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

[Nielk]

so it seems like those who respond seem to do so quickly. this is bad news for me.

How are you feeling Daffodil? From what I understand (I didn't take it yet myself), it takes a few weeks to see results. Am I wrong?

 

[Sushi]

so it seems like those who respond seem to do so quickly. this is bad news for me.

That is not really true. Many didn't notice a significant difference until on it for many months. Although, some of the same people noticed side-effects (not to GcMAF but to macrophage activation) quickly--particularly if their dose was too high for them. If they were on a dose low enough not to give them inflammation, they may have noticed nothing at first.

Best,
Sushi

 

[Ronan]

It took me many months to start to notice improvements. It's been very gradual over a year so it's even hard to notice improvements from month to month but when I compare how am now to before I started I see a difference. Saying that, my Neglase is still well above normal range and it's only when you get it down that you really start to fight off confections so still plenty of improvements to go for me possibly. Just have to wait and see...

 

[Daffodil]

i'm sorry you have to put up with more whining from me (as if you havent read enough LOL). I am just at the end of my rope

 

[Nabo]

I had my last shot of gc maf 5 weeks a go.

Still i am very sick and having an iris reaction.
So much pain..... cant explain feel sooooooooooooooo bad.

my nagalase is normal so i think i dont ever have to use that shit anymore!!

Sorry.. some people do feel better but i only feel worse and worse.
Same as last year when i took it 6 months.

So never again! hope my iris goes away quick!!!!!

 

[Ronan]

No need to apologise Daffodil, I totally understand your scepticism and anxiousness

Nabo, I'm sorry to hear what your dealing with. Is it possibly a herx reaction or a coinfection your immune system is now dealing with.... or just a bad reaction in general?

 

[Daffodil]

oh man. this is just so messed up. i am sick of everything. how can anyone deal with this much uncertainty for 20 yrs

 

[CindyWillis]

We have been on it over a year because when we stop taking it we regress to where we were before we started taking it. We are still seeing improvements every single week 15 months later. Unfortunate that we have to continue taking it, but there isn't a better option right now except maybe rituximab which is being researched now.

Hi Sushi,

Thanks, I didn't realize that people were staying on it for that long. Is it because if one goes off the effect goes away?

 

[CindyWillis]

After 15 months, we still have inflammation but it is half as much now but still present. I take two allergy pills a day for it.

could someone who knows how several people have responded to gcmaf, comment on how long it can take the "die-off" to end? i see that there are so many who are still inflammed even afetr 25 injections.......are there people who started to improve only after 30? 40?

thank you

 

[Daffodil]

hello. could someone please tell me if their brain fog went away completely with gcmaf?

thank you

 

[shannah]

I can't answer that particular question Daff but just letting you know about Jocelyn's latest blog on her IRIS with GcMAF that might help with perspective.

http://nopostergirl.com/2012/02/26/the-end-of-iris/

Well that sucked.

Some of you may remember that Ive been dealing with IRIS caused by my experimental treatment, GcMAF (see my previous posts, Everybody Gets Through IRIS and Further Adventures in IRIS, and if you want a brief explanation of GcMAF, read The Post-Appointment Post). I started the GcMAF on June 21st with a 20 nanogram dose, and was slowly increasing the amount every five days up to the full 100 nanograms, which I reached on July 31st. August 10th was my seventh dose, and my third at 100 nanograms, and that day was when the IRIS hit.

My birthday is August 12th. This is not among the best birthday presents Ive ever received.

It wasnt unusual for me to feel a bit puny, warm, and miserable on the day of dosing, so at first I didnt realize anything was up, but usually I would feel markedly better the day after. When it didnt subside the next day, I thought maybe the cumulative effect of the full doses was just causing the dosing yuck to hang around a little bit longer than usual. But when it continued getting worse for days, I realized I was in IRIS.

My expectation, from hearing about others experiences, was that it was going to last for a few days, or for two or three weeks at the most. Not only did it not end that quickly, it persisted for five months, finally trailing off around January 10th. Because of that expectation, at some point I stopped calling it IRIS and just called it a cytokine storm.

It wasnt as bad as it was at the beginning for a whole five months, but those five months have included quite a bit of concentrated misery. The first month, I felt so overheated all the time that I couldnt manage to keep any clothes on at all. I had never really wondered whether I wound enjoy nudism, but that month allowed me to determine that it really wasnt for me. In September, I still felt hot all the time, but I was able to go Donald Duck-style shirt but no pants. I didnt get pajama pants back into rotation until sometime in December.

I had originally thought I would restart the GcMAF after the IRIS abated. After all, I still have four months worth of it sitting alongside our summers worth of home-grown tomato curry sauce in our chest freezer. But by the time my IRIS got going, Dr. Cheney was working with Marco Ruggiero on a probiotic yogurt version of GcMAF called MAF 314, and getting ready to offer seminars in how to make it. In October, there was a seminar that fit with Chimps teaching schedule, and we didnt know when there would be another one that would, so he went down to Asheville to learn, and came back with the starter.

When my IRIS symptoms finally went away in January it was five months pretty much exactly, January 10th the list of pre-MAF 314 tests had been lengthened, and having felt bad for months, I wasnt really in the mood to do the human pincushion routine again any time soon. So Ive decided that Im going to wait until at least after my appointment with Dr. Cheney in March to start on the MAF 314 process. I want to talk to him in depth about the risks, and waiting a little bit longer will allow him to gather more information on how other people are doing on it, and hopefully figure out how those results are likely to translate to me.

Im not bitter about the IRIS. It wasnt at all fun, but this is one of those things that comes along with an experimental treatment. I would have rather have been a person who got miraculous improvement out of it and no downside, but there are no sure things in ME/CFS treatment, and Im very grateful that I seem to have come out of the experience without permanent harm.

I do seem to be doing better than I was before I started GcMAF. Im able to get my own breakfast these days, and I seem to find myself up slightly more often during the day, though of course I still have to watch how much I do that pretty closely. On very good days, Ive even done a tiny bit of cooking here and there things that I can do sitting in a chair for a few minutes, like measuring a few dry ingredients or warming tortillas. I cant say exactly what is making this possible, other than continuing to sleep and the Cheney Protocol in general.

I do worry that I might never restart chemical GcMAF after all, what would I expect to happen if I did, given what happened last time? And depending on how others do and what it seems likely to do to me, I worry that its also not a sure thing that Ill ever even start MAF 314. If I decide Im not able to do either, thats certainly money I would rather have saved, but unfortunately, sometimes we have to make decisions without complete information. Its a sunk cost now. This is the first time in the seven years that Ive had ME/CFS that something became available to me that seemed like it might be a game-changer, treatment-wise, and I feel like I made the best decisions I could along the way. I know, though, that Ill undoubtedly have this experience in mind when the next new treatment hotness (heh!) comes along, and I might be more prone to let others be the guinea pigs for a while first.

 

[Sushi]

hello. could someone please tell me if their brain fog went away completely with gcmaf?

thank you

I know of some patients whose brain fog greatly improved, and of one who only has a trace of it left. But this was after many months of treatment.

Best,
Sushi

 

[Overstressed]

Hi,

I want to express my concerns,but I don't want to create any unnecessary panic, because we see people reacting very differently to Gc-Maf. This can have very different causes, but what concerns me, is, when you follow HIV+ people on Gc-Maf, it looks like (at least) for a number of people, Gc-Maf, but also MAF314, INCREASES(!) the viral load. Despite the fact they might feel better.

There was this guy here HIV+, TomTomTom, who's now on MAF314 and reported increased viral load. On the other hand, we have Lobba, reporting decreasing numbers of HBV. I don't think increasing viral load is good for any of us. So, I'm wondering whether people reporting difficulties with Gc-Maf, have in fact this problem ? Perhaps Gc-Maf works in a complete different way as we think, and this might be responsible for the 'feeling better'-feeling people have. I think I once read a report where Gc-Maf was showing very good effects on wound healing, suggesting it could be very useful in treatment of victims of third degree burn.

I know we don't have a viral load-test, but I wonder if this ever have been considered and discussed with a specialist ? I think there are other options to suggest an increase in viral load. I remember J.Mikovits one time saying to be careful with treatment (like Gc-Maf), because it could(!) perhaps activate latent virus(es).


Best regards,
OS.

 

[Daffodil]

Lobba is also taking antivirals with the GcMAF, which might account for the decreasing viral load.

 

[xrunner]

I know we don't have a viral load-test, but I wonder if this ever have been considered and discussed with a specialist ? I think there are other options to suggest an increase in viral load. I remember J.Mikovits one time saying to be careful with treatment (like Gc-Maf), because it could(!) perhaps activate latent virus(es).


Best regards,
OS.

In my opinion that's a good sign.
Below, I pasted an explanation taken from Dr Burrascano's "Diagnostic hints and treatment guidelines for Lyme..." of why Lyme patients become seropositive after successful treatment. The immune system is so suppressed by the infection(s) that it can't produce enough antibodies to be detected by testing and the patients may test negative. Successful treatment allows the immune system to produce an antibody response which can later be strong enough to be detected by serological tests.
The same concept should also apply to other immunosuppressive infections.

The Mikovits' explanation I don't understand it and can't make any sense of it. If infections were reactivated then surely this would drive Nagalase upwards whilst NK cells, CD4 and whatever is used to measure immune health would move downwards. Not the other way round.

-----
Chronic Lyme is an altogether different illness than earlier stages, mainly because of the inhibitory effect on
the immune system (Bb has been demonstrated in vitro to both inhibit and kill B- and T-cells, and will
decrease the count of the CD-57 subset of the natural killer cells). As a result, not only is the infection with Bb
perpetuated and allowed to advance, but the entire issue of co-infections arises. Ticks may contain and
transmit to the host a multitude of potential pathogens.

The clinical presentation of Lyme therefore reflects which pathogens are present and in what proportion.
Apparently, in early infections, before extensive damage
to the immune system has occurred, if the germ load of the co-infectors is low, and the Lyme is treated, many
of the other tick-transmitted microbes can be contained and eliminated by the immune system. However, in
the chronic patient, because of the inhibited defenses, the individual components of the co-infection are now
active enough so that they too add to features of the illness and must be treated. In addition, many latent
infections which may have pre-dated the tick bite, for example herpes viruses, can reactivate, thus adding to
the illness.
An unfortunate corollary is that serologic tests can become less sensitive as the infections progress,
obviously because of the decreased immune response upon which these tests are based. In addition,
immune complexes form, trapping Bb antibodies. These complexed antibodies are not detected by serologic
testing. Not surprisingly the seronegative patient will convert to seropositive 36% of the time after antibiotic
treatment has begun and a recovery is underway. Similarly, the antibody titer may rise, and the number of
bands on the western blot may increase as treatment progresses and the patient recovers. Only years after a
successfully treated infection will the serologic response begin to diminish.
The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and
the presence of co-infections. These factors also are proportional to the intensity and duration of treatment
needed for recovery....

http://www.ilads.org/files/burrascano_0905.pdf

 

[Daffodil]

hi all. wonder if someone could comment. i have taken 3rd shot of GcMAF and have experienced nothing, no headaches or anything. could it still be working?

i received my EBV antibody results from 2 weeks ago, just before i began GcMAF. they are high and they never were this high before. i was on years of antivirals, too.

i would like to increase GcMAF but they told me they increase only after 4 weeks, if the doctor says its ok

 

[ukxmrv]

At the London Invest in ME conference Dr Mikovits had a slide of possible treatments to use and GC-MAF was included.

Maybe she changed her mind or something?

My impression from talking to patients of Prof DeMeilier is that he thinks it's important to address the infections as well. He may have noticed a reactivation of these.

All things to bear in mind and good to get these warnings so we can watch out.

 

[Sushi]

hi all. wonder if someone could comment. i have taken 3rd shot of GcMAF and have experienced nothing, no headaches or anything. could it still be working?

i received my EBV antibody results from 2 weeks ago, just before i began GcMAF. they are high and they never were this high before. i was on years of antivirals, too.

i would like to increase GcMAF but they told me they increase only after 4 weeks, if the doctor says its ok

Hi Daff,

You do not want to experience headaches! Not just because of the pain, but it is also a sign to report to the doctor. The fact that you are not feeling anything likely means that you are not getting much inflammation--which is good!

Having taken a higher dose and gotten inflammation after a while, I am very happy to stick to a low dose. Don't try to push it--you have had enough pain and inflammation can sneak up on you. The dose you are on is therapeutic. I am taking the same dose and each month I feel a bit better, but don't get the side-effects you can get on a higher dose.

Best wishes,
Sushi

 

[Daffodil]

Thanks Sushi. I notice Cansado on this board had no effects from the GcMAF and did not improve after 38 weeks, so I thought maybe some exacerbation was a positive sign...

 

[lobba123]

hbv is the most studied virus and also the most common infection world wide, we dont use pcrs anymore because virus replciation doesn t show anything about clearance of virus and infected cells.
hbv lifecycle is very complicated and the virus can replicate also as a viral template integrated in human dna, the test i do is hbsag quantity which is produced by the integrated dna in infected cells even if there is no virus anymore.

my hbvdna is und by antivirals and this stops virus to damage the liver and also rescue some level of immune response against hbv but antivirals are totlly useless on integrated dna.the integrated dna replicates with the liver cells so there is no way to stop it unless immune system activates and can see those infected cells with integrated dna and kill them

so my results are very interesting because i am showing a decrease of one of these facts or all of them together:
more antibodies against hbsag and more control over the infection, not likely, hbsg is so much more than hbsab antiboies that there is no way for this

macrophages and nk cells are killing more infected cells and destrying integrated dna, very much likly

so to sum gcmaf is lowering infected cells and production of hbsag from integrated dna which in turn suppress immune response aginst hbv
hbvdna replication is undetactable by antivirals but this has no effect on clearance of the virus, it can just stop or lower liver damage as a result

Lobba is also taking antivirals with the GcMAF, which might account for the decreasing viral load.