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

[mojoey]

What Mr. Noakes said resonates with the philosophy behind why maf 314 causes much less side effects than reported by patients using the injected form. GcMAF is a natural factor in our system and technically should not cause any side effects, let alone at the super low dose that KDM patients are getting. It just doesn't make sense when maf 314 is 200 times more powerful than the injected dose and doesn't cause 200 times the problem (in fact it causes less than the microscopic injected dose). If it caused proportionally as much inflammation as the injected form it would literally kill the patient.

 

[Sushi]

What Mr. Noakes said resonates with the philosophy behind why maf 314 causes much less side effects than reported by patients using the injected form. GcMAF is a natural factor in our system and technically should not cause any side effects, let alone at the super low dose that KDM patients are getting. It just doesn't make sense when maf 314 is 200 times more powerful than the injected dose and doesn't cause 200 times the problem (in fact it causes less than the microscopic injected dose). If it caused proportionally as much inflammation as the injected form it would literally kill the patient.

Hi Joey,

Just to give another anecdotal experience with MAF 314, someone "off the street" (i.e. no prep purification before) tasted one spoonful of MAF 314 and had a massive reaction--almost had to go to the ER with an IRIS response. She had the "real stuff" from the study, so individual immune systems can react very differently to any form of GcMAF.

MAF 314 sounds extremely promising, but, like other forms of GcMAF, needs close supervision from a doctor with a lot of experience prescribing it.

Best,
Sushi

 

[mojoey]

Am I correct in interpreting that there frequently seems to be a delayed inflammatory response to the injected GcMAF? Many patients either have a non-response or even good response to it for week or months, and then experience a relapse sometimes severe enough to put them below baseline. Is it due to calcitriol rising (vit d toxicity?) If it were an issue with the product itself, wouldn't we see immediate inflammatory responses rather than delayed?

This is the part I can't figure out.

 

[garcia]

Hi Joey, in my experience there seems to be a delay between the time of injection and the time of maximal effect/discomfort, usually 3-5 days or so (ballpark).

There is also a cumulative effect where the effect of injections builds up over time. The first injection will generally feel mild. Subsequent injections can feel stronger and stronger. For many of us a point comes where we have to drop the dose right down and even stop completely.

Finally GcMAF also seems to have long term effects. I am still experiencing some (mild) benefits months after having stopped (mainly a greater feeling of relaxation at night).

Am I correct in interpreting that there frequently seems to be a delayed inflammatory response to the injected GcMAF? Many patients either have a non-response or even good response to it for week or months, and then experience a relapse sometimes severe enough to put them below baseline. Is it due to calcitriol rising (vit d toxicity?) If it were an issue with the product itself, wouldn't we see immediate inflammatory responses rather than delayed?

This is the part I can't figure out.

 

[mojoey]

Hey Garcia,

First off, glad to hear you're doing better. Seems like a turn of events from before?

I'm aware that patietns have the maximal discomfort after 3-5 days, but that's not what I"m referring to. That dies down quickly for most patients. I'm talking about the spikes in c4a that happen months after and that leads to severe relapses.

 

[vli]

If it were an issue with the product itself, wouldn't we see immediate inflammatory responses rather than delayed?

This is the part I can't figure out.

Please, someone explain this to me too please.
I know garcia you answered this, but I still don't understand WHY??? (the MONTHS, not days-long, delay Joey mentioned)

 

[Sushi]

To Nielk
The only proof we have is, ok, rather obviously, that none of our participants suffer the side effects described on this forum. They have trivial or, in most cases, no side effects at all....

Why should they? GcMAF is in all healthy people. Did you have side effects from GcMAF when you were young and healthy, even though you had a full complement of it?....

A few members need to get off this forum, where so many of the postings are recycled disinformation, and do some original research.

You can take GcMAF continually, and overdose, without side effects (unless you have massive cancer tumours. See "Side effects" on our website.)

David Noakes 0044 752 844 1672
http://gcmaf.eu

Sorry, I just can't let some of your statements stand without comment. When you say, above, that none of your participants have any of the side-effects mentioned on this thread, your own website warns of some of these side-effects:

"There is a view that GcMAF does not have side effects. In early stage cancer and HIV that has been shown to be true, but do not let that lull you into a false sense of security....If HIV, IRIS may cause you to get worse before you get better.....Other side effects include cytokine activity (with accompanying fatigue and minor weight loss), histamine release (with possibly a headache) and the symptoms of a fever as the immune system goes to work."

Though you are talking about HIV and cancer, (waiting for your lab-confirmed statistics on ME/CFS patients who are XMRV positive), these are exactly the side-effects reported by some patients here. True, GcMAF is natural to a healthy body but this is a ME/CFS forum and we are very unhealthy, carry many viruses and infections, and probably many of us have a retrovirus. We are also taking a dose of GcMAF that is astronomically higher than the body naturally produces itself. IRIS is a very possible effect from GcMAF activating macrophages in patients like us. Most of the doctors prescribing GcMAF give patients instructions on how to deal with IRIS.

As for your statement that "A few members need to get off this forum, where so many of the postings are recycled disinformation, and do some original research," this is a very disrespectful and out-of-line comment that will not win you any friends (or clients) here.

Sushi

 

[Sushi]

Am I correct in interpreting that there frequently seems to be a delayed inflammatory response to the injected GcMAF? Many patients either have a non-response or even good response to it for week or months, and then experience a relapse sometimes severe enough to put them below baseline. Is it due to calcitriol rising (vit d toxicity?) If it were an issue with the product itself, wouldn't we see immediate inflammatory responses rather than delayed?

This is the part I can't figure out.

Hi Joey,

One possible explanation for this is that in the initial stages of taking GcMAF the immune system's response is crippled by XMRV. After taking it for awhile, the infected cells are dealt with and the immune system is better able to mount a response to the pathogens it starts to "see."

The immune system knows how to "do" inflammation as a response to pathogens, and after taking GcMAF for a while, it is able to do this with greater efficiency. Hence a rise in inflammation markers. The trick seems to balance the immune response. This is what we are trying to do now.

Sushi

 

[mojoey]

Does c4a rise exponentially when AIDS patients experience IRIS? Dr. DJ said that after ARVs her inflammatory markers climbed but then went down as she began to improve.

 

[firefly]

Hi Joey,

Just to give another anecdotal experience with MAF 314, someone "off the street" (i.e. no prep purification before) tasted one spoonful of MAF 314 and had a massive reaction--almost had to go to the ER with an IRIS response. She had the "real stuff" from the study, so individual immune systems can react very differently to any form of GcMAF.

MAF 314 sounds extremely promising, but, like other forms of GcMAF, needs close supervision from a doctor with a lot of experience prescribing it.

Best,
Sushi


Hi Sushi,

Curious about this. Is this from the Cheney study? I hear from prof. Ruggiero that Dr. Cheney will be conducting workshops for patients who wish to make their own GcMaf. This sounded so odd to me, but I've only started investigating. Will call Cheney's office next week. In the meantime, does anyone else know how/where to obtain Maf 314?

 

[mojoey]

These patients are not making their own GcMaf willy nilly. They are being instructed by Ruggiero himself on how to make it with proprietary methods and materials. The course is very expensive and spots are very limited as well.

Per my last convo with Dr. Ruggiero, there is no other way to obtain maf 314 at the moment. The trial with Cheney is being used to determine clinical efficacy in ME/CFS patients. Before the trial is finished, there won't be direct-to-patient sales.

 

[garcia]

Hi Joey,

One possible explanation for this is that in the initial stages of taking GcMAF the immune system's response is crippled by XMRV. After taking it for awhile, the infected cells are dealt with and the immune system is better able to mount a response to the pathogens it starts to "see."

The immune system knows how to "do" inflammation as a response to pathogens, and after taking GcMAF for a while, it is able to do this with greater efficiency. Hence a rise in inflammation markers. The trick seems to balance the immune response. This is what we are trying to do now.

Sushi

Hi Sushi,
IMHO I don't think the infected cells can be dealt with in such a short amount of time, at least not in my case. I only ever did a few GcMAF injections (7?) and my underlying illnesss/pathology is exactly the same, as is presumably my pathogen load.

However like others my inflammation response to the GcMAF has increased markedly though, to the point where I dare not do another injection.

My immune system isn't any better, just more reactive (in a bad way) to GcMAF.

I don't know what parameter or set of parameters GcMAF is increasing, but given that we are taking 1,000 times the amount naturally present in the body, it does not surprise me that there are long term effects from it.

I know that my immune system in general is primed towards inflammation (much more so than most others). I suspect that overactive NF-KB may be involved.

 

[janey]

JANEY, do you think it's the calcium channel blocker that is making the gcmaf more tolerable?
Who is guiding yr txtment? KDM?

Aquariusgirl, I think the calcium channel blocker is helping. My main problem with gcmaf was insomnia. I'm only taking a quarter of a tablet and I'm sleeping ok now. But I've been injecting fortnightly rather than weekly until this week. The real test will be to see how I go with weekly injections.

 

[garcia]

Hey Garcia,

First off, glad to hear you're doing better. Seems like a turn of events from before?

I'm aware that patietns have the maximal discomfort after 3-5 days, but that's not what I"m referring to. That dies down quickly for most patients. I'm talking about the spikes in c4a that happen months after and that leads to severe relapses.

Hi Joey,
thanks for clarifying. I'm not doing better, just off GcMAF.

I'm not sure whether the spike in c4a are causal or merely indicative of inflammation, but it seems that the excess inflammation is what leads to relapse.

The question is what causes the GcMAF effects/inflammation to build up over time I guess?

 

[vli]

The question is what causes the GcMAF effects/inflammation to build up over time I guess?

yes... i am still hoping for someone to answer me on this (if they can)

 

[firefly]

These patients are not making their own GcMaf willy nilly. They are being instructed by Ruggiero himself on how to make it with proprietary methods and materials. The course is very expensive and spots are very limited as well.

Per my last convo with Dr. Ruggiero, there is no other way to obtain maf 314 at the moment. The trial with Cheney is being used to determine clinical efficacy in ME/CFS patients. Before the trial is finished, there won't be direct-to-patient sales.

Yes, just as I imagined. Alas, all that comes into contact with Cheney becomes limited and expensive. I have been suggesting to Dr. Ruggiero that he produce and market the product via other avenues and clinical trials.

 

[mojoey]

Ruggiero has his reasons for doing things this way, and they make sense to me. As much as I would like to have direct access to his product for selfish reasons, it doesn't take much pondering to see what political risks he invites by allowing this for a product like this that could change the face of medicine. The same goes for clinical trials: they require an IRB which invites heavy scrutiny, so informal, CLOSED trials must be the way.

The less risks he takes, the better chance we'll get to try this for the long haul if it's effective. Sure he can open the floodgates now and let a bunch of us try it, but I guarantee we wouldn't be able to try it for long before supply is cut off, so what would be the good in that?

 

[firefly]

Indeed. The politics are going to be difficult to navigate. I know prof. Ruggiero will do what is best for patients. I hear what you are saying -- not sure I agree with it though. The cat's out of the bag already. Scrutiny will come whether the trials are small or large. I see no way around that. My greater concern is that teaming up with Dr. Cheney is unlikely to be the best choice politically. There's many other CFS doctors with arguably better political connetions and institutional savvy. But for all of our sakes, I hope you are correct. Getting this right, politically, and from a market point of view, is going to be critical.

 

[firefly]

The critical question is: how long do you attempt to stay under the radar. Small or large, if the FDA decides it wants to quash something, it will. (See, Burzynski, the movie -- sad, infuriating, hopegiving all at once). Here's hoping the path for MAF 314 is less riddled with law-suits. We should be able to learn something from past attempts -- I trust Ruggiero and Cheney are seeking top-notch legal council on this right from the start.

 

[lobba123]

it is very good to know you can prepare maf 3 14 yourself, this way it is almost impossible to block it by FDA.

US is not the best place where to start but probably it was the first place where a very good trial study has been offered.
europe is much safer from FDA for sure

Indeed. The politics are going to be difficult to navigate. I know prof. Ruggiero will do what is best for patients. I hear what you are saying -- not sure I agree with it though. The cat's out of the bag already. Scrutiny will come whether the trials are small or large. I see no way around that. My greater concern is that teaming up with Dr. Cheney is unlikely to be the best choice politically. There's many other CFS doctors with arguably better political connetions and institutional savvy. But for all of our sakes, I hope you are correct. Getting this right, politically, and from a market point of view, is going to be critical.