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

[RivkaRivka]

thanks, sergio, for that link and info!

thanks, ronan, for all yr info, too!!!

 

[Sushi]

can you tell us more regarding what you mean by the fact that cheney is disseminating info to other doctors?

I'm not "Crappy," though that isn't to say I'm not crappy...but I'll jump in cause I've been told that Cheney is or will be training some other docs in using GcMAF with patients. But I don't know when, how or who. Maybe someone else does. Cheney is using a different source of GcMAF, but I don't think we have any real data on which is the better source. I think he and De Meirleir keep in regular touch sharing ideas and experience. Both take IRIS seriously and use similar "support" protocols.

Sushi

 

[serg1942]

Ronan and Cansado

Hi Ronan,

Thanks for your reply! Would you mind to post your results when you receive them? It would be very interesting to know what combination is "bad" for KDM, GcMAF effectivity-wise...

Hola Cansado,

Hablas espaol? Thanks for breaking down the composition of your IVs. Is that a regular/important part of your treatment? Is it applied to everyone, or just to people living nearby? What is it for? How do you feel with them? Sorry the interrogatory

Saluditos,
Sergio

 

[Crappy]

:Retro mad:

hi crappy,

thanks for all yr info.

also, you wrote: "I understand Dr. Cheney is disseminating information to other Drs. Although, it sounds his diagnostics and treatment are not as detailed."

can you tell us more regarding what you mean by the fact that cheney is disseminating info to other doctors? do you mean re: GcMAF or do you mean in general about everything he is doing? if you are talking about GcMAF, can you tell us what you know? is cheney telling other doctors that they can get the GcMAF from him (cheney)? is he sharing his GcMAF protocol? any more hints you can give us are appreciated. thanks!

RivkaRivka

I don't know a lot yet, just that he is sharing with some trusted colleagues. Like everyone else he is trying GcMAF, planning on studying it. As others have posted in here before, he is directing people to BioGroup Laboratories for GcMAF http://www.bgli.nl/. I haven't seen anything about where Dr. Meirleir is getting his.

That's about all I know so far.

Like everyone else, I think Dr. Cheney's pricing is outrageous, it certainly eliminated me. However, I think he is passionate about his work and the best quality for all of us is; unlike other medical bureaucracies, he is agile. If he finds something that interests him as a treatment, he doesn't have to persuade 50 others to fund it, study it, report it, gear for a large study, etc... He just implements it and tries it. Maybe fewer of us will be dead thanks to doctors like him, pushing forward as hard as he can. More than our government is doing for us. We may as well be citizens of the Congo for all our government is doing for us. Corrupt leaders in third world countries get more help from our fellow countrymen. Sorry, just really feel betrayed by my own country.
Pledge Allegiance, my butt! :Retro mad:

 

[serg1942]

I wanted to raise a subject on how to bypass a bad VDR status gene, and I thought it would be better to open a new thread:

http://www.forums.aboutmecfs.org/sh...or-GcMAF-effectiveness...&p=140410#post140410

Sergio

 

[Ronan]

Interesting. Has anyone sent this on to KDM yet? I'll send it to him if nobody else has yet. I dont want him being flooded with this info from loads of people.

 

[serg1942]

Ronan, go ahead!! ;-)

 

[Lou]

I continue to wonder about something I read in the research paper by Ruggiero, Pacini and Yamamoto: "It is worty noting that the alleles "b" and "F" are also associated with the highest sensitivity to Vit D; a convergence of the Vit D and GcMAF signaling pathways can thus be hypothosized."

For those still unsure if they have a favorable VDR perhaps the above provides a clue. It's not completely clear but in reversing the quote could it mean those people most sensitive to vit D (brain fog afterwards, e.g.) are associated with these 'best' alleles? Perhaps Dr. Deckoff-Jones or someone else knowledgable with medical papers could comment. Thanks.

 

[mojoey]

I don't think the study is using sensitivity in the sense of symptoms, per se, but rather sensitivity on a cellular level. Vdr is the vitamin d binding receptor, so sensitivity here would refer to the sensitivity of the receptor to vit d.

 

[greg22]

I continue to wonder about something I read in the research paper by Ruggiero, Pacini and Yamamoto: "It is worty noting that the alleles "b" and "F" are also associated with the highest sensitivity to Vit D; a convergence of the Vit D and GcMAF signaling pathways can thus be hypothosized."

For those still unsure if they have a favorable VDR perhaps the above provides a clue. It's not completely clear but in reversing the quote could it mean those people most sensitive to vit D (brain fog afterwards, e.g.) are associated with these 'best' alleles? Perhaps Dr. Deckoff-Jones or someone else knowledgable with medical papers could comment. Thanks.

It seems that bb genotype is associated with lower level of active D vitamin 1,25-di(oh)
http://books.google.fr/books?id=5c6...CFIQ6AEwBg#v=onepage&q=bb ff genotype&f=false

 

[Lou]

Thanks Mojoey and Greg for your responses. I have no background in biochemistry so hope you'll overlook any niaveity regarding this further question. 'Not to beat a dead horse' but aren't our symtoms derived from a cellular level?

For those who may not be aware of any sensitivity to vit D supplementation I wasn't either until I noticed I couldn't play nearly as well a certain game that requires keen eye-hand co-ordination. I tried it several time, and always after taking vit d there was this reduction of co-ordination.
So, if interested, you could devise your own personal, though anecdotal, test.

 

[fullofbeans]

Hi Diesel,
are you sure that they are doing the Nagalase at Redlab? this indeed is interesting and I am curious what value did they find for you (i.e. was it at all comparable to the yamamoto values..?)
Thanks

 

[mojoey]

I've been given permission to post this KDM patient's experience:

"Yes, it's really great to feel progress! I need to take at least 25 injections, KDM said, and then possible 1 per month. I will clear this at my next consultation.
I guess I will take as many as it takes...I am still on all the other medications though - antibiotics, Vsl-3, TMD, Chlorella, Nexavir, Daily Health Propack etc, so this has not changed.
KDM says it's very important to treat the gut dysbiosis although I'm on Gcmaf.

My general condition has improved. I have more energy and less ME symptoms (dizziness, blurred vison, pains, headache, exhaustion etc). I feel stronger, and I handle more stress than before....I've just recently started to experience some sleep disturbance again, after many months with very good sleep on Gcmaf. KDM just wrote to med that this is gut related and I should start up with the next antibiotics. It's the H2S from the gut bacteria that switches off the hypothalamus, so it's not the Gcmaf...Only had 4 hours sleep the last two nights, so feeling pretty exhausted at the moment

My gene test says the following:
BSM1 Polymorphism - High responder
FOK1 Polymorphism - High responder"

It is worth mentioning that this patient does not have OI and wasn't aware of any PEM issues. Those are my two worst issues.

The test results begs the question of whether redlabs is telling us the specific genotypes? or just characterizing the level responder?

The bit about H2S and sleep issues is something I can relate to. The degree I tend to get deep sleep and uninterrupted sleep has a high correlation with the amount of trapped bloating I have. Also interesting that KDM thinks you need to address gut issues separately (with antibiotics no less) from taking gcmaf..I was thinking gcmaf would be systemic enough to hit the gut.

 

[serg1942]

Wow, thanks Joey! However it seems this patient is very lucky, being "high responder" for both genes...Anyway, it is still encouraging...

Best,
Sergio

 

[consuegra]

"My results" with Yasko

VDR Bsm/Taq -/- A
VDR Fok +/- Hetero
VDR Taq -/- C

"My results" with Redlabs BE

BSM1 Moderate or low responder

FOK1 Moderate responder

Chris

http://cfspatientadvocate.blogspot.com

 

[Crappy]

Interesting consuegra, thanks for the post.

That would mean all my brain power so far was wasted; because the results are completely opposite of my assumption, ha.

Biogroup Labs is saying VDR is no predictor of effectiveness, although I am sure they would be happy if all people bought it, all +6 billion.

 

[mojoey]

Hey Consuegra,

Can we take this to mean that Yasko's results are bunk? Your Bsm according to Yasko is bb (highest responder), yet you got the complete opposite result with redlabs

 

[mojoey]

Interesting consuegra, thanks for the post.

That would mean all my brain power so far was wasted; because the results are completely opposite of my assumption, ha.

Biogroup Labs is saying VDR is no predictor of effectiveness, although I am sure they would be happy if all people bought it, all +6 billion.

Well the doctor planning on doing a trial with BGLI's gcmaf (Cheney) seems to think otherwise

 

[serg1942]

Thanks Consuegra, I am sorry for your results. But I am pretty sure that, if GcMAF turns out to considerably help PWCs with good genetics, we will have soon a way to compensate these polymorphisms at VDR gene.

I had my blood drawn in Brussels a week ago, and among others tests, I ordered the VDR analysis. Because I also have Yasko's, I will report on my results as far as I know them, and we'll see if there's a pattern we can identify.

So far, what I can think of is:

- Yasko's wrong, or they were looking at Taq, instead at bsm...
- Redlabs is wrong
- Yamamoto paper consider bb as polymorphic...

We'll see!

Best,
Sergio

 

[Crappy]

I see Rich van Konynenburg's Phd. posts on this site. Amy Yasko Phd. includes VDR in Methyl Cycle analysis.

I am curious what someone with their knowledge thinks about being able to potentially increase GcMAF effectiveness by manipulating the Methyl Cycle?