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

[Daffodil]

hi OS. i havent checked my iron much over the years, but has been low almost every time, unless i have been supplementing. "anemia of inflammation" i guess. i think it takes time for the iron stores to be depleted. once my ferriitin was at 4!

i have asked a few researchers now and they all say that gcmaf doesnt activate latent infections...so i dont now what happens.

i am so tired of guessing. ugh. i heard that relapse means co-infection. but i have spent too many thousands looking for co-infections that are never there.

xoxox

 

[Overstressed]

Hi Daff,

nobody knows exactly how Gc-Maf works, how can they be so sure that it doesn't activate latent viruses? Perhaps retroviruses wake-up from latency and start replicating from cell to cell? Perhaps,. this way herpes viruses don't get activated? Perhaps this virus causes immune suppression in the acute phase, where it is found in the bloodstream and viral RNA interferes perhaps with herpes-antibodies? Or (retro)viral proteïns interfere with herpes-antibodies?

Personally, I think that Gc-Maf(in low doses) together with LDN and with an anti-viral would be a good option.

Best wishes,
OS.

 

[Daffodil]

update: iron supplement + tenofovir + GcMAF = starting to slowly recover again

 

[Daffodil]

had surges of energy the past 2 weeks.. brain had a little improvement. not having had use of my brain in decades, i suddenly started thinking of ways to make money. started doing very light math calculations. convinced my mom to flip a house. strange things happening in brain. went with agent to look at houses, arranged for contractor to do reno, and made a bid (lost out). periods of hypomania. resulting stress causing mild chest pain and possible regression in health. hard to stop myself ..strong urge to make up for lost time...surges of anger too. taking benzos.

someting strangely traumatic about brain opening...crying spells too. similar to the movie "limitless" when he takes the pill and all the numbers and things start flooding into his brain LOL...but not as dramatic.

 

[Forebearance]

Wow, Daff! That is great... I think.

 

[Daffodil]

thanks fore. today i had a very very scary rage episode. i dont understand why this always happens when i start to feel better in my head (which is rare). so much anger boils up and explodes. today was so bad....worse than ever before. i destroyed $400 worth of things. i almost went to psych ward. how am i supposed to handle this? i wont be able to find anyone familiar with the "opening" of a brain after 20 yrs of fog....who can help me?

anyway, all the crying really did a number on the CFS and now i am all fogged up again.

i dont know why more people on this board do not experience extreme mood swings. maybe i am really bipolar and need treatment. but how do i know how psych meds will react with the GcMAF??

oh you people reading this must think i am a freak LOL

 

[Sushi]

thanks fore. today i had a very very scary rage episode. i dont understand why this always happens when i start to feel better in my head (which is rare). so much anger boils up and explodes. today was so bad....worse than ever before. i destroyed $400 worth of things. i almost went to psych ward. how am i supposed to handle this? i wont be able to find anyone familiar with the "opening" of a brain after 20 yrs of fog....who can help me?

anyway, all the crying really did a number on the CFS and now i am all fogged up again.

i dont know why more people on this board do not experience extreme mood swings. maybe i am really bipolar and need treatment. but how do i know how psych meds will react with the GcMAF??
...

Hey Daff,

Have you ever checked out the mood swings? Who knows the source, but it might be good to investigate it more.

Sushi

 

[Daffodil]

hi sushi. well 2 doctors told me i was bipolar but it was years after the CFS so i thought the dx was iffy, considering my brain was affected by the CFS. but it is certainly a possibility. i did try hard to find a local psychiatrist, with no luck....but i could try harder. i didnt want to start experimenting with a bunch of antidepressants/stabilizers right now..it would make things so complicated....but perhaps i need to try it anyway.
thanks
xoxoxoxo

 

[Overstressed]

hi sushi. well 2 doctors told me i was bipolar but it was years after the CFS so i thought the dx was iffy, considering my brain was affected by the CFS. but it is certainly a possibility. i did try hard to find a local psychiatrist, with no luck....but i could try harder. i didnt want to start experimenting with a bunch of antidepressants/stabilizers right now..it would make things so complicated....but perhaps i need to try it anyway.
thanks
xoxoxoxo

Hi Daff,

I have this too, rage episodes. I think it is related to Gc-Maf, but you can't be sure. Some time ago, Lobba made the link with interferon, meaning, when there's too much interferon, it makes a person agressive. I really don't know, but I understand your pain. In my particular case, you hurt the people you most love and care about. Especially when this behaviour is not part of your personality.

Perhaps some advice against AD: Christine Van Broeckhoven(Belgian scientist), an icon globally on Alzheimer research said recently in a newspaper that she advices people to be very cautious what they sent to the brain. She didn't literally said that all these cause all kinds of neurological diseases, but scientists simply don't know. But when they say such thing, you can be sure they have some little evidence that sending chemicals to the brain is simply not good.

Best wishes,
OS.

 

[Daffodil]

thanks, OS.

as you may recall, after a complete relapse on GcMAF (after having stopped tenofovir), dr. enlander asked me to stop GcMAF for a month and go back on just Tenofovir..then take the NK cell function test to see if the Tenofovir was indeed helping.

so i went back on Tenofovir and eventually did start to feel better in about a month, but to complicate matters, i also started iron supplementation because of very low ferritin levels. so i cannot be comepletely sure why i felt better at that time.

in any case, i expected the NK cell function results at the time to be somewhat good. however, the results came back today and they were "1". i have never had a measurement of 1 before. when i first took GcMAF for 3 months and felt better, the NK cell function jumped to 65. when i relapsed, they dropped to 6 (i think).

in the past, on tenofovir alone, it was 13.

so what does this NK cell function even mean? i thought it was the best biomarker for this disease....and i always felt that it correlated with clinical improvements...but now i am not sure. this is very confusing.

i think demeirleir checks NK cell function seldomly, maybe every year(?). if this is the case, maybe that is a better way to go about this.

by the way. dr. jeckoff jones also says that stopping tenofovir makes her deteriorate.

 

[Overstressed]

thanks, OS.

as you may recall, after a complete relapse on GcMAF (after having stopped tenofovir), dr. enlander asked me to stop GcMAF for a month and go back on just Tenofovir..then take the NK cell function test to see if the Tenofovir was indeed helping.

so i went back on Tenofovir and eventually did start to feel better in about a month, but to complicate matters, i also started iron supplementation because of very low ferritin levels. so i cannot be comepletely sure why i felt better at that time.

in any case, i expected the NK cell function results at the time to be somewhat good. however, the results came back today and they were "1". i have never had a measurement of 1 before. when i first took GcMAF for 3 months and felt better, the NK cell function jumped to 65. when i relapsed, they dropped to 6 (i think).

in the past, on tenofovir alone, it was 13.

so what does this NK cell function even mean? i thought it was the best biomarker for this disease....and i always felt that it correlated with clinical improvements...but now i am not sure. this is very confusing.

i think demeirleir checks NK cell function seldomly, maybe every year(?). if this is the case, maybe that is a better way to go about this.

by the way. dr. jeckoff jones also says that stopping tenofovir makes her deteriorate.

Hi Daff,

I think your NK-cell funtion will improve after a period of feeling better, perhaps. But, what about Gc-Maf? I'm sure I'm experiencing my illness from the beginning, though, not as severe as back then. I have the feeling that latently infected cells were activated. Last week my thyroid function was very bad, the worst actually. I felt so tired, my hair was falling out, and felt very dry, cold hands and feet... My family doc performed a bloodwork. At the end of the week I should have my results. I'm curious which test he ordered. He's not well informed about this illness, and which tests to order. And when I tell him, he gets irritated. :/

I think the take-home message is: Gc-Maf re-activates virus(es), causing a relapse. This relapse means a decrease of nk-cell funtion, and decrease of vit-d. This is no good news, if you ask me.

Best wishes,
OS.

 

[Sushi]

Hi Daff,

...I think the take-home message is: Gc-Maf re-activates virus(es), causing a relapse. This relapse means a decrease of nk-cell funtion, and decrease of vit-d. This is no good news, if you ask me.

Best wishes,
OS.

Hi OS,

Sorry that this has been the experience of some...but not for all of us. For me it has been just the opposite on all counts. I think all we can say is that it is a mixed experience, you need to be followed by a doctor experienced with GcMAF and monitor things closely with lab tests.

Some of us have had very significant improvement across the board. Perhaps the variation in response has to do with what our labs showed before starting GcMAF. For some, it does seem counter-indicated--hence the need for an experienced practitioner to oversee treatment and test well before starting this protocol.

Hope your recent tests will give clues as to how to get you better.

Best,
Sushi

 

[john66]

I experienced rage episodes with MAF, not like me at all. J

 

[Sushi]

I experienced rage episodes with MAF, not like me at all. J

Cytokine storms? Just a guess.

Sushi

 

[Daffodil]

OS.....i dont know..i have asked many researchers "in the know" and all of them have said it is very unlikely for gcmaf to reactivate anything. i cannot explain the relapses.

xoxoxox

 

[Overstressed]

Hi OS,

Sorry that this has been the experience of some...but not for all of us. For me it has been just the opposite on all counts. I think all we can say is that it is a mixed experience, you need to be followed by a doctor experienced with GcMAF and monitor things closely with lab tests.

Some of us have had very significant improvement across the board. Perhaps the variation in response has to do with what our labs showed before starting GcMAF. For some, it does seem counter-indicated--hence the need for an experienced practitioner to oversee treatment and test well before starting this protocol.

Hope your recent tests will give clues as to how to get you better.

Best,
Sushi

Hi Sushi,

perhaps I just had too much of it. I remember after 28 weeks, my Nagalase was 0.7, and I was feeling pretty good. I don't know what my Nagalase baseline was, however. But I continued, because I had the feeling there was also room for improvement, and as long as my tinnitus returns... So, mean time I have received more than 70 injections, most of them full dose. Perhaps this was the biggest mistake. Lately I switched over to half-dose. But, I think I will quit for a time.

Perhaps we have a different disease, who knows...

Best wishes,
OS.

 

[Daffodil]

OS.....is the 1/2 dose helping? why do you want to stop for a time?

i have had an interesting week, my energy is up, defintely a change in me. more motivation to do things is there....but brain fog still present. fatigue is less, though still need a lot of sleep to recover from an outing. feel as if just on the threshold of a big positive change, but always worried about another relapse. wish this was a quicker process.

i am taking about 15 ng/week of GcMAF + Tenofovir + Hepapressin

 

[Tito]

I experienced rage episodes with MAF, not like me at all. J

Me too with GcMAF. And I recently had that with Fludrocortisone. I came to the conclusion that when my blood pressure goes up (ie. Reaching the normal range), I am super aggressive to the point it bothers me ... to be with me -lol-.

 

[Forebearance]

Wow, you guys, there is sure a lot to figure out.
OS, after I took GcMAF for six months and then stopped ((because I ran out) my thyroid function plummeted. My TSH was 13, which is the highest it's ever been. It happened really suddenly, and I am trying to figure out why.

Do activated macrophages use up thyroid hormone, or iodine?
Does an increase in Vitamin D or an activation of the immune system demand more of the thyroid?

Fore

 

[Daffodil]

i took my last dose on tuesday. after a pretty good week, i am starting the lower back pain again - sign of big time inflammation. wonder if i should lessen dose or even take it every other week..maybe every 3 rd week...?

really would like more brain improvement. again considering stool test lol