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

[lobba123]

i am not an expert on this subject but there are many viruses and bacteria that can escape immune system this way remining latent inside cells and waiting for immune system to weaken and attack again

this one is not about viruses:
i saw a study on bacteria recently that found sugars to awake the latent bacteria and make even antibiotics resistant to them active again and more potent......so they are now adding sugar to antibiotics

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

 

[mojoey]

Hi Rrrr,

Everything I posted is everything I know, including partially what is my speculation. It has been my speculation all along that because gcmaf is distinct from, say, ampligen in the sense that it is entirely proinflammatory, patients like myself that have extremely variable (easily skyrocketing c4a) would not do well with this medication nilly willy. Peterson may or may not be speaking to this same phenomenon. I suspect he is thinking about severe IRIS in the more conventional sense, and the fact that severe IRIS has been known to cause lupus. That is just an educated guess.

The fact that KDM has told a patient that gcmaf reactivated HHV-6, a gnarly virus that I can't imagine any cfs patient in their right mind would want to reactivate, and that Cheney has also emphasized famvir may be a good idea to prevent herpes reactivation may or may not be a separate topic. I like Rich's interpretation of viral reactivation as a HLA-reawakening. I guess that's the best case scenario right?

However, I still think that this drug doesn't work quite the same way it does in cfs patients as the other patients it's been studied on. Keep in mind that it has actually been used successfully to TREAT herpes reactivation (I'm not sure if this is published, but I talked a doctor who used it successfully for this purpose), and in our case it is CAUSING herpes reactivation. It has also been used to treat lyme successfully. Not only this, but I don't recall the HIV patients that did gcmaf ever having to take an additional antiviral. And the only thing I can think of that is fundamentally different in terms of our immune system from a classical infection is the chronic overreactive inflammation that is pre-existing and is univesally exacerbated by the gcmaf.

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.

 

[mojoey]

Hi Vli,

Cheney typically takes the less toxic route. He also seems to prescribe antivirals within the redox buffering paradigm, which means to him that antivirals are meant for keeping in terrain in check rather than to kill viruses. The fact that artesunate may directly inhibit viral replication is just a bonus to him. Same with antibiotics: the only one he readily prescribes is minocycline, because it has antiinflammatory properties.

Valcyte typically causes more side effects than famvir because it is a stronger drug. It is also the only drug clinically shown to inhibit HHV-6. Famvir may do it, but it's all anecdotal. People that have done both for an extended period of time will tell you valcyte is the stronger drug. It is also more toxic, and hence all the measures undcvr has mentioned (taking shark liver oil for the liver, taking high dose folate and b vits to maintain dna/rna synthesis) are essential.

Valtrex/acyclovir are the weakest for HHV-6, famvir is likely somewhere in the middle.

I'm beating a dead horse with this but I think the chronic inflammation must be addressed if you have the dreaded HLA, have excessive inflammation, and take valcyte. The die-off will be intense and will worsen inflammation, so dampening baseline inflammation is a must. Unlike a histamine reaction where you can take h1, h2 blockers or histame, there is no medication to artificially lower the complement markers. LDN might help with this but it's anecdotal so far. Lisa Petrison had a TERRIBLE reaction to famvir when she was living in a moldy house. After she did lowered her inflammation by moving out of the moldy house she tolerated famvir with no side effects, and then proceeded to tolerate valcyte with no effects. I think that says it all.

Her experience with antimicrobials in her moldy house is the exact mirror of my experiences in most of my homes. And keep in mind: what is "moldy" to a cfs patient that overreacts to every little thing is not the same as "moldy" in the conventional sense. That's why I put off all antimicrobial therapies for the time being. Once I move to the beach, I plan on starting famvir immediately. If that goes well, I plan on following up with valcyte.

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.

 

[Berthe]

Hi everyone,

Just wanted to give you an update about my Gc MAF experiences so far. I had to stop the treatment after 13 injections because of the severe side effects. DML told me to stop for ten weeks, but I'm not sure if I will continue the treatment. My last shot has been four weeks ago and the inflammation is still getting worse. The Gc MAF seemed to adjust my body temperature and the low grade fevers have diminished. More energy was distributed to my brain and therefor I felt more energetic. Meanwhile the pain in joints and muscles became worse and worse. I've tried several painkillers, but so far nothing brought relief. I'm in pain all day long.

To be bloody honest I'm very afraid that the Gc MAF did lure the virus out of the reservoirs, actived them and therefor increased the inflammation. I'm no physician and a complete nitwit when it comes to the immune-system. I've read in the last comments something about the reactivation of viruses and the use of antivirals. DML only prescribed me the MAF and nothing else, because the only virus visible in my bloodresults was the XMRV. I still hope the inflammation diminishes in the near future because I feel that this is holding me back.

I sincerely wished I could tell you all someting more positive, but I think we have to ben honest about the treatment-results. This way we can learn from each other.

Love,
Berthe

 

[Sushi]

Hi everyone,

...The Gc MAF seemed to adjust my body temperature and the low grade fevers have diminished. More energy was distributed to my brain and therefor I felt more energetic. Meanwhile the pain in joints and muscles became worse and worse. I've tried several painkillers, but so far nothing brought relief. I'm in pain all day long.

To be bloody honest I'm very afraid that the Gc MAF did lure the virus out of the reservoirs, actived them and therefor increased the inflammation. I'm no physician and a complete nitwit when it comes to the immune-system. I've read in the last comments something about the reactivation of viruses and the use of antivirals. DML only prescribed me the MAF and nothing else, because the only virus visible in my bloodresults was the XMRV. I still hope the inflammation diminishes in the near future because I feel that this is holding me back....

Love,
Berthe

Hi Berthe,

Sorry you have been struggling with inflammation so much. There is a lot that is not known about exactly how LDN works, but anecdotally, some of us who were taking it before GcMAF, haven't struggled with inflammation and our inflammatory cytokines were lower on testing.

I don't know if you would want to consider it (no one also knows for sure if it interferes with the efficacy of GcMAF) but a couple of doctors have prescribed LDN and GcMAF together and KDM doesn't seem adverse to myself and others continuing it.

Just a thought as you did find you were experiencing some benefits from GcMAF.

Best wishes,
Sushi

 

[undcvr]

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

I have a question, if a virus hides out in a cell with a long life span, say a neuron and we take drugs to reactivate the virus. Won't the immune system essentially attack and kill off the neuron. And if it doesn't do that, we will never successfully be able to rid ourselves of the virus ?!?!?

 

[heapsreal]

I have a question, if a virus hides out in a cell with a long life span, say a neuron and we take drugs to reactivate the virus. Won't the immune system essentially attack and kill off the neuron. And if it doesn't do that, we will never successfully be able to rid ourselves of the virus ?!?!?

Isnt this apart of the reason why auto-immune problems are common in cfs as the immune system tries to kill infections which are imbedded in our cells, therefore attacks itself ????

cheers!!!

 

[vli]

mojoey,

wanted to thank you for your reply, which's definitely convinced me not to take valcyte and to read up on famvir. I will ask KDM about this on the phone in 8 days.

 

[vli]

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

Can anyone explain this in greater detail? Or, can anyone point me somewhere (not gcmaf.eu) that actually says GcMAF needs x level of vitamin D to work?

 

[lobba123]

well this is easy and not correlated to gcmaf...normal vitamin d 25oh levels are needed for immune system to work.you can easily find the studies made in these last years that looked at lympho: they clearly saw in vivo (on humans) by electron micro that without vitamin d they could not activate despite the invading microrganisms

normal vit d 25oh levels are >40ng/ml (optimum 50-60ng/ml), at levels higher than 150-500ng/ml vitamin d may increase calcium which can be dangerous for kidneys.drinking a lot of water or ip6 supplements can deal with calcium excess

i am supplementing vit d 25oh but checking it every 4 weeks during gcmaf, now i am slowly decreasing it because reached 58ng/ml

Can anyone explain this in greater detail? Or, can anyone point me somewhere (not gcmaf.eu) that actually says GcMAF needs x level of vitamin D to work?

 

[Overstressed]

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.

Well, I must admit, my last labtests showed increased antibodies to CMV and EBV and also my anti-TPO(thyroid) went up from nowhere. Formerly, my anti-thyroglobuline was a bit too high. I didn't know how to interprete these results while on Gc-Maf for 9 months. I guess it might be right that viruses are reactivated. Also, after my labtests, I was concerned about my thyroid and went looking on the I'net for a possible explanation, and found this: HHV6. I guess this virus has been reactivated, causing my anti-TPO go up.

The longer it goes, the more questions Gc-Maf gives us. I'm wondering how reactivation of virus goes with 'feeling better' ? I certainly feel better before I started Gc-Maf...

OS.

 

[froufox]

Hi Berthe

Thanks for sharing your experience and I'm so sorry to hear that you've been suffering so badly with pain and inflammation from the GcMAF, but yes its very important that we share all the bad effects too. I dont get pain myself so I have no advice to offer you for that but I hope that you find something to give u some relief soon. If only we knew more about what was happening, whether it is to do with reactivated viruses or something else. Are u going to have some tests done to see what is happening?

I hope that the pain starts to ease a bit soon, take care.

Hi everyone,

Just wanted to give you an update about my Gc MAF experiences so far. I had to stop the treatment after 13 injections because of the severe side effects. DML told me to stop for ten weeks, but I'm not sure if I will continue the treatment. My last shot has been four weeks ago and the inflammation is still getting worse. The Gc MAF seemed to adjust my body temperature and the low grade fevers have diminished. More energy was distributed to my brain and therefor I felt more energetic. Meanwhile the pain in joints and muscles became worse and worse. I've tried several painkillers, but so far nothing brought relief. I'm in pain all day long.

To be bloody honest I'm very afraid that the Gc MAF did lure the virus out of the reservoirs, actived them and therefor increased the inflammation. I'm no physician and a complete nitwit when it comes to the immune-system. I've read in the last comments something about the reactivation of viruses and the use of antivirals. DML only prescribed me the MAF and nothing else, because the only virus visible in my bloodresults was the XMRV. I still hope the inflammation diminishes in the near future because I feel that this is holding me back.

I sincerely wished I could tell you all someting more positive, but I think we have to ben honest about the treatment-results. This way we can learn from each other.

Love,
Berthe

 

[froufox]

Hi Overstressed,

Thanks for sharing your experience too. It is worrying that you also have reactivated viruses and an increase in thyroid antibodies aswell. I hope that you, and all of us get some answers soon.

"I'm wondering how reactivation of virus goes with 'feeling better'?" Great question, I totally agree!

Well, I must admit, my last labtests showed increased antibodies to CMV and EBV and also my anti-TPO(thyroid) went up from nowhere. Formerly, my anti-thyroglobuline was a bit too high. I didn't know how to interprete these results while on Gc-Maf for 9 months. I guess it might be right that viruses are reactivated. Also, after my labtests, I was concerned about my thyroid and went looking on the I'net as a possible explanation, and found this: HHV6. I guess this virus has been reactivated, causing my anti-TPO go up.

The longer it goes, the more questions Gc-Maf gives us. I'm wondering how reactivation of virus goes with 'feeling better' ? I certainly feel better before I started Gc-Maf...

OS.

 

[undcvr]

mojoey,

wanted to thank you for your reply, which's definitely convinced me not to take valcyte and to read up on famvir. I will ask KDM about this on the phone in 8 days.

Hey i knw this is kind of off topic but for all the bad rap that Valcyte gets I have been taking it for almost 7 months now at the high dose and it has practically eradicated my CFS. I work part time now and every once in a while do 1 or 2 15hr days in a week. I excercise moderately and sleep well. That is why when anybody asks, I always say Valcyte: yes ! and try and take stuff to mitigate its side effects. Not once did any of my lab tests results come back looking like I had to be concerned and at the beginning we tested once every 2 weeks.

One week into Valcyte and I could already feel stronger.

It all depends on what combination and how strong your CFS viruses are. But if you take something that only partially helps, remember that you are only giving the virus a chance to gain resistance to it and in the long run, you have one less drug to turn to if things get worse. We already have so few to choose from and even less drugs that doctors are willing to prescribe.

That was what made me decide on a cocktail of drugs as well as going for the dose which would stop replication.

 

[undcvr]

Hi Overstressed,

It is worrying that you also have reactivated viruses and an increase in thyroid antibodies aswell.

"I'm wondering how reactivation of virus goes with 'feeling better'?" Well, I must admit, my last labtests showed increased antibodies to CMV and EBV and also my anti-TPO(thyroid) went up from nowhere. Formerly, my anti-thyroglobuline was a bit too high. I guess it might be right that viruses are reactivated. Also, after my labtests, I was concerned about my thyroid and went looking on the I'net as a possible explanation, and found this: HHV6. I guess this virus has been reactivated, causing my anti-TPO go up.

Wow this is totally new to me, that HHV6 can affect the thyroid and all these new markers and tests ... I have never been able to the doctors in the US to do more than just the standard panel tests even when I was sure that there is something wrong with my thyroid or perhaps the HHV6 is affecting it. Can somebody please point to a site that talks about these tests and their meaning ?

 

[Gazelle]

antivirals and GcMAF

Hey i knw this is kind of off topic but for all the bad rap that Valcyte gets I have been taking it for almost 7 months now at the high dose and it has practically eradicated my CFS. I work part time now and every once in a while do 1 or 2 15hr days in a week. I excercise moderately and sleep well. That is why when anybody asks, I always say Valcyte: yes ! and try and take stuff to mitigate its side effects. Not once did any of my lab tests results come back looking like I had to be concerned and at the beginning we tested once every 2 weeks.

One week into Valcyte and I could already feel stronger.

It all depends on what combination and how strong your CFS viruses are. But if you take something that only partially helps, remember that you are only giving the virus a chance to gain resistance to it and in the long run, you have one less drug to turn to if things get worse. We already have so few to choose from and even less drugs that doctors are willing to prescribe.

That was what made me decide on a cocktail of drugs as well as going for the dose which would stop replication.

undcvr, how long were you sick before you began the Valcyte, and are you taking it with GcMAF, because I thought anti-virals were generally contraindicated with GcMAF according to Yamamoto's original work? Thanks.

 

[undcvr]

I had it for 15 years and now to think about it almost constant reactivation of EBV which all the many doctor I went to failed to diagnose.

 

[cansado]

After 38 shots, and a 10 week break my inflammatoir blood panel has increased.

 

[Ronan]

I was with KDM a few weeks ago and he didnt mention any new antivirals i should take. He has also told me to stop Artesunate after being on it for about 7 months. Still on the Nexavir though

 

[Nielk]

Ronan are you still on GcMAF and how are you feeling?