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

[slayadragon]

What dose of Meriva are u on?

2 g. I've not used that much of the regular curcumin, so it's not a good comparison. I'll keep experimenting. Thanks!

 

[aquariusgirl]

lisa yr mailbox is full.

 

[aquariusgirl]

I suspect we are pouring money down a drain with antioxidants ..until we can improve the redox status in the brain by reducing pro inflammatory cytokines , presumably by reducing viral load.

what I wld like to know is do we need to do this before or after gcmaf.

or maybe ldn is a sufficient hedge v. IRIS.

wld like some info on this before embarking on my own gcmaf adventure.

 

[Sushi]

Can someone elxplain what is meant by IRIS symptoms, i've heard curcumin mentioned on here alot but have no idea what it helps with!

Hi Ronan,

So glad you are feeling better and past that bad patch.

IRIS is well explained in Wiki: http://en.wikipedia.org/wiki/Immune_reconstitution_inflammatory_syndrome

When a retrovirus (and some other conditions) is treated and the immune system starts to recover it may attack other infections with gusto--giving a sometimes serious inflammatory response. This is something to look out for when taking GcMAF though it happens more in the beginning of the treatment, I am told.

Curcumin is a spice and a good non-drug anti-inflammatory. That is why some of us are taking it. You can (as Froufox mentioned) also get heightened histamine reactions and some doctors are advising anti-histamines with GcMAF--particularly ones that target all three histamine receptors.

I am also getting a heightened histamine response--though not marked--and am taking an anti-histamine.

Froufox, I haven't been getting stinging but have irritated eyes, have had more muscle cramps and needed to take more magnesium, and I also am finding that, for me, (who knows why?!) GcMAF is constipating. Aarg!

All this is liveable though and when I am having a good day--like today--I actually feel better than before starting treatment. I seem to "recover" from the effects of the injection just before the next one--then do pretty well for a few days. The pattern changes though.

I had my 6 th injection today.

Hope you feel better, Frou, on a lower dose. I'd say, from my experience, that if you do feel better, only raise it again slowly at a rate you tolerate. I do think we are dealing with a "big gun" and should respect it. (And I route for it every time they push a needle-ful in! :victory:

Best,
Sushi

 

[aquariusgirl]

I know cansado has posted on his/her improvements in perforin & NK cells.
Can any of the others who have been on gcmaf long-term help us out with some hard data on viral titers, or any markers that would show improvement?
OS, you've done 40 shots/IVs, right?
You must have some labs.
Thanks
AQ

 

[Lou]

Hi everyone,

Just to give an update, I'm better, no question. I guess some tangibles would be that I feel stronger(somewhat subjective, but unlikely mistaken here), sleep better and awake more rested, less intolerant to supplements and foods, and subtle things like maybe clearer eyes,--what else, drawn a blank (perhaps my memory's got a way to go still).

My biggest negative was an onset of depression, or maybe better described as a dull or flat emotional response, this occurring paradoxically when on the exterior all should have been rosy (gcmaf was working and the above mentioned improvements were taking place). The onset was around the third full dose. I learned from Rivka how elevated chemokines and cytokines can make us feel depressed so it could be that this is what happens. But then I also wondered if the gcmaf treatments could possiblly inhibit or deplete certain neurontransmitters, especially acetylcholine, and so last night with the evening meal I took two capsules of choline, and viola, much, much better today. Blind luck or coincidence or placebo effect or a one-time thing I don't know yet. It's classified a vitimin so it probably can't hurt anything to try it if some of you on gcmaf have, or come to have, this depression issue.

All the best,

Lou

 

[froufox]

Hi Sushi

Thanks for reporting back...funny i have been a bit more constipated recently too. I thought it was diet related but since u are getting it too, maybe it is the GcMAF in my case aswell... I wonder if that is also related to the magnesium issue? I havent been getting cramps but i have been sleeping worse which could be related to magnesium. Anyway have been taking more probiotics recently which are helping and doing more mag injections too.

I'm glad your symptoms are tolerable and thats really good news that you're feeling better on some days than before starting treatment. Fingers crossed u continue to improve! Im finding my reactions change too, from week to week... its been a bit of a rollercoaster ride but hopefully from now on a bit less of a rollercoaster!!

I agree it is potent stuff and will be careful. My plan is as u suggest, to do stick to a lower dose for a few weeks until im used to that, and then increase. I think i pushed through too much at first, even though i felt really crap at times, my mind/judgement was off and also on some days i did felt a bit better so it was very deceptive..

Also just wanted to add that I took some sublingual glutathione (Source Naturals) yesterday and today and it seems to have helped a bit with brain and energy.

Take Care

Frou

 

[froufox]

Hi AQ,

Its like chicken & egg isnt it? I think that we have to tackle all these things kind of at the same time...because at the same time as reducing the viral load, you're putting stress on the rest of the body systems... As the endocrine, immune & nervous systems are all intimately connected, dealing with one has an almost immediate impact on the others.. I'm sure that the endocrine and NS dysfunction we have wont be fully corrected until we reduce the viral load. So i guess its trying to keep them all in check at the same time. Not an easy feat i know!!

I dont think that taking antioxidants is a waste of money though as i regard them as supportive treatments as we're doing the other stuff. Eg curcumin is a potent anti-inflammatory and inhibits NFkB.

Its late here now and brain is tired so i hope ive made some kind of sense!

I suspect we are pouring money down a drain with antioxidants ..until we can improve the redox status in the brain by reducing pro inflammatory cytokines , presumably by reducing viral load.

what I wld like to know is do we need to do this before or after gcmaf.

or maybe ldn is a sufficient hedge v. IRIS.

wld like some info on this before embarking on my own gcmaf adventure.

 

[mojoey]

Update:

So for those that haven't checked out our spreadsheet, so far it seems like 9 patients out of 22 have experienced any degree of improvement. 41%. Based solely on the responses, it doesn't seem like gcmaf would be enough for most patients as a standalone therapy but it's still early and very few dutch patients have entered their data. It'd be very interesting to see what happens to that success rate if we could get more dutch patients reporting (since they've collectively been on it for a longer period of time)

 

[slayadragon]

I read through this whole thread and still have a basic question. Maybe I missed it.

It's my understanding that macrophages are supposed to just be a first line of defense against bugs of all sorts. They're not supposed to take care of infections themselves. They're supposed to serve as emergency guards while the rest of the immune system is firing up.

Moreover, although macrophages indeed are "Pac Men," they are really messy eaters. They burp little bits of inflammatory crap all over the place, which is why (for instance) our tissues get inflamed when we get a splinter in our toe. Considering how bad inflammation is in making XMRV activate, this does not sound like a good idea for us. It would be less of a problem in (say) AIDS or cancer, which do not seem to be specifically exacerbated by inflammation.

I'm not sure what part of the immune system is "supposed" to take care of XMRV -- if it's T cells or B cells or maybe even NK cells. (Does anyone know?) But I'm sure it's not the macrophages.

Is the theory that this is supposed to serve as a control point to get the virus in line temporarily, so that things can reset? How is this anticipated to work, from a theoretical point of view?

It would be easier for me to get a grasp of this if I understood why the crucial parts of our immune system (NKC's, T regs, B cells) are not working. Shoemaker says mold, but I don't believe him. Gerwyn et al say XMRV, but don't explain it well enough that I feel confident. Maybe there's some other toxin or some other pathogen, or something I'm missing.

Has anybody with "real" ME ever gotten their NKC's fixed, for example? IF so, how did they do it?

Again, I may well be missing something that everybody else is understanding. But I'd be much more confident trying something so wholly experimental (and expensive) myself if I had a strong understanding of the theory.

Thanks for any insights you all might be able to provide.

Best, Lisa

 

[cansado]

Update:

be enough for most patients as a standalone therapy but it's still early and very few dutch patients have entered their data. It'd be very interesting to see what happens to that success rate if we could get more dutch patients reporting (since they've collectively been on it for a longer period of time)

I will try to get more patients involved. Quite a few of them are starting the GcMaf.

 

[cansado]

I like the optimism people have here and I bet that GcMAF does help but I also bet that it is no solution as some seem to claim here. If you look at all the XMRV negative studies I think we are in big trouble right now.

You are right D, I have been told that it is no solution. After the weekly shots you should stay on the GcMaf only once a month. I am not sure if there are already patients who are on monthly shots..

 

[Rrrr]

joey, which stool test are you thinking of doing and why? (which lab, and which test?)

rrrr

Thanks Sushi for the summary.

I'll probably just get the stool testing and VDR done first then.

I am considering staying in Europe as well for the same reason.

 

[Rrrr]

can someone post the link to the spreadsheet again? please?

 

[Rrrr]

I heard from KDM's office today that they had a successful shipment of gcmaf to a KDM patient in the U.S. This is good news, I think.

 

[Dan_USAAZ]

I read through this whole thread and still have a basic question. Maybe I missed it.

It's my understanding that macrophages are supposed to just be a first line of defense against bugs of all sorts. They're not supposed to take care of infections themselves. They're supposed to serve as emergency guards while the rest of the immune system is firing up.

Moreover, although macrophages indeed are "Pac Men," they are really messy eaters. They burp little bits of inflammatory crap all over the place, which is why (for instance) our tissues get inflamed when we get a splinter in our toe. Considering how bad inflammation is in making XMRV activate, this does not sound like a good idea for us. It would be less of a problem in (say) AIDS or cancer, which do not seem to be specifically exacerbated by inflammation.

Hi Lisa,
I am not sure if the details I found support your assessment of macrophage activity or suggest greater activity.

It is my understanding that some cancers, HIV and possibly XMRV release an enzyme called nagalese that turns off the ability for our macrophages to activate. Treatment with GcMAF circumvents the nagalese affect and activates the macrophages.

Wikipedia appears to give a fairly good description of macrophage function.

http://en.wikipedia.org/wiki/Macrophage

The following excerpts jump out at me in relation to the questions you presented.

Macrophages function in both non-specific defense (innate immunity) as well as help initiate specific defense mechanisms (adaptive immunity) of vertebrate animals. Their role is to phagocytose (engulf and then digest) cellular debris and pathogens, either as stationary or as mobile cells. They also stimulate lymphocytes and other immune cells to respond to pathogens.

And

Macrophages are versatile cells that play many roles. As scavengers, they rid the body of worn-out cells and other debris. Along with dendritic cells, they are foremost among the cells that "present" antigen, a crucial role in initiating an immune response. As secretory cells, monocytes and macrophages are vital to the regulation of immune responses and the development of inflammation; they produce a wide array of powerful chemical substances (monokines) including enzymes, complement proteins, and regulatory factors such as interleukin-1. At the same time, they carry receptors for lymphokines that allow them to be "activated" into single-minded pursuit of microbes and tumour cells.

Macrophages appear to do much more than just the digestion of cellular debris and pathogens.

In regard to the inflammation question, macrophages play a role in the cleanup of necrotic cellular debris caused by chronic inflammation. So, while GcMAF activation may cause inflammation, it also plays a role in correcting damage caused by chronic inflammation.

It would appear to me that the macrophage plays a larger role in the immune response then just the garbage collector. (just my interpretation)

These details may be very basic and already known to most of you. Please correct statements and assumptions I may have incorrectly made.

Thanks.

 

[Sushi]

I like the optimism people have here and I bet that GcMAF does help but I also bet that it is no solution as some seem to claim here.

Hi Diesel,

I certainly don't feel that GcMAF is going to be a "final solution." I guess I am hoping that it will halt damage, reverse some of it and give us a "window" till more is known. I also hope to feel better in the mean time. Perhaps it will turn out to be part of a more comprehensive protocol. Still at the moment, I am glad to be taking it as I do see some hopeful changes.

Best,
Sushi

 

[*GG*]

Hi Sushi

Thanks for reporting back...funny i have been a bit more constipated recently too. I thought it was diet related but since u are getting it too, maybe it is the GcMAF in my case aswell... I wonder if that is also related to the magnesium issue? I havent been getting cramps but i have been sleeping worse which could be related to magnesium. Anyway have been taking more probiotics recently which are helping and doing more mag injections too.
Frou

Thanks to all for reporting your experiences of GCMAF with all us!

I found this interesting, I am only on LDN, but the mental effects and digestion issues are ringing a bell with me. I had some weird issues mentally when I started LDN 1.5 years ago, and have recently notice that my digestion seems to be getting better! Less IBS and more solid stools/constipation? It's been so long that I have a few solid stools in a row, that it appears that I am getting more constipation now, nothing that bad though!

GG

 

[serg1942]

Hi guys,

These are my optimistic comments of the day, as i am having a good one:

I feel in general better since i started GcMAF, as I have been reporting. I hope it is a big part of the solution, if an infection is really the monkey wrench on CFS pathogenesis.

What I still think is that the methylation block is the biochemical cause of CFS, and that we need to get rid of everything that prevents it from working properly, including XMRV, MLVs, Borrelia, Fungus, toxins, etc., in order to get cured.

I beliebe that at some point on GcMAF, we'll be able to improve methylation, and therefore to silence the MLVs, and probably other virus (E.G. Herpes viruses).

After this, we will probably need stem cells (well, those who can afford it! I could sell a kidney though, but it doesn't seem like a good idea if i want to get cured from CFS! ;-)

Let me throw out a question: Has anyone successfully restored the methylation cycle and his/her GSH levels, and is still sick?????

Saluditos,
Sergio

 

[slayadragon]

Let me throw out a question: Has anyone successfully restored the methylation cycle and his/her GSH levels, and is still sick?????

Saluditos,
Sergio

There was someone on the Yahoo Yasko group who reported this a few months ago. Rich suggested looking at other factors -- I know Lyme and mold were amongst them.