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

[lobba123]

hiv, hbv,hcv and many other chronic infections checked are chronic because of this.macrophages and dentritic cells are not activated locally in the site of infection on these chronic viruses and have low expression of trl7

imiquimod, a trl7 activator (agonist), is sold as topical, even generic, since the 90 for hpv infection and skin cancers, being an immune system activator is used off label for so many infections like herpes and many others
in the trial it was used orally to produce interferon and injected inside cancers it has een found to clear cancers too, the key is reach site of infection or cancer

the bad is poor absorption so used as deep suppository it can reach high blood levels while used as oral caps at least 50-300mg are needed to make intf.the producer of tenofovir has trials on a substance very similar to imiquimod with just a side chain difference probably to improve oral absorption, looking for trl7 agonists on google you should find all articles about this

warning: sides effect are very very heavy so this cannot be tried without a expert researcher supervision, only 25mg daily are tollerated with no side effect on hbv, cancer (cfs not known) so this cannot be tried on cfs

it d be interesting to know if trl 7 is not activated on cfs too, by the way vit d3 increase trl 7 activation

 

[Daffodil]

thanks lobba, very interesting.

i continue on my downturn with worsening fog and lower back pain. it is a sort of pain i have never had before...feel it in my pelvis a little too. it hurts to bend. very strange.

it will be a good month before i have all my test results....:-/ i think its been about 6 months now, since i started gcmaf, though i took small breaks.
xoxox

 

[lobba123]

baking soda making my urine ph 7 helped with lower back pain, it complitely resolved in few days but this may be different from person to person
back pain, brain fog are all signs of cytokines activity which is good if it works clearing pathogens in a short time while they are bad if the pathogen is not cleared, i guess one of the problems with cfs might be continuous cytokine activity without immune system clearing

 

[Ronan]

Hi daffodil. Could it be possible that you have Lyme? KDM says that when people with Lyme take GcMAF that they can feel worse in the beginning because Lyme exists in Cysts and once on GcMAF you immune system starts attacking the Cysts and releasing more of the Lyme bacteria into your system. It might explain the back pain because from what i have heard Lyme can cause back pain.

 

[Daffodil]

thanks Ronan. no lyme here, i have been tested several times. how are you doing on GcMAF?

with HIV, the CD4 count goes up in the beginning when the body is fighting the infection...but mine went down...so i am just reluctant to believe this is a die-off/detox type phase. also, it is lasting very long now.

i just cannot figure it out but it feels awful and its so hard to have any hope.
oxoxo

 

[Ronan]

Im doing fairly well on the GcMAF but still plenty of room for improvement. I just tested positive for Lyme this week so thats the next thing to start working on

 

[Daffodil]

well this is just bizarre. my lower back pain is INTENSE. i have never had this sort of pain before. what could be happening? no one here will know. i dont even know which doctor to see now.

 

[Sushi]

I just had a good session with a cranial osteopath for an SI joing that is out of place and was causing a lot of pain. So far so good. He moved it back into place just with cranial work.

Do you have a cranial osteo there?

Sushi

 

[Daffodil]

Hi Sushi. Thanks for letting me know. I will check but I feel far too sensitive to trust anyone to touch me right now.

I was laying in bed just now, and I could feel something going on in my spine - at the bottom of my brain and back of my neck, and lower too. and my lower back is worse, like my spine is totally inflamed!

as you know, my brain has been severely affected all through the CFS.

what on earth could be going on in there....it feels awful! i hope i can make it to niagara falls Quest Labs on monday for testing.
xoxoxo

 

[Daffodil]

discomfort/pain/inflammation getting worse here. can barely move back. unbelievable. if this isn't die-off, i am in major trouble.

i still took this week's GcMAF dose, since Dr. Enlander told me to continue

 

[Nielk]

Sorry Daffodil

 

[Daffodil]

thanks nielk!

 

[Overstressed]

Hi Daffodil,

I'm so sorry you're going through this! I know how that feels, and your Vit-D findings are the same with me. My experience is, at some point with Gc-Maf treatment the Vit-D goes back down, after increasing for a while. At that very moment, I thought it happened because I was supplementing Vit-D while on Gc-Maf. I don't know if that's the case with you ? I'm still convinced that you better don't supplement Vit-D when on Gc-Maf. On the other hand, as a pre-treatment BEFORE starting Gc-Maf, supplementing Vit-D might the better option.

Just before I went on holiday, my heel spur started to hurt again. Together with my eye-pain, this was one of my first symptoms I experienced. I suffered a lot with this back then, more than a year in fact, and after wearing special insoles, this cleared up at some point. Very disappointing experiencing this right before my yearly vacation. But, a few days after, I took my Gc-Maf the pain miraculously vanished. It didn't show-up again, which speaks for Gc-Maf.

Yet, I must say, when taking Gc-Maf on holiday, with much sun and hot temperatures, it has a much better effect on me, than when taking at home. On the other hand, I experience a bad period some time after my holidays. My autoimmune labs get worse some time after. So, I think it all has to do with Vit-D. I think that Dr. Trevor Marshall is right on his hypthesis on Vit-D in chronic diseases. On the longer term, it's not good for your chronic illness.

Oh, I forgot to mention that I suffered some kind of food poisoning during my holiday. It's strange I was the only one suffering from it. My wife ate the same food, but didn't suffer anything. Right after, I experienced a (high)fever. I recovered after getting antibiotics. I was a bit surprised I was able to get any fever at all. Since my ilness started, I never ran into a fever again. Before my illness, I was always making a high fever, when I got ill.

Best wishes,
OS.

 

[Daffodil]

Thanks, Os, you always give me new insight. I agree about the vitamin D and i do not supplement.

anyway, my Nagalase test result came in. It is 2.40. I never had it tested before.

i am so sick it is insane! my whole spine is swollen to the hilt!

xoxoxox

 

[sprankel]

Did dr Enlander explain to you why you should continue GcMAF?
KDM told me to take a 2 month break, because I wasn't feeling too well.
He said that at some point the GcMaf can become too much.


I hope you will feel better soon!

 

[Daffodil]

thanks sprankel. i cannot tell you where i heard that about peterson but in general he is not in favor of GcMAF.

i dont know why dr. enlander wants me to continue. he mentioned that some people feel very bad for a while and then improve greatly...maybe he thinks this could be a die-off-like situation? he wanted some testing done and it will be a while before i have all the results.

i likely will not take the GcMAF this week....something extreme is clearly going on.

i was doing OK until about a month after i stopped Tenofovir - could be related

xoxoxo

 

[richvank]

Hi, all.

Here's a repost of comments I just posted to Patient Advocate's blog, in response to Prof. Ruggiero's video on MAF 314 and the comments made by two others about their response to GcMAF:

Hi, all.

Thanks for posting this, Chris, and thanks to those who responded.

I am very happy to read the two comments posted by the two "Anonymous" people that indicate that their NK cell function improved after GcMAF treatment. I'm happy for them, but also happy because I think it gives some insight into what's going on when ME/CFS is treated with GcMAF.

For background, as some of you may know, I am the proponent of the GD-MCB hypothesis for ME/CFS (Glutathione Depletion-Methylation Cycle Block). As part of this hypothesis, I suggested in 2007 that the low NK cell function in ME/CFS, associated with low perforin, is caused by glutathione depletion in the NK cells, and that it acts at the stage of protein synthesis. If this is true, one would expect to see elevated gene expression of the perforin gene, while the level of the perforin protein itself would be low. Recent work by the Bond University group in Australia has confirmed this.

So again, if this is true, and the GcMAF treatment raises the NK cell function, it must mean that this treatment has caused the glutathione level in these cells to rise.

How would that happen? I suggest that the GcMAF treatment, by activating the macrophages, has knocked down the populations of intracellular pathogens, including viruses, which are known to produce nagalase, which in turn has been found to decrease after GcMAF treatment. A decrease in pathogen population would be expected to lower the inflammatory response of the immune system against the pathogens. A major component of this inflammation is the production of reactive oxygen species by cells of the immune system, raising oxidative stress and placing a demand on glutathione as the basis of the antioxidant system. So a lowering of the inflammation should allow glutathione to rise, at least to some degree.

All of this seems consistent with what would be expected if the GD-MCB hypothesis is indeed valid. Hence, my happiness!

Best regards,

Rich

 

[natasa778]

well this is just bizarre. my lower back pain is INTENSE. i have never had this sort of pain before. what could be happening? no one here will know. i dont even know which doctor to see now.

Daffodil, I had the exact same symptom when taking acetyl-l-carnitine. The pain stopped as soon as I stopped taking it. I tried stopping and restarting several times, just to check, and the same thing happened EACH time. Similar back pain for me was caused by q10, but much less intense.

I searched and spent a long time afterwards trying to figure out WHY this happened but didn't get far. The biggest suspect theory was that carnitine was somehow triggering specific prostaglandins, which then triggered the pain (this made sense esp as the pain was somewhat similar, but stronger, to period back pain). I didn't save the articles that supported this theory though ...

 

[natasa778]

PS before I figured out that carnitine was the culprit, I had several sessions with cranial osteo, which didn't help the pain at all... I hope you get better Daffodil !!

 

[Daffodil]

thanks natasa. i should never have taken another dose of gcmaf last saturday. things are going from bad to worse. i feel it mostly in my head and spine. since the beginning of the CFS, my head and neck were the worse of all. the inflammation / infection seemed to somehow be centred there. something is happening in the very area where things were the worst. it is really horrendous living through this, i must say. if only this were die-off...