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

[lobba123]

vitd25oh has no toxicity just calcium increase that you can monitor by serum calcium, 200-400ng/ml are necessary to increase calcium out of range
vit 1.25oh is believed to be toxic but if 25oh is high 1,25oh lowers, a good way to decrease 1,25oh when too high is tanbeds 3-4times a week which increases 25oh and decrease 1,25oh and of course no tox from light.1hr tanbed should make about 20000iu d3

Thanks Lobba. Wow I can't believe your D dropped that much while supplementing. Mine dropped a couple of points when I dropped down to 5,000 IU so I had increased back to 10,000. But now I'm just stopping D until I get tested. Feeling toxic and due for my 5th inj tom.

 

[sphynx on roundabouts]

Thanks for info

Thanks so much to all on page 189 for taking the time to share your information, experiences and offer support - all very much appreciated.

Hope you are all holding your own this week.

 

[healthconcern]

I Wish to get vitamin d3 supplement. Where can you get those high dose of at least 4000iu online that ships to Asia country? I can't find these in my local pharmacy

 

[lobba123]

i was using puritans pills but my last test was severely deficent at 26ng/ml so i retested and cahnged brand.solgar has 5000iu vit d3 8us online shops9, also bio-tech has vit d3 pills at 5000iu and at 50000iu 8i ve found it in an holland online shop), the problem is not where to buy but if customs in your country accept all vitamins

 

[lobba123]

update vitamin d 25oh was wrong, i made the test in the best lab in town (double cost) but vit d25oh was 68ng/ml as expected by taking 10000iu d3 daily.the other lab reported 26ng/ml (damn bastards, i heard from the doctor they report wrong results all the time)

so puritans pills are perfect and cheap

i was using puritans pills but my last test was severely deficent at 26ng/ml so i retested and cahnged brand.solgar has 5000iu vit d3 8us online shops9, also bio-tech has vit d3 pills at 5000iu and at 50000iu 8i ve found it in an holland online shop), the problem is not where to buy but if customs in your country accept all vitamins

 

[Dufresne]

vitd25oh has no toxicity just calcium increase that you can monitor by serum calcium, 200-400ng/ml are necessary to increase calcium out of range
vit 1.25oh is believed to be toxic but if 25oh is high 1,25oh lowers, a good way to decrease 1,25oh when too high is tanbeds 3-4times a week which increases 25oh and decrease 1,25oh and of course no tox from light.1hr tanbed should make about 20000iu d3

I'm a bit confused by all this vitamin D stuff and I appreciate any clarifications. It's my understanding Vitamin D 1,25 is the biologically active form of the hormone, and Vitamin D 25 is the prohormone. I've read high D 1,25 can be pro-inflammatory, but I wouldn't think of it as toxic. And isn't GcMAF using exactly this form of vitamin D? I wonder if D 1,25 isn't elevated because of the nagalse problem and shortage of viable VDR.

 

[lobba123]

on cronic infections, cancer and obesity:
vit d25oh is low, and this is the one tht can reflect deficency.no toxicity just calcium increase when >150ng/ml, calciumincrease for long time can damage kidneys irreversibly

vit 1.25oh is often found high or elevated when d25oh low, this is thought to be toxic when elevated.increasing vit d 25oh lowers 1.25oh
1.25oh cannot be used to determine deficency because the body tries to balance this with stored vit d25oh,

i guess our body senses macrophages are not being activated or cronic infection not resolved and increase 1,25oh to activate them and in this case lowers d25oh

I'm a bit confused by all this vitamin D stuff and I appreciate any clarifications. It's my understanding Vitamin D 1,25 is the biologically active form of the hormone, and Vitamin D 25 is the prohormone. I've read high D 1,25 can be pro-inflammatory, but I wouldn't think of it as toxic. And isn't GcMAF using exactly this form of vitamin D? I wonder if D 1,25 isn't elevated because of the nagalse problem and shortage of viable VDR.

 

[Leonora]

I asked Prof De Meirleir about this. He said that when you have an inflammatory state with high D 1,25DI-OH you increase it even more by increasing Vit D 25OH, you don't lower it.

 

[Dufresne]

I asked Prof De Meirleir about this. He said that when you have an inflammatory state with high D 1,25DI-OH you increase it even more by increasing Vit D 25OH, you don't lower it.

That's what I would have thought. As I recall, Trevor Marshall claims vitamin D supplementation is only going to continue to raise levels of D 1,25, exacerbating inflammation. Maybe the test to run before considering supplementation is D 1,25.

 

[lobba123]

you have probably a different balance in your disease, in all other cronic infections like hbv, hcv, cancer, autism vitamin supplementation is a must and of course no sides from it at all

That's what I would have thought. As I recall, Trevor Marshall claims vitamin D supplementation is only going to continue to raise levels of D 1,25, exacerbating inflammation. Maybe the test to run before considering supplementation is D 1,25.

 

[Leonora]

Well, many of Meirleirs patients have exactly this problem with too much Vit D 1,25DI-OH....and they are mostly ME/CFS patients, so I don't think it's only me or Dufresne for that matter, that have "a different balance".

you have probably a different balance in your disease, in all other cronic infections like hbv, hcv, cancer, autism vitamin supplementation is a must and of course no sides from it at all

 

[Sushi]

Well, many of Meirleirs patients have exactly this problem with too much Vit D 1,25DI-OH....and they are mostly ME/CFS patients, so I don't think it's only me or Dufresne for that matter, that have "a different balance".

I had too high vit D 1.25 before starting GcMAF. It became normal on GcMAF and Vit D 25 also came up to normal values.

Best wishes,
Sushi

 

[Rrrr]

my very low d levels did not change even after 25 shots of gcmaf (from de meirleir). i think i'm going to start to supplement with vit d.

 

[maryb]

My levels were
Vit D3 (25OH) -19.6 range 20 - 43
Vit D 1.25 Di-OH 35.3 range 25.1 - 66.1

What I don't understand is why I feel so much better better after being in the sun for a few months even just an hour a day. This test was done at the end of the summer when my vit D3 levels should have been up if I understand it correctly??? Prof Merleir has prescribed GcMAF but I've been unable to get to Belgium again having been so ill. I was toying with the idea of supplementing Vit D but I really don't know now.

 

[lobba123]

the wellbeing in the sun is due to vitamin d3 production, 1hr makes 20000iu or more in summer

i ve been using tan bed too, it can rise vit d too, the good from gettng vit d from sun is that your body regulates that so no unbalance possible, healthy people working in the sun has vitd25oh>50ng/ml and body starts storing vit d only when higher than 50ng/ml

but CFS is very different, vit d has antinflammatory properties, autoimmunity balance, immune suppressing and immune boosting properties...it probably all depends on immuen staus and pathogens the way it acts

My levels were
Vit D3 (25OH) -19.6 range 20 - 43
Vit D 1.25 Di-OH 35.3 range 25.1 - 66.1

What I don't understand is why I feel so much better better after being in the sun for a few months even just an hour a day. This test was done at the end of the summer when my vit D3 levels should have been up if I understand it correctly??? Prof Merleir has prescribed GcMAF but I've been unable to get to Belgium again having been so ill. I was toying with the idea of supplementing Vit D but I really don't know now.

 

[maryb]

Yes I agree with that the body is much cleverer than we think and I'm sure supplementation is not the best way, I have considered sun beds but the risks that go with them put me off, need to do something though - what??
my level was still only (minus) -19.6 at the end of a good summer so god know what it is now .

 

[lobba123]

here is a website with all he studies on vit d and all answers, low vitamin d is an higher risk of melanoma than sunbeds there is a study on melanoma and low vit d too

http://www.vitamindwiki.com/tiki-index.php

Yes I agree with that the body is much cleverer than we think and I'm sure supplementation is not the best way, I have considered sun beds but the risks that go with them put me off, need to do something though - what??
my level was still only (minus) -19.6 at the end of a good summer so god know what it is now .

 

[globalpilot]

Any more improvements

Hi,
Is the 1/10th of a cc also 1/10th of a normal dose ? ie. 10ml ? Have you experienced any more improvements ? Taking the dose you are taking would sure bring the cost down to a reasonable amount.

GlobalPilot

note: i have 3 friends on gcamf.eu's product. two have experienced very bad side effects (or whatever you want to call it) on tiny doses. i'm not saying gcmaf.eu has a bad product. what i'm saying is, please, people with ME/CFS, please be careful about doing too much for your weak system/body. what i'm saying is, whatever gcmaf you take (from whatever source), start very "low and slow" and only do a tiny amount. gcmaf seems to kick our butts for some reason. we are not HIV+, we are not cancer. we are our own strange illness, and for some reason gcmaf can really impact may of us -- no matter the brand or source of the gcmaf. so start low and go slow.

for the record, i'm on my 23rd dose of gcmaf, and most have been a tiny tiny amount (1/10th of a cc done weekly or twice weekly). and i'm now walking again -- going on regular almost daily walks -- for the first time in 3 years. great!! so obviously i'm doing better than i have in while, while on gcmaf + nexavir + artesunate + b12 shots. i recommend it. but if you try it, just go very very slowly. (i had a 6 week hellish period on this protocol and had to take a break: 2 breaks of 3 wks each. when i went back on the gcmaf, i have only been doing tiny tiny doses, and that seems to work for me.

 

[citybug]

How many people here are still in bad relapses from IRIS after doing gcmaf?

 

[Sushi]

How many people here are still in bad relapses from IRIS after doing gcmaf?

This is going to be a hard question to get an answer to, but....I am in touch with about 25 others who are taking GcMAF and most, not all, experience some level of IRIS but it almost always disappears after taking a break from GcMAF or lowering the dose.

Often there are inflammatory symptoms if you are taking a higher dose than you can handle. This happened to me after 27 doses, I took a break and the symptoms went away quite quickly. This seems to be what usually happens, though some have had a harder time.

After taking a break, most are told by their doctors to restart GcMAF at a lower dose.

And Global Pilot, different labs make different concentrations of GcMAF so 1/10 of a cc or ml from one source may have fewer nannograms than from another source. The dose that was tested for HIV and Cancer was 100 nannograms, usually in 1ml of fluid.

ME/CFS patients often find that they need to take a lower dose for longer.

Hope this helps,
Sushi