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

Berthe

Berthe

Senior Member
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136
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near Antwerp
I just want to ask anyone on Gc Maf if they also experience problems with sleeping despite taking medication. I usually take something to go to sleep and Trazolan to sleep through, but after six injections I wonder if the effect of my sleepmedication is diminshed by the Gc Maf? I only sleep five hours a night depsite being exhausted I can't sleep during the day. (This has always been a problem to me during my illness). If someone else is experiencing the same difficulties, please let me know.

Love,
Berthe
 
Sushi

Sushi

Moderation Resource Albuquerque
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19,972
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Albuquerque
Berthe said:
I just want to ask anyone on Gc Maf if they also experience problems with sleeping despite taking medication.

Love,
Berthe
Click to expand...

I haven't noticed any difference with sleep on GcMAF. I do take a sleep med though and still need it.

Best wishes,
Sushi
 
Sushi

Sushi

Moderation Resource Albuquerque
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19,972
Location
Albuquerque
Berthe said:
Dear Sushi,

Thank you for sharing your experience with me. On the Dutch blog there were several other patients on MAF having difficulties with their sleeppattern as well. May I ask what you take as medication or is it to private to share? I can understand.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com
Click to expand...

No secret. I take ambien, but it has another name in Europe. The most standard sleep med. It works for me and I need sleep.

Best wishes,
Sushi
 
filfla4

filfla4

Senior Member
Messages
236
Berthe said:
I just want to ask anyone on Gc Maf if they also experience problems with sleeping despite taking medication. I usually take something to go to sleep and Trazolan to sleep through, but after six injections I wonder if the effect of my sleepmedication is diminshed by the Gc Maf? I only sleep five hours a night depsite being exhausted I can't sleep during the day. (This has always been a problem to me during my illness). If someone else is experiencing the same difficulties, please let me know.

Love,
Berthe
Click to expand...

Hi Berthe, I'm having the exact same problem. I use Stilnox as a sleep aid. I normally sleep between 8 to 10 hours. I've had 11 shots of Gcmaf. In the last 10 days I've been getting to sleep ok with the Stilnox but then waking up after just 4 or 5 hours and am unable to get to sleep again. It's pretty difficult to cope with my day when I've been awake since 4am and still have things I need to do. I've never been able to sleep much during the day. I discussed this with KDM last week during my phone consultation. He prescribed Ritrovil drops instead of the Stilnox. I'm a bit apprehensive about switching, particularly since I'm travelling this week and need to be alert. Has anyone tried Ritrovil?

filfla4
x
 
froufox

froufox

Senior Member
Messages
440
Hi folks

Hope everyone is doing ok. I got my report back from KDM this morning...one of the problems I seem to have is abnormal proteins.. its the PrPc test (prion protein test)...mine was 4.45 (ref 10-100). It means that the cell surface proteins are dysfunctional (aberrant prions). The surface proteins control ion channels and KDM says in the report that because of this problem I will have some difficulties responding to GcMAF, which was obviously a bit disappointing to find out! My GcMAF journey has been very up and down but that could be due to other factors aswell, eg diet. Just wondered if anyone else had an abnormal PrPc test?

I also have extreme lymphopenia, high elastase, high CD14, perforin, C4A, most of which I knew already. Also the only cytokine raised is IL-8. Urine neurotoxin result was positive (3+) but I don't know what that represents.

Anyway I have a phone consult with KDM tomorrow morning so will obviously discuss all this with him then, but was just wondering if anyone else had a similar result?

Thanks
 
Sushi

Sushi

Moderation Resource Albuquerque
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Location
Albuquerque
filfla4 said:
He prescribed Ritrovil drops instead of the Stilnox. I'm a bit apprehensive about switching, particularly since I'm travelling this week and need to be alert. Has anyone tried Ritrovil?

filfla4
x
Click to expand...

Ritrovil is the same as clonazepam so many of us are on it. I take small doses every day and a small dose at night. It does help with staying asleep but I take it with the Stilnox (ambien).

I'd try it very low dose. It doesn't make you dopey.

Sushi
 
R

Rrrr

Senior Member
Messages
1,591
filfla, i have heard the clonazepam (also known as Klonopin) can be addictive, whatever that means, and be very hard to get off of. i know people who spent years trying to get off of it. but i also know people who find it helpful to take.
 
Daffodil

Daffodil

Senior Member
Messages
5,894
hi all. i am wondering if someone could point me to where i can read the full article by Yamamato, indicating he cured people with HIV. thanks:)
sue
 
mojoey

mojoey

Senior Member
Messages
1,213
It seems many people have not gotten their HLA-DR tests done? Perhaps a better category to add to the public spreadsheet might be c4a then? ESP since KDM is now testing for this?
 
C

cansado

Messages
85
Location
USA
froufox said:
Hi folks

Hope everyone is doing ok. I got my report back from KDM this morning...one of the problems I seem to have is abnormal proteins.. its the PrPc test (prion protein test)...mine was 4.45 (ref 10-100). It means that the cell surface proteins are dysfunctional (aberrant prions). The surface proteins control ion channels and KDM says in the report that because of this problem I will have some difficulties responding to GcMAF, which was obviously a bit disappointing to find out! My GcMAF journey has been very up and down but that could be due to other factors aswell, eg diet. Just wondered if anyone else had an abnormal PrPc test?

I also have extreme lymphopenia, high elastase, high CD14, perforin, C4A, most of which I knew already. Also the only cytokine raised is IL-8. Urine neurotoxin result was positive (3+) but I don't know what that represents.

Anyway I have a phone consult with KDM tomorrow morning so will obviously discuss all this with him then, but was just wondering if anyone else had a similar result?

Thanks
Click to expand...

My PrPc was 7.8 and I have never heard of this problem regarding to the GcMaf. All my other results differ from yours. My GcMaf journey is one of low response, and I have been put on a 2 month break. Hang in there Frou!
 
C

cansado

Messages
85
Location
USA
Just wanted to inform you that after 34 GcMaf shots KDM advised me to take a 2month break. My mild side effects which I experienced in the beginning of the treatment recurred and that was an indication that I have had enough GcMaf for the moment. These two months I will try to recuperate, relax, work on my art works and do everything else what is necessary to feel better.
 
C

cansado

Messages
85
Location
USA
Rivotril

Yes I have tried it for years, and I was on a low dosis. It was no problem for me but I have never been on other sleep medication so I cant say anything about Rivotril as a substitution for Stilnox.
 
Forebearance

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
I liked your idea, Joey.

I wish more people would get their HLA-DR tests done. Finding out you have high C4a just tells you that you're being poisoned by something. The HLA-DR test tells you what your own personal Kryptonite is. I wonder if people who react badly to GcMAF are pre-burdened with a lot of neurotoxins.
 
mojoey

mojoey

Senior Member
Messages
1,213
So I've received word that KDM's office, staff, and the Eurovolley hotel are heavily scented. Just curious how this has managed to fly under the radar for so long. Are most patients that have gone to see him not MCS? I am terribly reactive to chemicals. Or is it not customary to accommodate your patients' kryptonites in Belgium?
 
mojoey

mojoey

Senior Member
Messages
1,213
It really is too bad forebearance. Shoemaker genotypes would be more telling IMO than all the other diagnostic tests put together about which subset of patients gcmaf is most likely to be helped

Forebearance said:
I liked your idea, Joey.

I wish more people would get their HLA-DR tests done. Finding out you have high C4a just tells you that you're being poisoned by something. The HLA-DR test tells you what your own personal Kryptonite is. I wonder if people who react badly to GcMAF are pre-burdened with a lot of neurotoxins.
Click to expand...
 
C

Charles555nc

Senior Member
Messages
573
Hey Mojoey,

Says on the spreadsheet that your getting treatment in Ohio, US. Can you explain more about that? I would totally drive to Ohio to get a reliable GcMAF treatment. If you dont want to discuss publicly, my email is charlesbeutt@gmail.com. Thanks.
 
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