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

[Overstressed]

Hi Garcia,

good that you have something to compare with. I have the test also performed at Redlabs, but have not any previous test done on this matter, so, once I receive my results, I don't know whether they are reliable. Unless I have the test performed somehwere else. But at another lab, these are expensive tests(500 Euro's).

I hope things will clear up for you!

Take care,
OS.

 

[garcia]

@Garcia: In my eyes Redlabs should use a more transparent way for the results regarding VDR status. They neither use +- or BbFf and just say low/high responder, correct?

Yes absolutley Diesel. I agree with you. I guess they are just trying to make it simple for patients, but it leaves the possibility open that they are making an error. Anyway will report back as soon as I hear anything.

 

[Sushi]

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.

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

Hi Garcia,

Great that you got your VDR results back--not great that they don't match Yasko's!

I just sent my blood to Redlabs from the States for the VDR. I got an email saying that it had been received safely--good! I believe your test was ordered by KDM--mine was ordered by a US doctor. Did you have any difficulty getting your results? May I ask how you did it?? Some of KDM's patients have reported that Redlabs wouldn't tell them the results and then KDM's office said that they would have to wait for KDM's written report.

Also, how long did it take them to complete your VDR test?

I hope we can clear up the discrepancies between Yasko results and Redlabs.

I guess another question we don't know the answer to is whether KDM's clinical results with GcMAF correlate well with the VDR results from Redlabs. Anyone here taking it long enough to report on this?

Thanks,
Sushi

 

[Sushi]

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.

Hi Ronan,

Hope you are doing well--or at least not having unpleasant reactions to GcMAF. Do you have a doctor or nurse inject it into a vein--or can it be injected IM? And how often does KDM recommend that you take the injections? I have heard different reports.

And back to the Redlabs question, would you feel comfortable asking your contact at Redlabs if they could report the VDR results more specifically--such as bb; FF--and also include their interpretation--such as high responder; low responder? This would help us correlate our results with the published research.

Thanks!
Sushi

 

[garcia]

I believe your test was ordered by KDM--mine was ordered by a US doctor. Did you have an difficulty getting your results? May I ask how you did it?? Some of KDM's patients have reported that Redlabs wouldn't tell them the results and then KDM's office said that they would have to wait for KDM's written report.

Also, how long did it take them to complete your VDR test?

Hi Sushi,
I'm not actually with KDM yet (1st appointment in January), so I put down the name of another doctor (someone who redlabs don't know). As such they sent the results to me (once I had paid them). Given the problems KDM patients are having personally I wouldn't put his name down, but that is just me! It took about 3 weeks for them to do the test, and another week for them to post the invoice to me, so 4 weeks total.

I hope we can clear up the discrepancies between Yasko results and Redlabs.
Thanks,
Sushi

Yes definitely. It would save those already with Yasko results the hassle/expense of getting this test.

 

[Lou]

Hi all,

Without knowing my VDR status I ordered six doses of gcmaf(they call it GHA-95, their version I guess). They told me it should ship Monday or Tuesday and arrive at my doctor's office in about 3 weeks. I'll try to let all of you know how it goes with me.

BTW this order was made with BGLI. For those interested in price I can offer the following: Near the beginning of this thread seems like I recall reading it was about one thousand dollars per dose. Perhaps this was clarified later, but good news (at least when ordering through BGLI) it's far less. It's one hundred euros, or about $133.00, per dose. The other thing is that you start out on one fifth of a full dose and gradually increase amount so that six doses, which cost me $888.oo including $45.oo bank wiring fee, should last far longer than six weeks. I understand some people get 'stuck' at some partial dose, for instance, 3/5ths dose, which for all I know may or may not slow your health progress, but it certainly should make it more affordable for some. Hope this helps.

 

[Ronan]

Hi Ronan,

Hope you are doing well--or at least not having unpleasant reactions to GcMAF. Do you have a doctor or nurse inject it into a vein--or can it be injected IM? And how often does KDM recommend that you take the injections? I have heard different reports.

And back to the Redlabs question, would you feel comfortable asking your contact at Redlabs if they could report the VDR results more specifically--such as bb; FF--and also include their interpretation--such as high responder; low responder? This would help us correlate our results with the published research.

Thanks!
Sushi

Hi Sushi,

Still early days on the GcMAF and got a bad cold as well so i have no idea yet if its doing anything. I initially thought i had to get it IV but it turns out iyou can do it IV or IM so i am doing it myself IM. I dont know about getting better reports from Red Labs yet regarding the VDR results, i dont like hassling the guy i know too much. I sent an email last week to the general office about getting my VDR results sent to ne as i dont have a copy but havent heard back yet either.

 

[RivkaRivka]

Hi all,

Without knowing my VDR status I ordered six doses of gcmaf(they call it GHA-95, their version I guess). They told me it should ship Monday or Tuesday and arrive at my doctor's office in about 3 weeks. I'll try to let all of you know how it goes with me.

BTW this order was made with BGLI. For those interested in price I can offer the following: Near the beginning of this thread seems like I recall reading it was about one thousand dollars per dose. Perhaps this was clarified later, but good news (at least when ordering through BGLI) it's far less. It's one hundred euros, or about $133.00, per dose. The other thing is that you start out on one fifth of a full dose and gradually increase amount so that six doses, which cost me $888.oo including $45.oo bank wiring fee, should last far longer than six weeks. I understand some people get 'stuck' at some partial dose, for instance, 3/5ths dose, which for all I know may or may not slow your health progress, but it certainly should make it more affordable for some. Hope this helps.

lou, thanks for this! please keep us posted. very exciting stuff!!!!

 

[RivkaRivka]

Hi Sushi,

Still early days on the GcMAF and got a bad cold as well so i have no idea yet if its doing anything. I initially thought i had to get it IV but it turns out iyou can do it IV or IM so i am doing it myself IM. I dont know about getting better reports from Red Labs yet regarding the VDR results, i dont like hassling the guy i know too much. I sent an email last week to the general office about getting my VDR results sent to ne as i dont have a copy but havent heard back yet either.

sorry to hear of yr cold, ronan. frustrating that that gets in the way of seeing results when trying something new, but it does! great that you can do the shots IM. that is a gift indeed. much easier.

please keep us posted as frequently as you feel able! we are here to offer support and to learn from your experiment!

 

[Cloud]

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.

The results were emailed to you via your request? I've never heard of that happening here. How did you get them to do that? Signed release? Doc talked to them?

 

[froufox]

Hi Cloud

Yes I just emailed them and asked for my results explaining that I had to make a decision about booking an appointment to see KDM as as I was interested in the GcMAF therapy and I needed to know my results as soon as possible. Actually I had already made an appt to see KDM anyway but i thought telling them that might persuade them to release the results, and luckily in my case it worked.

They did not ask for the contact details or signature of the health practitioner whose name I put down on the form either.

So I guess i was just lucky as that is obviously not the normal procedure.

 

[Sushi]

The results were emailed to you via your request? I've never heard of that happening here. How did you get them to do that? Signed release? Doc talked to them?

I just sent blood to Redlabs and they don't ask for a requistion signed by a doctor--they just ask your doctor's name. If you are seeing De Meirleir they seem to want to send the results to his office and let them tell you. But, I put a US doc and am hoping they will also give them to me.

Someone else who is not yet a De Meirleir patient was told that he could get his own results. He will try this week. Seems like the law is different from the US.

Sushi

 

[Cloud]

Well gee you guys, I never even asked VIP because I thought there was just no way they would send me lab results. Maybe they will, especially since they know me quite well now and because of having Dr Peterson for the doc. I do get lab results from local labs after signing a release....but it's not the norm (and I went to college with these people).

 

[garcia]

I just sent blood to Redlabs and they don't ask for a requistion signed by a doctor--they just ask your doctor's name. If you are seeing De Meirleir they seem to want to send the results to his office and let them tell you. But, I put a US doc and am hoping they will also give them to me.

Someone else who is not yet a De Meirleir patient was told that he could get his own results. He will try this week. Seems like the law is different from the US.

Sushi

Red labs sent me my test results direct. I put down a name of a doc they do not know (they don't even ask for the doctor's contact details on the request form).

 

[serg1942]

Redlabs told me they were going to send the tests results to me when they were ready, by postal service.

This is the normal procedure in Spain and mostly in Europe too, as tests are yours (as is your blood!). You pay for them (I know is different in the USA).

Other thing is that Prof De Meirleir wants to have the tests sent to him first. This is a different situation.

Regards,
Sergio

 

[garcia]

Just a note to say I still haven't received a reply from redlabs over the discrepancy in the VDR results between them and Yasko's testing.

I'm not sure I could recommend the redlabs VDR test to anyone at this point. If you do get tested, I would advise that you tell them to send you the results in a form which you can cross-validate (i.e. bbFF or ++ -- etc.). Merely stating "high/low responder" is not transparent enough for my liking.

 

[leela]

This is so cool! It's like our own scientific research study without all the red tape and politics.
The patient community is getting so much more empowered and educated by being able to talk together like this, in real time :victory:!!

 

[garcia]

This is so cool! It's like our own scientific research study without all the red tape and politics.
The patient community is getting so much more empowered and educated by being able to talk together like this, in real time :victory:!!

Leela, you are so right! I am very proud to be part of this pro-active patient community who are seeking answers now. I feel very privileged.

Hopefully this is just the start of patient empowerment, not only in activism, but (for me) more importantly in treatment.

Edit:
P.S. Thanks to a suggestion by Sushi, my request (for info on redlabs VDR test) has been forwarded to the relevant lab. Lets see if they reply this time.

 

[Overstressed]

Hi all,

I'm eagerly awaiting my VDR genotype results, it should arrive any day at my family doc's practice. Anyways, I want to report you the results of the Nagalase test I did a month ago. That was after exactly 27 injections with Gc-Maf. I must say, I have no baseline, so, I don't know from which value I'm coming from.

Here's my result:

Nagalase: 0.7 [Ref. 0.32 - 0.95]

It is within normal range, though, while I was at the lab, I talked to the guy from the lab who's responsible for the test, and knows Dr. Yamamoto too, told me that people with CFS tend to have low Nagalase levels. So, I wonder whether this is a useful marker.

Anyways, I will continue Gc-Maf and perhaps I will have this test repeated after a while to see whether it decreases more. At least, I have a baseline now. With cancer patients, it is typical that Nagalase levels are sky high...

Take care,
OS.

 

[Sushi]

Leela, you are so right! I am very proud to be part of this pro-active patient community who are seeking answers now. I feel very privileged.
Edit:
P.S. Thanks to a suggestion by Sushi, my request (for info on redlabs VDR test) has been forwarded to the relevant lab. Lets see if they reply this time.

Hi Garcia,

I also wrote to Redlabs to ask that they report the VDR results in a more detailed way that corresponds with the research. They also wrote back to saying that my email was forwarded to the relevant lab.

Anyone else up for requesting this?

Sushi