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

[leela]

I love this thread and all the pioneers on it!!
Honestly, this is the first time I've felt genuinely hopeful in so long.

For a patient population that has been maligned, dismissed and ridiculed (and continues to be by many) this is one terrifically inteligent, brave, informed, strong, determined bunch of people!
:victory:

 

[lobba123]

Hi Serg,

Gc protein is also called DBP (D vitamin binding protein).
DBP transports inactive D vitamin (25-OH) into the cell, then the mitochondria converts it
into its active form calcitriol (1,25-Di-OH), finally 1,25 OH binds to the VDR.
Maybe in a first time 25-OH blood concentration decreases being transported into the
cell at a faster rate and then the liver reacts releasing more 25-OH.
Perhaps that is an explanation for D vitamin rising under GcMAF.
I think that your 1,25 OH is decreasing is a good sign.
High 1,25 OH an low 25 OH are a hallmark of auto immune and lyme dissease.
The hypothesis behind that is that L-form bacterias (or biofilms) bind to the vdr prenventing its activation by 1,25 OH, the cell then produces it more and more.
In the mean time the thyroid sends a message to the liver to stop producing 25-OH in order to decrease 1,25 OH level.

since both hbv and hcv infections have very low vitamin D 25OH, do you think this can confirm we have the gcMAF block as in CFS, HIV and cancer?

in cronic hbv infection there is no immune response at all, all antibodies directed to the virus are extremely low, there are only antibodies directed to destroy infected liver cells but this makes only damage to the liver while the virus is totally unaffected by this immune response

next time i will check 1.25OH and 25OH too if the situation is the same as for you, we have one thing certain in hbv immune modulatory drugs, they all get double response if vitamin d is >50ng/ml but it is extremely difficult to reach that even taking 1 hr of sun everyday and 5000iu vit D supplements

if only the nagalase test was easily available i could know if i have the same immune block as you i guess and trying Gcmaf would be probabbly a solution to infection

 

[greg22]

since both hbv and hcv infections have very low vitamin D 25OH, do you think this can confirm we have the gcMAF block as in CFS, HIV and cancer?

in cronic hbv infection there is no immune response at all, all antibodies directed to the virus are extremely low, there are only antibodies directed to destroy infected liver cells but this makes only damage to the liver while the virus is totally unaffected by this immune response

next time i will check 1.25OH and 25OH too if the situation is the same as for you, we have one thing certain in hbv immune modulatory drugs, they all get double response if vitamin d is >50ng/ml but it is extremely difficult to reach that even taking 1 hr of sun everyday and 5000iu vit D supplements

if only the nagalase test was easily available i could know if i have the same immune block as you i guess and trying Gcmaf would be probabbly a solution to infection

Well, i was just trying to explain how d vitamin was transported into the cell by DBP alone. GC Maf is DBP with 2 sugars added (MAF) which can also be called DBP-MAF.
From what i have read so far it seems that GcMaf (DBP-MAF) turns on macrophages by activating CD36 receptor, howeverI am not sure and the link between vdr and gcmaf isnt fully established yet...
There are pleny of explanations for low 25-oh.
What I was pointing out is the gap between 25-0H and 1,25-OH observed in some disseases.
More info here: http://autoimmunityresearch.org/preprints/BlaneyAnnals2009Preprint.pdf

 

[tormenta]

Hello froufox

I'm also off to see KDM on pass Monday 7 for my consult, I was with my son. I wish I met you.

KDM was excited to see the improvement of my symptoms since my last visit (January 12).

I asked how patients were doing in general and he said very well indeed. He said he expects me to be fully better after 40 weeks on GcMAF. I asked if i would have to keep taking GcMAf after that and he said some patients are being kept on a much lower amount. He said full recovery likely but i might still have the same food sensativites for a few years after as it takes a long time for the memory cells to be replaced.

Hopefully he is right about all this... not the first time ive heard i'll be fully better but things are looking positive for the time being anyway!

Thats all i can remember now. Sitting in the airport waiting for a flight in 4 hours with a fuzzy head.

Ronan

he also tells me that intestinal problems and improved much more, can be within 3 to 6 months. I rely on your experience.

I had a relapse of small bowel in mid-February, (20 days after stopping the antibiotics), but nothing compared to the previous relapses, I only made ​​it impossible to work a few days, now I'm back on the road to recovery.
say that the gut is a reservoir of XMRV, if KDM expected to improve bowel GcMAF little has little that is also attacks reserves GcMAF retrovirus.
moved a great week at the clinic of KDM. greetings to all.

 

[Spacca]

Some questions to KDM

I went to KDM this morning and asked him how about the cryptovirus and the Rubalavirus? He said that it's impossible to test for these virusses. When I asked about Dr. Enlander's immunoprop, he told me Dr. Enlander is trying to make money with it. When I asked him about IL-7 He told me trials are going on. About stemcelltherapy he told me that little is known about it, because there is too much resistance from the authorities.
I also asked if there is a link between XMRV and the recently discovered proteins in the spinal fluid, but he told me that it is too early to tell. Than I asked if GcMAF would also be useful if you are XMRV- but have low NKC, but he told me that he uses GcMAF only against XMRV, and that people with XMRV have a high percentage of NKC because of the immunoreaction... In fact my question should have been if it would be effective agains a weakened immunesystem, be he seamed bothered by so many questions and let me out. I only did the XMRV PCR and serologytest, results in about three months.
After this meeting, I have the feeling that it's still too early because too less is known...but KDM told me that XMRV is THE cause of CFS....

 

[Sushi]

I went to KDM this morning....KDM told me that XMRV is THE cause of CFS....

Thanks Spacca for posting. I guess he did not yet start you on GcMAF without knowing whether you are XMRV+?

Please keep us posted. KDM seems to respond best to questions you can link to your own symptoms. Also, it depends on how many patients he has waiting to see him!

When he told you that he believes that XMRV is the cause of ME/CFS, did he elaborate, give any back-up research or explain his thinking?

Best wishes,
Sushi

 

[anncavan]

Shipping to redlabs

Hi all,

Heading to doctor's office in a few hours to have blood drawn for VDR. Filling out final export paperwork and noticed Fedex has a line asking for "Recipient's Tax ID# for Customs Purposes."

Did anyone else need this for shipping? By chance still have it? Redlabs is closed between now and when I have to ship today.

Thanks for any help!!!
Lannie

 

[Sushi]

Hi all,

Heading to doctor's office in a few hours to have blood drawn for VDR. Filling out final export paperwork and noticed Fedex has a line asking for "Recipient's Tax ID# for Customs Purposes."

Did anyone else need this for shipping? By chance still have it? Redlabs is closed between now and when I have to ship today.

Thanks for any help!!!
Lannie

Hi Lannie,

I shipped mine from the US too and as I remember FedEx didn't need that info. I just used the info on the Redlabs requisition form. The important stuff is to list the contents in detail--such as human blood, styrofoam box, leak proof tube, absorbant material, gel freezer pack etc. plus to say that it is non-hazardous, non-toxic, non-contagious, for medical testing, UN 3373 biohazard bag category B.

I went to a big Fed Ex shipment center (not a Kinkos) and they knew the drill and could "test send it" to see if it would go through. There was some question about RedLabs zip code--I think we had to omit the "B" for Belgium. It cost $80 and I tracked it and it got there in 30 hours. I also email Redlabs and asked them to confirm delivery--which they did!

A big Fed Ex shipment center should be able to help you with details. The more info you put on the shipment form the better. It goes through customs in Paris and then you are home free!

Best,
Sushi

 

[anncavan]

Sushi - u r amazing!!!!! Thank you!!!!!

 

[Nabo]

Thanks Spacca for posting. I guess he did not yet start you on GcMAF without knowing whether you are XMRV+?

Please keep us posted. KDM seems to respond best to questions you can link to your own symptoms. Also, it depends on how many patients he has waiting to see him!

When he told you that he believes that XMRV is the cause of ME/CFS, did he elaborate, give any back-up research or explain his thinking?

Best wishes,
Sushi

I am xmrv negative and i am using gc maf form kdm.
First kdm thought i was positive for 99%
Now i have done pcr and serology and both negative.
KDM told me that patients who are mostly bedritten get false negative results on the xmrv test.
So i dont know if i am positive?? but the tests are negative.
But i am using gc maf and it is working so that is the most important haha.

Last week i went to kdm, but still sooooo tired pfff.
so more info later

 

[anncavan]

Shipping to RedLabs - UPDATE

Wanted to share my experience quickly. Sushi was right on the money with her advice. I wrote everything she said. They still gave me a hard time until I mentioned out loud the UN3733. Then all of a sudden they said "why didn't you tell us that from the start?" Ha! Like I was supposed to know. Anyway, they looked up UN3733 in their book and found a diamond shaped sticker that we wrote UN3733 in and slapped it on the box. Then i was to go.

 

[anncavan]

Wanted to share my experience quickly. Sushi was right on the money with her advice. I wrote everything she said. They still gave me a hard time until I mentioned out loud the UN3733. Then all of a sudden they said "why didn't you tell us that from the start?" Ha! Like I was supposed to know. Anyway, they looked up UN3733 in their book and found a diamond shaped sticker that we wrote UN3733 in and slapped it on the box. Then i was to go.

Oops, I meant UN 3373 - had the #'s swapped... sorry

 

[mojoey]

Sushi and Ann you both rock! You just rescued x number of patients (including me) from an all but certain crash at Fedex Int'l !

 

[filfla4]

I am xmrv negative and i am using gc maf form kdm.
First kdm thought i was positive for 99%
Now i have done pcr and serology and both negative.
KDM told me that patients who are mostly bedritten get false negative results on the xmrv test.
So i dont know if i am positive?? but the tests are negative.
But i am using gc maf and it is working so that is the most important haha.

Last week i went to kdm, but still sooooo tired pfff.
so more info later

Same here. I am xmrv negative by culture and pcr. My serology result is not in yet. KDM also put me on GcMAF. He must believe that I am probably positive, based on the extensive testing he carried out. I've had 7 shots so far - I'm struggling this week and as others have reported this might be the downturn KDM warned about.

 

[Rrrr]

ann and joey: what redlabs tests are you doing in advance of your kdm visit?

i just called kdm. my appt is april 11-12, and as sushi knows, i'm soooo torn as to if i can do it or if i should just get bgli gcmaf.

kdm's assistant (molly?) said they will not get me the dry ice needed for transporting the gcmaf. i will have to get it myself. and it is a 15 min car ride from their office to the dry ice.

also, the tests they may recommend cost this:

- breath test done at noon (2 tests on two separate days) (90 euros each)
- "effort test" done in the afternoon 30 min. (125 euro: EKG, tests yr heart)
- cost of stool test: 250 euro (tests for mold)
- blood test for (1500-2000 euros)

this is soooo expensive.

does anyone know what the blood tests are for? i'll be doing the mini-cytokine panel and some of the immune test at VIP ahead of time. is that what tests you are doing at redlabs, joey and ann?

rrrr

 

[Sushi]

Hi Rrrr,

Re: the tests, the only one you need in order to get GcMAF prescribed is one you already have--your postitive XMRV test, and even without that, he is giving it to some patients when he is quite sure that their "negatives" are false.

If you decide to go, KDM will go over your medical records, questionnaire and your consult and recommend certain tests. The ones you were told, are not necessarily what he will recommend. Also, you are told clearly that you don't have to do all the tests -- you can decide in light of your budget. I don't know of anyone recently doing the stress or EKG and Sergio, VLI, myself and a few others didn't do the two hydrogen breath tests cause we knew we were lactose and fructose intolerant.

My blood tests (at least the ones sent to RedLabs were about 850 EUROS.

If you want to know more about the blood tests he did for me, contact me outside the forum and I can read them too you.

Maybe the dry ice company will deliver to you?

Best,
Sushi

 

[Rrrr]

thanks, sushi!

i think a few folks just came back from KDM. can you tell us, did KDMs office offer you dry ice? or did you have to make a special trip (15 min car ride away from KDM's office) to get it yrself???

 

[Sushi]

thanks, sushi!

... did KDMs office offer you dry ice? or did you have to make a special trip (15 min car ride away from KDM's office) to get it yrself???

I replied by email.

Sushi

 

[Ronan]

From what i understand GcMAF remains potent at room temperature for a few weeks at least doesn't it?

 

[Sushi]

From what i understand GcMAF remains potent at room temperature for a few weeks at least doesn't it?

Hi Ronan,

I don't think it remains potent for weeks. I think we read that it lost about half its potency at room temperature in 2 weeks. They are telling us that it is OK to freeze and thaw it a few times and that if it is unthawed for a day or so, it is OK.

I'll still try to keep mine frozen though as every bit of potency is welcome.

Sushi