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

Lou

Senior Member
Messages
582
Location
southeast US
I think it's a good sign. Before I got me/cfs I did TM meditation, and as I began to go deeper would always get the muscle twitches. It was stored tension being released, or so I always thought. A more relaxed state followed the muscle twitches, and that made it a good thing for me. Should mention I don't actually know what fasciculations are, just assuming they correspond to muscle twitches.
 

xrunner

Senior Member
Messages
843
Location
Surrey
Interesting. Last time I heard him speak on youtube he said that he wasn't convinced yet by GcMAF as a treatment option for Lyme. He must have changed his mind. But then again with Lyme viruses tend to reactivate in certain individuals, so it may make sense.
At $400 per month it remains out of reach for me.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Interesting. Last time I heard him speak on youtube he said that he wasn't convinced yet by GcMAF as a treatment option for Lyme. He must have changed his mind. But then again with Lyme viruses tend to reactivate in certain individuals, so it may make sense.
At $400 per month it remains out of reach for me.

You don't have to pay $400 a month for GcMAF. I pay much less. It depends on your source. I use a very good, reliable source. You can PM me if you want more information.

Sushi
 
Messages
19
Location
Wagga Wagga
@CortJohnsonCort Johnson


#IACFSME - DeMeirleir POSTER finds 63% of 108 patients receive noticeable improvement using #GcMaF, did best at reducing fatigue




25 Sep via web
 
Messages
19
Location
Wagga Wagga
Think they were the results of the first DeMeirleir #GcMaF cohort study and that for his second group/cohort he was able to use a better Naglase test to differentiate levels of response ie Excellent, Very Good, Good responders etc.

Think KDM has a much larger group in second #GcMaF cohort study. I eagerly await his announcment of his patients results.
 
Messages
36
Location
NC
Hi, I took the plunge and am starting GcMAF with Dr. Enlander. I had my first dose yesterday...feel pretty yucky today. I updated the details on the spreadsheet. If anyone has any advise after looking at my line on the spreadsheet, pls let me know. Any suggestions on dealing with toxic feelings? I tried to read the thread, but my brain is just not comprehending all of it. Meanwhile I think it would be wise to halve my second dose. I appreciate any help you can offer.

Thanks,
Karen
 

mojoey

Senior Member
Messages
1,213
I've been out of the loop with gcmaf for awhile, so I wanted to check in with a very important question that no one seems to be asking:

Is gcmaf.eu still the only gcmaf product that is independently validated? (and let's put aside judgment about David Noakes when answering this question)

Earlier, one of my main concerns was seeing a number of patients on our public spreadsheet reporting excess inflammation that correlated with relapse or regression. Oviously this is not something I would expect KDM to report because it's difficult to verify (and he didn't in his Ottawa presentation). I never expected him to present the dramatic rises in c4a anyway because it's not conclusively bad and it's a broad immune marker (even though patients that follow Shoemaker would say otherwise).

On the flipside, Klinghardt reported only 5% of his patients on gcmaf.eu are experiencing this level of adverse inflammation. Note: in an earlier presentation, his main caveat about gcmaf was that it could cause adverse inflammation, so he already is keen on the issue that we're discussing here. Then, in this latest presentation, he also said he would not give out gcmaf unless mold issues were resolved first,which may have had something to do with the rise in c4a in some patients. Clearly he is trying to keep this effect in check. Combining his many caveats, logic train, and his use of an indepedently-validated product, I am inclined to take his reports on gcmaf very seriously.

It's still early stages, but if that number holds up, the discrepancy between products might become something to pay closer attention to.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Karen,

At a talk by Dr Enlander in London he mentioned a drug he was using for patients who had severe reactions to the GCMAF. I didn't write it down sorry (had a long name). Maybe if you ring his office they may be able to ask him?

Good luck.
 

vli

Senior Member
Messages
653
Location
CA
Karen,

At a talk by Dr Enlander in London he mentioned a drug he was using for patients who had severe reactions to the GCMAF. I didn't write it down sorry (had a long name). Maybe if you ring his office they may be able to ask him?

Good luck.

If he said the same thing as he did in my appt. with him on the same day he'd said diphenhydramine hydrochloride which is basically benadryl. I was disappointed when he told me that as antihistamines have never helped me.
 

lobba123

Senior Member
Messages
250
even though hbv and hiv are different thna cfs i never stop stressing that me and another hiv patient using gcmaf.eu tried double doses and doses every 3 days without any sides and using 5000-10000iu daily of vit d 3, so i do believe gcmaf.eu activity is different

the other hiv patient achieved hiv rna und and cd4 increase on 3 days injections, now i am doing the same and will check nagalase and all other hbv tests by november

my thinking is gcmaf doesn t activate macrophages only but there may be other functions on bone marrow and immune system

since maf 314 used daily had much more effects on cd counts in weeks and also gcmaf injections used daily on mices regressed liver cancers in just 3 weeks...i do think there might be a boosting effect on other parts of immune system

so yamamoto ipothesis about injections every 6 days, based only on macrophages activation, may be very limitative on gcmaf.
it would be very interesting to see if daily or closer gcmaf injections from gcmaf.eu can have less inflammation on cfs especially if combo with vit d3

I've been out of the loop with gcmaf for awhile, so I wanted to check in with a very important question that no one seems to be asking:

Is gcmaf.eu still the only gcmaf product that is independently validated? (and let's put aside judgment about David Noakes when answering this question)

Earlier, one of my main concerns was seeing a number of patients on our public spreadsheet reporting excess inflammation that correlated with relapse or regression. Oviously this is not something I would expect KDM to report because it's difficult to verify (and he didn't in his Ottawa presentation). I never expected him to present the dramatic rises in c4a anyway because it's not conclusively bad and it's a broad immune marker (even though patients that follow Shoemaker would say otherwise).

On the flipside, Klinghardt reported only 5% of his patients on gcmaf.eu are experiencing this level of adverse inflammation. Note: in an earlier presentation, his main caveat about gcmaf was that it could cause adverse inflammation, so he already is keen on the issue that we're discussing here. Then, in this latest presentation, he also said he would not give out gcmaf unless mold issues were resolved first,which may have had something to do with the rise in c4a in some patients. Clearly he is trying to keep this effect in check. Combining his many caveats, logic train, and his use of an indepedently-validated product, I am inclined to take his reports on gcmaf very seriously.

It's still early stages, but if that number holds up, the discrepancy between products might become something to pay closer attention to.
 
Messages
31
Location
Melbourne, Australia
Karen, I sent you a private message.

Janey

Hi, I took the plunge and am starting GcMAF with Dr. Enlander. I had my first dose yesterday...feel pretty yucky today. I updated the details on the spreadsheet. If anyone has any advise after looking at my line on the spreadsheet, pls let me know. Any suggestions on dealing with toxic feelings? I tried to read the thread, but my brain is just not comprehending all of it. Meanwhile I think it would be wise to halve my second dose. I appreciate any help you can offer.

Thanks,
Karen
 
Messages
36
Location
NC
Thank you ukxmrv, I'll ask next visit. I took a klonopin and it seemed to help the insomnia last night. Less queasy today. In general, I feel a bit better than yesterday.

Karen
 
Messages
36
Location
NC
@ vli, I was going to take a benedryl on day one, but it doesn't really agree with me...makes me agitated and I was already very agitated as it was. If the allergy type symptoms return after my next shot, I may give it a try as long it is not near bedtime. Can't sleep on the stuff.

Thanks,
Karen
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Hi all,
Someone has mucked up the names in the GcMAF spreadsheet.

https://docs.google.com/spreadsheet...iV2FONGlOMXBXV3c&hl=en&authkey=CIH8jqcC#gid=0

Lili85 [STRIKE]crossed out all the entries in her row, thinking that someone changed her data[/STRIKE] (I have uncrossed it). What in fact seems to have happened is that someone swapped around the names. There doesn't seem to be any obvious pattern to how the names were swapped around.

I suggest everyone find their correct row and re-enter their name (deleting their name from the incorrect row).

If you need to move someone else's name from your row, put that name where your name used to be.

Thanks!
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi all,
Someone has mucked up the names in the GcMAF spreadsheet.

https://docs.google.com/spreadsheet...iV2FONGlOMXBXV3c&hl=en&authkey=CIH8jqcC#gid=0

Lili85 [STRIKE]crossed out all the entries in her row, thinking that someone changed her data[/STRIKE] (I have uncrossed it). What in fact seems to have happened is that someone swapped around the names. There doesn't seem to be any obvious pattern to how the names were swapped around.

I suggest everyone find their correct row and re-enter their name (deleting their name from the incorrect row).

Thanks!

This is very weird!

Mine was also swapped and I changed it. I also changed the name on Lili's as I know who it really is. I noticed several anonymous users logged into it while I was there.

Sushi
 

leela

Senior Member
Messages
3,290
Oh no. I hope this was just innocent user error.
You may have to password-protect editing privileges :(
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
To me the gcmaf.eu sounds very tempting to try since most here seem to get bad inflammation. Everything sounds good that you are not doing. Is anyone here trying it? Here is someone working with autism http://drbradstreet.org/2011/10/11/an-update-on-viral-issue-in-autism/.

Do people think nagalase and c4a do give a good read on their progress for ME?

C4A may or may not be a useful indication of how you are doing as immune activation is bound to bring some degree of inflammation. Nagalase may be more useful.

Sushi
 

mojoey

Senior Member
Messages
1,213
I think a high enough starting C4a and/or dramatically rising c4a would indicate things aren't gonna be pretty on GcMAF based on what we've seen so far, but a low c4a would not indicate progress necessarily.

In other words, I think it's purely a warning indicator and not a "functional recovery" indicator