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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

Crappy

Senior Member
Messages
113
Location
TX
I agree, being ill like this requires a perverse combination of enough hope to still try, but not so much you don’t get crushed if it doesn’t work.

I applaud those who try things in an effort to find the answer. Admirably, people in this forum seem willing to help each other and share information. Information these Drs. have been hoarding, to establish a competitive edge.

"A scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it.
- Max Planck"

I believe helping each other will be the only way this overwhelming obstacle will be defeated. The failure of Drs. to share information is responsible for the lack of any significant treatment breakthroughs; and many unnecessary deaths to date. Doctors enjoy the spoils of being protected in a capitalist society, un-American! (They believe to their boots, they deserve unfair protection.) Thankfully, people exist that have the foresight to create things like this forum and the Whitmore-Peterson institute. Their insight, and other examples, is helping spur a new era in medicine. Hopefully uncooperative doctors won’t be able to hinder advancement much longer, momentum is building.

There is no excuse for not sharing significant findings anymore; only a lazy fool would wait for the next conference to share knowledge in the “NetMeeting” age. No travel time or expenses are required, and the advantages created by real-time sharing significantly speeds pyramiding information, generating quantum leaps in exponentially growing knowledge. Techniques engineers have been using for years; otherwise Pixar and its computer generated animation would not exist; for that matter, cell phones or computers would not exist as they are either. Chipmakers are a shining example of the benefits of competition, while doctors on average, exhibit the poor qualities of an industry that enjoys the unearned fruits of a protected market; too protected.

Many Drs. have pieces of this puzzle, unfortunately their greed, childish mentality and unwillingness to consider other concepts, keeps the puzzle from ever being assembled. Their shortcomings cause more people to die. In a just world, doctors would be held accountable for the suffering their greed and lack of cooperation causes. Doctors’ pettiness deserves significant press coverage. (If they won’t act for the good of others, perhaps shame would motivate them.) One must wonder how the average modern doctor personally justifies their level of conceit and arrogance; contrasted with how little they truly understand.

It appears the respect society has given these professionals still needs to be earned.
 

Tony

Still working on it all..
Messages
363
Location
Melbourne, Australia
It's not quite as bad as it may seem. There is a group of about 50 ME/CFS researchers and doctors worldwide who talk and meet occasionally, exchanging ideas and treatments etc using email and old fashioned devices like telephones...:) The problem is as it has always been, $'s for biomedical research which would eventually transfer into treatments.

Maybe GcMAF will be one treatment that gives at least some of us a better quality of life. There's some indication it's doing this and I wish I knew more. If it gives even some degree of increased function or simply feeling less sick, it'll be worthwhile. By itself it doesn't need to be a magic pill (injection) or 'cure', at least from my perspective.
 

serg1942

Senior Member
Messages
543
Location
Spain
Hey guys,

I’d just like to point out you 2 things:

1- Sometimes some therapies work. LDN, for instance chanhed my life…(Still is a bad joke, but at least I now have the energy to think about it!)

2- The pieces of the puzzle are fitting together…I got poisoned by Hg from amalgam fillings. Then Hg was the culprit…When I learned about Rich/Yasko’s theories, everything fitted perfectly: Hg inhibits methylation…A failure in methylation can explain almost everything in CFS…Then I couldn’t restore the methylation cycle as most of PWC's.... In the meanwhile, LDN (that is known to stop replication of HIV –coincidence???-) helped me more than anything else to date…Finally I find out I’m XMRV+…XMRV happens to be a retrovirus, what means that methylation is needed to silence its genome (casualty again???). In short: Everything is following a pattern, and the picture is being narrowed…

Well, Just a few thoughts while resting for Thursday, when, as a loyal and willing guinea pig, I am traveling to Brussels to run some tests on Redlabs… ;-)

Saluditos,
Sergio
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK

Well, Just a few thoughts while resting for Thursday, when, as a loyal and willing guinea pig, I am traveling to Brussels to run some tests on Redlabs ;-)

Saluditos,
Sergio

What are you having tested from Redlabs Sergio?
 

serg1942

Senior Member
Messages
543
Location
Spain
Hi Garcia,

Yes, they are listed in the post Vli indicates. These are the ones I think I should do as "basics":

- Soluble CD4 (SCD14)
- C4a serum levels (C4AS)
- Proinflamatory Cytokines (CYTS)
- VDR Polymorphisms Fok1, Bsm1 (GVDR)
- Nagalase activity
- Th1/Th2 cytokines (CYTH)

I am very doubtful about R-Nase-L and Elastase...What do you think about them? Any other test offered by Redlabs you think is also "basic", that I may be forgetting?

Thanks,
Sergio
 

Navid

Senior Member
Messages
564
Hi Garcia,

Yes, they are listed in the post Vli indicates. These are the ones I think I should do as "basics":

- Soluble CD4 (SCD14)
- C4a serum levels (C4AS)
- Proinflamatory Cytokines (CYTS)
- VDR Polymorphisms Fok1, Bsm1 (GVDR)
- Nagalase activity
- Th1/Th2 cytokines (CYTH)

I am very doubtful about R-Nase-L and Elastase...What do you think about them? Any other test offered by Redlabs you think is also "basic", that I may be forgetting?

Thanks,
Sergio


serg: i am very ill with severe me/cfs and test poz for the retrovirus...but my elastase came back normal...just an FYI...that it may not mean much...it doesnt obviously in my illness...elastase = normal. I=very sick.. : )
 

serg1942

Senior Member
Messages
543
Location
Spain
Ok, my brainfog is WORSE than I thought! ;-) Sheba it's you!!! ;-)

Yeah, kinda cool! then i am XMRV POZ...:thumbsup:
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Are you sure KDM is shipping his own Gc.Maf to other countries. I've heard he initially got it from the States, but now he's making it in his own labs. A friend of mine is also positive and a patient of KDM and on Gc.Maf. Because of the two hour travel every week to his office, just for the injection, she wondered if she could take it home and let her GP give it to her. KDM didn't agree. I will see her tomorrow and would love to know if people actually get the Gc.Maf out of the office? I would spare her so much time and energy.

Berthe did you manage to speak to your friend? What did she say regarding KDM and GcMAF?

Does anyone know for a fact that KDM is shipping GcMAF to patients or whether he is only doing injections in his office?

Many thanks,
garcia.
 
Messages
6
Location
Norway
Hi everyone,

I have an appointment with KDM in Stavanger, Norway, this Friday, where he will give me the first injection of GcMaf. I will also start to take Nexavir injections, and continue to take many of the same supplements, probiotics and vitamins that I have been taking since the spring.

I have been treated by him and Dr. Mette Johnsgaard since January 2010, and I have become a lot better since I started the medicine in April (from about 60% to 80-90% now). But since I still have bad days and since I tested positive for MLV related viruses, I will now try to completely beat this by starting the GcMaf and Nexavir treatment.

I'm very nervous (esp since I am terrified of needles..), but I am also very hopeful! I'll try to keep you guys updated on the progression I'll hopefully will be making!
 

Berthe

Senior Member
Messages
136
Location
near Antwerp
Hi Garcia,

Feeling real bad at the moment. Sorry for the delay. I talked to my friend and she told me that she gets it IV. That would be the reason not to give it with her. After ten weeks, it wouldn't be given IV, so she can take it with her to her GP. Does this make sense?

Love,
Berthe
 

Ronan

Senior Member
Messages
122
I had an appointment with KDM today and got GcMAF to take home with me. Got my first injection of it with him but the rest i can get done in Ireland with a nurse. Needs to be kept frozen though so delivery could be a problem for some people.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi Ronan,

Congrats! :victory: How did the injection feel--any response to it afterward? I think they do them IM, right?

And were you able to take the GcMAF back to Ireland with you in some sort of cooler, to keep it frozen? Does "frozen" mean frozen solid--as in you need dry ice, or just initially frozen and packed in freezer packs?

Thanks,
Sushi
 

RivkaRivka

Senior Member
Messages
368
hi ronan,

please tell us more details! this is very exciting.

- did KDM say how many injections you would need? (how many did you take home with you?)
- did he say how his patients are doing with it?
- what was the cost per injection?
- and, like sushi asked, did you feel bad after the injection (immediately after or a day or week after)?

warmly,
rivka
 

RivkaRivka

Senior Member
Messages
368
hi diesel: does KDM need to give the first injection at his office, or can i do the VERY FIRST injection of the KDM-supplied GcMAF with my own doctor, in another country?