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

[Sushi]

The downside of living down under Pretty good weather tho (as you know)

It seems like the price of this is almost fixed. I have gone to the GNC site but they specify that they don't ship to Aus. If I happen to do well on the supplement I will try and find lower shipping price.

Some interesting ( and mixed) reviews of this on amazon. Some people are so impressed they instantly buy shares in the company- others it seems to have no impact for or causes them some side effects that appear might be related to the MAO inhibitor effect? It may be that I would need to be very careful to not have foods high in tyramines when on this supplement. Just a thought.

Thanks for your leads and interesting perspectives. Stay tuned. The stuff will arrive in about 5 days.

You'll be the Anatabloc pioneer!

Sushi

 

[Daffodil]

let me say that starting famvir was the worse decision. the inflammation is unreal. my head feels so swollen, i cannot even sleep. the nausea is horrible too. it is hell! i wonder how long it will take to get to where i was before and how this will impact the course of xifaxan. ughhhh

clearly, the famvir has really increased the immune activation

 

[suzanne]

Daffodil. I hope that you feel better soon. As I know, the more stuff our bodies have to deal with, the tougher it seems to get. I am now 10 years into this illness and I still make decisions that complicate my recovery. Perhaps try and keep it simple until you are definitely stronger- I hope this phase passes soon.

Sushi. Waiting for the Anatabloc delivery is like waiting for Santa to get here. As I seem to be pretty reactive to supplements, I will be cautious about the initial dosing. Get back on this soon, the Ana Queen. Tee hee.

 

[suzanne]

In preparation for introducing the Anabloc, I decided to poke around to see if there were people reporting side effects. The most common seems to be headache. This may be due to a sudden change in the neuro chemical balance ( a bit like when you first start SSRI's). I have always felt dreadful on even tiny doses of these.

I had already formed a view that it would be sensible to titrate up slowly ( perhaps at 1/2 a tablet a day and depending on symptoms, slowly increase over a fortnight or 3 weeks). This seems to fit with the following comment I found:

We recommend starting
vulnerable patients on low initial doses (1-2 mg/day) and escalating gradually.

If I sound a bit anxious- for sure. I am trying to get ahead of myself so that maybe I don't suffer too much if that is possible. I really just posted this in case someone else wants to try the Anabloc down the track.

 

[aquariusgirl]

hi all, i am thinking of switching from kdm's gcmaf to david noakes.. but apparently noakes product is more potent.

is anyone out there diluting noakes' product and if so, how are you doing it?

thanks.

 

[Daffodil]

i want to stop everything, just take famvir, go through hell for a year in bed, and see what happens. is this a bad idea?

i guess its a bad idea.
maybe famvir is hitting something that nothing else can get?

 

[Daffodil]

hmmm i am becoming more and more intrigued by my reaction to famvir....

perhaps i will wait until i am finished with the ritixan and the whole gut issue, then try famvir again. i responded so horribly, it has to be a good sign

 

[Sushi]

hi all, i am thinking of switching from kdm's gcmaf to david noakes.. but apparently noakes product is more potent.

is anyone out there diluting noakes' product and if so, how are you doing it?

thanks.

It is four times more concentrated. Dr. Bradstreet dilutes it for patients. I know of one person here who gets it from Bradstreet for her autistic son and he is doing well on it.

Sushi

 

[heapsreal]

i want to stop everything, just take famvir, go through hell for a year in bed, and see what happens. is this a bad idea?

i guess its a bad idea.
maybe famvir is hitting something that nothing else can get?

its doing something, those reactions dont happen to people with no infections??

 

[Daffodil]

oh God what do i do now

 

[heapsreal]

treatment is know do if its going to destroy you either.
I would try a lower dose first??

 

[Daffodil]

thanks heap. lol i am a nervour wreck when the brain swells up a lot..i am on edge..on the verge of a breakdown it feels like. i cannot make a decision and nothing makes sense.

if we really had chronic EBV, wouldnt we be dead by now with cancer? most of them die quickly..i have done the reading!

 

[heapsreal]

thanks heap. lol i am a nervour wreck when the brain swells up a lot..i am on edge..on the verge of a breakdown it feels like. i cannot make a decision and nothing makes sense.

if we really had chronic EBV, wouldnt we be dead by now with cancer? most of them die quickly..i have done the reading!

we are genetic freaks who survive ebv mainly??

 

[Sushi]

Daffodil

Many of us do have chronic EBV (testing confirms) and we are still, more or less, ticking over.

Sushi

 

[Daffodil]

well i got sick after EBV. right after. it never left. so do i have chronic ebv? antibodies dont need to be high - mine are low. antivirals dont work in the vast majority = valtrex + valcyte didnt work on me......so i fit the bill...BUT...people with chronic EBV HAVE positive PCR...they can culture the virus from the blood.....i never had a positive PCR. people with chronic EBV might not be making antibodies but the virus is THERE

is the EBV hanging out in the tissues for some people??? is it in my spinal fluid? i am starting to want to jump out the window. again

this. is. too. fked. up.

 

[Daffodil]

sorry i am having a nervous breakdown again. pease ignore LOL

 

[Forebearance]

I hope you can find something that helps, Suzanne.
I tried some Curamin and it really disagreed with me. Who knows why. It was not a headache, though. It just made me feel worse.

On another note, after I stopped taking MAF878, my thyroid function appeared to decline sharply. This also happened after I stopped the GcMAF. I am wondering if it might be possible that when a person stops taking MAF, the person's macrophage activity dips lower than before the person began taking MAF. And if this might affect thyroid function somehow. Maybe it might be a temporary dip.

I'm sensing a pattern and am trying to figure it out. I'm trying to research the relationship between Vitamin D and the thyroid.

 

[heapsreal]

well i got sick after EBV. right after. it never left. so do i have chronic ebv? antibodies dont need to be high - mine are low. antivirals dont work in the vast majority = valtrex + valcyte didnt work on me......so i fit the bill...BUT...people with chronic EBV HAVE positive PCR...they can culture the virus from the blood.....i never had a positive PCR. people with chronic EBV might not be making antibodies but the virus is THERE

is the EBV hanging out in the tissues for some people??? is it in my spinal fluid? i am starting to want to jump out the window. again

this. is. too. fked. up.

in the book oslers web, many from lake tahoe who tested positive to ebv tested neg over time without antivirals or specific treatment for some reason. Im the same?????????????????

 

[ukxmrv]

When I stopped the MAF314 the first time I had a period of about 2 months of feeling better ( a platau) and then I began to go downhill again. Could feel the good effect begin to wear off.

The series of flus that I had 4-6 months later was the worst for years but my family and friends also reacted badly in that way. I didn't recover from them in that way they did though. Only started to get better once back on the MAF314.

Oddly I never reacted badly to the Valtrex or the Immunovir but never tried Famvir. Reactivated EBV, CMV in the past,

Healhwise I'm now back to my previous MAF314 level (after 4 months of taking it ) and at a high for the last decade of the disease but not back to the 1999 level.

 

[Shoesies]

well i got sick after EBV. right after. it never left. so do i have chronic ebv? antibodies dont need to be high - mine are low. antivirals dont work in the vast majority = valtrex + valcyte didnt work on me......so i fit the bill...BUT...people with chronic EBV HAVE positive PCR...they can culture the virus from the blood.....i never had a positive PCR. people with chronic EBV might not be making antibodies but the virus is THERE

is the EBV hanging out in the tissues for some people??? is it in my spinal fluid? i am starting to want to jump out the window. again

this. is. too. fked. up.

Daffodil, I am not a doctor or immunologist but I am greatly concerned EBV is hanging around in my organs and tissues. I am not sure any of the cycles of acyclovir have touched it overly much. I need another dr who is up on it but am trying to get my GP to prescribe nexavir. I really think this damn virus is a demonfromhell and MUST be eradicated. I am thinking about you....because yeah, jumping out the window in frustration is part of my feeling...that is when I buy plates from goodwill and go break them in my back yard. Hurling curses at EBV all the while. Hope your day today is marginally better.