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

[Cort]

Nervous system problems cause reduced motility. Does he say how often he sees this? I know one person who has greatly increased motility perhaps because of vagus nerve dysfunction. '

I love the serotonin connection in the brain and the gut..

- I told him about my chronic hand tremors and chest pressure, that appeared 4 years ago after a few months on DMPS IVs chelation infusions for Hg poisoning. He explained (and I think it does make sense) that probably it was linked to my lack of motility: My chronic dysbiosis prevents my good bacteria in the gut from synthesizing serotonin (I think lack of Bh4 due to low methylation capacity is another factor). Lack of serotonin produces low motility (I can confirm this because years ago my digestion improved overnight from taking serotonin reuptake inhibitors), and low serotonin flux to the brain accounts for my messed up nervous system (I think excitotxicity is also a factornot sure how serotonin is involved with this). Also, my low serotonin would explain my reversed sleep cycle.

Its amazing the many different processes these drugs effect...Are you still taking this?

(I can confirm this because years ago my digestion improved overnight from taking serotonin reuptake inhibitors),

 

[vli]

Dunno if this helps but KDM said he would put me back on an SSRI somewhere along the line. He thinks that they didn't work for me before (for whatever effect) because there was so little serotonin in my body for the drug to inhibit the re-uptake of.

 

[undcvr]

Vli did you ever try taking Tryptophan directly ? I used to take it a long time for awhile. About 4gm before bed. It helped alot in my moods, cravings, etc. It made me feel very relaxed the next day too. Tryptophan is typically deficient in our diets.

Dunno if this helps but KDM said he would put me back on an SSRI somewhere along the line. He thinks that they didn't work for me before (for whatever effect) because there was so little serotonin in my body for the drug to inhibit the re-uptake of.

 

[undcvr]

- I brought to him my picture of “before and after LDN”, where it is obvious my physical change. I also explained my great improvement on LDN and how I consider LDN my mainstay health-wise. The first thing he said was: “LDN is bad”. Then I couldn’t be more discouraged! I did not want to stop it for anything in the world…Then he went on to explain that LDN down regulates your immune system an this is why we feel better.
[/COLOR]

Serg, I dont think it is a bad thing that LDN down regulates your immune system. If your immune system is over-reacting it just is and if LDN helps with it then it just does. If it down regulates the immune system and brings it back to equilibrium, that is a far better state than an autoimmune reaction happening every now and then and auto-immune conditions are a fact. With the amount of disregulation and disfunction this disease causes there are many parts of our body that we need to retrain just to find some kind of normalcy, even if it takes years.

 

[aquariusgirl]

Crap, now I don't know what about LDN.

 

[Riley]

The bottom line about LDN is that no one really knows the full extent of what it is doing or how it works. For what it's worth LDN made me much, much, much worse, and I have not recovered any ground since stopping it.

Interesting about advising against the BGLI GcMAF. I wish there was more detail on this. Isn't BGLI the only option for those of us that live in the states?

 

[anncavan]

I am confused this completely contradicts what Mikovits said in her recent San Rosa talk. She said that unless you are seriously ill you may not test positive for XMRV even if you do have the virus. In fact the group that tested positive for XMRV the most were the ones that were most seriously ill. Is the referring to tests that only detect antibodies to XMRV ?

I was at the Santa Rosa talk. What I wrote down, and remember quite clearly due to my own personal results of serology negative/culture positive was that the sickest patients were coming up negative in serology. This was because they were so ill their body wasn't producing antibodies. Therefore, this would make Sergio's comments make sense regarding our B cells being too affected to produce antibodies.

I wrote a review about this presentation, including that tidbit. If you haven't seen it, you can find the 2-parter with slides here: http://lannieinthelymelight.blogspot.com/2011/01/part-1-11711-xmrv-presentation-by-dr.html

And just a general comment. This string is AMAZING! There are a so many committed, caring people on this - gathering information, sharing experiences, organizing the learnings for all to use. THANK YOU, THANK YOU, THANK YOU!

 

[undcvr]

Oops my bad, got to go back and look up that site.Thanks for pointing this out Ann, but didnt she detect the virus from other testing methods besides looking for antibodies ?

So the sickest patients will not test positive for the virus, KDM thinks that it is becos they hide and Mikovits, at least according to tests that detects antibodies anyway, thinks it is becos they just cannot produce any antibodies to it.

I am sure that I did read some where of a doctor's opinion that if you are not that sick you wont test + for it. That was what put me off paying for the test at VIPix in the first place.

 

[leela]

She also said at the talk something about if the antibody is bound to the env protein, it is not detectable. My notes are not clear,
but I believe this is what was said.

 

[mojoey]

I've been away for longer than usual from this forum because of the new group, but I just wanted to say thank you to Vli, Serg, Froufox, and Sushi for all the thorough information. We are learning so much aren't we??

I don't know what to make of the LDn statement either. What does KDM think Nexavir does exactly?

I also don't know what to make of KDM's statement that his formula is wholly human. How in the world is he able to get the cost down so much then? Yamamoto's isn't expensive because it's a ferrari...it's expensive because it costs several hundred euros to produce. It just doesn't make sense that it could be the same exact formula.

And KDM saying the other product made in NL can be dangerous? I'll plead the fifth because I've voiced my opinion ad nauseum about this in the past.

I'm wondering if anyone has (or can) ask him about the combination of chemo drugs with gcmaf to kill off latent reservoirs. This seems like a sensible, albeit dangerous, approach to me. Perhaps following chemo immediately with gcmaf umbilical cord stem cells?

Cansado---that is so encouraging that you are XMRV- now, although I"m sorry you're not feeling too much better.

Thanks again to the pioneers..you are doing us such a great service and I am (again) truly grateful.

 

[RivkaRivka]

FOLKS, IS THERE ANOTHER WAY TO DO THIS? is there another way to keep a chart of a list of who is on gcmaf and how they are doing? can someone make a website we can just link to here, a website that has a chart with who is on gcmaf, level of severity, etc (see all the questions below). i don't think i can keep up on updating this list, so we need another solution for this "Patient-Organized, Informal-Yet-Important Clinical Trial" -- Rivka

UPDATED LIST (Jan 31, 2011)

can we get a list of
- who is now on GcMAF
- level of severity of ME/CFS
- length of time sick with ME/CFS
- when they started GcMAF
- their source of GcMAF
- their VDR results
- if they are having any good or bad effects from the GcMAF
- NEW QUESTION: are you on Nexavir and Artesunate, too?

if you send me the names, i'll keep adding them to this list. or you can cut and paste the list and add it yrself to yr own post.

== Past ==
Joey (Undisclosed source. No response from GcMFA, but it was only a limited trial of a pre-curser of GcMAF)

== Now ==
1. Cansado
KDM, Fall 2010. No good responses. (Was on abx at the same time as GcMAF)

2. Overstressed
Moderate ME/CFS. Ill 3 yrs. Started May 2010, FOK Low responder, BSM moderate to low responder. No signficant response to GcMAF.

3. lili85
Increasingly ill for 5-6 years, positive for XMRV & MLV related virus. KDM, started Nov 2010. VDR: FOK high responder, BSM moderate or low responder (Redlab). Good effects so far (9 weeks into the treatment).

4. CindyWilliams
Dr. Sharp, Nov 2010??

5. Nabo
Severe ME/CFS (only sitting and bedridden). Ill 2.5 yrs. Started GcMAF with KDM at end of Dec 2010. VDR results: Only know that i am high responder. No effects yet.

6. Ronan
KDM, Dec 2010

7. Lou
Sick 20+ yrs. Got GcMAF direct fr BGLI, thru his doctor. Started GcMAF and artesunate Jan 2011. Good response regarding his chemical sensitivities.

8. Garcia
KMD, Jan 2011

9. Froufox
Ill for 18yrs, moderate/severe. Started GcMAF 11th Jan 2011. Source of GcMAF - KDM. VDR: FOK1 - moderate responder, BSM1 - Heterozygote. Effects so far - increased depression, lots of headaches, lethargy, light sensitivity, inflammation in sinuses. Possibly some mild good effects at times eg extra energy, less inflammation in head.

10. Tormenta
KDM. Started GcMAF on Jan 2011. FOK Low responder, BSM moderate to low responder (test done at redlab).
I am ill from January 2010, an infection very hard in the bronchi. can not work. many analytical ones and find WEB, HHV7 and clostridium, negative XMRV for PCR and I am in delay for the culture, my father malignant tumor of prostate.
November and December Suplements methylation therapy helped a little. Not on Nexavir and Artesunate. Taking GcMAF in an IV. Great response!

11. Sergio: KDM, Jan 26, 2011

12. Sushi: KDM, Jan 26, 2011

13. Vli: KDM, Jan 26, 2011

14. Filfla: KDM, Jan 2011, VDR Moderate responder/High responder

 

[leela]

This seems perfect for the patient data and repository section, but it doesn't seem to be working right now...

 

[undcvr]

Maybe Cort has a way of keeping the list on PR ?

 

[RivkaRivka]

Hi everybody,

First, thanks to all of you for your support!!!

Sushi and Vli told you already many of the things we learned from KDM’s visit. I am warned out right now, but still would like to add a few more things that came to my mind while catching up with this thread:

- MY conclusion about what KDM told us, is that KDM’s GcMAF is Yamamoto’s formula. (Read Sushi’s first post on our KDM’s visit).

- I told him about my chronic hand tremors and chest pressure, that appeared 4 years ago after a few months on DMPS IVs chelation infusions for Hg poisoning. He explained (and I think it does make sense) that probably it was linked to my lack of motility: My chronic dysbiosis prevents my “good bacteria” in the gut from synthesizing serotonin (I think lack of Bh4 due to low methylation capacity is another factor). Lack of serotonin produces low motility (I can confirm this because years ago my digestion improved overnight from taking serotonin reuptake inhibitors), and low serotonin flux to the brain accounts for my “messed up” nervous system (I think excitotxicity is also a factor—not sure how serotonin is involved with this). Also, my low serotonin would explain my reversed sleep cycle.

- From some persons (that I do consider reliable sources), we were warned about the possible danger of BGLI’s GcMAF. I really recommend all of you living in the USA not to take BGLI for the moment, until more data is available.

- Prof KDM made very clear that he is more a researcher than a clinician (physician?) , and so, we should adapt to his way of working with patients, i.e. we cannot expect from him what we could expect from a typical doctor. I think it is good to have this into account.

- He told us he is not treating XMRV with GcMAF. He is just “supporting our bodies”, but future studies are need to be done in order to know whether GcMAF actually is a treatment for XMRV. In this regard, he told us they are preparing double-blind placebo-controlled trials with GcMAF, with a few hundred of patients. My impression is that he is collecting data with the pioneers on GcMAF, in order to choose a proper cohort that ensure a positive outcome from the trial (and I am very glad of being his guinea pig, of course

- He told us they had already figure out many things about the behavior of XMRV that he could not share with us, until the ongoing studies are published (I believe he said within 10 months). He said XMRV was not as dependent on hormones as we think, but not sure if he referred just to some of them, or all of them…Anyway, I liked his confidence in the ongoing research and on his "top secret" knowledge...

- I asked: “OK, technically, we are not treating XMRV with GcMAF, but, is it possible by taking GcMAF to turn off the virus and therefore reach a significant improvement”, and he said: “YES”.

- I brought to him my picture of “before and after LDN”, where it is obvious my physical change. I also explained my great improvement on LDN and how I consider LDN my mainstay health-wise. The first thing he said was: “LDN is bad”. Then I couldn’t be more discouraged! I did not want to stop it for anything in the world…Then he went on to explain that LDN down regulates your immune system an this is why we feel better. He then (maybe realizing of my face of ??&%$%), explained that, the real problem with LDN was that nobody knew what it was doing…that there are a lot of endorphin receptors, interactions, etc, and that it was impossible to know its target…Anyway, he finally told us it was fine to continue it, and that we will get back to this issue in the future.

- He seems pretty confident about reliability of VDR testing at RED labs. I did not want to expend time on this. He said Bsm mutation was more important than Fok when it comes to GcMAF response prediction.

- I think this is it as for now…If something else comes to my mind I’ll let you know. Of course as far as GcMAF, as Sushi wrote, I was injected with half dose of a vial, and I cannot tell if I felt something from it, because I was too tired to tell…If anything, I felt more fatigued and a slight unusual headache for half an hour the next morning. I also felt less appetite than usual. This was actually noticeable…(let’s say my appetite is zero out of ten. That day it was -5, out of ten…

- Upps! Last thing: he wants me to do a stomach biopsy to look for other viruses than XMRV (for which I am positive by culture).

-Ah! He said something we already know, but I think it’s worth reminding: XMRV is more difficult to find in sicker people than in less sick patients. He also said that if culture were positive and serology were negative (Sushi’s and my case), provided that the serology test is correct (he said it was still unreliable), this means that your B cells are too affected to produce antibodies, meaning that the infection is more spread.

- And finally, we can confirm that when he is not finding XMRV, he looks for it in stomach biopsies (How often does he do this, or what's the percentage of positives found on CFS, I don't know)

Best,
GcMAFFED Sergio :victory::victory::victory::victory::victory::victory::victory::victory::victory::victory:

PS- As far as methylation support, it was my impression that he is not really considering it as an important factor. It is my bet that if he is observing success with GcMAF plus Nexavir, plus Abx if needed, etc., if we add to this combo the methylation support, the success will rise significantly...

Sergio and Sushi,

Did KDM prescribe Nexavir and Artesunate to you, too? If so, how much? THANK YOU for your reports!

 

[RivkaRivka]

joey,

regarding you pleading the 5th: can you tell us yr opinion of BGLI, please.

I've been away for longer than usual from this forum because of the new group, but I just wanted to say thank you to Vli, Serg, Froufox, and Sushi for all the thorough information. We are learning so much aren't we??

I don't know what to make of the LDn statement either. What does KDM think Nexavir does exactly?

I also don't know what to make of KDM's statement that his formula is wholly human. How in the world is he able to get the cost down so much then? Yamamoto's isn't expensive because it's a ferrari...it's expensive because it costs several hundred euros to produce. It just doesn't make sense that it could be the same exact formula.

And KDM saying the other product made in NL can be dangerous? I'll plead the fifth because I've voiced my opinion ad nauseum about this in the past.

I'm wondering if anyone has (or can) ask him about the combination of chemo drugs with gcmaf to kill off latent reservoirs. This seems like a sensible, albeit dangerous, approach to me. Perhaps following chemo immediately with gcmaf umbilical cord stem cells?

Cansado---that is so encouraging that you are XMRV- now, although I"m sorry you're not feeling too much better.

Thanks again to the pioneers..you are doing us such a great service and I am (again) truly grateful.

 

[citybug]

And Cansado, do you take a little nexavir every day, and how do you take the artesunate (pill or swish full cap?) Thanks.

And is there any requirement for vit D to start out with? I assume the calcium is just a regular blood panel.

 

[mojoey]

I set up a viewable (only to anyone that sees this link) and publicly editable spreadsheet :

https://spreadsheets1.google.com/ccc?authkey=CIH8jqcC&hl=en&key=tZNXEKNWzIsbWaN4iN1pWWw&hl=en&authkey=CIH8jqcC#gid=0

Since it is publicly editable, I can back it up once a day.

How does that sound?

 

[RivkaRivka]

I set up a viewable (only to anyone that sees this link) and publicly editable spreadsheet :

https://spreadsheets1.google.com/ccc?authkey=CIH8jqcC&hl=en&key=tZNXEKNWzIsbWaN4iN1pWWw&hl=en&authkey=CIH8jqcC#gid=0

Since it is publicly editable, I can back it up once a day.

How does that sound?

joey to the rescue! thanks!!!!!

can you add these questions, too:

- how are you taking the GcMAF (IV, IM, sublingual)
- are you also on Nexavir, Cell Signaling Factors (Cheney's Nexavir alternative) and Artesunate, too?

 

[tormenta]

sushi, sergio, cansado, VLI, and fifla, Hope you are all recovering from the trip now. It'll be very interesting to compare all of our experiences of GcMAF. I hope that soon they begin to feel positive changes with Gcmaf.
Hello froufox

I am personally not doing too great at the moment but i think that is partly due to diet relapse....could also be due to GcMAF too i guess. Without having any test results back yet I also believe that my coinfections are out of control and that I suspect that i will also very likely need to be on abx alongside the GcMAF.

I begin the treatment of Gcmaf (for 10 weeks), next to doxiciclina 100 mgs twice to the day (for 20 days). I do not have the approval of KDM to use the doxicilina next to Gcmaf, but I initiate days before than Gcmaf and want to close the cycle.

I have always thought that along with my chronic fatigue there is some coinfection of lyme or micoplasma, but analyses PCR, say that no (I want to send a blood sample to the laboratories igenex to have security). if Gcmaf can recovery to my immunological system I I want to help a little with the coinfections.

Sorry RivkaRivka,

- level of severity of ME/CFS
- length of time sick with ME/CFS
I am ill from January 2010, an infection very hard in the bronchi, - better worse to September. September and October in bed - sofa very badly, many symptoms brain, intestine, dream, lung, several OI, fatigue. I can not work. many analytical ones and find WEB, HHV7 and clostridium, negative XMRV for PCR and I am in delay for the culture, my father malignant tumor of prostate.
November and December Suplements methylation therapy helped a little.

- if they are having any good or bad effects from the GcMAF
my recovery is very good, all people near my thinks equal, I feel that I am in the way to take off.

- NEW QUESTION: are you on Nexavir and Artesunate, too?
not at the moment

- how are you taking the GcMAF (IV, IM, sublingual)
IV

a greeting to all.

 

[froufox]

Thanks Sushi and Sergio its great that u managed to get such a lot of good info out of KDM!

The thing about the BSM being more important than FOK...he implied that during my interview too (even tho both of mine are heterozygote)...perhaps the reason he believes this is because RedLabs have got the BSM right as it correctly corresponds to peoples response? But as Garcia has pointed out in his analysis they are likely to be wrong for the FOK??

Thats interesting about the LDN but at least he says that u can carry on taking it for now i guess. I tried it a few times but unfortunately my gut seemed to overreact to it every time and i ended up losing too much weight so had to stop.

I wonder if KDM's GcMAF is much cheaper than Yamamoto's because he's treating so many people now that he gets it at a reduced price???

I just wanted to ask all of those who have already started treating themselves with GcMAF at home. I noticed that when i did my last injection this week, the amount of GcMAF in the vial was 1/4 less than the previous week - only 0.75mls as opposed to 1ml. They were both stored in exactly the same way, first in the fridge but then when i heard freezer was best i put all my vials in the freezer. I dont know whether the problem was due to me defrosting the second one for a slightly longer time but i really cant see that making much of a difference. Joey am i right in saying that u said once that the GcMAF u tried evaporated too?? Anyway i will email the clinic tomorrow and see what they say but just wondered if anyone else had noticed the same thing?

Hi Tormenta, thats great that u are feeling a lot better! Do u feel better from the doxy too? Good luck with your continued treatment. I already tested positive to some of the lyme coinfections a few yrs ago (bartonella and ehrlichia) so even tho i tested negative to lyme, which is obviously quite a common occurence with a lot of ppl, my doctor clinically diagnosed me with lyme because of the coinfections. I tried doxy at the time for a few months which did help, but other abx made me much worse(eg the cyst busters/imidazoles) so i stopped abx completely and then i went on to try a number of alternative treatments. Anyway have been retested for coinfections again with KDM.

Thanks for putting together the spreadsheet Joey!