posted
Hello all, has anyone tried this or heard of it. Supposedly,it is an injection once a week, of a certain kind of protein, that destroys any immune defeciencies. They have been using it in Europe and Japan, there have been several case studies showing it cures both of these. They just started to use it on lyme patients, it they say they are having 100% sucess with it. My Dr. has shown me all the research and wants me to order it. How do I know it works, how do I know I'll get it, how do I know its not fake. Seems really sketchy to me??
Posts: 80 | From scottsdale | Registered: May 2011
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GiGi
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posted
GcMAF is the most exciting thing that has come down for any of us or family with a chronic ailment that doesn't seem to totally want to go away or never goes away.
Read it and explore it.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
This is something I am so, so interested in and want to do and will discuss with a new LLMD next month.
Better Health Guy, just recently wrote about this issue I think a week ago. I think this is promising for some, especially like me, who is immune deficient and have been on abx for 2 ys now.
I have tried all sorts of herbals...have seen some improvement and still neutropenic, low nk cell funct . and a cd 57 of 10. Im so ready to try this.
I have rec'd neupogen iv in the past for my low wbc ct. and it was not that bad and I think the dose is even lower that what I got.
Posts: 151 | From south east | Registered: May 2010
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posted
I know where you can order it, but there are so many fakes out there, you never know if its worth it. Also, I have read that if it is real, the postal service has been stopping it from going through customs. Sooo confusing?
Posts: 80 | From scottsdale | Registered: May 2011
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Tammy N.
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posted
I'm definitely interested in this. But is sounds like this is a product that comes from others' blood? These types of treatments always make me want to research further. Don't want to solve one problem, but unknowingly acquire another.
Anyone else have further info?
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Dr K not only mentioned GCMAF last week, he said using it he no longer needs to use ABX. Thus reducing all the issues that go along with ABX.
This is a very exciting breakthrough. I will be taking it to my LLMD next week and if he does not for it I will take it to my DO. Now if my DO does not go for it well I'll go to my other DO and if ... can you relate?
All the Best, Matt H
Posts: 607 | From Houston Texas | Registered: Mar 2011
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posted
FYI...according to better health guy, before you start the GcMAF, you need to have your nagalase level checked.
There is a lab in NJ, that specifically does this, and if your nagalase level is elevated, you can be a candidate for GcMAF.
With the injections, your nagalase level should decrease and should be monitored throughout treatment.
I have ordered the nagalase kit through my doc. office. So should be interesting. I think, as well, you can not be on Art. for a certain amt. of time before drawing this nagalase level.
Posts: 151 | From south east | Registered: May 2010
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posted
Does anyone have any thoughts on fakes?? You have to get it from Europe or Asia, what abt customs?? It has to stay cold, that's a long way to go? I'm not trying to be negative, I just want to make sure I get the real stuff. I'm very excited abt it too. Matth, is Dr. K actually giving it to patients? Where does he get it??
Posts: 80 | From scottsdale | Registered: May 2011
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SForsgren
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posted
http://gcmaf.eu is the only source of GcMAF that has been independently assayed as far as I know.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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James1979
Unregistered
posted
Scott - thanks so much for keeping us updated on your GcMAF treatment! I'm following your website via RSS and Twitter now to make sure I get the news on how you're doing. I think it's awesome when people document their treatment plans, because it helps out so many people.
According to the website, you have to have your doctor submit a request. The price is on the website too. So would think that this is the only place to get it.
Dr K talked about abx and combinations depending on the individual and then said (I am paraphrasing), "but we don't use or need abx now that we are using gcmaf."
But he did not say if the gcmaf did anything for CCVSI. And I think based on his discussion of CCVSI and how he says a great percentage of chronic lyme patients have a CCVSI issue that it may not.
There are notes posted from the call in session last week and he gave other treatments for CCVSI. What I find interesting is that there is considerably more discussion amongst the doctors about Lyme and CCVSI.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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posted
Yes, Dr. K's clinic is starting to use it with patients. Patients order it from the source Scott listed above. (Thanks for your awesome blog post btw Scott -- really helpful.)
At the clinic patients are tested first for nagalase levels and also Vitamin D. Apparently if Vit D is too low, this treatment won't be effective -- or atleast "as" effective.
I was tested recently and just learned that my Vit D levels were too low, so I'm supplementing for now to try to raise them. I'll learn about my nagalase levels in a few weeks. If I'm a candidate, I will likely get started with this therapy.
Posts: 232 | From Oregon | Registered: May 2010
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posted
Scott, do you mind giving us the web address for following your treatment? I'm very interested.
Posts: 80 | From scottsdale | Registered: May 2011
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SForsgren
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posted
Actually, in the Dr. K call, someone asked about what to do if you had the CCSVI procedure and restenosed, and he did say that was time to think about GcMAF if I recall.
LymeAware (hi ) is correct that the Vitamin D levels are an important part of the GcMAF therapy. GcMAF.eu notes this in their instructions as well.
I would love to hear from anyone with Lyme that gets their nagalase testing done. I've only heard a few results so far, but I suspect almost everyone will be highly positive on the test. We'll see. It has been shown to be very common in autism already by one practitioner.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Well if CCSVI can be helped by GcMAF that would be great and I may have misheard Dr K's remark.
Wouldn't that be great if those that get the GcMAF improve their drainage in their heads if that is their issue!
Thanks Scott!
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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SForsgren
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posted
I think what he meant was that part of the issue with restenosing is endothelial infections. If the GcMAF can lower the infection burden, then the CCSVI procedure may be more long-lasting. I don't think GcMAF itself will resolve CCSVI. Lots to learn still on both of these topics.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Hi Scott! I'll definitely try and report back when my levels come in and I hear. I'll be seeing my doc again in a couple weeks, so hoping we'll know by then. It's been exciting to read your postings on the subject -- looks very promising!
Posts: 232 | From Oregon | Registered: May 2010
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MichaelTampa
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posted
My doc just told me about this yesterday. We'll be interested in trying, probably get the test done first.
The test could spare one wasting their time and money with this, as the test could indicate this therapy would not work. But, other than that, I don't guess the test is a necessity.
My doc thought no Rx was required to purchase. However, it does require an injection. My doc says it is as easy or easier than what the diabetics do regarding their injections, as it is a very small amount and not needing to go into a vein. (This is what my doc said anyway. He had just recently heard about this as well and was looking into getting some of his patients set up with it.)
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Does anyone know any LLMDs on the Mid-to North East Coast using this product for their lyme patients? PM me please. Very interested in it. Wish we had a Dr. K. on this side of the country. Thanks
SForsgren
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posted
My opinion is that nagalase testing prior is an absolute necessity. If you don't have elevated nagalase, then there is no reason to do the treatment. If you do, it helps to create a picture of the pattern in people with Lyme relative to nagalase elevation. Additionally, nagalase is generally tested monthly during treatment to monitor progress. So, I do think it is important.
I don't know many doctors that are using this, but hopefully it won't be long before they start to get more information about this option and considering whether or not they will offer it to their patients.
I don't think the treatment is without some potential challenges though - inflammation being the most signficiant that people seem to experience. It will take time to see how people in the Lyme community respond to it both in terms of during and after therapy.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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James1979
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posted
Gigi - that's absolutely amazing that you're gonna be 80 soon. Your brain seems to be working at 100% efficiency! Thanks for helping us all out like this.
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Thanks for your post. We are all wondering if it will work us and your insight is invaluable.
What about abx, should that be continued at least during the first 3 or 4 weeks?
Do we continue the long list of supplements and binders?
If these questions are premature, I understand.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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susank
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posted
Exciting. I need to read more. I have no idea what is CCSVI?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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MichaelTampa
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posted
Do a few searches on ccsvi here over last few months (they are rare but worth reading), and wiki has a nice write-up on ccsvi as well.
I am one of those who had angioplasty to correct ccsvi, just a little over a month ago. Very briefly, ccsvi is a circulation problem that is known to cause neurological symptoms, but I think correction is also important to help get good oxygenated blood everywhere to kill the bugs, because the bugs will hide out wherever they can.
There are ways of improving blood flow to the rest of the body parts, and while I believe ccsvi treatment is important, I bet we should not ignore the other body parts as well (such as limbs).
Posts: 1927 | From se usa | Registered: Mar 2010
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MichaelTampa
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Gigi -- The 4 degrees above zero celsius is just above freezing. I haven't tested, but this sounds a bit colder than refrigerator temperature, and I wonder how you are storing the GcMaf and how carefully you are measuring temperature.
I think I'll be getting going pretty soon on this, and just trying to figure out how to handle this.
Posts: 1927 | From se usa | Registered: Mar 2010
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MichaelTampa
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posted
Just got a call from my doc, he also said the frig should work ... that's nice. Yes, he said it can be easier than what the diabetics use. I'll mention the tuberculosis syringe idea to him.
Very excited about this, yes a good sign about the blocking-unblocking!
Sounds like Dr. K. may have mentioned this idea publicly recently. My doc heard from someone who is one who hears about Dr. K. ideas. Curious if this idea is now popped up in U.S. due to Dr. K. or someone else. Grateful there are people like Dr. K. actually working on great new ideas, we certainly can use some!
Posts: 1927 | From se usa | Registered: Mar 2010
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SForsgren
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posted
Please don't assume this therapy is without risk and potential side effects. Read about IRIS (http://en.wikipedia.org/wiki/Immune_reconstitution_inflammatory_syndrome). I had a 5 day inflammatory response this past weekend that seems to be almost assuredly related to GcMAF. That's why I don't think anyone should do GcMAF unless their doctor really knows what they are doing.
I'm now taking a week break and then will restart after things settle down a bit. I'm still very optimistic, but I think people need to be prepared for these responses to occur.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Tammy N.
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posted
Hi Scott,
How are you feeling today? How are you handling/treating your inflammation?
I'm out here is Seattle. Doc recommended same treatment. Having Nagalase and D testing done. Headed back to clinic now.
Take care.
Posts: 2238 | From East Coast | Registered: Jul 2010
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SForsgren
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posted
I'm doing fine. On several anti-inflammatories and not back to 100%, but it's well on the path to resolving. I'll wait about 10 days before doing another injection and waiting for my nagalase retest results which were just drawn this week.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
scott: what anti-inflammatories are u taking to assist w/iris effect?
gigi: does dr k think gcmaf will help w/cavitations.....i have had 7 surgeries and none have helped....still pain and inflammation.
Posts: 92 | From berkeley, ca, usa | Registered: Jan 2005
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SForsgren
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posted
BW A-INFLAM, Metagenics UltraInflamX, Nano Curcuminoids, plus drainage and detox. Mostly resolved at this point.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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quote:Originally posted by GiGi: Friends in the field are blown away by it. It cures cancer, ALS, MS, Lyme and autism.
I've seen LN members desperately try so many drugs/substances/procedures over the years and the reality is nothing works - there is no cure. I'm skeptical when I see statements such as these using the 'C' word.
Posts: 655 | From USA | Registered: Sep 2007
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if i were to consider this treatment, how high should my levels be?
or just to continue supplementing is fine? (i am using D3 drops @ 4000iu per day)
Posts: 8337 | From the other shore | Registered: Jul 2002
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SForsgren
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posted
70-100 is ideal. Most people have to take supplemental D while on GcMAF.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Interesting stuff. I hope those on GcMAF do well. I have taken it, but my Lyme symptoms are mostly resolved. I've written a quick write up on it on my blog. GcMAF is not temperature stable, so be sure to refrigerate quickly. Unfortunately, at this stage, I would still consider it very experimental for Lyme. Best of luck.
Posts: 261 | From Washington | Registered: Oct 2002
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CD57
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How much does it cost? I think I read something like 10k?
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CD57
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posted
How long must one do this therapy? It is not a forever thing, is it? Maybe 4-6 months?
Posts: 3528 | From US | Registered: Apr 2007
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GiGi
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You will find some interesting reading. Be sure to read through all the links. It is not terribly technical, but should answer all your questions. I am not the sharpest, but it all became very clear to me how it works and what to expect.
Best to you.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
Scott, I'm sorry to hear that you had the inflammatory reaction! Does not sound like fun. But, also very interested to hear, as I know we have all been wondering about potential complications. I'm glad you are feeling better now -- I hope you'll keep us updated.
Mo -- My doctor's office said that Vit D should be atleast 40 for the GcMAF to be effective, and they started me on 10,000iu per day. (My Vit D was 21.) I'm not sure whether they will wait for my levels to get to 40 before starting or what, as we haven't gotten my nagalase test back yet, but I'll know more in a few weeks.
CD57 -- I've heard that the cost is around $400-$450 per month, and no it isn't a forever thing.
Posts: 232 | From Oregon | Registered: May 2010
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i should supplement at a higher amount, just my pcp ran this, so they only said to take 1000iu a day.
GcMaf, i assume is not covered by insurance, however, is it only LLMD's using the treatment, or general/other specialist MD's as well?
i have the same question for CCVSI.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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SForsgren
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I have heard that the ideal Vitamin D level for GcMAF is 70-100 and most of us will need Vitamin D supplementation while using it. I am on 10,000 IU as well and have been for quite some time. My most recent D level was 97.
I think as long as you are taking Vitamin D, the level is less critical, but I'm not certain.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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When you say especially if using enzymes what do you mean?
"I do not think we can get away without adressing CCSVI. Limited blood perfusion into the brain is a problem and Dr. K. refers to Lyme as the disease of the endothelium. I think the swelling legs/ankles/feet is a part of this, especially if using enzymes."
I am in the process of addressing CCSVI. I do have the swelling but it has gone done since I began using nattakinese and serrapentase.
All the Best, MattH
When you say
Posts: 607 | From Houston Texas | Registered: Mar 2011
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posted
Gigi, when you say "The Epstein-Bar and the different Herpes are nasty, E-Coli, and many more - are not safe any longer."
Does this mean that GcMaf is also effective against Herpes viruses and e-coli?
Also, I wanted to get my nagalase tested, but I must have my doctor's license number. Can I just order a test without a doctor's involvement?
Thank you so much for sharing your story - hope your hubby bounces back, and this is a "miracle cure". I've learned so much from this post, and others from you.
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![[Smile]](smile.gif)
) is correct that the Vitamin D levels are an important part of the GcMAF therapy. GcMAF.eu notes this in their instructions as well. 
![[Roll Eyes]](rolleyes.gif)
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