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

[Daffodil]

i was looking up gcmaf and kidney failure and on the cheney website, it says that in addition to 1 case of gcmaf-related acute kidney failure in europe, they had one at cheney's office, so they changed the protocol. i am not sure how long ago this was posted. does anyone know the change in the protocol? is it that he no longer supplements with vitamin D?

he is charging $80 a month to gain access to his information, from dirt poor CFS patients. un fking believable.

 

[Daffodil]

so i was reading marshall protocol site and they explain away low GFR and high creatinine by saying its herx - high cell turn-over. they even explained away someone's kidney failure.

 

[Sushi]

i think even low dose gcmaf has caused kidney problems for me. my GFR was 58 and i have this new extreme low back pain. i didnt even take vitamin D with it.

Hi Daff,

Yes, it looks like you may have some kidney issues--I hope they resolve soon.

How do you link them to GcMAF? I have never heard of this connection before. Do you have any data, articles, etc.? Changes in kidney tests can be caused by so many things.

Best wishes,
Sushi

 

[Daffodil]

hi all. i had STAT kidney bloodwork and am waiting for results. i will have to do a 24-hr creatinine clearance test at some point to get a more accurate idea of whats going on, but i am still in quite a bit of pain.

i have 2 majro questions burning in my mind: why did my kidneys get inflammed on such a low dose of GcMAF and why would i do well and then relapse all the way, given that my macrophages are being activated?

does anyone out there have access to demeirleir or ruggiero? does ruggiero take phone calls? why havent i heard of this happening to anyone else here?

someone out there has to know something!

 

[Sushi]

hi all. i had STAT kidney bloodwork and am waiting for results. i will have to do a 24-hr creatinine clearance test at some point to get a more accurate idea of whats going on, but i am still in quite a bit of pain.

i have 2 majro questions burning in my mind: why did my kidneys get inflammed on such a low dose of GcMAF and why would i do well and then relapse all the way, given that my macrophages are being activated?

does anyone out there have access to demeirleir or ruggiero? does ruggiero take phone calls? why havent i heard of this happening to anyone else here?

someone out there has to know something!

Hi Daff,

Glad you got these tests. Let us know how they come out.

If your tests do indicate kidney problems, it would be difficult to point to the cause. You have taken a variety of very potent medications and some of them could effect the kidneys--I'd guess that high inflammation might also effect kidney, but I don't have any data on that--just a guess.

If you would like to contact Ruggiero, email is probably the best way. You may be able to find an address on the internet, but whether a researcher will respond to an email from someone he doesn't know, is always a question.

Best wishes,
Sushi

 

[Sushi]

i was looking up gcmaf and kidney failure and on the cheney website, it says that in addition to 1 case of gcmaf-related acute kidney failure in europe, they had one at cheney's office, so they changed the protocol. i am not sure how long ago this was posted. does anyone know the change in the protocol? is it that he no longer supplements with vitamin D?

he is charging $80 a month to gain access to his information, from dirt poor CFS patients. un fking believable.

I know Cheney was giving high doses of GcMAF--maybe he changed that--I am just guessing here. They also became aware to watch patients taking drugs processed through the kidneys cause this in combo with high Vit D 1,25 (which is related to high calcium) could, very occasionally, cause problems. (this seemed to explain the case you mentioned) So it is very important to monitor your Vit D 1,25.

Sushi

 

[Daffodil]

thanks Sishi. i read online that peterson is saying that gcmaf causes lupus ./ autoimmune problems but KDM says it isnt happening with his patients. wonder whats up with that.

i think there is an autism conference coming up or something..maybe we will learn more.

 

[Sushi]

thanks Sishi. i read online that peterson is saying that gcmaf causes lupus ./ autoimmune problems but KDM says it isnt happening with his patients. wonder whats up with that.

i think there is an autism conference coming up or something..maybe we will learn more.

KDM has not made any statements about this.

Sushi

 

[alice]

I know Cheney was giving high doses of GcMAF--maybe he changed that--I am just guessing here. They also became aware to watch patients taking drugs processed through the kidneys cause this in combo with high Vit D 1,25 (which is related to high calcium) could, very occasionally, cause problems. (this seemed to explain the case you mentioned) So it is very important to monitor your Vit D 1,25.

Sushi

Sushi,

Do you know how high Cheney was going? and was it a yoghurt type GcMaf or by injection. Dr. Cheney also does sublingual which is how I am taking mine -

When you say "They also became aware to watch patients taking drugs processed through the kidneys cause this in combo with high Vit D 1,25(which is related to high calcium) could, very occasionally, cause problems". By this, do you mean when GcMaf is taken orally instead of by injection?

Alice

 

[Sushi]

Sushi,

Do you know how high Cheney was going? and was it a yoghurt type GcMaf or by injection. Dr. Cheney also does sublingual which is how I am taking mine -

When you say "They also became aware to watch patients taking drugs processed through the kidneys cause this in combo with high Vit D 1,25(which is related to high calcium) could, very occasionally, cause problems". By this, do you mean when GcMaf is taken orally instead of by injection?

Alice

From what I have heard, Dr Cheney used to give 100 ng of GcMAF sublingually and then later he started giving MAF 314. I think some patients took both, but I am not sure. I don't think he ever had patients inject it--but I may be wrong.

Best,
Sushi

 

[Daffodil]

i heard cheney was giving it every 5 days or even more often?...not sure.

doesnt anyone here have access to his website?

 

[Overstressed]

thanks Sishi. i read online that peterson is saying that gcmaf causes lupus ./ autoimmune problems but KDM says it isnt happening with his patients. wonder whats up with that.

i think there is an autism conference coming up or something..maybe we will learn more.

Hi Sue,

can you point me where you Dr. Peterson is saying this ? I had taken long time, full doses of Gc-Maf, and I had some low numbers of antibodies to my thyroid, but in the course of Gc-Maf, it didn't go up. More, together with selenium, my numbers went down... I didn't had my autoimmune panel checked, lately, so that's on my list too, the next time.

But, I had a CD4/CD8 panel, and a complete bloodwork. My CD8 didn't went up, and my protein electrophoresis-panel didn't change either. If you have changes in your e.g. alpha1/alpha2, there might be something autoimmune going on.

But, I'll have that checked, since I have swollen saliva glands in my mouth for half a year now. This might point to Sjögren's...

Best wishes,
OS.

 

[Daffodil]

Hi Os. I messaged you.
xox

 

[Daffodil]

i got some bloodwork back. forgot to ask for ANA and 2 weeks wait for both vitamin D's......but aside from a little low sodium, it all looks normal...calcium creatinine GFR etc.

that's weird.

i guess i will continue on the break from gcmaf and maybe return to an even smaller dose, like 10 ng and see if that does anything.

guess i'll never know why i crashed.

 

[Overstressed]

Hi Sue,
I would stop Gc-Maf for now, give it a rest. I know you're desperate, but you'll gain nothing by forcing it, on the contrary, you will regress as you experience now. I've experienced it too. Try to figure out what is going on, before thinking of continuing Gc-Maf.

Take good care of yourself,
OS.

 

[Ronan]

Hmmm, made a post earlier but dont see it!

I was saying the stuff about the swollen Saliva glands was interesting as i have had swollen cheeks for a good while now. Always thought it was a fluid or muscle thing but after checking where the Saliva gland is it fits perfect. Anyone know what i can do about it?

 

[Daffodil]

ronan maybe u should lower your gcmaf dose?

 

[Daffodil]

i was reading some online stuff about lupus. turns out a lot of those people have severe lower back pain too, sounding exactly like mine and they also worry it is their kidneys. interesting. the pain is very intense and is not going away at all.

i just have this feeling that the gcmaf has started some kind of inflammatory process that is going to go out of control here.

now i really wish i had checked c4a or more inflammatory markers to see if i was a candidate for gcmaf....i think my taking this was a bad idea.

 

[Daffodil]

so my back pain moved to the front too...i dont think kidneys anymore..i am thinking spleen. anyway i am worse than ever now. tenofovir is doing nothing. not taking gcmaf right now. blah.

 

[Daffodil]

why does vitamin diagnostics - the people who test nagalse - insist that you tell them what disease you have?