Discussion in 'XMRV Testing, Treatment and Transmission' started by Sushi, Dec 28, 2010.
Thanks for correcting that.
Just google BGLI and get an email address. Address your questions to Ingrid. You can purchase a minimum of six doses(about nine hundred dollars including shipment). You'll pay for this yourself, just have a doctor willing to oversee the injections and to accept shipment and storage of the gcmaf. My doctor in an intergrative doctor located in Hattiesburg, Mississippi. Hope this helps.
Am posting this in a couple of places as a prompt answer would be most helpful(I start gcmaf treatment this coming Monday). Here's the thing, my doctor wants me to start on a anti histamine drug, think this is part of the protocol, but I have a lot of trouble with any drug. On top of that, they usually only work once or twice before my immune system negates any positive effect.
My question then is to any of the few that are on gcmaf. Do you take anti histamines? If not, do you think not doing so has caused problems? Many thanks in advance.
Hi Sergio, thanks very much for posting your results!
My Red labs VDR results are exactly the same as yours. And the opposite of Yasko's (as in your case). For you and me it doesn't really matter whether red labs is right or yasko, since we are high in one, and low in the other. But for people who are high in both, or low in both, it makes a big difference. Will be interesting to compare how we both get on with GcMAF.
Wishing you all the best in 2011!,
I am also very sensitive to any drugs. However, I have to take the antihistime since I get hives all over my body and skin erruptions mostly on my face but also over my body and swollen lymphnodes (all indications of IRIS) if I am a couple hours late on my antihistime. I understand that IRIS is serious and MUST be immediately treated or harm could happen. With that said, my husband who shows no sensitivity to any drugs ever, does not have this response going on. We both get very sick from the GcMAF but feel good once it has gone through our system. However, while it is working, he experiences everything I do except for the swollen lymph nodes and hives etc. He doesn't take antihistimine since after the first shot, he saw that he didn't have a histimine reaction like I did. I would never take it without the antihistimine. I would follow your doctor's orders at all times.
Either of you feel like emailing yasko's office and querying the discrepancy?
Of course, you would need the actual polymorphism sign or whatever it's called.. not this low responder/high responder stuff.
Thank you for that info, Lou.
Thanks for your good wishes! they are reciprocal, of course!
When are you visiting KDM? I think before Sushi and me, on January 24th, right?
What do you think about having a genetic combination not studied in the paper? We are bb/ff, and they studied bB/fF. Do you think the net result would be the same for the function of VDR?
You are right, we'd need the standard nomenclature in order to write to Dr. Yasko's office...I did write to Redlabs asking them to give me the results in a more scientific manner (or in both), and they passed the message on to a woman working in the laboratory (I received the CC). It's been about 2 weeks and I have not heard of her yet...Maybe she is on vacation, or just ignored my request...
Anyway, of course, if, and as soon as I have the results shown with the proper nomenclature I will e-mail Yasko's office.
Happy new year!
Hi aquariusgirl, there doesn't seem much point in emailing Yasko IMHO, as the problem doesn't seem to be at their end. Yasko's lab is reputable, has been going for years and has tested hundreds of people. Also we have a complete transparency in that we know the name of the lab, and the exact genetic result they are telling us (++, +- or --). Then we translate that into bb, Bb or BB etc. Our translation is correct as can be verified from e.g. this quote:
i.e. ff and BB are the polymorphisms (corresponding to ++ on Yasko test). Now for Fok1 I am "--" on Yasko, which corresponds to FF. [As a "sanity check" only 3% of my racial group are ff, so I am very unlikely to be ff]. According to the Yamamoto paper/abstract FF is a high responder. Yet according to Red labs I am a low responder, which would make me ff. Doesn't make sense as it contradicts Yasko. Even completely discounting Yasko, there is only a 3% chance I am ff - a very unlikely occurrence.
So we are left with 2 possibilities:
1. Either the Yamamoto abstract has things the wrong way around and FF is "low responder", or
2. The un-named lab who are doing the VDR testing for red labs have things the wrong way around.
I personally think 2 is much, much more likely. FF is the "correct" version of the Fok1 gene, and biologically should make the VDR work better. So it makes sense that FF is "high responder" to GcMAF.
In any case red labs have passed on my message to the unnamed lab. They have yet to respond. The ball is very much in their court. Until shown otherwise, I personally believe their results are incorrect.
I really hope you are right! I am a "low responder" on Fok 1, hence, according to Redlabs, ff. Thanks for posting that statistically there is only a 3 % chance of that for Caucasians (I'm guessing you mean Caucasions!)
Quite a few of us have written to Redlabs requesting the results in standard nomenclature--and had our emails forwarded. I hope we get a response before our appointments with KDM.
Hi Sushi, I'm not Caucasian. I saw a figure for white americans as 18%, so ff is a much more common allele amongst Caucasian Americans.
I hope we get a response from the lab soon too!
Your personal cfs battle and course of treatment has opened some interesting dialogue and that has been good. Thanks. I gotta part ways on at least one of your comments, though. Nothing really, very minor, but it could be that some of the other long time sick with me-cfs can relate.
When I first got sick there were probablly more that a dozen doctors I saw the first couple of years. And, I got about as many different diagnoses, most of them delivered in an assured manner about what was going on with me. Kinda opened my eyes, and i still remember holding eye contact with the last few doctors an extra moment or two, and thinking, if not always saying, "Oh, really?" So, your advise, "I would always follow the orders of your Doctor," doesn't work for me. In fact, if a doctor has that attitude, 'giving orders'(and I have to say I think there's been a seachange for the better in attitudes from doctors in the last decade or so) then for me, at least, it's been better that I move on. Some of my 'doctors orders' back then nearly killed me.
Cindy, don't take this personally, think maybe this is just something I wanted to say out loud for a long time.
If you can find a white blood cell donor for apheresis who responds well to GcMAF, then perhaps you can use Zheng Cui's LIFT, Leukocyte InFusion Therapy, and get those activated macrophages from the donor. Their white blood cells will be replaced within a few days anyway. That would be one way not to lose hope.
Or wait till summer (somewhere) and use LIFT from someone who's white blood cells are seen to attack cancer cells in vitro. They would seem to have activated neutrophils and macrophages naturally, though only in the summer. Cui reported that ten to fifteen percent of his test subjects are in that group.
I totally agree. I haven't followed everything that each doctor has said since somethings make me better and some made me worse. However, if you have a really good CFS doctor then it is easier to follow what they are saying since they know more than other doctors. But I do agree with you. I get a second opinion on everything from any one doctor before I take it and research it for side effects etc.
I got a copy of my VDR Genotyping results and they were not as bad as i had first thought. According to RED Labs my BSM1 is "Moderate to Low" and my FOK1 is "Moderate Responder". Initially i believed i was a low responder on both so i am a bit more hopeful now.
I am a bit frustrated hearing some patients have their hopes delivered or dashed by their VDR results. We are getting so many mixed messages on gcmaf it seems we have bigger issues to worry about. There is commercial warfare going on out there: KDM is saying his gcmaf is equal to Israel's and that patients with any VDR should be taking gcmaf while his lab continues testing for VDR status, Israel is the only one with a patent and reported that an independent lab had shown BGLI's gcmaf to be ineffective, BGLI is telling customers, predictably, that their product is up to par and also that VDR status doesn't matter. All the while we're breaking the bank to fund their research while they tweak and tweak.
When is a truly independent lab going to come out and do independent validation of macrophage-activating activity in all these versions? Dr Ruggiero told me he had plans to do this, but he is connected with Yamamoto so has a conflict of interest there. Has anyone wondered if atients might be responding to something else in these injections and not just gcmaf? There has been no indepedent testing for adjuvants in these injections.
On another note, the high responder I mentioned earlier told me she had to stop gcmaf after 5 mos because of severe insomnia so it seems even "high responders" may deal with some level of IRIS.
I've just received my lab results from KdM I too am
FOK1 - low responder
BSM1 - Moderate to low responder
I am XMRV+
No mention of gcmaf from KdM am starting a/biotic regime soon so maybe that will come later?
I had the same VDR results, and like others, wonder whether they really predict the success of GcMAF or are even accurate.
Have you had an office appointment with KDM since you got your XMRV + and VDR results? Or was the a/biotic regime presribed by phone or mail? Curious, as I see him in two weeks and will ask to start GcMAF.
I am hoping he will prescribe it as I am coming from the US and really want to start. Have you discussed it with him in person?
And yes, Joey, lots of questions around both the VDR and the sourcing of GcMAF.
No Sushi haven't discussed it with him - think the way to go is get the a/biotics done first, altho I've always been anti don't have many options now as feel too ill, haven't seen him since the first consult in Oct, had a brief t/phone consult end of Dec and got the results in the post last week, you've done it the right way having the blood tests etc first - then the consult- saves so much time. Good luck with everything, its a big trip, even bigger for you
A few more from this forum are seeing KDM this week, so maybe their questions and answers will give us more knowledge here.
Could you phone or write to ask about GcMAF and Nexavir? I know travel isn't easy for any of us. Do you have another appointment scheduled any time soon?
Hope the anti-biotics go well to pave the way for other treatments.
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