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

[Charles555nc]

HI,

I was on antiretrovirals, but I couldnt tolerate them past 4 or 5 days. Im now two weeks on GcMAF and seem to be improving. I take 4000iu of vitamin D and exercise (non impact) after I started the injections, to help activate my macrophages. I started with a double dose because Ive read that people who are worse need a larger starting dose-to make them responders. I did have a huge spike in depression and rage, smashing a keyboard to bits, but luckily I had some left over low dose naltrexone that has lowered that considerably. (Only had one pill of ldn left). I take the form of GcMAF you can order online from Europe but it is terribly expensive, like 900+ dollars for 8 weeks worth.

I tested double positive for XRMV, serology and antibody, basically I had tried everything else except Nexavir and Ampligen (got turned down for positive ANA levels).

I make sure to take 50mg zinc gluconate on non injection days, and am trying to add in glutithione and some small amount of selenium- which I couldnt tolerate before.

Interesting point: I was on the marshal protocol which is mainly taking benicar to bring down a certain type of vitamin d. I did very well on that for about 8 months and then got worse. Perhaps ours bodies make too much of a certain kind of vitamin d to try and activate macropages that are suppressed by nagalase. Would make an interesting theory across two completely seperate treatments.

 

[Spring]

i've booked for the nagalase test at red labs, so they will draw blood at Himmunitas clinic.do you know the cost for the room at the eurovolleycenter?the website doesn t tell anything

i see it is very close to the clinic, is it possible to walk to Himmunitas from eurovolley?

Hi Lobba123,

I've slept at the Eurovolleycentre once. You find the price in euro's here: http://www.eurovolleycenter.be/frame_N.htm For one person, one night it's 66,00.
Don't expect to much of it, but the people are very friendly and they bring you to Himmunitas for something about 6 euro's. And they also pick you up when you call them you're ready. It is possible to walk for a healthy person, but I think it's at least a 20 minutes walk.

Hope this helps you,

Spring

 

[lobba123]

thank you very much, i'll chose a cheaper place since the flight got very expensive in summer period....i have seen in google maps there is a close train station to that area so i guess moving from city center will be easy

thank you very much for the feed back

Hi Lobba123,

I've slept at the Eurovolleycentre once. You find the price in euro's here: http://www.eurovolleycenter.be/frame_N.htm For one person, one night it's 66,00.
Don't expect to much of it, but the people are very friendly and they bring you to Himmunitas for something about 6 euro's. And they also pick you up when you call them you're ready. It is possible to walk for a healthy person, but I think it's at least a 20 minutes walk.

Hope this helps you,

Spring

 

[Spring]

I was on antiretrovirals, but I couldnt tolerate them past 4 or 5 days. Im now two weeks on GcMAF and seem to be improving. I take 4000iu of vitamin D and exercise (non impact) after I started the injections, to help activate my macrophages. I started with a double dose because Ive read that people who are worse need a larger starting dose-to make them responders.

Hi Charles555nc

Do you take the Gc Maf under supervision? Do you know what responder you are? Im a high responder and Dr. De Meirleir told me to stay out of the sun and not to take vitamin D supplements. Every 4th injection he checkes the vitamin D and calcium levels because they can get to high and that can be dangerous. I know Cheney prescribes sunbeds to low responders to try to make them respond better, but I bet he will check the vitamin levels too.

Ive never read about a double dose. High responders recieve half a dose at De Meirleirs because the inflammation can get to bad the body cant handle the cytokines and will make people worse. So Im concerned about you taking the double dose. I understand you will get better as soon as possible but Im afraid you will make things worse.

Wish you good luck!

Spring

 

[Sushi]

HI,

I'm now two weeks on GcMAF and seem to be improving. I take 4000iu of vitamin D and exercise (non impact) after I started the injections, to help activate my macrophages. I started with a double dose because Ive read that people who are worse need a larger starting dose-to make them responders. I did have a huge spike in depression and rage, smashing a keyboard to bits, but luckily I had some left over low dose naltrexone that has lowered that considerably.

Hi Charles,

First of all good luck with GcMAF! But I'd also like to second Spring's concern about both supplementing Vit D and the double dose of GcMAF. The only people I've known of who had serious (and dangerous) responses to GcMAF took a double dose. It is important to do this protocol under medical supervision, as there are things to watch out for and regular testing of Vit D and calcium are very important.

Vit D has been known to "spike" in people taking GcMAF and most of the doctors with experience using GcMAF advise patients not to supplement it. I was also told the same--don't take either Vit D or calcium while on GcMAF.

The rage, may well have been due to the double dose, as too high levels have caused anger in depression in a number of patients.

Wish you the best,
Sushi

 

[Sushi]

thank you very much, i'll chose a cheaper place since the flight got very expensive in summer period....i have seen in google maps there is a close train station to that area so i guess moving from city center will be easy

thank you very much for the feed back

Hi lobba,

I have stayed both at the Eurovolley and at a small hotel close to the train station in Vilvoorde (the closest suburb to the clinic). This hotel cost about the same as the Eurovolley, but there may also be less expensive hotels in Vilvoorde. If you stay in Vilvoorde you can get a bus from the Vilvoorde train station to the clinic. It is much closer than the city center.

You can also get this same bus from the city center, but I don't think you can go directly to the clinic from the city center by train.

When I stayed at the Eurovolley, another patient said he was walking to the clinic and it took 5 to 10 minutes.

Hope this helps! I found Brussels to be quite an expensive city in most every way.

Sushi

 

[Spring]

Hello all 'users',

Does anyone experience a light-headed feeling for a few moments when lying down or turning your head while your laying down? I'm wondering if it's my neck or it's the Gc Maf because it started after my first injection, but I have also problems with my neck.

In my back muscles I have also a burning feeling. I wonder if this is from the Gc Maf or using my back muscles more or wrong. I don't know if it's the same feeling described above as 'inflammation of the back'.

Best wishes,
Spring

 

[vli]

Does anyone experience a light-headed feeling for a few moments when lying down or turning your head while your laying down?

I definitely had this after my first shot, less so after that.

 

[lobba123]

i also feel it at every injection but in any position but it is a vey light feeling more like light dizziness (it could be annoying only for driving a car race), it goes away in a couple of hours.i also feel very relaxed for a couple of hours

thanks for the feedback sushi:
i have found there is a train from central station every 10-15min, it takes about 10min to get to vilvoorde station so i think i will choose the cheapest option in city center

I definitely had this after my first shot, less so after that.

 

[lobba123]

i also want to report what italian researchers told me:
the best method is having a single vial per month kept in the fridge at 2-4 and have gcmaf never frozen, this way it will keep maximum potency.
they refered to gcmaf.eu because it is the only one assayed and studied as regards potency according to storage and potency keeping it at 4 or little lower is maximum for 4 weeks and little lower at 8 weeks.being a glycoprotein they said that every time it gets frozen it loses potency

if one has to frize it it is better to divide it in single syringes

 

[vli]

i also want to report what italian researchers told me:
the best method is having a single vial per month kept in the fridge at 2-4 and have gcmaf never frozen, this way it will keep maximum potency.
they refered to gcmaf.eu because it is the only one assayed and studied as regards potency according to storage and potency keeping it at 4 or little lower is maximum for 4 weeks and little lower at 8 weeks.being a glycoprotein they said that every time it gets frozen it loses potency

Can other KDM patients please confirm they've been told to freeze as well??? I've been keeping it all in the freezer since January; please don't tell me I've been doing the wrong thing.

 

[Berthe]

Hi Vli,

We are all told by DML to keep it in the freezer. It didn't lose its potency because the side-effect were kicking in real hard.

Love,
Berthe

 

[lobba123]

potency is lowered something like 10-20% by freezing.only freezing more than once can kill all activity (this was confrmed by bgli too)

to keep maximum potency a good quality fridge with temp display at 3-4 is needed.

be aware that normal home fridges are not reliable, low quality and have temp at about 7 with a lot of variability.i am talking about fridges at professional level (some home friges toplevel are like this) where you can set the temp the way you like and monitor by a display.otherwise it is better to freeze gcmaf

this is refered to gcmaf.eu version, BGLI or KDM might be the same thing but those were not assayed or studied by italian researchers so it is better to do what KDM or BGLI say

Can other KDM patients please confirm they've been told to freeze as well??? I've been keeping it all in the freezer since January; please don't tell me I've been doing the wrong thing.

 

[froufox]

Yes I agree with u Berthe, freezing KDM's GcMAF doesnt seem to affect the potency. Even freezing it twice ie defrosting a vial and then dividing it up into smaller doses and refreezing doesnt appear to make much difference either...at least it feels that way to me as I still have reactions to it, eg depression, fatigue, sore throats. Whether/how much the potency is reduced to some degree is hard to know I guess, but presumably its not that significant.

 

[Charles555nc]

From David Noakes/GcMAF.eu:

If you have to, you can freeze it only one time without too much loss of potency, although we dont recemmend it.

Personally I would never ever freeze mine. There seems to be little positive benefit and only a risk of a weaker GcMAF. And remember u need adequate levels of vitamin d and mild to moderate exercise, in addition to GcMAF, to activate your macrophages. One dose of low dose naltrexone seems to really cut through the depression and rage I was having.

 

[Berthe]

I wouldn't take vitamine D. As suggested before Cheney and De Meirleir check your vitamine-levels every month when you are on Gc MAF. To much vitamine D can be dangerous. It also is of no influence on the activity of the macrophages because the modified Gc MAF protein is not the same as the Gc Protein that activates the vitamine D. Sorry for my bad english due to major brainfog.

Love,
Berthe

 

[lobba123]

researchers reported the opposite about vitamin D, although you do have to monitor closely every 4 weeks both 25oh and 1,25oh
of course the effect on CFS is different than just an hbv or hiv synthom free infection where there are no sides from gcmaf, no inflammation and so on.
in these cases getting the higher potency from gcmaf and vitamin d is better especially if VDR is not the one with highest response

i do understand CFS is much different and from your reports it can be as severe as aids so what ever the amount of gcmaf you get a strong response from the body.
feeling no difference when taking gcmaf can also seem strange because you have no tool but blood tests to see if it is having any effect, i just took cd4/cd8 counts at 7th shot to see if it having any effect on immune system and vitamin d counts

I wouldn't take vitamine D. As suggested before Cheney and De Meirleir check your vitamine-levels every month when you are on Gc MAF. To much vitamine D can be dangerous. It also is of no influence on the activity of the macrophages because the modified Gc MAF protein is not the same as the Gc Protein that activates the vitamine D. Sorry for my bad english due to major brainfog.

Love,
Berthe

 

[Sushi]

Hello all 'users',

Does anyone experience a light-headed feeling for a few moments when lying down or turning your head while your laying down? I'm wondering if it's my neck or it's the Gc Maf because it started after my first injection, but I have also problems with my neck.

Best wishes,
Spring

I sometimes get a bit of vertigo when I go from lying to sitting and other positional changes. Since I only get it on "high macrophage" days I think it is related.

Quite liveable, but good to know I am not the only one!

Sushi

 

[lobba123]

wow, so the light head feeling/mild dizziness might be related to macrophages activation?

how many injections to see a difference on white blood cells counts?

i had no change on blood tests but maybe too early because i was at the 5th injection, i m going to recheck at the 10th injection and then check nagalase at about 18th injection

I sometimes get a bit of vertigo when I go from lying to sitting and other positional changes. Since I only get it on "high macrophage" days I think it is related.

Quite liveable, but good to know I am not the only one!

Sushi

 

[lobba123]

did any of you read the articles about the use of simavastatin or statins in general for all viral infections, CFS too, and tried simvastatin?both XMRV and hbv relay on cholesterol for replication/infectivity/viral assembly

if so what 's your experience with sim?

a study from UK researchers just found that lowering cholesterol has an impact on viral antigens production and that the body produces interferon which cuts cholesterol production when immune system works properly