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

[Daffodil]

{{{{{{{{{uk}}}}}}}}}}}

 

[Vojta]

Back on GcMAF after one year. First time I was taking it for 32 weeks (1 vial/week) without positive effect. Only headaches and depression. Now KDM prescribed it to me again (1/2 vial/week) and I don't even know why. When I sent him questions about that he didn't answer this one. Second day after first dose of 1/4 vial at clinic I got depression again (also rarely rage episodes). I almost forgot during the year how does it feel. But now I'm sure that it's side effect and I found out it lasts 5-6 days after dose. Does anyone have same problem? How do you manage?

Also advice for those who visiting KDM. Take your previous test results with you and check all tests he prescribes. Because I didn't and when I arrived home I found out he prescribed test for VDR polymorphism again (74€). Of course it doesn't change in time... When I complained about it in email he just replied after week that "it's their mistake"... I don't trust him anymore because either he ignores me as patient or he wants to sell whatever he has (tests, GcMAF which didn't work for me last time). I'm disappointed from this.

 

[Sushi]

Back on GcMAF after one year. First time I was taking it for 32 weeks (1 vial/week) without positive effect. Only headaches and depression. Now KDM prescribed it to me again (1/2 vial/week) and I don't even know why. When I sent him questions about that he didn't answer this one. Second day after first dose of 1/4 vial at clinic I got depression again (also rarely rage episodes). I almost forgot during the year how does it feel. But now I'm sure that it's side effect and I found out it lasts 5-6 days after dose. Does anyone have same problem? How do you manage?
....

Hi Vojta,

Yes, others have reported depression and rage. From what you describe, I'd guess that you are reacting to the activation of a large number of macrophages and perhaps the "killing and cleanup" work they do once activated--this can bring inflammation. So it is not exactly a side-effect of GcMAF but the activation and "deployment" of macrophages.

I think others who have had similar responses did better when the significantly lowered the dose. Inflammation could easily have that effect on the brain. You are still taking a fairly hefty dose, so you would still be activating a lot of macrophages if you reduced your dose considerably.

I hope you can find a way to take GcMAF that doesn't give you this reaction. Many use sort of "micro-doses" and find that this works.

Best wishes,
Sushi

 

[Daffodil]

hi all. just wanted to update. little has changed really. i didn't take the GcMAF for about a month. I felt horrible inititally, then had a couple of good days, then gradually worsened again.

I feel that the acute inflammation has subsided now because my lower back pain is almost gone...so I took 5 ng of GcMAF + hepapressin.

I am waiting for metametrix complete GI profile results.

Feel very much in limbo. Am able to push myself for 1/2 day's activity but then need 18 hrs of sleep for the next 4 - 5 days.

still better compared to before i began the GcMAF.

xoxo

 

[GcMAF Australia]

hi all. just wanted to update. little has changed really. i didn't take the GcMAF for about a month. I felt horrible inititally, then had a couple of good days, then gradually worsened again.

I feel that the acute inflammation has subsided now because my lower back pain is almost gone...so I took 5 ng of GcMAF + hepapressin.

I am waiting for metametrix complete GI profile results.

Feel very much in limbo. Am able to push myself for 1/2 day's activity but then need 18 hrs of sleep for the next 4 - 5 days.

still better compared to before i began the GcMAF.

xoxo

Thinking of you daffodil xOxO

 

[Forebearance]

Thinking of you, too, Daffodil.
Fore

 

[Daffodil]

why are so many people doing well on gcmaf but i am not. i feel so depressed and hopeless

 

[GcMAF Australia]

why are so many people doing well on gcmaf but i am not. i feel so depressed and hopeless

Hi Daffodil is your 25 VitD low and the 1,25 VitD high
If so then benicar may help??

 

[Tito]

why are so many people doing well on gcmaf but i am not. i feel so depressed and hopeless

"So many"? Really? My impression was more that a tiny minority experienced sustained improvement, whilst the majority experienced a short-term or no improvement. Don't blame yourself Daffodil ;-)

 

[ukxmrv]

Daffodil, I know other people doing badly on GCMAF or who have done badly and given up.

Sometimes it's just too strong and it's a matter of finding the right dose. We just don't know why or how or how much. On the MAF878 one poster is taking a toothpick full whilst I can take the full dose. Other things I cannot tolerate even a small amount of.

We're tinkering with these drugs and treatments and even though some people find the tests make sense we just don't have the whole picture.

Not surprised you feel the way you do. It's not fair

(((((((( Daffodil))))))))

 

[Sushi]

As others have, said, I think the key is dosage and there is no "one size fits all."

Sushi

 

[Sasha]

I'm sorry you're having such a bad time, Daffodil. Your experience has inspired me to set up a poll:

http://forums.phoenixrising.me/inde...ths-on-maf-314-maf-878-or-injected-maf.20461/

comparing how people are doing on the various forms of MAF. A bit of a blunt instrument as polls go but there's clearly a big variation in people's experience and I'd like to tap it.

I'm also curious about how many of us are taking MAF now, in any form.

 

[GcMAF Australia]

"So many"? Really? My impression was more that a tiny minority experienced sustained improvement, whilst the majority experienced a short-term or no improvement. Don't blame yourself Daffodil ;-)

Hi Tito
It is a good point that you have raised here.

Certainly the whole GcMAF things needs clarification. people are different. The treatment protocols are different.
People can be very sensitive to it.
One feed-back (or feed forward) that i have received is that often the GcMAF works at the site of the symptoms.
Additionally there is this problem with high vitamin D 1,25 vit D levels.

• Many bacteria are known to intefere with the functioning of VDR by producing inhibitors that bind to it. Then tyhe levels of 1,25 vit D can go up to quite high levels. Olmesartan medoxomil (trade names: Benicar in the US, Olmetec in EU and Canada, WinBP, Golme in India, Erastapex in Egypt) is theorised to bind to the VDR, displacing the bacterial inhibitor and allowing the VDR to function again
• This problem is mentioned at the website of GcMAF.eu http://www.gcmaf.eu/info/, but probably not at other sites such as KMAF
• This mechanism is explained at Chronic Illness Recovery which is apparantly organised better than MP https://chronicillnessrecovery.org/
  They use the benicar. I have some good reports from a couple of Sarcoidosis people>
  I think Dr Durham is using Chronic Illness Recovery (not sure)
  
  Many Regards
  GcMAF

 

[Daffodil]

thanks a lot guys. gcmaf aus, thank you for explaining the functioning of benicar.

interestingly, the tiny 5 ng dose of gcmaf i injected 5 days ago has given me a tiny tiny bit of a boost now, despite my original flare up of inflammation. i thought i should have waited another few months to start gcmaf because of the remaining horrible inflammation from the 20 ng i used to take....so this small boost is confusing. it is very hard to tell what is the disease and what is not.

the fact that stopping tenofovir makes me deathly ill (literally) is another big question mark and concern, always in the back of my mind. i wish someone could give me a plausible explanation as to why this drug helps me...well, some explanation other than a retrovirus-related one.

i am praying the stool test will show something.

thanks for reading and caring
xoxox

 

[GcMAF Australia]

From Dr Don Lewis who says that with GcMAF it appears that the Herxing occurs at the site of the body where the original problem occurs. This seems logical as the immune system starts its work to clear the problem. Also he notices that some people really do need to start at these low doses such as say 5ng. As the bacteria are killed they release compounds that cause the inflammation. This herxing reaction hence gives confusion as to whether the treatment is making you better or worse. A similar explanation may be possible for the viruses.

Daffodil - the only reason for the success of tenofir is the presence of RNA viruses. I dont think they are all retro viruses.
The good news is that GcMAF is good for viral infections, at least some have been treated.

There appear to be many viruses that tenofir could treat
hepatitis, flue, polio, gastroenteritis and others.

Hope that this helps you Daffodil
((XOXOX))

 

[ukxmrv]

I got a HERX/IRIS reaction from the MAF314 but was happy to continue as before that occured my sleep was a little better and progress was good. The Herx/IRIS whatever it was wasn't too severe and didn't last too long.

For some reason not known to me I could cope with this far better than normal.

Contrast this to my reaction to so many other things like antibiotics or immunopro (the milk protein) where the reaction was so bad and so severe that I could not continue. Would have needed a nursing home.

This makes me think that there is more to the old explanations of a Herx and how to deal with them. Alternatively it could be that I have found what works for me purely by chance. Noticed that I could tolerate AB's better (and for once feel better after taking them) if I was also on Imunovir and Valtrex.

 

[Daffodil]

uk..that is awesome. i took comething like immunopro and felt nothing, except nausea from the grossness of the powder LOL

gcmaf aus..thanks again. i also remember reading that tenofovir gel helps prevent herpes viral infections, so i thought maybe it was having some anti herpes virus effect...but then i took anti herpetic drugs for years and they didnt really help

 

[Daffodil]

look what a fool i am! i took 5 ng 2 weeks ago and had 2 better days, so i got greedy again and took 13 ng last week. now i am in a major flare again!!

 

[Sasha]

look what a fool i am! i took 5 ng 2 weeks ago and had 2 better days, so i got greedy again and took 13 ng last week. now i am in a major flare again!!

You're not a fool, Daffodil, you're just impatient to get better! Sorry you've had another flare. I think all of us have done something similar, not just once but over and over. It's a very, very hard lesson to learn and even after decades of illness I still get over-excited by anything that seems to be working and promptly overdo it. I hope your flare dies down quickly!

 

[Daffodil]

thanks sushi