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

[lobba123]

wow that's super ultra cheap...
my antiviral entecavir is 750euro per month, i am lucky i am italian it is free
the other antiviral i take off label is 100euro=1000pills generic from india, in Us the brand alinia would be more than 3000usd per month
interferon is about 1000euro per month or per injection, dont remember also this paid by healthcare
who got mutants combo with tenofovir too, i think about 600euro per months

just figure how much money they get from an hbv patient for life without eradicating virus.....we are like hiv for drug makers a goldmine

 

[lobba123]

thank you for ur feedback, at least we now know Gcmaf is cheapest than any hbv drug

the biggest concern is just to know if immune system can be stopped in case of over reaction by lowering GcMAF or stopping it complitely or using immune suppressive drugs.i guess it is the same problem you might get or hiv carriers might get in case of IRIS

did any of you tried it very low dose to avoid excess of inflammation?

 

[lobba123]

forgot to compare exactly:
alinia indian generic 100euro for 1000pills
US brand is 3000usd for only 124pills....

i stress this because when you study a little and understand how they rip off money that makes you very angry

 

[Overstressed]

Hi Lobba,

I don't think anyone here can give you the certainty that Gc-Maf can clear any virus from your system, though the response of quite some people on Gc-Maf is good, but we don't know, yet, why that is.

On the other hand, there are trials ongoing on IL-7, and they have already published some great results with Hep-C and other infections too. The reason why I mention Hep-C, is that they have proof they cleared Hep-C with IL-7. I think you're better off with a therapy that already has proven to eradicate a virus like Hep-C.

Gc-Maf might do great things, but it's still early days. Check the website of http://www.cytheris.com, they're conducting trials on IL-7, and I think in Italy too. Perhaps you can join a trial ?

Good luck to you, I hope you will be healed soon!
OS.

 

[Sushi]

thank you for ur feedback, at least we now know Gcmaf is cheapest than any hbv drug

the biggest concern is just to know if immune system can be stopped in case of over reaction by lowering GcMAF or stopping it complitely or using immune suppressive drugs.i guess it is the same problem you might get or hiv carriers might get in case of IRIS

did any of you tried it very low dose to avoid excess of inflammation?

Hi lobba,

Sorry no one here has experience with GcMAF and Hep B. As far as modulating the dose, I also see Prof. De Meirleir in Brussels (filfla had the price right--35 EUR per dose or 100ng vial) and he started me on a half dose. I took a half dose the first two weeks (doctors usually prescribe one dose per week) and then a 3/4 dose the third week. Since then I have been taking a full dose--I have had 7 doses.

There are protocols for lowering inflammation if it occurs, although not many seem to find it a problem. Also, the macrophages (both the number and the activity) seem to peak after 3 or 4 days and the "activation symptoms" that some of us are getting also rise and fall in the week after the injection. Generally the day before the next injection I feel fine--which probably means that the activity has "died down."

From this experience, it would seem that if you had too strong a reaction, it would only last for a few days (and you could use a protocol to reduce it) and then you could lower the dose for the next infusion. De Meirleir has suggested going down to a fifth of a dose for a few patients who have had very uncomfortable reactions.

Both Sergio and I have had liver enzymes monitored while on GcMAF and they were completely normal.

Also, re: the price, there are 3 main sources for GcMAF right now and they all charge different amounts. The Israeli/German source (the formulation was licensed by Yamamoto) is $1000 per vial of 100 ng. BGLI in the Netherlands is charging approximately $100 per vial of 100 ng. Prof. De Meirleir has his own source using the price quoted above. I believe you have to be his patient to get it from him.

Best wishes,
Sushi

 

[lobba123]

il7 is dangerous because it also trigger autoimmune reactions, we discussed it in 2009 before starting tx and none of the researchers liked it, also dr.andreone, the one making the trial in italy told me that it would be better to wait and see if i clear with current antivirals

actually alinia is working decreasing the surface antigen which reflects the balance between virus templates in the cells and immune system (the virions are 99% cleared) but it goes up and down in this first year, so we know we just need a little boost to clear probably and between interferon, il7 and gcmaf the safest looked gcmaf

if it works it will be clear immediately by the surface antigen quantity....for all therapies it stays complitely stable in non responders and goes down in responders by a couple of months even if very slow.at least we are lucky on hbv since we have a very sensible parameter to see immediate immune system action

 

[lobba123]

i also saw that research in australia but i don t like it, too litlle details, need to make anouncements and even not on humans....

also an indipendent researcher, that checks drugs responses at cellular level before even starting the phase 1 trials for antivirals/cancer drugs (he works for all drug makers) did tell me he was 100% sure il7 wont work on hbv, just a temporary decrease of surface antigen with total rebound at the end of therapy.

 

[lobba123]

Hi lobba,

Sorry no one here has experience with GcMAF and Hep B. As far as modulating the dose, I also see Prof. De Meirleir in Brussels (filfla had the price right--35 EUR per dose or 100ng vial) and he started me on a half dose. I took a half dose the first two weeks (doctors usually prescribe one dose per week) and then a 3/4 dose the third week. Since then I have been taking a full dose--I have had 7 doses.

There are protocols for lowering inflammation if it occurs, although not many seem to find it a problem. Also, the macrophages (both the number and the activity) seem to peak after 3 or 4 days and the "activation symptoms" that some of us are getting also rise and fall in the week after the injection. Generally the day before the next injection I feel fine--which probably means that the activity has "died down."

From this experience, it would seem that if you had too strong a reaction, it would only last for a few days (and you could use a protocol to reduce it) and then you could lower the dose for the next infusion. De Meirleir has suggested going down to a fifth of a dose for a few patients who have had very uncomfortable reactions.

Both Sergio and I have had liver enzymes monitored while on GcMAF and they were completely normal.

Also, re: the price, there are 3 main sources for GcMAF right now and they all charge different amounts. The Israeli/German source (the formulation was licensed by Yamamoto) is $1000 per vial of 100 ng. BGLI in the Netherlands is charging approximately $100 per vial of 100 ng. Prof. De Meirleir has his own source using the price quoted above. I believe you have to be his patient to get it from him.

Best wishes,
Sushi

thank you for ur feed back

sorry i dont get the cost of the full doses right:
the most expensive is germany source, which is 1000euro per dose, so 1000euro per week?

while BGLI is charging 100euro per dose, so 100euros weekly?

do they ship to doctors only or to privates too?

it looks quite easy to control excess of immune reaction/inflammation by stopping or reducingg dose

of course all of this is theorically and worst scenario becuase we do know quite well that when virions are cleared 99% there is no relevant immune attack on liver cells at all from the lucky 30% that clears on interferon-antivirals combo

 

[Sushi]

sorry i dont get the cost of the full doses right:
the most expensive is germany source, which is 1000euro per dose, so 1000euro per week?

while BGLI is charging 100euro per dose, so 100euros weekly?

do they ship to doctors only or to privates too?

Lobba,

You have the prices right. And since you are working with international researchers, when you are considering GcMAF perhaps they could help you evaluate which source would be better for you. Theoretically GcMAF is GcMAF but due to manufacturing techniques, there may be differences that would make one more suitable for you than another.

I don't know about the shipping possibilities with the German source, but I have heard that BGLI will ship to individuals.

Prof. De Meirleir might also be willing to work with your researchers too. He is both and M.D. and a Ph.D. researcher. It is likely though that he would not respond to an individual enquiry from a patient.

Good luck with this and keep us posted on your progress. We all want to learn everything we can about how GcMAF works.

Sushi

 

[lobba123]

Hi all,

Last Tuesday I had my 7th shot of IV GcMAF, and Id like to report on my progress, both physical and test results wise.

I am doing follow-up tests every few weeks as per Prof De Meirleir prescription, to monitor mainly my vit D levels, calcium and phosphorum, although I am also running the typical blood count test.

So far I have three tests done to compare, a first one made 1 month before starting GcMAF (on December the 2th, 2010) I started GcMAF on January the 24th, 2011--, a second one made just after my 2nd injection (on the February the 4th), and the third one after my 5th (on March the 1st ).

Interestingly, my number of leucocytes and of lymphocytes are higher than ever during the last 7 years of disease. Leucocytes (all the blood cells) were at 5.3 (4.5-11.5) on the first test, while lymphocytes were at 1.5 (0.9-5.1). --Note that they were usually a bit low, or on the lowest limit of the normal range, and they improved a bit after starting LDN.

I dont have the measurement of the white blood cells on my second test, but on the last one, after 5 injections of GcMAF, my leucocytes were at 7.3, almost on the average of the normal range, and as I said, higher than ever while on my disease (no idea bout before...)

The same for the lymphocytes count: they were almost at 2.0, and again, I dont remember them so high (although they are still way below the average of the normal range).

As far as Vit. D., and calcium, here is the evolution:

- 1 test: Vit D 1.25 OH (active): 77 (25-66) / Vit D 25-OH (inactive): 24 (30-100)

- 2 test: Vit D 1.25 OH: 65 (25-66) / Vit D 25-OH: 21 (30-100) / Calcium: 98 (88-108)

- 3rd test: Vit D 1.25 OH (Pendent) / Vit D 25-OH: 29.3 (30-100) /Calcium 94 (88-108)

Worth nothing that my liver enzymes, usually high, are better than ever as well. According to Prof. De Meirleir they were a sign of the immune system struggling in the liver, so this must be related.

Worth noting as well that my cholesterol is normal for the first time, although my triglycerides has gone up from a normal value to a bit high value. (It may be related with hypothyroidism).

Conclusion: It seems that on CFS, because of immune activation, we usually have low inactive Vit D and high active vit D. GcMAF can usually raise Vit D, hence the need to monitor it as well as calcium, cause they go up and down together.

It seems that my low inactive Vit D is getting higher (better!), and my high active vit D is getting lower (better too!). Calcium seems to be lowering a bit, what it is also a good sign (calcium is excitotoxic).

On the other hand, it is obvious that my immune system is improving. At least I know that I have a higher total count of white blood cells and a higher number of lymphocytes (the latest are needed in order to cut off Gc protein into the GcMAF molecule, and of course in order to kill infectious cells! ;-).

So, in other words: GcMAF seems to be working according to the basic tests I have right now (Well see the progress of the specific tests in a few months).

What about my physical progress??: Well, you can read about mine and others on this spreadsheet:

https://spreadsheets.google.com/ccc...iV2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0

It is pretty clear now to me, that I am doing more things than before and for more time. Specially going out and doing stuff that requires adrenaline, but not really many tasks at home. I think this is because of my hypothyroidism. Still, this is a fact, and quite noticeable, and I am very glad. I dont feel more energy, but instead, I feel more stamina, what has allowed me to go out to have dinner with friends 4 times in just a few weeks, to do errands, to go to the gym, to attend a conference the same day I had gone to see a video about MCS in the morning, etc.

The other clear change for good that seems to have been established, is the improvement of the HPA axis: I go to sleep in the afternoon, and I only sleep for 1 hour top(not for ever as I usually did).

Still I have a few bed-days weekly, as Sushi reports too.

In conclusion, so far, so good :victory:

Hope this is helpful,
Best,
Sergio

is there an immunological meaning about testing both forms of vit D?or is it just a security check during therapy?

hbv drugs double results when vit D 25oh is >50ng/ml but they never menthion vit d 1.5oh

 

[serg1942]

is there an immunological meaning about testing both forms of vit D?or is it just a security check during therapy?

hbv drugs double results when vit D 25oh is >50ng/ml but they never menthion vit d 1.5oh

Hi Lobba,

The reason for measuring Vit D is that it rises when taking GcMAF, and high Vit D levels are toxic, because is a fat-soluble vitamin. I don't completely know the specifics about the relationship of Vit D and GcMAF, but it has to do with giving more solubility to vit D by adding the Gc protein. And, in turn, because of the relationship of Vit D and calcium, it is advisable also to monitor calcium levels as well, while on GcMAF.

Why .25 or 1.25? Well, vit. D is related with immune activation, so in a state of chronic immune activation (typical of CFS and and of other infectious diseases) is normal that the inactive form is low while the active form is high. This is what I have seen in my case during the past years.

What I am noticing now is that the 0.25 is getting higher and the 1.25 is getting lower, what I guess is a good sign, but not sure why...Probably a more efficient immune response?

Also have no idea which one can cause troubles while on GcMAF... I mean, which one may get too high...This is why I am measuring both!

Hope this help,
Sergio

 

[Rrrr]

Yes, he is prescribing the BGLI product sublingually.

Sushi

cheney is prescribing the bgli product sublingually, but some are taking it via IM and doing well on it. (see lou on our spreadsheet.)

rrrr

 

[Rrrr]

GcMAF SUMMARY

People are getting good results. It is rumored that one Cheney patient feels "cured." Dr. de Meirleir (KDM) in Brussels (Europe's top ME/CFS doctor) is rumored to have treated 150 patients: 80% doing significantly better.

This forum is keeping a list of about 18 patients who have recently started GcMAF. The chart is found here:
https://spreadsheets0.google.com/cc...WzIsbWaN4iN1pWWw&hl=en&authkey=CIH8jqcC#gid=0

Dr. Cheney patients get their GcMAF from BGLI in Holland

This is a suggestion just based on an idea, but perhaps a doctor (your doctor) maybe can email Cheney and ask him for his GcMAF protocol and his patients' results on it...? He is reachable here: http://www.cheneyclinic.com/

BGLI sells GcMAF to individuals after talking to their doctors to review the necessary monthly tests for monitoring patient's progress (Liver/kidney panels, Calcium/PTH and 25-hydroxy vit D and 1-25 dihydroxy Vit-D).

BGLI suggests patients start at 1/5 of one of their vials of GcMAF for the first eight shots.

Bio Group Laboratories, in Holland
www.bgli.nl
+31 35 76 00 176 (GMT+1: 1 pm - 4 pm / 13.00-16.00)
Order via email: contact@bgli.nl
Doctors can email here: professionals@bgli.nl

The other source of GcMAF is to become a patient of KDM. His protocol includes Nexavir (2mL IM injection (1 shot) every day for 8 months, then every other day.)

IRIS CONCERNS
- IRIS: immune reconstitution inflammatory syndrome, a reactivation of latent viruses and an inflammatory response.
Cheney's rumored recommendations for addressing IRIS: H1 and H2 and H3 blockers, such as Benadryl, Allegra, antihistamines, Cortef, Zantac and Pepcid.

Any of the above info may be outdated. Please feel free to correct me.

Rrrr

 

[Chris]

Many thanks again to Sushi and Serg and the others who have been posting their experiences on this thread--it is exciting and gives us all hope! I have one bit of news for us western Canadians: Dr. Jan Venter ( www.f2c2.ca ) has now spent some time with Cheney, and claims access to his protocols, including that for Gc-MAF; I have asked my doc here in Victoria for a referral, which she has agreed to, and so hope in the not too distant future to join here in reporting experience with this stuff. I hope.
Best, Chris

 

[dga5000]

Hi Everyone. Just got my VDR results back from REDLABS.

FOK: Moderate Responder
BSM: Moderate to Low Responder

My brainfog is acute at the moment so I can't read through the thread to find your what this means!! Any feedback welcome. Waiting from XMRV results.

 

[Sushi]

Hi Everyone. Just got my VDR results back from REDLABS.

FOK: Moderate Responder
BSM: Moderate to Low Responder

My brainfog is acute at the moment so I can't read through the thread to find your what this means!! Any feedback welcome. Waiting from XMRV results.

Hi dga5000,

Seems like a lot of us are moderate to low responders from the Redlabs test. There is some question as to whether their assessment of FOK is accurate. It disagrees with another lab and with general statistics. But since you are moderate on FOK you probably have one good alelle from one parent and one poor one from the other. So if it is reversed, it probably wouldn't make any difference.

KDM thinks that BSM is more important and since you are moderate to low, from what we have been hearing from KDM (and what he told me), it would probably take more doses of GcMAF for you but the end result should be the same.

Who is your doctor? Wish you the best with this.

Sushi

 

[Nabo]

I went to himunitas wednesday.
I am still very tired, to go 2,5 hours and then 2,5 hours back is soooo exhausting.

So i will tell my experiences later!
I now have had 12 injections gc maf and nexavir for 4,5 months.

More news, later!

 

[Ronan]

Hi Everyone. Just got my VDR results back from REDLABS.

FOK: Moderate Responder
BSM: Moderate to Low Responder

My brainfog is acute at the moment so I can't read through the thread to find your what this means!! Any feedback welcome. Waiting from XMRV results.

I got the exact same result from KDM and started to see improvement after 12 injections.

 

[greg22]

Hi Lobba,

The reason for measuring Vit D is that it rises when taking GcMAF, and high Vit D levels are toxic, because is a fat-soluble vitamin. I don't completely know the specifics about the relationship of Vit D and GcMAF, but it has to do with giving more solubility to vit D by adding the Gc protein. And, in turn, because of the relationship of Vit D and calcium, it is advisable also to monitor calcium levels as well, while on GcMAF.

Why .25 or 1.25? Well, vit. D is related with immune activation, so in a state of chronic immune activation (typical of CFS and and of other infectious diseases) is normal that the inactive form is low while the active form is high. This is what I have seen in my case during the past years.

What I am noticing now is that the 0.25 is getting higher and the 1.25 is getting lower, what I guess is a good sign, but not sure why...Probably a more efficient immune response?

Also have no idea which one can cause troubles while on GcMAF... I mean, which one may get too high...This is why I am measuring both!

Hope this help,
Sergio

Hi Serg,

Gc protein is also called DBP (D vitamin binding protein).
DBP transports inactive D vitamin (25-OH) into the cell, then the mitochondria converts it
into its active form calcitriol (1,25-Di-OH), finally 1,25 OH binds to the VDR.
Maybe in a first time 25-OH blood concentration decreases being transported into the
cell at a faster rate and then the liver reacts releasing more 25-OH.
Perhaps that is an explanation for D vitamin rising under GcMAF.
I think that your 1,25 OH is decreasing is a good sign.
High 1,25 OH an low 25 OH are a hallmark of auto immune and lyme dissease.
The hypothesis behind that is that L-form bacterias (or biofilms) bind to the vdr prenventing its activation by 1,25 OH, the cell then produces it more and more.
In the mean time the thyroid sends a message to the liver to stop producing 25-OH in order to decrease 1,25 OH level.

 

[froufox]

Hi folks

Thanks for everyones updates and posts. Its great to hear that others are improving and thanks for sharing that really great news Ronan! Its really encouraging to hear what KDM told u. Interesting about the migraines/headaches...I never got migraines but did get a lot of headaches after my first few injections of GcMAF so hopefully that was a good sign!

I'm also off to see KDM on Monday for my 2nd consult so will share any more info that we get from him.

As far as whats been happening with me....after having some quite bad side effects like depression, hangover/toxic feeling etc a few weeks ago, I took a break from the GcMAF for a week and since then have cut back to 1/4 of a dose (KDM advised me to take a 1/5 but it was too fiddly to do that), and I seem to tolerate 1/4 fine with fairly minor side effects and perhaps feeling a little blue at times but no serious depression like before. So up to now Ive done 6 injections at full dose and 2 X 1/4 doses.

Overall, since taking the break and cutting back on the dose I would say that I have definitely been feeling better than since I before I started GcMAF. Like Sergio and Sushi I have noticed that i have more stamina, as opposed to more energy as such and have had a lot of days recently where I feel that I can go about my day without feeling like I'm going to crash all the time and doing daily chores such as cooking, washing up etc arent half as much of a struggle. Some days Ive also found my brain connecting more, and Ive been able to think and analyse things better. Brain function has been very very bad so this feels really significant. Ive generally been feeling much happier too, which I feel is due to lowered inflammation. So I really feel that the GcMAF is doing something positive.

Another thing Ive noticed recently is that I'm sleeping so much better than usual. Even if I miss doing a mag injection for a few days I still seem to sleep quite well eg I feel more relaxed at night rather than wired/tired and wake up feeling much more normal/refreshed in the morning....I have not actually felt like that for years! I am guessing that this is due to lowered inflammation/cytokines due to lowered viral load perhaps. So overall at times recently it really does feel like some significant healing is occurring.

I don't know if these recent improvements are due to me cutting back on the dose and my body is more able to detox whats been stirred up or whether these improvements would have occurred anyway.

I still have a long way to go but do feel hopeful. I am also still quite up and down aswell some days particularly if I go off my diet and eat some sugar....the inflammation, brain fog, mood swings etc all come back big time.

I havent had any test results back yet and need to check vit D this time too so dont know whats happening on that front. I have more or less stopped taking vit D since being on GcMAF after taking about 3000iu a day consistently for about 18months.

I'm still on Hepapressin once a week which I also feel is helping me energywise, neurologically and cognitively too...that seems to kick in 2 days after I do an injection, and feels quite noticeable although the benefits dont last the whole week.

Anyway will report back again soon.

Take care everyone :Retro smile: