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

[garcia]

Hi Garcia,

First, congrats for your initial possible reaction to GcMAF, showed as happiness! This is one of the main things CFS stoles from us...I really hope you continue this way!

Thanks Sergio! I have to say it only lasted 10 minutes though.

I am sure you've posted your genetics tents of times, but it is impossible to find something in this super-humongous forum (and my memory is like a fish's)...Could you mind to remind me/us what your VDR status is?

Well according to Yasko I am BSM +/+ Fok -/-. According to Red labs I am BSM -/- and Fok +/+. However according to my own latest calculations (based on Mindy Kitei's latest blog) I believe I am BSM -/- and Fok -/-, which would make me a "high responder" in both Bsm & Fok to GcMAF. Who to believe? In any case if I remember correctly you and I both have the same genetics no?

Finally, would you mind to explain what do you take Lamotrigine for?

I use it to raise the seizure threshold & balance gaba-glutamate.

Rest well, and luck luck luck!
Sergio

You too! Wish you the best of luck in your upcoming visit.

 

[serg1942]

Hi Garcia,

Yes, we have the same genetics...my memory!

So, could you explain why do you think we are bsm - - and Fok - - according to the data base composed by Mindy? It wasn't what I got from that...

hey! 10 minutes of happiness are very welcome! More over, they can be a very good signal. MLVs may be wrecking the brain, and recently someone posted about possible VIH-infected-macrophages messing up the neurons, so, maybe here there's an explanation, and it might be a good initial signal!

BTW, I was looking for months a substitute of clonazepam for exitotoxicity, cause I was taking too high doses, and no drug worked...But I did not try Lamotrigine...Do they work in similar ways? Have you ever tried clonazepam? If so, do you think Lamotrigine has, for you, some advantage over clonazepam? (Right now I am taking a normal amount of clonazepam, thanks to LDN that helped significantly in lowering excitotoxicity. But it is always good to have an alternative, because I've been taking clnz for more than 3 years, and of course i am developing tolerance).

Best, and looking forward to read your progress (positive I hope!),
Sergio

 

[*GG*]

Hi Citybug,

The first consult with KDM is 70 Euros, the second is 50 Euros. He is almost certain to prescribe extensive lab testing and here is where the cost comes in--and then there is the cost of the medications he prescribes. But his consult's are very reasonable.

Sushi

Yes, that does seem really reasonable for a Drs visit, so 100 Euros is about 73 US dollars, right?

 

[alexk201]

Its the other way around. The dollar is worth less than the Euro.

 

[Tony]

Henk, I don't think we know yet how good the VDR indicators are for using GcMAF as far as xmrv/mlv's go. From what's been posted here it seems that the VDR is an indicator but not the whole concern. According to earlier posts KDM reckons that even "low responders" can still get results from GcMAF, it may just take longer. It's still very early days with GcMAF...
I hope you keep us up to date with whatever answers you get from the doc. Did you test negative to both culture and serology?

Pam, In my very limitied opinion I'm thinking that GcMAF would not be a problem with most? other drugs. I could be completely wrong of course as there's no medical degree on my wall... But if GcMAF acts to stimulate the macrophages to chew up and spit out the viral infected cells then the other drugs should be OK. I'm guessing here and I hope that others who know more will chime in.
I think I remember a part of a Yamamoto paper as saying that GcMAF does no harm in humans, but for interactions you'd need to ask a doc who understands.

 

[froufox]

Hi all

I recently got back from my trip to KDM and still a bit wrecked and recovering from the trip but just wanted to share my experience.

KDM is obviously very busy and the consultation ended up being shorter than I expected...about 15-20 mins (defnitely not more than 20mins). We knew it would be short beforehand from what others had said and it is definitely good to go in prepared with notes about what u want to talk about and be proactive during the consultation. As I had been up since quite early plus tired anyway with the whole trip i was quite braindead so i wasnt able to be as creative with the interview ie think on my feet as much as i could have done otherwise.

Before the consult we had to fill in a symptoms form, but KDM asked more questions about symptoms during the consult and filled out another form so that took up some extra time too.

KDM said that according to my VDR BSM result i would be a "good" responder...I am heterozygous for that one..but i am classed as a moderate responder for the FOK...i asked what the difference was but he didnt really explain why there was a different description on my Redlabs results form (ie the difference between "moderate responder" or "heterozygote"), just said that it was good for the BSM, so that was confusing and i was conscious of the time so there wasnt really enough time to discuss that in detail. But anyway he seemed positive about my potential response. He briefly mentioned the 80% figure of ppl who are doing well, and im pretty sure he said that they were heterozygote too. I guess it is possible that he was lumping the high responders with the medium responders together.

I asked him about Nexavir/Hepapressin. He said he doesnt like adding ingredients to the Nex as he finds that it causes people to have bad reactions. He said Nexavir blocks XMRV into the cells and prevents re-infection of other cells. You inject it daily. I didnt buy Nexavir as its too expensve ($450 per month, for first 3 months). The nurse told me that people do well on the combo but not many ppl can afford it. Im going to continue with Hepapressin for now as its a similar treatment to Nexavir anyway and i seem to tolerate it fine.

He said that in future he believes a combination of treatments will offer the most promising way to deal with xmrv as it is hiding in many tissues so eg GcMAF/Nexavir/ARVs/Ampligen. Though he is not prepared to prescribe ARVs at the moment due to toxicity concerns and will wait for clinical trials.

We talked briefly about methylation...how we start off being genetically susceptible cos of polymorphisms then xmrv makes that that problem worse. Hence why why it is much more complicated to fix the problem, unlike with HIV/AIDS.

For viruses his preferred method of diagnosis is actually stomach biopsy.

I asked about Lamotrigine which i want to try and gave my reasons (to help with HPA axis)...we didnt really have time to discuss it as such but he was willing to write me prescription for that.

I had blood taken for a bunch of tests (mostly immune and infection related) but had to turn down a few cos of the overall cost was too high. Have bought 2 months worth of GcMAF and going back in 2 months for a follow up consult.

I also had a shot of GcMAf and the vit/min IV infusion. I didnt notice any obvious reaction on the day apart from a very mild and brief boost in brain function about 4 hrs later (oh yeah also got a headache and sensations around my head during the infusion)...whether it was the gcmaf or infusion i dont know. I have been sneezing a little more than usual the last few days which i feel is some kind of immune awakening. I have also had a very mild sore throat like Garcia and I dont normally get sore throats at all so i guess that could be related to the GcMAF...but no other obvious reactions, plus i am also still quite tired from the trip and did go off off my diet a bit so that will be affecting things.

I'm sure there is other stuff i was going to say but im still quite braindead and my memory is quite poor but will post again if anything significant comes back to me.

Its a shame that the consult is so short i would have asked him a lot more qs about gcmaf, nexavir, how ppl were responding etc but there just wasnt enough time.

Anyway i hope that is of some help to people.

Good luck Sergio and everyone else who is going over there soon!

 

[bertiedog]

Pam, In my very limitied opinion I'm thinking that GcMAF would not be a problem with most? other drugs. I could be completely wrong of course as there's no medical degree on my wall... But if GcMAF acts to stimulate the macrophages to chew up and spit out the viral infected cells then the other drugs should be OK. I'm guessing here and I hope that others who know more will chime in.
I think I remember a part of a Yamamoto paper as saying that GcMAF does no harm in humans, but for interactions you'd need to ask a doc who understands.

Thanks Tony I need to look into information regarding GcMAF and also I think I will email DeMeirleir cos if it was a negative answer there would be no point in my going over from the UK.

My immune system is very low, I have had a severe throat infection for nearly 4 weeks and had 2 lots of antibiotics now trying to sort it out with lots of herbs so it definitely needs something. I am like this every winter but pick up in the Summer and generally don't get these throats then.

I did ring his office but was told my appointment would be only 10 minutes but I just don't see how this is long enough when I have the complication of having adrenals that don't work plus having Hashimotos thyroid disease.

Pam

 

[garcia]

So, could you explain why do you think we are bsm - - and Fok - - according to the data base composed by Mindy? It wasn't what I got from that...

Hi Sergio, I posted a comment on Mindy's blog here. (ignore the bit when I call her Amy by mistake - brain fog!).

BTW, I was looking for months a substitute of clonazepam for exitotoxicity, cause I was taking too high doses, and no drug worked...But I did not try Lamotrigine...Do they work in similar ways? Have you ever tried clonazepam? If so, do you think Lamotrigine has, for you, some advantage over clonazepam? (Right now I am taking a normal amount of clonazepam, thanks to LDN that helped significantly in lowering excitotoxicity. But it is always good to have an alternative, because I've been taking clnz for more than 3 years, and of course i am developing tolerance).

I take clonazepam too, but only at night time (mainly for sleep). Clonazepam & Lamotrigine are not dissimilar in the sense that they will both help lower excitotoxicity, but obviously they belong to different drug-classes, and have different mechanisms of action, so I would not say they were exact substitutes. More like complements perhaps.

Might be an idea to ask KDM about it at your next visit?

 

[serg1942]

Fruofox and Garcia

Hi Fruofox,

Thanks for your wishes, and for sharing your experience with us! Yes, 15 mins seem way too short for a consult...We'll see...BTW, very interesting his idea about a combo of treatments for the future, and also that he is aware and give importance to methylation issues. Is he prescribing other treatment aside from GcMAF and Nexavir, e.g., supplements, B12, etc? Does he think methylation support may be useful/necessary?

Good luck with the treatment!


Garcia,

Yes, I think bb is the wild type, and we are Bsm - -, but then, what about Fok? According to Yasko I am - -, but according to Redlabs I am "low responder". Why do you think you (and me in turn) are also -- for Fok?

Just to make things a bit more complicated, I think KDM is looking for other genes in relation with GcMAF. Not sure which ones, but think one is Fok2...No idea yet. Maybe is a mistake of one friend who went there the last 12th. I have to talk with him.

Un abrazo,
Sergio

 

[garcia]

what about Fok? According to Yasko I am - -, but according to Redlabs I am "low responder". Why do you think you (and me in turn) are also -- for Fok?

I think we are -/- for Fok because in the chart Mindy posted, the percentages for Wild-type (-/-) are 38.3% and 48.7% for CFS and controls respectively. The percentages for mutation (+/+) are 12.8% and 7.8% for CFS and controls respectively. So Yasko is saying Wild-type is more common than mutation. This corresponds with what I have read in the literature. For example, see this table where the percentage of wild-type (FF) is more common than mutation (ff) for all populations:

http://www.bioline.org.br/showimage?hg/photo/hg03011t2.jpg

Finally for my particular racial group, my likelihood of having mutation ff (+/+) is only 3%, but my likelihood of being wild-type FF (-/-) is 46%. According to red-labs I am ff (3% likelihood). According to Yasko I am FF (46% likelihood). I therefore think for the FOK gene that Yasko is correct, and that redlabs are wrong. That is why I conclude that we are both FF, or "strong responder" genotype for GcMAF.

Just to make things a bit more complicated, I think KDM is looking for other genes in relation with GcMAF. Not sure which ones, but think one is Fok2...No idea yet. Maybe is a mistake of one friend who went there the last 12th. I have to talk with him.

Would love to hear more on this if you find out further info.

 

[froufox]

Hi Sergio,

No problem, I'm glad to share my experience. My impression is that he will wait until test results come back before deciding what supplements to recommend and before putting u on a programme of treatment (apart from the GcMAF, and Nexavir if u wanted to try that too). Yes I got the impression that he does think that methylation is important in the sense that it is one of our "issues" that complicates the illness and but thats all he said (as far as i remember anyway as my memory is a bit poo at the moment!). I didnt ask him specifically about the importance of taking supps to support the methylation cycle, apart from just making the comment that I find particular methylations supps eg MTHF, or taking too much methyl b12 or TMG, SAMe etc make me feel really toxic and inflamed so i cant really tolerate them very much, and then he responded to that by saying that reactions like that are obviously a good way of diagnosing methylation blocks. Ive not had any Yasko testing done so i dont know my specific genetics for that.

Thanks for the good wishes too!

Frou

Hi Fruofox,

Thanks for your wishes, and for sharing your experience with us! Yes, 15 mins seem way too short for a consult...We'll see...BTW, very interesting his idea about a combo of treatments for the future, and also that he is aware and give importance to methylation issues. Is he prescribing other treatment aside from GcMAF and Nexavir, e.g., supplements, B12, etc? Does he think methylation support may be useful/necessary?

Good luck with the treatment!

 

[serg1942]

GARCIA: God hear you! Your conclusions make sense, but then, if you think about it, for us to be - - for both Bsm and Fok, then both Yasko's and Redlabs have to be wrong in the sense we want! haha! i wish they are!

FROU: the spanish guy I have to talk with today if possible, about the other genes KDM presumably studied on him, told me he met you in the clinic.

It is very good KDM knows about methylation and which are the reactions its suplementation may cause...this is one of my biggest problems, that i cannot tolerate methylation support anymore...

Well, thanks both for sharing all this stuff while being still recovering from the travel. It is very welcome.

Best,
Sergio

 

[RivkaRivka]

garcia, frou, ronan and everyone on gcmaf now: please don't hesitate to give us any updates, share any new issues that arise, anything that could give us hints as to what is going on.

i was concerned to hear frou talk about feeling her head during the IVs. if macrophage mobilization impacts the temporal lobes, could the feelings in frou's head be related to that?

anyway, i am also concerned with how to get GcMAF to those of us not in europe.

lou got it shipped to him to his home in the US. can we hear an update on that, lou? how are you doing with it? any good or bad results yet? how many shots total did you buy, and how long is it good for?

 

[RivkaRivka]

can we get a list of who is now on GcMAF? and when they started. 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 (no response, but it was only a limited trial of a pre-curser of GcMAF)

== Now ==
Canasado, source unknown, Fall 2010
Overstressed: Oct 2010??
CindyWilliams: Dr. Sharp, Nov 2010??
Nabo: Dec 2010
Lou: direct fr BGLI, Jan 2010
Ronan: KDM, Dec 2010
Garcia: KMD, Jan 2011
Froufox: KDM, Jan 2011

== soon ==
Sergio: KDM, Jan 2011
Sushi: KDM, Jan 2011
Vli: KDM, Jan 2011

 

[RivkaRivka]

"I don't know the Israeli site. Dr. Cheney is getting it from BGLI in the Netherlands: http://www.bgli.nl/ There is some question though as to whether it will get through US customs if it is not shipped to a doctor's office."

Is this really true?? It's amazing..there are a lot of patients from the Netherlands that need to travel a long way to get the gc maf injections in Brussels and Dr. Cheney uses gc maf from the Netherlands?

noting what Alexia wrote above, my question is this: can a doctor have it shipped to his/her office if it is getting stopped at customs?

 

[Sushi]

Thanks Garcia,

For all that you have posted--despite the time needed for recovery from the trip.

I'm going to bug you with some questions--sorry! I don't have Yasko results to compare, but my Redlabs is FOK1 = low responder; BSM1 = moderate to low responder. I am American Caucasion (which is a smaller sample and is probably influenced by what my European ancestry is--Germanic, British) so the statistical likelihoods of being truly ff (+ +) is not so clear.

From looking at Mindy's comments and your own analysis, what would be your best guess on my "real" results? I am truly hoping RedLabs is wrong.

Also, did you attempt to discover the "source" of KDM's GcMAF? Could it be Israel? And is he going to ship you more when you run out, or are you going to get it at the next appointment? Will you continue with it IV or IM?

And, if there are questions that you didn't get a chance to ask, maybe the 3 of us seeing him on the 24th could fit them in--instead of asking the same questions you might have asked. Looking back at your appointment, are there things you wished you could have gone into more deeply? Sergio and I are combining appointments to try not to duplicate questions as we are both on the same protocols, have similar lab results etc.--and my English will hopefully be operational even with jet lag!

Did you decide whether to do Nexavir?

Lots of questions--sorry--I know it isn't your best time for answering, but we are all trying to get as much knowledge as we can and optimize our very short consult time.

Best wishes on this adventure!
Sushi

 

[RivkaRivka]

great questions, sushi. thanks in advance for answering the ones you can, garcia (or froufox).

 

[leela]

This is such a great thread. Thanks to all who are contributing.

 

[froufox]

Hi Sergio,

I think that guy must have been talking about another woman he met as i didnt speak to anyone else at the clinic apart from the people i was with...unless i was so out of it i have completely forgotten! I'm sorry that u cannot tolerate the methylation supps either, i hope that situation changes for the better for the both of us.

Hi Rivka, im not sure that the head symptoms were down to the GcMAF but i guess i will have a better idea when i do my next injection next week as i am at home now and wont be having any IV at the same time. It is definitely very interesting about the possible impact on the temporal lobes though! I will do more research into that.

Also just to add that I definitely had more energy today and was quite a bit more physically active than usual this morning, eg i did some shopping and laundry aswell as post twice here on this thread.... normally i would not be able to do as much as all of that in the space of one morning, especially considering the effort it took to do the Belgium trip this week. Also my head felt less inflamed today. So i thought that was very interesting although obviously it is too early days to be able to properly evaluate what is happening. However I am feeling very very tired now, physically and mentally. Anyway will update when i can.

Best wishes to everyone.

 

[safari]

noting what Alexia wrote above, my question is this: can a doctor have it shipped to his/her office if it is getting stopped at customs?

Cheney has had GcMAF shipped directly to him which he used for testing purposes in his clinic, but according to him they can't ship it to him to give to patients to take home. Since the drug is illegal in the US, he would be "dealing in illegal drugs" and could lose his license.