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

[froufox]

Hi All

Just wanted to let everyone know that I had it confirmed with Redlabs that I am Ff and Bb so I am definitely heterozygote in both categories and so classed as a moderator responder, which tallies with the currently available data. So I am happy that there is hope that I will have at least a partial response to the GcMAF. But we will see!

Consuegra that is very curious that u got the opposite results to what u would have expected. I wonder who is wrong. Did u find out anything more about that?

Thanx for sharing that report Joey. Its great to hear that person is responding so well, though as u say they dont seem to be a particularly severe case and they have the advantage of the right genotype, plus being on the other treatments. But still agree with Sergio that it is encouraging.

 

[Overstressed]

Hi All,

I just received my 31st injection with Gcmaf, and I think I can say what Gcmaf can do. Personally, I think I'm -at best- a moderate responder. My doctor(not KDM) told me some people need 35 injections with GcMaf. Actually, I think no one knows really how much you need, and it also depends on the quality of the GcMaf itself, your genotype, and maybe some other factors too.

What has done GcMaf for me, after 31 injections ? My energy increased, I'm more active at work, I work full-time, I travel 160km/day for my work. So, I'm in average 12hrs away from home. My sleep improved, when I wake up in the morning, I feel rested. My food intolerances improved. My vision has improved, still a bit blurry, however, but my eye-pain improved also. My cognitive function has improved too. My joint pain and muscles have improved too. My tinnitus improved, but is still there. One researcher I know, told me that this is her greatest concern of all my symptoms(tinnitus).

However, I'm not healed. Last week we had a lot of snow, and I shuffled some snow, but after that, I got heavy headache, so badly that I had to go back home from work. Perhaps this was a cold I had, not really clear.

I have asked for a genotype test at redlabs, and a Nagalase test in the Netherlands. So, as soon as I have the results, I will post them here, so we can all check what GcMaf does. I must say, I have had regularly performed some blood tests, and at first I thought that things were improving in the right direction(e.g. CD4/CD8 ratio improving) but it seems that it's typical for CFS to have a high CD4/CD8 ratio ? The percentage of my CD4 are going slowly, but steady upwards, so that's a point of concern, right now. My ratio is 1.42 at this very moment.

Anyway, with my experience, I think Gcmaf can do very nice things to EVERYONE!, either you are a non-responder, partial responder or high responder. I totally agree with KDM.

OS.

 

[Alexia]

This is great news overstressed! may your improvements continue stronger and stronger!!
Please let us know how it goes with you in the future, we are all anxious to know!

I don't know if you can tell us who is your doctor ...

 

[aquariusgirl]

sorry to be dense, but can anyone interpret my yasko VDR results for me in terms of being a good/indifferent candidate for gcMaf?

I'm +/- for Foq, Taq & BSM.

thanks

 

[filfla4]

This is very encouraging news Overstressed. Thank you so very much for posting - we need all the information we can get!!

 

[guest]

sorry to be dense, but can anyone interpret my yasko VDR results for me in terms of being a good/indifferent candidate for gcMaf?

I'm +/- for Foq, Taq & BSM.

thanks

That should be: Bb Ff = moderate responder

 

[mojoey]

I think i's important to mention that OS was actually working full-time, although he struggled to do so, before he started Gcmaf. The above post could be interpreted as Gcmaf enabled you to work full-time.

Thanks for posting an update OS, and hope you continue to improve!

Hi All,

I just received my 31st injection with Gcmaf, and I think I can say what Gcmaf can do. Personally, I think I'm -at best- a moderate responder. My doctor(not KDM) told me some people need 35 injections with GcMaf. Actually, I think no one knows really how much you need, and it also depends on the quality of the GcMaf itself, your genotype, and maybe some other factors too.

What has done GcMaf for me, after 31 injections ? My energy increased, I'm more active at work, I work full-time, I travel 160km/day for my work. So, I'm in average 12hrs away from home. My sleep improved, when I wake up in the morning, I feel rested. My food intolerances improved. My vision has improved, still a bit blurry, however, but my eye-pain improved also. My cognitive function has improved too. My joint pain and muscles have improved too. My tinnitus improved, but is still there. One researcher I know, told me that this is her greatest concern of all my symptoms(tinnitus).

However, I'm not healed. Last week we had a lot of snow, and I shuffled some snow, but after that, I got heavy headache, so badly that I had to go back home from work. Perhaps this was a cold I had, not really clear.

I have asked for a genotype test at redlabs, and a Nagalase test in the Netherlands. So, as soon as I have the results, I will post them here, so we can all check what GcMaf does. I must say, I have had regularly performed some blood tests, and at first I thought that things were improving in the right direction(e.g. CD4/CD8 ratio improving) but it seems that it's typical for CFS to have a high CD4/CD8 ratio ? The percentage of my CD4 are going slowly, but steady upwards, so that's a point of concern, right now. My ratio is 1.42 at this very moment.

Anyway, with my experience, I think Gcmaf can do very nice things to EVERYONE!, either you are a non-responder, partial responder or high responder. I totally agree with KDM.

OS.

 

[RivkaRivka]

OS, it is very generous of you to take the time to post your results on GcMAF. i sure hope we can hear more from you and other patients on this treatment. i also wonder how the even more ill patients will do on it...?

 

[aquariusgirl]

vit d receptor

thank u diesel

 

[Sushi]

Thanks so much OS,

I just today had blood drawn to send to RedLabs (from the US) to get my VDR genotype tested. I also ordered an inflammatory cytokine profile from VIPdx. I am hoping to have all this "in hand" for my first visit with KDM, and that he will agree to prescribe GcMAF. What I am hearing is that it may take longer for CFS patients to respond to GcMAF than other types of patients--or it could be dependent on the genetics of their VDR.

Thanks for giving us hope and feedback. No treatment is going to be a miracle at this stage, but any degree of "better" is wonderful.

Thanks again for posting this,
Sushi

 

[Overstressed]

I think i's important to mention that OS was actually working full-time, although he struggled to do so, before he started Gcmaf. The above post could be interpreted as Gcmaf enabled you to work full-time.

Yes, that's completely true. I was working full-time before, but it was just a matter of time I would completely crash. In that sense, GcMaf has rescued me from that disaster. But I continue to have ups and downs, but the downs become less and less.

Thanks Joey for clarifying this up, I don't want to post any misleading information...as I know we all want true information.

Take care,
OS.

 

[acer2000]

My yasko test from 2007 says:

VDR Bsm/Taq ++
VDR Fok +-
VDR Taq ++

What does this mean with respect to GcMAF?

 

[Crappy]

Several of us have postulated theories, but the reality is only one person has received and posted results from both places to compare them. To make matters more confusing, mojoey has apparently heard Dr. Cheney believes there is a correlation between VDR polymorphisms, and I have heard Dr. Cheney has not formed an opinion about relative indicators yet. If this all isn’t confusing enough; BioGroup Labs (the lab Dr. Cheney uses) told me last week that VDR polymorphism is not an indicator of GcMAF effectiveness; they recommend trial and error.

Given the desperation of most of us, trial and error may be the best method, until correlations are better understood.

I commend those who jump into the fray; volunteering themselves.:victory:

I think it would be prudent to realize, as you volunteer your money and your body, that most attempts to treat CFS/ME have proven ineffective. After twenty plus years, I hope that is finally changing.

Not to rain on anyone’s parade; GcMAF appears to be truly experimental. In short, no one seems to know. Not even the makers or doctors; YET!

Hope this helps.

 

[Sushi]

Several of us have postulated theories, but the reality is only one person has received and posted results from both places to compare them. To make matters more confusing, mjoey has apparently heard Dr. Cheney believes there is a correlation between VDR polymorphisms, and I have heard Dr. Cheney has not formed an opinion about relative indicators yet.
Hope this helps.

Hi Crappy,

Dr. Cheney is asking his patients who want to take GcMAF to get their VDR status tested with Genova's Osteogenomic profile. However this profile only tests the Bsm allele. RedLabs tests both the Bsm & the Fok. Presumably he is using the Genova test cause it is such a hassle to send a blood sample to Belgium--I know--I just did it!

Sushi

 

[guest]

My yasko test from 2007 says:

VDR Bsm/Taq ++
VDR Fok +-
VDR Taq ++

What does this mean with respect to GcMAF?

Ff and bb, I think.

 

[vli]

Diesel I don't see the harm. I called them yesterday after reading how Ronan got his VDR results after only a day (?), but the lady who answered emphasized to me that the VDR takes 4 weeks and the XMRV culture 10 weeks (she found nothing searching my name on the computer anyway).

 

[filfla4]

Diesel, I called Redlabs on Monday of this week as I had a problem making a transfer to settle my invoice. The person I spoke to was very efficient and friendly. She told me that some of my results had already been sent to KDM's clinic and that she was not in a position to give me results herself. I duly called KDM's clinic and the receptionist informed me that they do not give out results - I would have to wait until all the results were in and KDM had written up my report. I was tested at the clinic on 15th & 16th November - the waiting game is driving me loopy!

 

[froufox]

Hi Diesel, I called Redlabs to get my VDR results a couple of weeks ago and as with fifla4 the admin worker said she wasnt in a position to give them to me over the phone, but also because I had had another test done (the methylation cycle polymorphisms one), which takes a further few weeks to do, I would have to wait until all my results were back before they sent them all out together.

However as I didnt want to wait I ended up emailing them and asking for my VDR result telling them that i needed to know about my responsiveness to the GcMAF as soon as possible, and then my VDR results were emailed me to me straight away. So perhaps if u say something similar, that KDM needs your results asap to work out a treatment plan they will email them to u too. Good luck.

 

[Ronan]

Diesel I don't see the harm. I called them yesterday after reading how Ronan got his VDR results after only a day (?), but the lady who answered emphasized to me that the VDR takes 4 weeks and the XMRV culture 10 weeks (she found nothing searching my name on the computer anyway).

Hi Vli,

I now the guy who runs Redlabs personally so he pushed through the VDR results quickly for me as i was seeing KDM the following day. Usually it takes a good bit longer to get the test done.

 

[garcia]

Hi all,
I got my redlabs VDR genetics results back and they are the opposite of what they are supposed to be.
I should be high responder for FOK and low responder for BSM (according to Yasko results & Yamamoto paper), but according to redlabs I am low responder for FOK and high responder for BSM.

Now for me personally it probably doesn't make much difference (since I am high in one, low in the other). Also for people who are heterozygous obviously it wouldn't make any difference (they will still be heterozygous). But for people who are told that they are e.g. high in both, or low in both, it clearly does make a difference.

So there are a number of possibilities:

1. Yasko's genetics results are wrong - very unlikely I would have thought
2. The way Yamamoto's paper is reported is wrong - again unlikely I would have thought
3. Our interpretation of what is big B, little b, big F and little f is wrong - unlikely
4. Redlabs have made a clerical error and have got the interpretation back-to-front

Of all the options, number 4 seems the most likely to me, but that is just my personal opinion.

I have contacted redlabs and await their response. Hopefully they can clear up whether we have made a mistake or they have.