posted
Just found out Nagalase level is 2.1. Our LLMD used to do GcMaf injections for patients who bought it from Belgium, but now the source has dried up.
Where can we get GcMAF?
Is it safe? I read about this on Better Health Guy, and I did a LymeNet search but didn't find any current info.
Does anybody know about the homeopathic version, K-MAF?
Thanks, Judith
Posts: 228 | From Mass. | Registered: Feb 2009
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MichaelTampa
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posted
I recently received an email from the source saying it is now available again. I hadn't heard it had stopped being available, but wonder if you might check directly again to see if they really are sending or not sending.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Well, I just started learning about it this afternoon, so I'm no expert! Here's an oversimplified version:
As I understand it, nagalase is an enzyme that prevents vitamin D from...um...activating the macrophages, I think. Macrophages are the immune system cells which are supposed to destroy cancer cells and other invaders.
You get a blood test to measure the amount of nagalase, and an elevated number shows an immune system in trouble.
If you have high nagalase, GcMAF is a treatment by injection to activate the immune system (MAF = Macrophage Activation Factor). It is used for cancer, HIV, and more recently CFIDS, autism, Lyme, and etc. Apparently some people respond to it and some don't. Its production sounds sketchy to me, and it is not made or sold in the US so far as I know.
It may be that Dr. K of WA has a homeopathic version, which we are also looking into through our naturopath. I don't know much more than this so far.
MichaelTampa
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Member # 24868
posted
Biopure.eu sells the homeopathic, "Homeo K Guard" (formlerly named "Homeo K MAF"). You can buy via the internet if your doc doesn't have it.
Yes, I have experience with these.
Adding a little bit to your description, nagalase is an enzyme that reduces production of the protein which binds vitD to macrophages. Without this binding protein, the immune system will not do its job.
Adding more of this binding protein, through injection or otherwise, helps the immune system deal with infections, which reduces nagalase levels (having the infections increases the levels),
and puts the circular loop in a better direction where you can make your own binding protein, if you get the nagalase down far enough and correct any other important factors.
I hear that this has been more successful with cancer and less so with lyme, perhaps those with lyme have other factors that are not dealt with solely using this treatment. Perhaps that is genetic, or the lyme infection itself, or any other of a myriad of options.
..............................................
Breaking up the paragraph for easier reading for many here -
[ 05-07-2015, 06:06 PM: Message edited by: Robin123 ]
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Thanks MichaelT. We are trying to locate some homeo K guard for our daughter to try.
Also there is a Dr. in NYC who treats with a probiotics yogurt that is supposed to be similar to GcMAF. At this point, so many years in, nothing sounds too crazy to consider trying.
She is treating the Lyme aggressively again now, and we are looking for ways to get at some of the underlying problems if we can.
Judith
Posts: 228 | From Mass. | Registered: Feb 2009
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posted
Any update here? Can people share their results with GCMAF? Which product did they use? Did it work? Where to purchase? Thanks.
Posts: 641 | From Nevada | Registered: May 2009
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First of all...while Bb can be and is in macrophages, there are other cells it can and does attach to and invade (fibroblasts), etc. as well as HeLa cells. (I linked previously.)
posted
A lot of those with Lyme and co. experience a significant worsening of inflammation with GcMAF. I've read accounts of this happening with the fermented GcMAF's too, so they're definitely doing something.
Dr KDM in Brussels uses GcMAF when nagalse is elevated. He's found the worst cases of inflammation from IRIS (immune reconstitution inflammatory syndrome) occur in those with active babesia infections. I find this interesting as this is my worst infection. I read a study of babesia in mice where the determining factor was macrophage activity.
I think going really slowly with GcMAF might be a great way of getting one's immune system back and running, but one has to proceed cautiously. It has started a cascade in some people that made them quite a bit worse even after discontinuation.
I started taking some K MAF yesterday. I'd misplaced it two years ago and never had the chance to experiment with it. I'm sweating a fair bit and have noticed a few things, but I can't yet say for sure how effective it is.
I've ordered some MAF 878 from the ME/CFS doctor in NY. Bravo probiotic is just too expensive a price to be paying for bacteria. Here's the link to his secure ordering form.
I didn't receive an email confirmation from his office, but when I enquired a few days later they responded, asking me for my mailing address, so it seems they're legit. You can always contact their office, the location of which shouldn't be too hard to figure out from the ordering form.
Posts: 65 | From Montreal | Registered: Nov 2011
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posted
Within a couple days of using K-MAF I noticed a worsening of my detox inflammation. I've concluded it's probably best to clean oneself out and reduce inflammation before stimulating the immune system in this way.
Perhaps this toxic and inflammatory overload is the reason why our immune systems don't function optimally. It's a defence mechanism to limit oxidative stress.
Posts: 65 | From Montreal | Registered: Nov 2011
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MichaelTampa
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posted
Yes, the real stuff, back when available, also really worked, despite whatever nonsense is being put in wiki.
They did note from those in their study group, it did not solve people's lyme symptoms as well as it really dealt with cancer. But that does not mean it was not functioning as "designed", as these are simple immune system extracts. It just means, people with lyme have a number of other issues that this does not address, but for cancer, this addresses something much more primary in the set of problems.
"Buyer beware" always applies with wiki, but in this particular case, an extra note applies.
A number of docs using this substance with their patients, and providing valuable research results, have met with untimely deaths. This includes the great Dr. Gonzalez, with perhaps the best record treating cancer patients in the U.S. Quite a number of these deaths were obviously murder, as noted by authorities, which I think places in question/suspicion all of the deaths.
So, with that in context, no, just because wiki says it doesn't work at all, sorry, that is not a credible source in this case.
You can also see on the gcmaf website, discussion of other substitutes that other places were manufacturing to provide to people, in absence of the true immune system extract. In some cases these were competitors, and in other cases, just trying to provide some options given the real stuff is not available. This website noted that these generally did not function the same. Well, they were not the same, so that is understood. But also keep in mind when you have detractors making very general comments that "the stuff doesn't work".
[ 10-28-2016, 12:17 PM: Message edited by: MichaelTampa ]
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
up... what is the current best place to get, and try, GCMAF? Seems to be so many obscure options, wondering if anyone can provide some experience with a given product and recommend it. Thanks.
Posts: 641 | From Nevada | Registered: May 2009
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posted
Just my own experience with GcMAF from the doc in NY who makes the MAF878.
I tried it for 3-4 months with no improvement.
After the 4th month he told me I didn't need to return.
One of the suppliers of GcMAF actually states on their website that they have not had good results using it for Lyme.
BTW, this doc calls himself a CFS expert, yet he completely missed my POTS and Lyme.
This is just my own experience.
Posts: 116 | From USA | Registered: Jun 2016
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Rumigirl
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quote:Originally posted by dan67: up... what is the current best place to get, and try, GCMAF? Seems to be so many obscure options, wondering if anyone can provide some experience with a given product and recommend it. Thanks.
I want to know, also. If the info needs to be sent PM, please do. I have to clean out my PM box!
I was wanting to use this for cancer, as well as Lyme & co. I need all the help I can get, I am really losing the war so far.
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