also test for Kidney function ?
Did you experience an increase in muscle weakness prior to the increasing lower back pain ?

Carla

 

[Tito]

Daffodil,
A simple question: why are you still taking that drug? You only seem to have problems with it.
More generally speaking, it seems nobody reported LASTING positive effects with this. Or am I missing something?
Tito

 

[Sushi]

Daffodil,
A simple question: why are you still taking that drug? You only seem to have problems with it.
More generally speaking, it seems nobody reported LASTING positive effects with this. Or am I missing something?
Tito

Yes, people do have trouble with GcMAF and it really needs some very good testing to see if you are a good candidate and, if you are, what would be an appropriate dose. But, yes many are doing well with it and holding their gains.

I am one of them. Another patient I know has gone from being housebound to being in the second year of medical school and others have been able to go back to work part or full time.

It is tricking to identify good candidates and it also needs careful monitoring. Probably the most common problem people experience is inflammation--and this is dose dependent and also seems to relate to what co-infections you have--hence the need for testing.

GcMAF is not a drug--it is something that the healthy body produces naturally. Those with serious diseases often produce an enzyme (nagalase) that interferes with the body's ability to produce GcMAF--hence injecting it or taking it in a yogurt, is a work-around. Taking or injecting it also lowers nagalase for most patients.

Best,
Sushi

 

[Tito]

Were there any studies published about the lasting effects of gcmaf? I mean real results, with people working again and not people just "feeling better". I remember a post from someone who made a calculation of the costs of the treatment versus its benefits (with different outcomes: working full time, working part time, being independent but not working, etc).

 

[Sushi]

Were there any studies published about the lasting effects of gcmaf? I mean real results, with people working again and not people just "feeling better". I remember a post from someone who made a calculation of the costs of the treatment versus its benefits (with different outcomes: working full time, working part time, being independent but not working, etc).

There have been some studies, though due to the cost of "official studies" (many millions--which would usually mean having access to either government or pharmaceutical money--which is unlikely to happen for something that can't be patented), they are not double-blind and all that good stuff. They have been quoted in medical conferences but I don't think they are in journals yet. There was one following the treatment course of approximately 110 patients.

The person who did that cost analysis, did it near the beginning of the time when patients were starting to take GcMAF, so it only covered short treatment. Also, the costs of GcMAF therapy vary hugely according to your doctor (and testing) and the source of the GcMAF itself (which also varies widely), so this would be pretty hard to accurately calculate.

For me, being able to lead a more normal life and study again, (which I am doing) is worth a huge amount.

Sushi

 

[ukxmrv]

It seems that it is always the same for experimental treatments for ME and CFS. Some helped, some left worse off and some with no effect at all.

I keep trying things and hoping that one day, I'll be in the first catagory for once. MAF314 is working for me so far. I can quite understand why we would feel frustrated when something doesn't work or when it makes us worse as that is what normally happens to me.

 

[Ronan]

I have been on GcMAF for over a year and a half now with moderate improvements. I recently got a Kidney and Liver function test and both were fine.

 

[Daffodil]

hi all. sorry i have not been here in a while.

i am presently frustrated with the GcMAF. it was helping...and I am still better than when i started...but what seems to happen now is, if i take a dose or 2, all i get is severe inflammation. i am still waiting for the good period i had before.

i am tempted to say the GcMAF has stopped working for me, but maybe i am just being impatient again. its been almost 9 months and the fatigue, malaise and fog is still there. the only change is that i am no longer suicidal and the agony is bearable.

not sure what i am doing wrong. i take very small doses and now i take them further apart. i had hoped for more by now.

 

[Carla-nl]

I think IRIS. Can you get your hands on anything anti viral (perhaps even Artusenate) and a proper anti histamine ? Do you have a (alternative) physician with you in this ?

Some people are never able to tolerate a full dose but with co-treatment (anti viral, antibiotic, antihistamine) they do stabilize and improve even on 10ng a week. If your liver and kidney values are OK you seem to fall in this category.

 

[Sushi]

hi all. sorry i have not been here in a while.

i am presently frustrated with the GcMAF. it was helping...and I am still better than when i started...but what seems to happen now is, if i take a dose or 2, all i get is severe inflammation. i am still waiting for the good period i had before.

i am tempted to say the GcMAF has stopped working for me, but maybe i am just being impatient again. its been almost 9 months and the fatigue, malaise and fog is still there. the only change is that i am no longer suicidal and the agony is bearable.

not sure what i am doing wrong. i take very small doses and now i take them further apart. i had hoped for more by now.

I'd guess that you aren't waiting long enough for the inflammation to die down. Don't see how GcMAF could "stop working." It is something that the body produces naturally and macrophages are vital to immune function.

It takes more like months than weeks for inflammation to die down once it really kicks in (IRIS as Carla said). Then when you take another dose, it just revives the inflammation. Also, are you taking really small doses? Not 15 - 20 ngs but more like 5 ng? Five ng still activates vastly more macrophages than normally happens in a healthy body.

Sushi

 

[Daffodil]

hi all. thanks for the input.maybe i will look into antihistamines. i cannot get anyone to prescribe antivirals because my titres are so low. ironic, since i disposed of bowls full of them last year.

i am in a bad way. i am sleeping 18 hrs a day now. i have diarrhea every 3 days like clockwork. head swollen. no energy. depression. loss of hope.

maybe i have to wait a few more weeks before i take another gcmaf dose, and then i wil take only 5 ng.

xox

 

[suzanne]

Hi Daffodil,
I too have had severe inflammation after taking GcMAF once a week for 5 weeks. I have been off it for 3 months and the inflammation is only just starting to settle, so like Sushi indicated it takes months to settle not necessarily weeks. I would suggest that you are going too fast back into the dosing and may need 3 months off and then trial a tiny dose.

I realise we are all different, but for what it is worth , I have had the most sever back and hip pain I have ever experienced and these were not symptoms before I started the Gc MAF. I started on 20 ng which was obviously too much as I used to have 4 days of intense symtpoms which started from the first dose I took. Then tings dose dived at week 5- like a cumulative inflammation and I had chronic headpain, a worsening of my migraines and back pain so severe I was bed ridden for nearly a week. Things are only very slowly subsiding after 3 months.

In desperation I have trialled a tiny dose of Olmetec ( 5 mgs 5 times a day) and havent had a migraine for 3 days and so I am happy about that. This drug worked for me on the marshal Protocol many years ago and is a known and potent antiinflammatory that I can tolerate- beware if you try this though. You need to restrict all vitamin D sources- from sun and food. It may work with some similar pathways to GcMAF through immune stimulation and the Vit D receptor. The dose I am on is significantly smaller than what is taken on the MP ( 160mg a day in divided doses- which makes me very ill!!!!!)

It is only day 5 of trialling this tiny olmetec dose (early days I know) but it does seem to be helping my inflammation- particularly migraine and hip ache.

I thought I would update on this as it may be of some use to someone in the future.

Given that the GcMAF seems a bit powerful for me at the moment, I have ordered some KMAF from Biopure. It hasnt arrived yet but I will keep everyone informed of how that goes vs the GcMAF. I am starting to think I might need to go more gently to increase my immune system and when I get to a weller base ( via olmetec and KMAF, low doses) I will try GCMAF again. It is frustrating but I now recognise that even tiny tiny amounts of things that boost my immune make me feel really scik ( I recently trialed taking a few grains of transfer factor by opening a capsule and taking about 1/100th of 25 mg....and I was ill for days- hard to believe but true). I am now being a lot more cautious.

I hope that something helps you soon-

Suzanne

 

[Daffodil]

thanks Suzanne you did help! i will clearly have to be a lot more patient.

the lower back pain / burning is just starting to settle now. next time, i am taking 5 ng for sure!

i paid so much for this GcMAF, i don't want to buy the yogurt just yet..but I hope it works for people!!

xoxoxoxoxoxo

 

[suzanne]

No worries daffodil...I hoped my two bobs worth might help ( aussie language that may not translate?)

Sushi helped me get a better perspective on the inflammation and dosage and it really helped me from perpetuating more symptoms than were necessary- so I was keen to try and pass some of Sushi's advice along. It sure has helped me. I hope you find a more sustainable treatment regime. soon. Keep us in the loop.

I will keep everyone posted on how I do when I add some KMAF- but I am going to go with only a drop every other day to start with- I know it just sounds ridiculous, but it is easier to titrate up than deal with a cascade of too much inflammation.

 

[Daffodil]

Hi Suzanne. Sushi has helped me a lot, too. I would probably not have lasted this long without her. Heck, I might even be dead.

I am just so grateful for this message board, in general. I wonder how homebound people managed without being able to network like this, years ago.

 

[maryb]

Suzanne I share your sensitivities, its hard for people to understand how just the tiniest smidgeon of anything can tip our body out of its fragile balance, hope the KMAF works for you.
Daff - I agree - that Sushi... she's the tops

 

[Forebearance]

It doesn't sound ridiculous, Suzanne.
I hope the KMAF agrees with you!
Fore

 

[Sushi]

.

...I will keep everyone posted on how I do when I add some KMAF- but I am going to go with only a drop every other day to start with- I know it just sounds ridiculous, but it is easier to titrate up than deal with a cascade of too much inflammation.

Hi Suzanne,

I'm glad that the inflammation is finally starting to go down.

I don't know how KMAF works (do any of us?) but if it takes a few days after a dose to reach your peak macrophage activation like the injected form, maybe you should first try a bigger gap between your "drops" to make sure the effect isn't building up. As you say, much easier to titrate up than to titrate down!

Sushi