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

[RivkaRivka]

i have communicated with dr mikovits through a third party re: GcMAF, and her (mikovits's) understanding of the action of GcMAF causes some concern over whether it would be sufficient on its own to treat XMRV, due to the possibility it could activate virus reservoir, and that she believes clinical trials are necessary to know what the actual outcome will be, and what the most effective and safe treatments for XMRV will be. People SHOULD NOT be making clinical decisions based on this opinion, but should be consulting their physician.

rivka's note: this is sort of what she said about stem cells. i think that in general, she can't comment on treatments. but it is interesting that she says that it could activate virus reservoirs. with stem cells, she had said she worried that it could stimulate xmrv, or something to that effect.

another idea to address the reservoirs that may get "activated" by gcmaf, besides taking antiretrovirals, is to take both nexavir and artesunate. this idea came from a reputable source that i will not disclose.

is this also what KDM suggests, or is he only suggesting nexavir?

update: i now hear from reliable sources that KDM is suggesting taking all three: gcmaf, nexavir and artesunate.

 

[Sushi]

ronan, garcia, froufox, sergio and sushi,

did you test for nagalase? do you know how to test for it? lab and cost?

why test for it? to see a before and after analysis, or is there another reason to test for it?

and what the heck is it?

Quick and partial answer--I am nearly on the fly to Belgium. It is only available from Redlabs, Belgium. It is an experimental test, and last heard, they weren't charging for it. It is a marker to watch related to GcMAF treatment.

Best,
Sushi

 

[Overstressed]

Hi Rivka,

I had my Nagalase test done in the Netherlands(http://www.europeanlaboratory.nl), and I payed app. 60 euro's for it. My Nagalase level was 0.7, and was normal. However, the guy from the lab told me CFS-people tend to have low levels. I guess, whoever went there for a test, already was on Gc-Maf, and that might be the reason for having low values. But I'm not sure...

I was not aware of any lab testing for Nagalase before I started Gc-Maf, otherwise I would have had a baseline to compare with. I'm very curious to see some 'before and afters'.

Take care,
OS.

 

[garcia]

Does KDM give a drip that compensates for testing all that blood at once?

He can do but you have to specifically ask for it.

 

[Alexia]

another idea to address the reservoirs that may get "activated" by gcmaf, besides taking antiretrovirals, is to take both nexavir and artesunate. this idea came from a reputable source that i will not disclose.

is this also what KDM suggests, or is he only suggesting nexavir?

update: i now hear from reliable sources that KDM is suggesting taking all three: gcmaf, nexavir and artesunate.

Hi Rivka,

I speak Dutch so I'm able to follow the Dutch/Belgium forum. What I read there is that KDM doesn't prescribe the same to everybody. Some people get only Gc MAF others Gc MAF plus nexavir and others Gc MAF plus artesunate (maybe these are the patients who already got Nexavir previously but I don't know), I'm not sure if somebody got the 3 of them together....
It's difficult to know the cause of these variations because the patients don't understand it either and also some patients have seen KDM for some years already so I suppose that he has tried other medicines before the Gc MAF and knows how the patient reacted.

 

[Ronan]

I'm a KDM patient for over 4 years and am on Nexavir, Artesunate and GcMAF. I took Nexavir a few years back also.

 

[froufox]

Hi Ronan, how did u get on with the Nexavir and how are u doing on the combo u are now on?

Thanks

 

[froufox]

Hi Rivka

Yes I got tested for Nagalase...as Sushi pointed out that test was actually free...i dont know if thats just the case if you are having all the other tests done or whether its free anyway.

ronan, garcia, froufox, sergio and sushi,

did you test for nagalase? do you know how to test for it? lab and cost?

why test for it? to see a before and after analysis, or is there another reason to test for it?

and what the heck is it?

 

[serg1942]

Hi Rivka,

I am awaiting for my nagalase results. As Sushi has told you, it is for free at Redlabs. Maybe this is only when you order other tests. Also, No idea whether it is still free...

The rationale for testing nagalase is that, in theory, HIV infected cells and cancer cells release this substance to inhibit the formation of GcMAF in our body (this is a defense strategy to evade the immune system). Therefore, by taking GcMAF, we are bypassing this blockage, so that a proper immune response against infected cells or cancerous cells may be mounted.

So, the logical thing would be that we have high nagalase, and, as the treatment for XMRV works, nagalase drops...I am disconcerted cause some have reported normal or low nagalase on CFS, and I cannot understand this in the picture of an XMRV infection being vital in CFS...

Un abrazo,
Sergio

 

[RivkaRivka]

thanks to all for yr answers! i understand nagalase now.

 

[Nabo]

- who is now on GcMAF: I am on gcmaf
- level of severity of ME/CFS: I have sever me/cfs can only sit and lay in bed. And sometimes computer.
- length of time sick with ME/CFS: More than 2,5 years.
- when they started GcMAF: end of december 2010
- their source of GcMAF: K de meirleir
- their VDR results: Only know that i am high responder.
- if they are having any good or bad effects from the GcMAF: No effects yet..

 

[RivkaRivka]

nabo, i'll update the list to include yr answers. thanx!

everyone: is KDM prescribing nexavir injectable or nexavir cream?

and can anyone tell me what the dose is that KDM is prescribing?
and if it is injectable, is it subcutaneous or intramuscular?

thanks!

 

[Sushi]

everyone: is KDM prescribing nexavir injectable or nexavir cream?

and can anyone tell me what the dose is that KDM is prescribing?
and if it is injectable, is it subcutaneous or intramuscular?

thanks!

It is injectable, subcut (I think), don't remember the dose.

Sushi

 

[RivkaRivka]

UPDATED LIST (Jan 20, 2011)

can we get a list of
- who is now on GcMAF
- level of severity of ME/CFS
- length of time sick with ME/CFS
- when they started GcMAF
- their source of GcMAF
- their VDR results
- if they are having any good or bad effects from the GcMAF
- NEW QUESTION: are you on Nexavir and Artesunate, too?

if you send me the names, i'll keep adding them to this list. or you can cut and paste the list and add it yrself to yr own post.

== Past ==
Joey (Undisclosed source. No response from GcMFA, but it was only a limited trial of a pre-curser of GcMAF)

== Now ==
1. Cansado
KDM, Fall 2010

2. Overstressed
Moderate ME/CFS. Ill 3 yrs. Started May 2010, FOK Low responder, BSM moderate to low responder. No signficant response to GcMAF.

3. lili85
Increasingly ill for 5-6 years, positive for XMRV & MLV related virus. KDM, started Nov 2010. VDR: FOK high responder, BSM moderate or low responder (Redlab). Good effects so far (9 weeks into the treatment).

4. CindyWilliams
Dr. Sharp, Nov 2010??

5. Nabo
Severe ME/CFS (only sitting and bedridden). Ill 2.5 yrs. Started GcMAF with KDM at end of Dec 2010. VDR results: Only know that i am high responder. No effects yet.

6. Ronan
KDM, Dec 2010

7. Lou
Sick 20+ yrs. Got GcMAF direct fr BGLI, thru his doctor. Started GcMAF and artesunate Jan 2011. No response yet.

8. Garcia
KMD, Jan 2011

9. Froufox
Ill for 18yrs, moderate/severe. Started GcMAF 11th Jan 2011. Source of GcMAF - KDM. VDR: FOK1 - moderate responder, BSM1 - Heterozygote. Effects so far - increased depression, lots of headaches, lethargy, light sensitivity, inflammation in sinuses. Possibly some mild good effects at times eg extra energy, less inflammation in head.

10. Tormenta
KDM. Started GcMAF on Jan 2011. FOK Low responder, BSM moderate to low responder (test done at redlab).

== soon ==
Sergio: KDM, Jan 2011
Sushi: KDM, Jan 2011
Vli: KDM, Jan 2011
Fili: KDM, Jan 2011, VDR Moderate responder/High responder

 

[Lou]

Hi,

We know that bgli start patients at 1/5 normal dose --in my case for first eight shots-- so if someone going to KDM could find out how he doses it may help down the road as one aspect of comparison.

Thanks,

Lou

 

[garcia]

We know that bgli start patients at 1/5 normal dose --in my case for first eight shots-- so if someone going to KDM could find out how he doses it may help down the road as one aspect of comparison.

KDM starts people at a full/constant dose. There is no ramp-up. Though obviously we don't know how KDMs full dose compares to BGLIs full dose.

 

[Tony]

I've found nexavir to be pretty helpful, though it did take about 8 months to notice. After almost a year it became very noticeable and I've gained about a 5% overall functional improvement.

With regards to artesunate in KDM's treatments I'm pretty sure that not everyone is on it. I'm not. It may be that those who have measureable high viral titers are on it? Or some other abnormal lab results? If people who take it were to post some abnormal test results we may be able to work it out.

My own results showed no viral titres to the usual suspects of EBV, CMV etc but IL-8 is pretty high at 195 (range 0.00-70.00)

 

[lili85]

List

UPDATED LIST (Jan 20, 2011)

can we get a list of
- who is now on GcMAF
- level of severity of ME/CFS
- length of time sick with ME/CFS
- when they started GcMAF
- their source of GcMAF
- their VDR results
- if they are having any good or bad effects from the GcMAF

if you send me the names, i'll keep adding them to this list. or you can cut and paste the list and add it yrself to yr own post.

== Past ==
Joey (Undisclosed source. No response from GcMFA, but it was only a limited trial of a pre-curser of GcMAF)

== Now ==
1. Cansado
KDM, Fall 2010

2. Overstressed
Moderate ME/CFS. Ill 3 yrs. Started May 2010, FOK Low responder, BSM moderate to low responder. 3 Years ill. Excellent results.

3. CindyWilliams
Dr. Sharp, Nov 2010??

4. Nabo
Severe ME/CFS (only sitting and bedridden). Ill 2.5 yrs. Started GcMAF with KDM at end of Dec 2010. VDR results: Only know that i am high responder. No effects yet.

5. Ronan
KDM, Dec 2010

6. Lou
Sick 20+ yrs. Got GcMAF direct fr BGLI, thru his doctor. Started GcMAF Jan 2011. No response.

7. Garcia
KMD, Jan 2011

8. Froufox
Ill for 18yrs, moderate/severe. Started GcMAF 11th Jan 2011. Source of GcMAF - KDM. VDR: FOK1 - moderate responder, BSM1 - Heterozygote. Effects so far - increased depression, lots of headaches, lethargy, light sensitivity, inflammation in sinuses. Possibly some mild good effects at times eg extra energy, less inflammation in head.

9. Tormenta
KDM. Started GcMAF on Jan 2011. FOK Low responder, BSM moderate to low responder (test done at redlab).

== soon ==
Sergio: KDM, Jan 2011
Sushi: KDM, Jan 2011
Vli: KDM, Jan 2011

lili85: Increasingly ill for 5-6 years, positive for XMRV & MLV related virus. KDM, Nov 2010. VDR: FOK high responder, BSM moderate or low responder (Redlab). Good effects so far (9 weeks into the treatment).

 

[RivkaRivka]

tony, thanks for yr info. are you on gcmaf, too?

lili, thanks for your info. i'll input it!!!!! can you tell us more about what good results you are experiencing, just to give us all hope?

 

[Lou]

Hi Citybug,

Sorry that I initially missed your message. I actually brought gcmaf to the attention of my doctor. She's an integrative doc. Her being the first I contacted makes it 1 for 1 attempt, making the odds in your favor that a willing doctor can be found around the greatest city in the world, NY. Ooops, just being biased. Hope this helps.

Best,

Lou