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

[Sushi]

Your supposed to take vitamin D and try and do a bit of exercise while taking the GcMAF (also from the company).

You should look into low dose naltrexone also. Its very cheap at compounding pharmacies if you can get it prescribed to you. I think Kdm encourages ppl to try the combo together.

Hi Charles,

I am one of the KDM patients who is taking GcMAF and LDN. I had been taking it for a year and a half before my first appt. with KDM. He told me to keep taking it if I felt it was helping me, but I have never heard of him suggesting that a patient (who was not already taking LDN) begin taking it while on GcMAF.

He also does not want to us supplement with Vit D while on GcMAF. I realize that different doctors have different protocols, but he seems to find that Vit levels normalize on GcMAF. Mine did.

Sushi

 

[Gazelle]

LDN & GcMAF

I take LDN for sleep, along with some other meds. Does anyone on here doing the combo (or their doctors) feel like LDN inhibits GcMAF? I know narcotics and antivirals might, but LDN is not really either one of those.

 

[Rrrr]

i was told by a gcmaf specialist (not by KDM) to stay off all meds for 3 half lives (of the med) before my gcmaf dose. and then also for 6 more hours after the gcmaf dose, too.

and regarding supplements, i was told to stay off them the day of the gcmaf dose. so not to take them in the morning. and then wait til 6 hrs after the gcmaf dose to take any supplements.

this was all in the assumption that i was doing gcmaf via an IV push/shot. so if we do it subcutaneous, it could be that we need to stay off them longer.

 

[froufox]

From Joey on the anti-retroviral thread: I just heard from a KDM patient who experienced signifcantly elevated c4a on gcmaf. KDM is now telling her that gcmaf actually reactivated hhv-6 and is that she should go on valcyte. Dr cheney has voiced similar concerns about gcmaf reactivating herpes viruses and has advised some patients to take famvir with gcmaf.

It sure doesnt sound like gcmaf is a one-stop-shop for cfs patients. Is it possible that the chronic inflammation is deterring the gcmaf from working? I'm starting to agree with general tone in this thread that boosting the immune system so it could get rid of viruses on its own simply doesnt work for cfs unless you take another drug which specifically calms down the overactive immunity.

Thanks for posting the info about the other KDM patient Joey, its very interesting. I had pretty high C4A prior to starting GcMAF and have had *terrible* side effects from GcMAF (eg more brain inflammation/swelling, suicidal depression) at least when i was on the higher dose, but also subsequently when I specifically added in B12 drops, which might have increased methylation. It felt like a huge increase in inflammation, which may also be related to reactivated viruses in my case too, whether it is a cause or effect who knows. I dont know if i have HHV-6 , I tested -ve to it in the past, but i did have v high titres to CMV and EB.

Due to my concerns, and funnily enough before I read your post, I did actually start taking Famvir again yesterday, as that has helped me before. I agree with u about immunomodulation. I also restarted Immunovir again recently.

I also think thats a really important point about inflammation... i was wondering that since GcMAF boosts TNF@ which in turn is involved in a pathway that switches on NFkB, which can be very pro-inflammatory & can prevent apoptosis, i wonder if that is one way in which GcMAF can lead to viral re-activation/replication? I agree with Sergio about the auto-intoxication too....it certainly feels like that, and auto-intoxication leads to inflammation.

 

[Rrrr]

joey also wrote this on another thread: "I suspect patients with dreaded haplotypes would definitely not do well on something like GcMaf (which Peterson has described as causing autoimmunity) unless they were able to significantly decrease inflammation first and during."

does joey or anyone want to elaborate on what peterson is saying about gcmaf causing autoimmunity? i have not heard this or heard anything about re-activation of hhv-6. can someone tell us more about these things that cheney and peterson are saying?

i have recently gone downhill on gcmaf, after i increased my dose from 1/5th to 1/2 of a dose (from 0.20 ml to 0.50 ml). i only did this once, but since then i've been a mess. that was almost 2 wks ago.

 

[vli]

Frou, thank you so much for posting this. One question: what's the difference between valcyte and famvir? Why does KDM recommend one and Cheney the other?

I have a 5/7 phone consult with KDM but am going to try get valcyte ASAP.

 

[froufox]

Hi Rrrr

Sorry to hear you've gone downhill recently! As u know Ive also found GcMAF incredibly rough going at times and Im finding that i can only tolerate 1/5th of a dose, about fortnightly, no more regularly than that.

About the auto-immunity, TNF@ has been linked to auto-immune conditions and since that is boosted by macrophages, perhaps that is the link?

http://en.wikipedia.org/wiki/Tumor_necrosis_factor-alpha

 

[froufox]

Hi vli, I dont know but personally overall I have read more positive reports from people using famvir compared to valcyte, with ppl experiencing less side effects but thats just what ive read. I do know that Dr Dantini prefers famvir (or valtrex) over valcyte for the same reason, as he found that ppl experienced less sides from famvir, but I guess as with everything else, others might find valcyte a more suitable drug. Ive not tried valcyte myself but i have tried famvir in the past and had no side effects whatsoever, and also more or less immediate improvements (cognitive), but thats just my experience. The benefits soon wore off unfortunately.

 

[vli]

The benefits soon wore off unfortunately.

Thanks froufox, I was going to google famvir when you tell me that it's valtrex--well I've taken valtrex (only 1 bout since starting gcmaf in January however) and have the same experience as you, i.e. benefits plateau. More accurately, I never experienced a significant improvement on valtrex like some people, but I felt nothing negative either. Since you also find benefits wear off, what may I ask is the point of going on it (not trying to be facetious)? Just to ease things while going through a bump? I'm going through a bump as well symptom-wise (VERY tired, migraines).

 

[lobba123]

the fact that viruses restart replication cannot be considered a bad thing for sure.

in yamamoto studies of gcmaf in hiv patients he said that activation of immune system made the virus hidden inside cells (which cannot be detected by immune system) replicate again, this way infected cells could be found by immune system and killed and also virus reservoirs.........i dont know if and how this correlates with CFS patients but it is not so easy to say if this is good or bad in terms of clearing these latent viruses

From Joey on the anti-retroviral thread: I just heard from a KDM patient who experienced signifcantly elevated c4a on gcmaf. KDM is now telling her that gcmaf actually reactivated hhv-6 and is that she should go on valcyte. Dr cheney has voiced similar concerns about gcmaf reactivating herpes viruses and has advised some patients to take famvir with gcmaf.

It sure doesnt sound like gcmaf is a one-stop-shop for cfs patients. Is it possible that the chronic inflammation is deterring the gcmaf from working? I'm starting to agree with general tone in this thread that boosting the immune system so it could get rid of viruses on its own simply doesnt work for cfs unless you take another drug which specifically calms down the overactive immunity.

Thanks for posting the info about the other KDM patient Joey, its very interesting. I had pretty high C4A prior to starting GcMAF and have had *terrible* side effects from GcMAF (eg more brain inflammation/swelling, suicidal depression) at least when i was on the higher dose, but also subsequently when I specifically added in B12 drops, which might have increased methylation. It felt like a huge increase in inflammation, which may also be related to reactivated viruses in my case too, whether it is a cause or effect who knows. I dont know if i have HHV-6 , I tested -ve to it in the past, but i did have v high titres to CMV and EB.

Due to my concerns, and funnily enough before I read your post, I did actually start taking Famvir again yesterday, as that has helped me before. I agree with u about immunomodulation. I also restarted Immunovir again recently.

I also think thats a really important point about inflammation... i was wondering that since GcMAF boosts TNF@ which in turn is involved in a pathway that switches on NFkB, which can be very pro-inflammatory & can prevent apoptosis, i wonder if that is one way in which GcMAF can lead to viral re-activation/replication? I agree with Sergio about the auto-intoxication too....it certainly feels like that, and auto-intoxication leads to inflammation.

 

[froufox]

Hi vli, it was really just a spur of the moment decision yesterday when i just felt like the viruses in my brain were active, and it was literally doing my head in so it was just to get some relief! I cant tell if its helping or not, i think it might be slightly, but it could be due to other stuff. I wonder if since I'm on Nexavir and GcMAF now, the synergistic effect of everything will work better than when i took the famvir last time, as i was only on immunovir at that time. Who knows! I have a few things going on at the moment...my gut is messed up after stopping probiotic support, and im hoping to restart kefir this week too...that definitely helped me a few weeks ago. Plus easing back off GcMAF too as i took that 2 weeks in a row again, which set me back.

Sorry you're going thru a bump too, i hope u find something that helps u thru this.

 

[vli]

the fact that viruses restart replication cannot be considered a bad thing for sure.

in yamamoto studies of gcmaf in hiv patients he said that activation of immune system made the virus hidden inside cells (which cannot be detected by immune system) replicate again, this way infected cells could be found by immune system and killed and also virus reservoirs.........i dont know if and how this correlates with CFS patients but it is not so easy to say if this is good or bad in terms of clearing these latent viruses

Lobba can you possibly explain this in clearer terms (or anyone)), if you "have the energy"? how exactly is the system now able to spot infected cells whereas previously it could not? thanks

 

[richvank]

Lobba can you possibly explain this in clearer terms (or anyone)), if you "have the energy"? how exactly is the system now able to spot infected cells whereas previously it could not? thanks

Hi, vli.

I don't understand yet how GcMAF causes the viruses to reactivate, but assuming that it does, then I think the reason the immune system is able to spot the infected cells is likely due to the usual mechanism, i.e. the HLA (human leukocyte antigen) system. The idea here is that some of the proteins are constantly being chopped up and recycled in cells by putting them through the proteosomes, which unlink the amino acids so that they can be used over. During this process, short sections of the proteins are carried to the outer surface of the cell membrane and displayed sort of like flags. When T cells find "flags" that correspond to the individual foreign antigens that they are programmed to recognize, they sound the alarm by putting out cytokines, and the immune system mobilizes to attack the enemy.

Rich

 

[undcvr]

Vli Famvir is NOT Valtrex, they are 2 separate AVs.

The equivalence btw the 2 is usually half the amount of Famir for every gram of Valtrex.

That means that if your doctor has been putting you on 4gm on Valtrex daily, when he switches to Famvir, the equivalent dose would be 2gm

 

[Rrrr]

jeeeeesh!

why would we need an additional anti-viral on top of nexavir? i thought nexavir was an anti-viral and that using nexavir in combination with gcmaf was the ticket (the thing to do). and artesunate, too. i'm on that combo, that kdm approved: gcmaf + nexavir + artesunate.

can someone please confirm joey's statement that KDM is now having patients take an additional antiviral?

 

[froufox]

Thanx undcvr, i had missed that in vli's post, doh! Sorry if it sounded like i was saying that they were the same drug.

 

[vli]

Vli Famvir is NOT Valtrex, they are 2 separate AVs.

Right, sorry bout that, have emailed my doctor and will probably be on it this time next week, thanks

 

[lobba123]

it is difficult to judge if the type of avs that stop dna/rna inside cells and then block replication might help because this process can also weaken immune response because they make infected cells less visible to immune system.they also make less virus antigens present around so immune system makes less antibodies.so the immune system thinks there is less virus and downregulates itself while this is not true because the cells are infected.
this comes from HIV and HBV antivirals that acts on dna or rna part of the virus, the failure of these antivirals to clear infection is thought to be due to this way of downregulating immune system leaving the cells infected

while i think gcmaf, nexavir and artesunate work in a different way without messing with rna/dna but acting on other part of the virus or host

richvank explained what i meant perfectly, anyway it was not meant for CFS so it is better not to consider it

 

[vli]

Hi, vli.

I don't understand yet how GcMAF causes the viruses to reactivate, but assuming that it does, then I think the reason the immune system is able to spot the infected cells is likely due to the usual mechanism, i.e. the HLA (human leukocyte antigen) system. The idea here is that some of the proteins are constantly being chopped up and recycled in cells by putting them through the proteosomes, which unlink the amino acids so that they can be used over. During this process, short sections of the proteins are carried to the outer surface of the cell membrane and displayed sort of like flags. When T cells find "flags" that correspond to the individual foreign antigens that they are programmed to recognize, they sound the alarm by putting out cytokines, and the immune system mobilizes to attack the enemy.

Rich

Thank you Rich so much for this. So how did the virus "hide" in the cells before, what Lobba described? (Sorry I'm quite dense)

 

[richvank]

Thank you Rich so much for this. So how did the virus "hide" in the cells before, what Lobba described? (Sorry I'm quite dense)

Hi, vli.

Certain viruses, including those in the herpes family and some others, have the ability to go into a "latent" state. In this state, they hang out inside certain types of human cells, but don't actively use the cell's machinery to make their own proteins and thus reproduce and spread to other cells. In other words, they "lay low." If they aren't making proteins, they aren't detectable by the HLA mechanism. Another thing they do is hide inside cells that have long lifetimes and don't have a very active HLA system. Neurons are an example, and some of the herpes family viruses (such as the one that produces cold sores and the one that produces chicken pox/shingles) reside in them. Neurons have to have long lifetimes so as not to break up the neural networks in our brains that constitute memory. Another example is the Epstein-Barr viruses hang out in memory B lymphocytes. These viruses are clever little guys!

Rich