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

serg1942

Senior Member
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LDN and GcMAF: Compatible?

Hi everybody,

I will be seeing Prof De Meirleir in 2 weeks, and am preparing my questions, etc.

My most important doubt is whether GcMAF could be affected somehow by LDN. For me LDN is right now my mainstay, and wouldnt like to stop it for anything in the world.

Any of you taking GcMAF is on LDN as well, or any of you know the opinion of KDM on the compatibility of these two therapies?

Thanks!
Sergio
 
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2
He might want you to take a biopsy if you have the "footprints" of the virus in your immunology tests.

Here is what I know about that:
You can either get it done near Himmunitas or get any gastero-enterologist do it, if they are willing.
RedLAb needs one biopsy from the stomach mucosa, one from the duodenum mucosa. Biopsies must be placed separately in tubes (like an eppendorf tube, or any small size plastic sample tube), just dry, no saline buffer, no fixative of any kind. Freeze the tubes as soon as possible, and ship on dry ice.
Ask Himmunitas and RedLAbs.
 
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2
Is it stomach biopsies or colon biopsies? Just curious. Do you know if he is looking for just XMRV or is he looking for entiroviruses as well?

He might want you to take a biopsy if you have the "footprints" of the virus in your immunology tests.

Here is what I know about that:
You can either get it done near Himmunitas or get any gastero-enterologist do it, if they are willing.
RedLAb needs one biopsy from the stomach mucosa, one from the duodenum mucosa. Biopsies must be placed separately in tubes (like an eppendorf tube, or any small size plastic sample tube), just dry, no saline buffer, no fixative of any kind. Freeze the tubes as soon as possible, and ship on dry ice.
Ask Himmunitas and RedLAbs.
 

garcia

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UK
Hi everybody,

I will be seeing Prof De Meirleir in 2 weeks, and am preparing my questions, etc.

My most important doubt is whether GcMAF could be affected somehow by LDN. For me LDN is right now my mainstay, and wouldn’t like to stop it for anything in the world.

Any of you taking GcMAF is on LDN as well, or any of you know the opinion of KDM on the compatibility of these two therapies?

Thanks!
Sergio

Sergio, I don't know what his opinion is on that particular combination, but I know his general philosophy is that it will take a combination of therapies to treat/cure this disease, so he is in favour of combination therapy in general.

LDN is working for you, so it makes sense to keep taking it. He didn't seem to have a problem with me taking imunovir, klonopin or lamotrigine. I have started GcMAF today.
 

vli

Senior Member
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CA
I know it's just a bit early to ask Garcia but... have you felt anything so far???
 

Sushi

Moderation Resource Albuquerque
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I have started GcMAF today.

Congratulations!

When you recover from travel, we'll look forward to hearing the highlights of your visit with KDM. Several of us see him on the 24th and if we piggieback off your questions to him and his answers, I hope we can learn even more.

Anyway, you got the GcMAF and that is great! Did he give an IV shot? Hope you aren't getting side effects.

Best wishes,
Sushi

Su
 

mojoey

Senior Member
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1,213
Great to hear Garcia. Thanks for letting us know and I'm excited to hear how you get on with it.
 

RivkaRivka

Senior Member
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368
i'm so excited to be hearing from our very own gcmaf pioneers, present and (very near) future. thank you, all!
 

RivkaRivka

Senior Member
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368
here is the other article on this:
http://www.sciencedaily.com/releases/2005/09/050915004650.htm

Macrophages, long-living white blood cells often considered the scavengers of the immune system, actually may damage a part of the brain where many memories are stored in their attempt to attack the virus there, according to findings reported in the Journal of Virology this month.


Researchers found that HIV-infected macrophages in the brain continuously travel to the temporal lobe, a part of the brain Alzheimer's disease often damages. Because the virus mutates nearly 100 times faster in the temporal lobe than other parts of the brain, attacking macrophages migrate there in a constant stream, causing harmful inflammation.


Nearly 15 percent of HIV patients develop dementia as their disease progresses. But understanding the routes macrophage cells take in the brain could help researchers find ways to block the migration and prevent HIV-associated dementia, said Marco Salemi, Ph.D, a UF assistant professor of pathology and immunology and an author of the study.


"In a way, it's not the virus that directly causes the dementia," Salemi said. "It's the fact that there is this continuous migration of infected macrophages to the temporal lobe. The virus mutates much faster there, the macrophages keep accumulating and keep creating this inflammation that leads to dementia." --


\
 

Sushi

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here is the other article on this:
http://www.sciencedaily.com/releases/2005/09/050915004650.htm

Researchers found that HIV-infected macrophages in the brain continuously travel to the temporal lobe, a part of the brain Alzheimer's disease often damages. Because the virus mutates nearly 100 times faster in the temporal lobe than other parts of the brain, attacking macrophages migrate there in a constant stream, causing harmful inflammation.
\

I am not a scientist, so this is just speculation. One difference between HIV and XMRV is the rate of mutation. XMRV is, I believe, more stable and less apt to mutate. If it is the rapid mutation of HIV that causes this migration to the temporal lobe, this may not be true for XMRV.

Sushi
 

undcvr

Senior Member
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NYC
here is the other article on this:
http://www.sciencedaily.com/releases/2005/09/050915004650.htm

Researchers found that HIV-infected macrophages in the brain continuously travel to the temporal lobe, a part of the brain Alzheimer's disease often damages. Because the virus mutates nearly 100 times faster in the temporal lobe than other parts of the brain, attacking macrophages migrate there in a constant stream, causing harmful inflammation.

\

Does the article say why the virus is able to mutate in the temporal lobe at such a fast pace ?
 

garcia

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Thanks Vli, Sushi, Joey & Rivka.

Sushi, I had an IV shot of GcMAF. For about 10-15 minutes after the shot I felt really happy. (A confounding factor is that I had a vitamin infusion immediately after the GcMAF, so it *could* have been that, but the vitamin infusion lasted 2 hours, where as the happiness was only for 10-15 mins). Also a friend also having her appointment there said she saw a guy go in & get an injection of GcMAF, then come out really happy. Will be interesting to see if I get this reaction when I have my next shot.

Vli, I don't know if its the GcMAF but since I came back yesterday, have had quite a sore throat. I don't really get sore throats. Its possible I could have just picked up a bug (don't think so), or that my immune system is fighting an existing bug (more likely). I hope it is the latter.

Will give a more details in the next couple of days when I've recovered from the trip.
 

Sushi

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Thanks Vli, Sushi, Joey & Rivka.

Sushi, I had an IV shot of GcMAF. For about 10-15 minutes after the shot I felt really happy.
Will give a more details in the next couple of days when I've recovered from the trip.

Hey Garcia,

Happy is the best side-effect I've heard of with GcMAF! Tell us more when you have recovered.

Best wishes,
Sushi
 

citybug

Senior Member
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538
Location
NY
Can anyone tell me how much the KDM visit part of the trip costs?

mojoey Do you know if Yamamato will go to the April conference, or has interest in CFS?

I read the first half of this thread which was very exciting, before people said to not get hopes up. I thought if KDM could really report some recoveries at conference might turn around some of the scientific resistance to xmrv. It's also the first doctor's name available for a treatment for xmrv since it is hard to find someone to do ARVs.
 

serg1942

Senior Member
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547
Location
Spain
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!:thumbsup:

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?

Also, Thanks for your comments on LDN! for the three of us who are visiting KDM the 23th of January (Sushi, Vli and me), LDN is working very well, being in my case what keeps me "alive" after several years 100% bedridden. So I do hope we can continue taking it, with no incompatibility with GcMAF. Again, guinea pig stuff...

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

Rest well, and luck luck luck!
Sergio
 
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10
Hi everyone,

I just got my test results from Red Labs. Diagnosis of KDM is 'leaky gut syndrome'. I tested negative for XMRV. He did the Test for GcMaf too. But I know too little to interpret these results. Maybe someone can tell me if I would be a candidate for GcMaf.

GFOL-1298A/C MTH 1298A/C Polymorphism - Moderate Activity
GFOL-677C/T MTH 677C/T Polymorphism - High Activity

GVDR-FOK1 FOK1 Polymorphism - Low Responder
GVDR-BSM1 BSM1 Polymorphism - High Responder

Anyone knows if this is good or bad in terms of GcMaf ??

Thank you
Henk
 

bertiedog

Senior Member
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1,745
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South East England, UK
Hi everyone

Is there some connection to having a low Vitamin D 25-OH level in connection to whether one is likely to respond to GcMaf? I thought I had read something about this but not sure where. I have just had my result come back low at 27 range 32-100 and will increase my Vitamin D3 to 5000 iu daily (from 2000 ).

Thanks I am considering whether to travel to see Dr DeMeirleir. My other problem is that I am relient on steroids and thyroid meds and don't know if they would mean he wouldn't be able to treat me with the GcMaf. I am XMRV+

Pam
 

Sushi

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Can anyone tell me how much the KDM visit part of the trip costs?
mojoey Do you know if Yamamato will go to the April conference, or has interest in CFS?

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
 
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