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??
Posted by lou (Member # 81) on :
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.
Posted by Knight33 (Member # 22028) on :
Interesting. Nobody has tried it?
Posted by mookie333 (Member # 26021) on :
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.
Posted by dogmom2 (Member # 23822) on :
Dr. K mentioned this in his talk last week. Sounded very promising.
Posted by jbaer (Member # 31938) on :
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?
Posted by Tammy N. (Member # 26835) on :
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?
Posted by MattH (Member # 30846) on :
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
Posted by mookie333 (Member # 26021) on :
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.
Posted by jbaer (Member # 31938) on :
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??
Posted by SForsgren (Member # 7686) on :
http://gcmaf.eu is the only source of GcMAF that has been independently assayed as far as I know.
Posted by James1979 (Member # 31926) on :
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.
Best wishes on your treatment.
Posted by MattH (Member # 30846) on :
jbaer,
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
Posted by LymeAware (Member # 26195) on :
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.
Posted by jbaer (Member # 31938) on :
Thank you all for the feedback, good stuff!
Posted by jbaer (Member # 31938) on :
Scott, do you mind giving us the web address for following your treatment? I'm very interested.
Posted by SForsgren (Member # 7686) on :
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.
Posted by MattH (Member # 30846) on :
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
Posted by SForsgren (Member # 7686) on :
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.
Posted by LymeAware (Member # 26195) on :
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!
Posted by MichaelTampa (Member # 24868) on :
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.)
Posted by Igor's mom (Member # 29191) on :
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
Posted by SForsgren (Member # 7686) on :
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.
Posted by James1979 (Member # 31926) on :
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.
Posted by MattH (Member # 30846) on :
Gigi
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
Posted by susank (Member # 22150) on :
Exciting. I need to read more. I have no idea what is CCSVI?
Posted by MichaelTampa (Member # 24868) on :
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).
Posted by James1979 (Member # 31926) on :
It looks like he added more info and a video explanation. I learned of the update via his twitter.
Thanks, Scott! Posted by MichaelTampa (Member # 24868) on :
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.
Posted by MichaelTampa (Member # 24868) on :
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!
Posted by SForsgren (Member # 7686) on :
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.
[ 10-18-2011, 08:32 PM: Message edited by: SForsgren ]
Posted by Tammy N. (Member # 26835) on :
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.
Posted by SForsgren (Member # 7686) on :
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.
Posted by Mo (Member # 2863) on :
thank you so much for keeping us updated here, scott.
i hope all proceeds as well as possible!
mo
Posted by lisag (Member # 6798) on :
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.
Posted by SForsgren (Member # 7686) on :
BW A-INFLAM, Metagenics UltraInflamX, Nano Curcuminoids, plus drainage and detox. Mostly resolved at this point.
Posted by yanivnaced (Member # 13212) on :
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.
Posted by Mo (Member # 2863) on :
scott or others,
my vitamin D test just came in at 28.
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)
Posted by SForsgren (Member # 7686) on :
70-100 is ideal. Most people have to take supplemental D while on GcMAF.
Posted by noodlydoo (Member # 3273) on :
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.
Posted by CD57 (Member # 11749) on :
How much does it cost? I think I read something like 10k?
Posted by CD57 (Member # 11749) on :
How long must one do this therapy? It is not a forever thing, is it? Maybe 4-6 months?
Posted by GiGi (Member # 259) on :
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.
Posted by LymeAware (Member # 26195) on :
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.
Posted by Mo (Member # 2863) on :
thanks, guys, on the vitamin D info.
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
Posted by SForsgren (Member # 7686) on :
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.
Posted by MattH (Member # 30846) on :
Gigi,
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
Posted by baileypup (Member # 22824) on :
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.
Posted by baileypup (Member # 22824) on :
Found this on PubMed:
Yamamoto N.
Serum vitamin D3-binding protein (Gc protein) is the precursor for the principal macrophage-activating factor (MAF). The precursor activity of serum Gc protein was lost or reduced in HIV-infected patients. These patient sera contained alpha-N-acetylgalactosaminidase (Nagalase), which deglycosylates serum Gc protein. Deglycosylated Gc protein cannot be converted to MAF and thus loses MAF precursor activity, leading to immunosuppression. Nagalase in the blood stream of HIV-infected patients was complexed with patient immunoglobulin G, suggesting that this enzyme is immunogenic, seemingly a viral gene product. In fact, Nagalase was inducible by treatment of cultures of HIV-infected patient peripheral blood mononuclear cells with a provirus-inducing agent. This enzyme was immunoprecipitable with polyclonal anti-HIV but not with anticellular constitutive enzyme or with antitumor Nagalase. The kinetic parameters (km value of 1.27 mM and pH optimum of 6.1), of the patient serum Nagalase were distinct from those of constitutive enzyme (km value of 4.83 mM and pH optimum of 4.3). This glycosidase should reside on an envelope protein capable of interacting with cellular membranous O-glycans. Although cloned gp160 exhibited no Nagalase activity, treatment of gp160 with trypsin expressed Nagalase activity, suggesting that proteolytic cleavage of gp160 to generate gp120 and gp41 is required for Nagalase activity. Cloned gp120 exhibited Nagalase activity while cloned gp41 showed no Nagalase activity. Since proteolytic cleavage of protein gp160 is required for expression of both fusion capacity and Nagalase activity, Nagalase seems to be an enzymatic basis for fusion in the infectious process. .Therefore, Nagalase appears to play dual roles in viral infectivity and immunosuppression.
Also, How do proteolytic enzymes affect nagalase? I can't tell if one should uses systemic enzymes or if they are contra-indicated.
Posted by GiGi (Member # 259) on :
Baileypup,
"Does this mean that GcMaf is also effective against Herpes viruses and e-coli?"
Yes, it is. Please read every word on the GcMAF website. You will find many answers.
These other unknown underlying critters that have plagued so many of us do not have a chance once GcMAF moves into action.
You can call Healthy Diagnostics and have them send you the Nagalase test kit. Find a friendly doctor to draw blood, etc. as needed and send it in. Follow the freezing instructions carefully. Call FedEx and arrange time for pickup at your house and send it in still frozen on the right weeksdays. All in the test instructions.
Learn to tensor or muscle test or any testing that will give you answers to some of the puzzles that appear when you are killing/detoxing, etc. Tensor testing helps me keep my sanity! I don't always have an ART doctor at the waiting and the body changes throughout the day having different needs. There are other methods you can learn. Be open to it. It can be learned - with a little patience.
Best to you.
Posted by CD57 (Member # 11749) on :
Hmm. Is the idea to get the nagalase down and then discontinue the therapy? Not sure what the end point is here.
Posted by GiGi (Member # 259) on :
The expected endpoint is that people eventually get well. The reason we are still not getting totally back to normal even after years of abx is because we are dealing with so many mutations of infections which we are not familiar with or can't find or treat. GcMAF starts dealing with them in a very natural way.
Reading the complete website, every link you can find on that site, will help clarify things for you. Nobody here on the board can give you a flat yes or no answer. All is relative. www.GcMAF.eu
Take care.
Posted by SForsgren (Member # 7686) on :
Yes, once nagalase is down and the immune system and macrophages are "activated", there is no thought that ongoing GcMAF therapy would be required. After 4-6 months and confirmatory nagalase testing, that should be the end point for this treatment.
Posted by CD57 (Member # 11749) on :
Other than the temporary inflammation, are there any downsides? I can't find any on these sites.....
Posted by GiGi (Member # 259) on :
If it causes increased inflammation, as in a herx, most people with ALS/Lyme will not be able to take this treatment.
Posted by SForsgren (Member # 7686) on :
You can titrate the dose to attempt to avoid symptoms. Take more -> more potential for inflammation. Take less -> less potential for inflammation. Since it is stimulating the natural immune response, I am not aware of a concern in terms of resistance, etc. as with some other therapies.
Posted by susank (Member # 22150) on :
What about MS? I am thinking of some friends.
I called my doctor's office today and am waiting for return call to see if they test/have any patients on GcMaf. I am very interested in it for myself as well.
Posted by SForsgren (Member # 7686) on :
I was told by a practitioner that GcMAF is potentially not a good option for MS and that there is some concern using it in MS patients. That said, I believe there are other sources of info that suggest otherwise. So for MS I'm not sure but do know that at least one practitioner recommends not using GcMAF in MS.
Posted by Knight33 (Member # 22028) on :
so has anybody here actually had positive results from GcMAF for lyme?
Posted by GiGi (Member # 259) on :
This is a list of some of the results from people using GcMAF.
The categories listed - Autism, XMRV - Lyme, Fibromyalgia, Chronic Fatigue Syndrome all fall into the Lyme category. Dr. K. has stated for years that all of his patients who come to him with these problems also have Lyme.
Take care.
Posted by Rumigirl (Member # 15091) on :
Could someone please PM me the name(s) and contact info for any drs who do this in the northeast---or east coast?
This is really exciting! If it pans out, it is just what the dr ordered! I've had to be off all tx for way too long, due to gallbladder/liver/pancreas problems from rocephin, etc., so . . . I need such a cure, if it turns out to be one.
Keep this thread going--or a new one as needed. Please, everyone who is doing this, keep us updated, so we have more specific Lyme & co's experience with this.
Thank you so much Gigi, Scott, and others!
Anyone who is doing CSVI tx, also, please keep us updated. On that note: what drs/clinics are doing that in the northeast or on the east coast?
And is it generally better to do the GcMAF first, and after some improvement, consider the CSVI?
Posted by MichaelTampa (Member # 24868) on :
I think the key thing before doing angioplasty for CCSVI is that have a pretty good handle on the biofilm and any accompanying bugs such that they will not clog things up again right away. Doesn't mean you've killed "all" the bugs or have a properly functioning immune system, but I would say suggest at least some bug treatments and lots of biofilm treatment.
Posted by MattH (Member # 30846) on :
Michael,
When you say bugs are you talking about bacteria or parasites?
Also since your CCVSI, how are you feeling, noticable improvements yet?
Thanks, MattH
Posted by Rumigirl (Member # 15091) on :
Does anyone know if you can do GcMAF if you are doing IVIG treatment on-going?
I have done IVIG for over a year with a number of stops and starts, and have started up again. But I really want to try GcMAF, assuming that my nagalese levels are high, which they are likely to be.
I noticed that there is a dr in NYC who is doing a study on it. I just hope that doing IVIG wouldn't disqualify me (do I have to mention it?!). I know that I was disqualified from another study once because I revealed that I have Lyme Disease!
Posted by susank (Member # 22150) on :
I wonder about testing and IVIG and Abx. My last IVIG was mid Sept. I assume it needs to be out of my system for accurate Nag. testing. What about Abx? Off of them as well?
Folks are having their Vit.D. levels tested through regular lab ie Labcorp and Quest?
Are there any other tests recommended for McMaf?
Seems to me I was reading somewhere in regards to GcMaf about people testing to see if they were "responders"? Things called "Fok".... Or was I reading something different? Tks.
Posted by MichaelTampa (Member # 24868) on :
When I said "bugs", I was more kind of thinking of bacteria, but I probably should have meant both. Bacteria will clog up the works, but the parasites will change your enzymes so that bacteria can do that. So, as I think about it, I would probably think treating both to at least a decent extent would make sense before ccsvi angioplasty.
Lesser sensitivity to emf's, somewhat more energy, and herbs fighting against the bugs are testing as much more useful. Nice things, and I think the treatment was very worth doing for me, but still, not a major improvement, and I think just much more work to be done.
Yes, I think labcorp/quest are fine for vitD levels, I get mine checked at Labcorp
Posted by susank (Member # 22150) on :
Further: the immune system and auto-immune diseases. Immune system modulators etc. IVIG is said to be a modulator. Is GcMaf somewhat the same?
It is said that LD supresses the immune system. What lab markers show that?
I doubt most folks are having their Immunoglobulin levels checked. I have written that I am low/subnormal on IGG, IGM and IGA totals/subclasses. For sure that means a supressed IS. What other tests show IS supression? It appears GcMaf would be very helpful there to help the body fight diseases.
But what about hyper immune systems? If one has hypo and hyper? Hyper is autoimmune - ie the IS attacks our own bodies? How would GcMaf work in that regard? As a good thing - or throwing fuel to the fire?
For myself, I don't know if I have an auto-immune disease - unless it is Sjogren's - where my tests are negative. I do have highly elevated Immunoglobulin E levels.
I guess I am asking what possible health scenarios would make GcMaf a bad thing for some individuals?
Posted by noodlydoo (Member # 3273) on :
I don't want to be Captain Buzz Kill, but GcMAF is unproven. I compiled a list from a XMRV forum. Yes, some clinical improvements for sure. But wonder drug?
I have yet to read about a full clinical cure from GcMAF alone. I suspect years from now it will be seen as an important tool, but not THE tool. I hope I'm wrong....just not convinced yet.
So would being on IVIG mean that I wouldn't get a true test result on the nagalese? And would it not be good to do both?? I know, it may well be that no one here knows, but any ideas? Thank you.
As far as the doubting Thomas's go, I hear you. Who knows why Dr. K is so fired up about it when it is so new and experimental, and the results have been so mixed.
I'm still interested in trying it nonetheless---if I can do both that and IVIG at the same time. But that may be over the top.
Posted by MichaelTampa (Member # 24868) on :
For my perspective, I don't imagine anyone thing could cure lyme disease once set in for years. So I'm not looking or hoping for that. I'm looking and hoping for the missing piece(s). I've done many things and looking for what's missing.
Calling gcmaf an immune modulator sounds wrong to me, as it is simply feeding the immune system what it should be making. So, maybe an immune supporter, but hard to see it suppressing the immune system (modulating it down) if that were needed. Perhaps if the gcmaf will cause the body to attack itself more, that would be bad.
Apparently, nagalase is a lab marker for the suppressed immune system, as nagalase tells the body to stop making the gcmaf protein.
Good question regarding the ivig, don't know. Maybe ask the ivig experts/docs, if ivig includes the gcmaf protein, or macrophage binding proteins in general. And ask if ivig includes nagalase.
Posted by MattH (Member # 30846) on :
Rumigirl,
Dr K did seem extremely positive about GcMAF on the conference call. I went back and reread the notes, some of his protocols, and the CCSVI notes that Scott F put together.
So maybe he is fired up because this is a new and important piece of his protocol along with the Dr K Lyme Coctail, the detox protocol, the KMT, the reduction in EMF, and the other things he is doing. He also uses ART so he gets feedback on what the patient needs.
Since he is very foward thinking and has changed his protocols since he started treating heavy metals 15 years ago, he may see the GcMAF as a major piece of his puzzle that replaces ABX and allows him some room for other things that the ABX do not allow because of side effects.
So I think he may see this as a very complementary piece. What I do not know is, because we are all different, what else do we need to do along with the GcMAF. Do I keep doing the ABX (does not seem to be a downside but may not have enough info), current supplements (different supplements), CCVSI treatment and what else.
Do I question my LLMD who has had significant success about Dr K's protocol? Or do I need a little more patience to let the current protocol work?
One thing I find very interesting is that spiroketes love collagen. So can we use liquid HA to draw them out of the collagen in the joints and into the gut where they can be killed much easier? That's like using Amdro for fire ants!!! I am on abx anyway can I help it be more effective? Any thoughts?
All the Best, MattH
Posted by tickssuck (Member # 15388) on :
Wow...another cure! Ok, I am open-minded, just cautious.
I am scared to get my hopes up and then remain sick! I was just reading the wonders about photon therapy, now I'm reading this. How does one know where to turn?
I am certain, abx will not get me well, unfortunately - taken multiple oral combos and 11 months of IV...so I've given abx more than its fair share, sigh.
My neuro symptoms are only slightly improved, still very sick. Photon therapy, GcMaf, HBOT....?
I need a plan....but feel overwhelmed and unfocused... TS
Posted by Tammy N. (Member # 26835) on :
Any updates from our friends who are trying this treatment?
Scott - have you resumed treatment? Has your inflammation calmed down? What do you thing of GcMAF so far?
Thanks for sharing:)
Posted by SForsgren (Member # 7686) on :
Yes, I have started again at a lower dose. The inflammation is not entirely gone, but with supportive anti-inflammatory treatment, it has improved. Waiting for my nagalase retest but it takes several weeks. I don't have an opinion yet on the benefit as it is still early, but I do think people have to be ready if they do get inflammation from it.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by SForsgren: The inflammation is not entirely gone, but with supportive anti-inflammatory treatment, it has improved.
What are you doing for anti-inflammatory treatment?
I've been taking Wobenzym for several years with good results.
Posted by SForsgren (Member # 7686) on :
One practitioner I have spoken with says that enzymes may be contraindicated with GcMAF. So, that's probably something to be debated more in the future. I'm doing some enzymes, but not a tremendous amount, Inflamyar from Pekana (both pellets and topically), Sanum remedies, massage, and fish oils.
Posted by CD57 (Member # 11749) on :
up
Posted by dal123 (Member # 6313) on :
Other than nagalase testing what ate the immune factors that would point to need for GcMaf? if your immune system is very good, and all four IGG, IGM, IGE and IGA well within normal limits would u not be a candidate for GcMaf?
Posted by SForsgren (Member # 7686) on :
The key is nagalase. If you have a functional immune system, you should in theory have a normal nagalase level. I would not consider GcMAF without doing nagalase testing prior and during.
Posted by baileypup (Member # 22824) on :
Scott,
I read something about the enzyme issue too. Can you give any additional information as to why systemic enzymes are contraindicated?
Does it have something to do with nagalase being an enzyme itself?
Posted by SForsgren (Member # 7686) on :
My practitioner thinks that the enzymes may digest/impact the GcMAF itself and render it not useful. I think it is just a theory at this point.
Posted by LymeAware (Member # 26195) on :
Hi all,
I just got my nagalase test result back, and thought I'd share. For those of you who are interested -- I had my blood draw on 10/7/11, and the result came in on 11/14/11, so it took awhile.
To my surprise, my nagalase level came back as 0.60, which is in the normal range. I haven't spoken to my doctor about this yet (the result was just scanned and sent to me), but I assume this means I won't be doing GcMAF.
I'll be having an in person appt in a month, so we'll see what they say, but it doesn't look as though I would be a candidate. I'll certainly still be interested in following all of your progress.
Scott, I have been thinking about you a lot, and I hope the inflammation calms down for you -- it sounds challenging. May this leads to a wonderful healing for you. All my best...
Posted by SForsgren (Member # 7686) on :
LymeAware - 0.60 is excellent. That's great news. I am not aware of any reason to do GcMAF if nagalase is normal, but I will be interested to hear what your doctor says.
It will be interesting to see what other people find in terms of their results. Unfortunately, the lab has been pretty slow in getting results back. I did mine on 10/18 and still don't have them back.
Thanks for your kind words. It is definitely better than it was, but still doing a lot to support the inflammation response while using GcMAF. Hopefully, it is ultimately a good thing. Appreciate your kind words.
Just got back from Germany Sunday having done the second of three tonsil freezing procedures. One to go. Yay! Posted by MichaelTampa (Member # 24868) on :
Scott,
I was at the Dr. K. conference in Seattle, when he was talking about that tonsil freezing. I didn't walk away with any great sense of how to determine if tonsils were anything that needed dealing with in that way. Care to speak about how you determined it was worthwhile to go about that?
Michael
Posted by SForsgren (Member # 7686) on :
ART over several years had shown this to be a factor and clinical symptoms (sore throats, etc.). Determined this had to be addressed before any consideration of CCSVI interventions.
Posted by LymeAware (Member # 26195) on :
Scott -- I definitely am rooting for you, and hoping that this really is part of the healing process, and will lead to wonderful improvements. In the meantime, I hope you have the supports you need, as I know those times are difficult. You are in my thoughts.
And way cool on the 2nd cryotherapy session! You are really getting around Sounds great.
Yes, I'm seeing my normal nagalase range as a good sign! Nice to see that this is functioning well for me.
I wanted to ask -- have you heard of others, very ill with lyme, having normal nagalase levels? I have no idea where I came up with this idea, but for some reason I had thought that everyone who had been tested with lyme came back with high levels.
Am I off base from what you've heard?
Posted by Tammy N. (Member # 26835) on :
Dr. K said not to necessarily trust the labs if nagalase levels show within normal range. He didn't feel that the test was highly accurate.
Posted by LymeAware (Member # 26195) on :
Thank you Tammy. That's very interesting. I want to be optimistic about my levels, but I did wonder about that. I'll see what they say next month. Thanks!
Posted by MichaelTampa (Member # 24868) on :
Funny you mention that Tammy, I hadn't heard that but was wondering it as well. Somehow I have a harder time trusting a lab's results when it takes 5.5 weeks to do a test like this.
I'm now 2 weeks since blood draw, but am not waiting. It took me quite a while to order, but looks like my gcmaf is set to arrive on Friday.
I will trust my pendulum more than the blood test in any event, but do see benefit to monitoring progress of some items with blood tests.
Scott--Do you care to share how quickly you got inflammation (hours vs. days)? I have a flight planned for Saturday and am pondering if I want to chance inflammation during a flight or if I want to wait until I return home.
Posted by CD57 (Member # 11749) on :
If he doesn't feel the test is accurate then why do it? This is the same thing that was said about KPU.....
should we all assume we have high nagalase and KPU?
Posted by SForsgren (Member # 7686) on :
Hi LymeAware - thanks for your very kind words. I appreciate it. I am rooting for you too! One more tonsil treatment to go and that issue should be another checkmark.
I have heard of a few others with normal nagalase that have Lyme and are still struggling with it. So, it is not entirely uncommon, but I don't think we know the percentages yet.
Everyone tested with Lyme has come back + for CCSVI, but nagalase is still so new that I don't think many have been tested. Another friend of mine that is still very symptomatic had a 1.0 nagalase which I was surprised by.
Interesting comment on the labs maybe not showing it but still needing the treatment. If ART showed it was still beneficial for me, I would have considered it even without the lab test being positive. However, my goal for treatment end is based on the nagalase retests. So, I'm less clear how one would know when to stop if they never had an elevated nagalase to start with.
The inflammation started at week 4 though others have had it almost immediately.
Posted by Tammy N. (Member # 26835) on :
Regarding the lab -- from what I understand they were affected by the bazaar sudden snow storm a few weeks ago and suffered power outages, like a lot of folks in NJ. I'm wondering if the samples were well preserved. I imagine they have generators, but I'm still curious. Anyone know anything more?
Posted by dan67 (Member # 20344) on :
any update on this?
Posted by MichaelTampa (Member # 24868) on :
I just took my second weekly dose today. My pendulum says it is quite excellent for me. I have not noticed any difference in symptoms or whatnot to report. My pendulum says to use 60% of what the standard dose is they recommend.
I still have not received test results. It has not yet been the 5.5 weeks that LymeAware's results took.
Posted by GiGi (Member # 259) on :
The lab work is sent to Health Diagnostics, but actually done in Europe, Holland, I believe.
Posted by Rumigirl (Member # 15091) on :
Does anyone know of a doctor on the east coast that is rx'ing GcMaf, say in or near NYC? I know that you can get it on your own, but it seems best to have it monitored by a dr knowledgeable in this.
I actually found such a dr, but he is charging more than twice what the med costs up front for the meds for 5 months worth, on top of charging for office visits through insurance!! Yikes! He was listed on the company's website, but no longer is.
I definitely want updates from you guys that are doing it. It's such uncharted waters for Lymies.
Posted by GiGi (Member # 259) on :
Just as an FYI, no Rx is needed.
Posted by dan67 (Member # 20344) on :
Is there any oral formulation, or only an injection?
Posted by MichaelTampa (Member # 24868) on :
The place I bought it from just has an injection. I haven't heard of any oral forms being available.
Posted by dan67 (Member # 20344) on :
Reticent to inject something into myself from an unknown source. Do people do their own injections or get a doctor?
Posted by MichaelTampa (Member # 24868) on :
Does sound a little brave when you put it that way. I have been doing the injections myself.
FYI, this is not IV or anything, just injecting under the skin in the leg (that's where my doc suggested doing it). My doc is on board with the treatment, he was actually the one who brought it to my attention, his office supplied me with the syringes. They are similar syringes as used by diabetics, extremely thin needle.
Posted by tricia386 (Member # 29623) on :
Michael how long have you been doing treatment?
Posted by tricia386 (Member # 29623) on :
Michael how long have you been doing treatment?
Posted by MichaelTampa (Member # 24868) on :
About a week and a half now. The injections are intended as weekly, and I have had 2 so far.
Posted by tricia386 (Member # 29623) on :
Have you noticed anything yet?
Posted by MichaelTampa (Member # 24868) on :
No, I have not noticed any effect at this point. I rely on energy testing and that says it is excellent for me, so I feel good about that, but nothing good or bad reaction-wise to report.
Editing this to point out that I do not really have much in the way of lyme-specific symptoms anymore. I do still have a failing CD57 score, and do still energetically test good for (and take) Byron White herbs for lyme, bart, babs, and fungus. Main symptoms are digestive, candida, and fatigue, which can be lyme related or not. I will not consider myself over the lyme until I get a passing CD57 and test for no longer needing lyme herbs. Since starting this treatment, I have reduced lyme herb dosage from twice a day to once a day, based on energetic testing. So, in that sense I would say progress has been made (whether from this therapy or other things I have been doing).
[ 11-30-2011, 09:18 AM: Message edited by: MichaelTampa ]
Posted by SForsgren (Member # 7686) on :
I consistently got that it was very good with energetic testing as well, but still had a very strong inflammatory response. I still think this is a good sign, but the inflammation can happen even with a good energetic test result.
20-30% of de Meileir's patients had the IRIS response. One common finding was that 7 of those people that had inflammation had Babesia.
I'm at about 10 weeks into therapy and having my second nagalase retest done next week. Sadly, the first one from six weeks ago is still not back. Reportedly, it will be available this week.
I do think it is important for people to understand that GcMAF is derived from another human's macrophages and that any treatment has potential risks.
Posted by Marnie (Member # 773) on :
GcMAF... p53...uPA and uPAR.
"independent of the macrophages"...
Figure out the connections, Scott.
Re: Doxy as first line treatment, but later/too late?
Ongoing inflammation...ONGOING...is a precancerous condition. NOT GOOD.
Scott...take a hard look at Rember.
What it is and how it works...dig deep...it works in *multiple* ways.
I think you know enough about Bb and our response to "get it".
Then there is Reishi...
Posted by susieq2 (Member # 30451) on :
Marnie,
I wish I knew what you were talking about.
I've been following this thread closely and am interested, but don't understand what you're saying.
Thank you.
Posted by GiGi (Member # 259) on :
I don't have a clue either what you are talking about, Marnie. Can you simplify things a bit?
Thanks.
Posted by Marnie (Member # 773) on :
What IS the Rx called Rember? Just "Google" it.
How was that chemical used in the past?
What does it do, i.e., how does it work?
Was it tried as a lyme treatment? If so, why didn't it work?
Note: it can NOT be used/taken if one is on an SSRI (Prozac, etc.) or has a specific gene-type!!!
Dosage/timing OR a
*2nd factor missing*?
It may take two to tango.
Just answer the first 2 questions...let's get a dialog going...about blue chromophores.
I will then try to fill in some puzzle pieces.
Posted by susank (Member # 22150) on :
I'll bite. I googled Rember and nothing came up. Is it/was it - similar to Gcmaf?
Posted by SForsgren (Member # 7686) on :
My original nagalase was 2.9. After less than one month of GcMAF therapy, I had the rest done on 10/19 which just came back today at 2.1. I will be restesting again next week since I have had 6 more injections since the last test. The first test was after only 6 injections. So hopefully the retest will be at 1.5 or below with a target of 0.4 to 0.6. It's helpful to see some documented progress.
Posted by Marnie (Member # 773) on :
I Googled Rember (you may not have spelled it correctly) and
Rember - Wikipedia, the free encyclopedia
Posted by MichaelTampa (Member # 24868) on :
Here is a link discussing Rember as methylene blue, which apparently was thought to help Alzheimer's. Can't imagine what this has to do with gcMAF.
Scott, that is great that the GcMAF is working! Bummer about all the inflammation though.
I will continue to keep an eye on this thread, thanks for sharing and everything else you do for us all. You are awesome! R
Posted by Tammy N. (Member # 26835) on :
I wonder if elevated nagalase is the ONLY thing that prevents the Vit D receptors from being activated on our macrophages. This treatment works on lowering nagalase only right?
Scott, your nagalase has been coming down. But how are you feeling? (I guess it's hard to tell with the inflammation though.)
I haven't had time to search more on my own. Would like to hear more from people who have completed the treatment to see how much it impacted their health.
Let's keep this thread going. I will reach out to some of my friends who recently started this treatment and see how they are doing. I'll report back when I can.
Posted by SForsgren (Member # 7686) on :
Feeling worse overall; in the midst of a die-off from the GcMAF macrophage activation. I wouldn't expect to be feeling anything positive given the inflammation response but at least there is provable progress with the nagalase results.
Posted by Marnie (Member # 773) on :
"Finally, DBP-maf was shown to cause a
***reduction in urokinase plasminogen activator receptor (uPAR) expression***
in prostate tumor cells. There is evidence that activation of this receptor correlates with tumor metastasis.
Conclusions
These studies show strong inhibitory activity of DBP-maf on prostate tumor cells
In a modified enzyme-linked immunosorbent assay using immobilized, soluble ECM components,
***plasmin-coated B. burgdorferi***
degraded fibronectin, laminin, and vitronectin but not collagen.
Incubation of plasmin-coated organisms with biosynthetically radiolabeled native ECM resulted in breakdown of insoluble glycoprotein, other noncollagenous proteins, and collagen, as measured by release of solubilized radioactivity.
Radioactive release did not occur with untreated spirochetes or spirochetes treated with uPA or PLG alone.
Kinetic and inhibition studies suggested that the breakdown of collagen was indirect and due to prior disruption of supportive ECM proteins.
B. burgdorferi is an invasive bacterial pathogen that may benefit by use of the host�s plasminogen activation system.
The results of this study have identified mechanisms in which the spirochete can use this borrowed proteolytic activity to enhance invasiveness.
B. burgdorferi has also been shown to possess receptors for PLG.
Bb has receptors for PLG (plasminogen) which converts to plasmin which Bb uses to coat "himself" thus triggering the breakdown of fibronectin, laminin (glue that holds our cells together) and vitronectin.
Collagen breakdown is an indirect result.
*******
See abstract (first section of this link) - important:
Note in the above link the level of C5AR in neutrophils...which secrete *elastase* which is supposed to destroy Bb (but in vitro can be quite different than in vivo!)
Neutrophils, basophils, and eosinophils *normally* have short lifespans compared to
monocytes, macrophages and lymphocytes.
Posted by susieq2 (Member # 30451) on :
Tammy, I would love to hear back about your friends who have started GcMaf.
Scott, Does your inflammatory reaction seem like a typical herx like you've had in the past, or something different?
Still wish I knew what Marnie is talking about. I guess I'm not smart enough to figure it out.
Posted by MichaelTampa (Member # 24868) on :
Just got my nagalase test back. The score was 1.40 which is elevated, suggesting GcMAF could help. Blood was drawn November 2, my doctor got the results December 2.
I just took my third injection yesterday, needed a nap a few hours later (related or not, but unusual), and have been energy testing good for "Nrf2 Activator", a product supposed to be good at combating inflamation (could be from injection therapy on shoulder or related to this).
Posted by nomoremuscles (Member # 9560) on :
quote:Originally posted by Tammy N.: I wonder if elevated nagalase is the ONLY thing that prevents the Vit D receptors from being activated on our macrophages. This treatment works on lowering nagalase only right?
Scott, your nagalase has been coming down. But how are you feeling? (I guess it's hard to tell with the inflammation though.)
I haven't had time to search more on my own. Would like to hear more from people who have completed the treatment to see how much it impacted their health.
Let's keep this thread going. I will reach out to some of my friends who recently started this treatment and see how they are doing. I'll report back when I can.
This is a very good question about the vitamin D receptors.
If scores of people start getting better, I would consider this. But until then, I would definitely take a wait and see approach here.
Posted by SForsgren (Member # 7686) on :
It is much more intense than a normal herx reaction.
Nrf2 Activator is a good option for inflammation and cytokines.
Posted by LymeAware (Member # 26195) on :
Scott -- Congrats on hearing back that your nagalase levels went down! That's awesome! And, I imagine with all the inflammation you are dealing with, it was a really good thing to hear that there was an objective improvement from it all. So glad for you.
I really hope that the intense symptoms you've been dealing with calm down as things regulate. Hearing that this has been much more intense than a normal herx reaction just shows how much it's been. Herxing over here is often pretty intense
MichaelTampa-- Good luck! I hope this really helps!
As for me, I'll be seeing Dr. K this coming week, so I assume I'll hear for certain whether it's worth it for me to treat even with my reported normal nagalase levels. Looking forward to hearing.
Posted by CD57 (Member # 11749) on :
Has anyone heard of the Marshall Protocol, now modified and called Inflammation Therapy? The premise I believe is the cell wall deficient bacteria are responsible for many chronic illnesses.....and the main medication Benicar, has something to do with Vit D receptors......
Posted by CD57 (Member # 11749) on :
I just remembered. The cell wall deficient bacteria, per the MP, cause Vit D dysregulation and block Vit D receptors on cells, thus "turning off" the innnate immune system. (Hope I have that right.).
So Tammy, maybe it's more than just nagalase that can do block receptors.
Posted by MichaelTampa (Member # 24868) on :
I think things are progressing well for me here on this gcmaf. Before treatment, I used Byron White herbals for lyme, bart, and babs (all 3 formulas), twice a day. Soon after starting, I started energy testing for only once per day for each of them. Took my 4th injection recently and now no longer test for the babs formula the last few days, and today did not test for the lyme formula. Sounds very positive to me.
I have been fatigued a good bit, typically a first couple/few days following each injection.
Posted by MichaelTampa (Member # 24868) on :
As an FYI, for those considering this, my doc today told me that biopure europe (austria?) is now or will soon be offering a homeopathic GcMAF remedy. It sounded like they were closed for a few weeks until early January, so it may not be possible to get right now, but perhaps soon. Sounds like this would be a lot cheaper, effectiveness of both versions I guess would remain to be seen.
Posted by Tammy N. (Member # 26835) on :
Very cool, Michael, thanks for the update!
Posted by CD57 (Member # 11749) on :
anything new here
Posted by Tammy N. (Member # 26835) on :
Any updates from our friends using GcMAF?
Scott, how are you doing?
Best to all, Tammy
Posted by Spindleshanks (Member # 32556) on :
I would also like to read some updates!
Posted by Tammy N. (Member # 26835) on :
Any new updates?
Posted by Truesun (Member # 19735) on :
I wanted just to update that I am on the GcMaf Homeopathic. I've only been on it for two weeks and haven't noticed anything yet. As soon as I notice any change I'll post. I do think it is important we keep this post going as I do think it is promising.
I want to add doing the Homeopathic because I'm afraid of the full injection reaction.
Posted by MichaelTampa (Member # 24868) on :
I have been on it about 2 months now, cycling on and off as the pendulum says so. I am off now for the last week. About half way through when I got off through pendulum testing, we took nagalase test again, just got results at that point the nagalase level had gone down from 1.40 to 1.00, the "normal" range is something like 0.35 to 0.95, with 0.60 supposedly a good result. I could be at about optimal level now, and am feeling much better.
I'm getting CD57 test this coming week, which I use as a monitoring tool as well. Just got 3 fire ant bites yesterday, ugggh, hope that doesn't screw things up.
FYI I have been using injections, just ordered the homeopathic in case that ends up being better, just to test it out with the pendulum, but my results are from the injections.
I heard at a conference just last weekend that the homeopathic can cause the inflamation reactions just like the injection can, which at least speaks to it's potential power.
Posted by dan67 (Member # 20344) on :
I am interested in:
1) getting the test 2) possibly trying the homeopathic 3) possibly trying the injectable
Thanks.
Posted by MichaelTampa (Member # 24868) on :
Dan
The test is actually done in europe, but there is one place in the U.S., Vitamin Diagnostics in New Jersey, that will send it to europe for processing. So you need a doc to get some account/arrangement with them and their test kit to mail to V.D. in NJ.
The homeopathic is called "Homeo K MAF" and is available from Biopure--their Europe website, which will ship to the U.S.
The injectable can be purchased at the website you listed.
Posted by lymenotlite (Member # 33166) on :
There is a possible alternative to injections and homeopathic remedies. I've recently gone into SuperSupplements inquiring about hcg for weight loss, something that was discussed on this forum. They said that the drops with no hcg in them (homeopathic drops) did not work but the stuff that had some in them (sublingual drops) did work well.
They now have people making their own sublingual drops from injectable hcg. Wonder whether that same thing would work with GcMaf. I don't know how to make the sublingual drops but maybe that would be similar to the hcg procedure. I have that and can post it but it is a lengthy post, about a page. If anyone is interested in trying, and if it's okay to post a page, I'll put it up. Otherwise a search for mixing hcg for subliminal drops or something similar might do the job.
Posted by Tammy N. (Member # 26835) on :
I ordered the homeo K MAF last week, per one of my docs in Dr. K's clinic. I will be starting soon.
Didn't realize it could have the same inflammatory response as the injections. I will be sure to start slowly.
I, too, did not feel comfortable about the injections.
I hope this is a home run for us.
Best to all....
Posted by Truesun (Member # 19735) on :
Hi, Just an update. Had all over body pain today with other nasty symptoms. This is new to me and I am assuming it is coming from GcMaf. I am going to slow down to one drop. Was taking five twice a day. Bad, Bad, Day
Posted by MichaelTampa (Member # 24868) on :
Just wanted to report, I ordered the homeopathic version (Homeo K MAF) but still have the real stuff for the injections. Although a couple of the Homeo K products are testing as good for me, the Homeo K MAF is not, even during the last couple days where I have tested for large amounts of the injections.
So, sounds like while the homeopathic is powerful for some (sounds like Truesun may be one such example), for me, looks like it's just the injections...
Posted by CD57 (Member # 11749) on :
Anything new here?
Posted by Tammy N. (Member # 26835) on :
I spoke with betterhealthguy recently. He said this was the toughest treatment he's done so far. Crazy inflammation took a long while to subside. Now it is much more manageable. It seems the most notable difference he has seen is that his nagalase level is much lower, for which he is happy about.... he said at least now he has likely decreased his chances of getting cancer.
Posted by MichaelTampa (Member # 24868) on :
I'm getting requests for updates. I don't know that there's a lot new that's going to answer people's nature question of whether this is the magic cure or not, but here is where things are at this point.
I am still on this some. I have taken 9 vials now, each vial is 600 euros plus expensive shipping, so it certainly is not a cheap treatment. Actually, as of today, 600 euros is only $731. Not too long ago it was about $1000, so the price has gone down a bit in that sense (at least for now).
I took it for a few months, got a lot better, then stopped as I stopped energy testing for it. I did start up again, and have been using it with homeopathic lyme nosodes. At times I have tested to take a lot of it, immediately following the lyme nosode. So I think I am targeting the usage against lyme and coinfections.
I haven't run into any of the inflammation problems that betterhealthguy is reporting. My main symptom from this is extreme fatigue, immediately following taking it. In the beginning, within an hour of the dose, I would love to take a nap, even if that wasn't always possible. All the other powerful treatments I have taken have had similar results in terms of fatigue.
I had at a point gotten a good bit of increased energy. Lately, I am fatigued all the time. My nagalase levels are certainly down, but I don't have a recent result. I got it retested 6 weeks ago but haven't got those results yet. It may be with lowered nagalase levels and use of the lyme nosodes, I have my own GcMAF constantly fighting the lyme, causing the consstant fatigue. Or, of course, there are many other possible explanations (perhaps mold in home, thyroid function, yada yada), but I'll note I've had more energy in the past than these days, including one week about a month or so ago.
I do think it is a very powerful treatment. It does not appear to be some magic thing and take some of this for a couple months and magically you're all better no matter what your issues were. It seems possible it could be an important part of getting well. I am not across any such finish line at this point.
Posted by MichaelTampa (Member # 24868) on :
Just got nagalase results today from late June blood draw. It showed 0.85, the lowest yet for me, although very near 0.91 from a couple/few months before. Must say I was surprised with the amount I had taken in that time, that it just went down that much.
It is now in the normal range, per the lab report, although the people making the GcMAF do say if you don't get it down to 0.62, and stop taking it, then it just goes back up. From the conversations I had with them, I do expect them to be very surprised to hear this latest report regarding how little it had gone down.
Posted by dan67 (Member # 20344) on :
Are people actually FEELING better doing this or is it just a game of test numbers?
Posted by MichaelTampa (Member # 24868) on :
I've done a number of types of treatments/substances, often at the same time, so a question like that can be difficult to decipher. I started taking this back in November, so that's 9 months ago, although there was a 2-3 month break.
I did notice in the beginning, over time, I was feeling better, including slowly increasing energy. Eventually, I stopped taking it, and did see things go backwards in terms of symptoms and energy. To stop going backwards, the idea I came up with was to add in lyme nosodes, to tell the body what to start fighting, then injecting the GcMAF to get it to focus on them. I remember having 1 week since then where my energy was not terrible, but mostly since then my energy has been very poor.
What this means, it is difficult to decipher with certainty. Particularly in the beginning, I noticed very soon after the injection I was extremely fatigued. I'm talking within 15 minutes really wishing I could take a nap, kind of fatigue. The injections were weekly, and the energy would improve slowly over the first couple months, except the day of and maybe the day following the injections. This fatigue following treatment, by the way, is something I've experienced with all of the powerful/great treatments I've had.
So now, I've got my nagalase down and probably my home-grown GcMAF way up, using the nosodes, and tired all the time ... Am I constantly fighting with the lyme bugs, and getting close to making it over a big hurdle? Has the treatment done all it's can and left me no better off energy-wise? I don't think there's a for-sure answer to that one at this time. Perhaps there never will be, as I'm not standing pat, continually looking for and trying new things. If I make it over the hurdle, I'll give significant credit to this, as I know it's been a powerful treatment to me. But we'll never know if it could've/would've been done without it, or if it was needed, or not.
Posted by CD57 (Member # 11749) on :
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Posted by LisaK (Member # 41384) on :
any updates on this please?
Posted by Lenorah (Member # 47255) on :
I have read that some people benefit from gcmaf as it activate the immune system and it's macrophages and there for the immune system has more the capability to target the bacterial infection. Before using gcmaf some times the blood test appear to be negative, while gcmaf may help for testing positive which helps for further treatment strategies. Gcmaf may benefit lyme patients i think its not a cure. Hope this helps...
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) 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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