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

[vli]

Hi Ronan, thanks so much for this! So if you don't mind could you please tell us: are you saying it WASN'T a problem for you to bring home because he packed it for you with dry ice or whatever, but you can't imagine it being packed/kept cool the same way if it's put in the post?

 

[RivkaRivka]

thanks, diesel!

the big question is HOW to get the GcMAF from KDM if you are not his patient.

 

[aquariusgirl]

xmrv and gcmaf

wonder why he only gives gcmaf if you're xmrv+.. i mean wldn't it help if you had reactivated ebv, hhv6, enterovirus or whatever?

 

[guest]

wonder why he only gives gcmaf if you're xmrv+.. i mean wldn't it help if you had reactivated ebv, hhv6, enterovirus or whatever?

I think it has more to do with the Nagalase activity. If Nagalase activity is normal, GcMAF probably won't help that much.

 

[Ronan]

A few people asked me to update them after my KDM visit so i sent them all a PM with the following:

Just had my appointment with De Meirleir. Unfortunately my VDR Genotyping result means i'm not a good contendere for GcMAF. He said he would try me on it anyway for 8 weeks to see if it works as even some patients that didnt match up well for it after VDR Genotyping are doing well on it. He did say however that he is having very good success with patients it is ideal for with full recoveries after 20 weeks in alot of cases. Luckily i can do the GcMAF injections with my doctor in Ireland once a week. It has to be kept frozen though so i dont know about transporting it to the US. I also have to take daily Nexavir injections with it (i took this before, its an antiviral) and Artesunate. If after 8 weeks its not doing anything for me he will put me on Anti Retrovirals. He said its best to try the GcMAF first as it is the least toxic option. He hasnt started using retrovirials but will be very soon on the patients that dont respond well to GcMAF. He mentioned that 3 retrovirals had shown to work against XMRV in vitro... AZT, Tenofovir and one other but i dont know the name. He said you have to take 2 together in case you become resistant to one of them. He said i would not have to take the AZT one as it has the worst side effects. He said with GcMAF that there are very few side effects... only about 20% of patients have any side effects at all. The other patients have no side effects and show a gradual improvement without any big dips with it.

He will also be using Ampligen but he doesnt know when he will be able to start with it... maybe 6 months. He also said it was not true that people who test negative by Serology will not do well on Ampligen. Also, i am being retested in a Swedish lab who are using a new Serology test. He said he thinks there are problems with the current one.

I'm disappointed about the VDR results but i'll give it 8 weeks anyway and see how i do. Not too keen on Retrovirals but i'll try them out if needed. The GcMAF was about 350 for the 8 weeks, the Naxavir is 150 every 10 days so is expensive! The Artesunate is fairly cheap if i remember correctly, maybe 25 a month or something like that.

I brought it home myself just in a plastic bag with and ice bag inside. They said it would be ok like this for the 5 hours i would be travelling but much more and it would be a problem. I didnt have any side effects from the injection. Have a bit of a headache since early this evening but i get headaches from time to time so dont know if it has anything to do with the GcMAF yet... probably not.

 

[filfla4]

Thanks for this info Ronan - very helpful for me. As I mentioned, I saw KDM last week but I don't have my blood results yet. However he already mentioned GcMaf with me and I since I don't live in Belgium I was anxious how this could work out.

 

[Ronan]

Does anyone know about what percentage of people are a good match for the GcMAF based on the VDR Genotyping? Seems to be alot of people that didnt match up well for it.

 

[cansado]

Well where are all those patients then who are doing very well on GcMaf? I haven't met anyone as of yet, and heard only of one. Now I know that there havent been a lot of patients who have been taking the GcMaf for a long time.
By the way, I have heard from the nurse that there are quite a few patients with side effects. The side effects are not as bad as with the ARV's however keep an open mind... Maybe it helps to be on a histamine free diet.
Do you get them intravenous?
Good luck !

 

[Navid]

Well where are all those patients then who are doing very well on GcMaf? I haven't met anyone as of yet, and heard only of one. Now I know that there havent been a lot of patients who have been taking the GcMaf for a long time.
Do you get them intravenous?
Good luck !

great question....it seems to me we hear this abt oh soo many treatments....everyone who is on it is great, recovering successfully, etc...but you never hear it from the actual patients.

then when ppl do start to get access to the treatment the real reports start coming in....oh it makes me feel a tinge better, i can now walk to my mailbox, etc......


i surely do hope gc-maf treatment is helping ppl recover but it 's far from certain at this point.

 

[serg1942]

To RONAN

Hi Ronan,

Thank you SO MUCH for your report! For me it's no very encouraging, as I don't think I have a good genetic combination either. Could I ask you what is your exact result of the VDR genetic test?

I was yesterday in Dr. De Meirleir's clinic (I flew from Spain and came back the same day), to have my blood drown for the basic tests KDM usually prescribes, in order to have their results at the end of January when I have my first appointment with him.

They confirmed what other guys have said, i.e, they send the necessary drugs (GcMAF, Nexavir...) from Brussels to your country, and they arrange the needed customs papers, etc...

They also told me that you are injected with GcMAF the same day, there...

I wish you very good lack with GcMAF or with whatever other treatment that may suit you better...

Saluditos,
Sergio

 

[cansado]

Sergio,
Where you the tall guy with the dark hair?
I was there between 10-11AM and getting an IV. I was not very happy b/c it was too early for me!! : ))))
Have a nice evening.

 

[froufox]

Hi Everyone

Ive been following this thread with interest as I have an appointment with KDM in early January mainly because I want to try GcMAF. I had my VDR test done a while ago but have only just got my results back from Redlabs today. Unfortunately they have not explained the results very well but hopefully I will get more feedback from the lab on Monday.

My result for BSM1 was Heterozygote, so Bb, which according to the Ruggiero paper, combined with Ff implies that i'm in the the middle group which has some response to GcMAF.

For FOK1 they just say "Moderate responder" so it doesnt tell me what my specific genotype is which is a bit frustrating but I'm wondering though at what they mean by moderate responder is again specifically in relation to GcMAF, and if that means that my result is Ff?

In which case it sounds like I may be Bb/Ff, which i guess is the least I can hope for. Strange though how one is described as heterozygote and the other isnt specified. I'm wondering if that means the FOK result is more significant than the BSM? Anyway its a bit confusing but hope to find out more on Monday!

Hi Ronan, thanks for sharing all the info that u got from KDM, its really interesting and its also very encouraging to know that people are responding to the GcMAF! It will be interesting to see how significant the VDR results turn out to be. I hope that you also benefit from the therapy so good luck with it!

Hi Sergio, thanx for that info too! Very useful. Did u not have the genotype that is supposed to respond the most to the GcMAF? Or maybe i got it wrong?

Take care everyone.

 

[garcia]

Hi Sergio, thanx for that info too! Very useful. Did u not have the genotype that is supposed to respond the most to the GcMAF? Or maybe i got it wrong?

Sorry Frou, I got it wrong earlier. Just looked back and Sergio is BSM ++ (from Yasko), which corresponds to BB. The ideal is bbFF.

 

[mojoey]

Great stuff. Seems like the people are coming out of the woodworks to see KDM, so we'll be getting a clearer picture soon. Maybe. It also seems like KDM is feeding the same spiel about his gcmaf that he's been feeding since day 1, which I find very disconcerting to say the least now that he has a ton more data.

I've been trying to bite my tongue but "full recoveries after 20 weeks in alot of cases" is pushing the boundaries of salesmanship. I just hope people go in there with an open yet skeptical mind and realize KDM has a monopoly on data and is doing with "his" gcmaf what Cheney does with "his" CSFs. Hence there is no way for an independent researcher or physician to investigate his claims. Cheney initially reported that stem cells were the best thing since...diluted bottles of CSFs. It took more than a year and a few dozen more patients to dampen the hype and paint a realistic picture. From the sounds of it, it will likely take the same kind of slow, organic process for the real story to flesh out.

I am as hopeful as anyone about gcmaf. I want this to be "it" but I've heard very mixed responses from patients already on it.

 

[Navid]

Great stuff. Seems like the people are coming out of the woodworks to see KDM, so we'll be getting a clearer picture soon. Maybe. It also seems like KDM is feeding the same spiel about his gcmaf that he's been feeding since day 1, which I find very disconcerting to say the least now that he has a ton more data.

I've been trying to bite my tongue but "full recoveries after 20 weeks in alot of cases" is pushing the boundaries of salesmanship. I just hope people go in there with an open yet skeptical mind and realize KDM has a monopoly on data and is doing with "his" gcmaf what Cheney does with "his" CSFs. Hence there is no way for an independent researcher or patient to investigate his claims. Cheney initially reported that stem cells were the best thing since...diluted bottles of CSFs. It took more than a year and a few dozen more patients to dampen the hype and paint a realistic picture.

you are right on the nose joey.....hope for a different outcome this time.

sorry but it's also what happen w/mike dessin's recovery. great hope on the horizon, that did not prove to bring cures to many, if any. sorry i know u like the doc, but this mystery treatment stuff that brings abt recoveries for all, often turn out to be not quite so great. this also happen w/montoya and valcyte.

that's why my hope and money is on the scientists now...mikovits, the ruscetti's, lombardi, singh, alter, lo, lipkin, levy, conant etc...unlocking what is really causing our symptoms and providing a treatment that is scientifically proven to work.

i personally am tired of spending all my family's money on these treatments that never bring me any relief.


once again, let me stress i am hopeful abt gc-maf and grateful to the patients trying it. i hope you all improve immensely and this is really a treatment that works. please do keep us posted : )

but i'm not going to take kdm or cheney's word for it. i want to hear it from lots of recovered patients : )

 

[froufox]

Sorry Frou, I got it wrong earlier. Just looked back and Sergio is BSM ++ (from Yasko), which corresponds to BB. The ideal is bbFF.

Ok thanx Gar! Sorry Sergio.

I totally agree with your points Joey. Its natural to feel hopeful but I agree its important to remain skeptical until there is more evidence from other sources/patients. As is the case with most other therapies the truth will end up being somewhere in the middle. We'll just have to wait and see. But I'm definitely not expecting a miracle cure.

 

[Sushi]

Thanks Everyone!

I am another one following all these patient reports with great interest as I have an appointment at the end of January.

I think Ronan's question may be critical: what percentage of patients do have the genotype bbFF. So far no one has reported having it. It may be true that De Meireir is getting "very good results" giving GcMAF to patients with this genotype--but, there may be very few patients who have this version of the VDR.

Has anyone seen statistics giving the prevalence of the different genotypes? I may go into the spreadsheet of Yasko patients who have done genotyping and see if I can figure anything out there.

Also, so far I'd guess, most of De Meirleir's patients are not going to be English speaking. So, I found a Dutch forum where some of them are posting. If you use Google Chrome, it will automatically translate each page--very badly! http://www.mecvs.net/Forum.html

From what I am getting there, XMRV results are just starting to roll into Europe and those who have started GcMAF are traveling to the clinic to get the first 10 infusions by IV. Evidently, he sends patients "from afar" home with frozen GcMAF to take by injection.

All said, we've heard that patients with the "right" genotypes do well, some patients with the "wrong" genotypes respond to a degree, but no statistics. It is good to know that KDM is going to try ARV's on "non-responders."

Let's all keep sharing info--it is hard to get from the "source!"

Best wishes everyone,
Sushi

 

[serg1942]

Hola Cansado,

I don't think so, because I was there from 12:50 to 13:50 aprox.... I am not that tall either! ;-) What a pitty! we could have met there however!

What was the infusion for?

Take care,
Sergio

 

[serg1942]

Hi froufox,

I have done the Dr. Yasko's genetic test, and according to it I would be: Bsm BB (the worst) and Fok FF (the best). The problems are:

1- this combination wasn't studied in the GcMAF paper...
2- I am not sure they are looking at the same polymorphisms (I think they are), and also I'm not sure about its reliability (although I am pretty sure it's accurate...).

So this unknowns make me think that, in the best scenario, I could respond partially to GcMAF...but we'll see! I sent my blood to Redlabs to run the VDR test to ensure...

Regards,
Sergio

 

[serg1942]

Well, just to express my feelings in this regard, I am not going to visit KDM just for GcMAF...I am going cause I am XMRV+ and very sick and I do need a doctor...If it is not GcMAF, it will be ARVs or other thing, or just nothing...But at least it seems to me like a good idea to be a patient of a good doctor who, probably will be in the cutting edge of CFS treatments...But no, I am not hoping a miracle either! Just a bit of lack, as I had with LDN, to improve the most I can...

Sergio