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» LymeNet Flash » Questions and Discussion » Medical Questions » GcMaf (Page 2)

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Author Topic: GcMaf
baileypup
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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.

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GiGi
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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.

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CD57
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Hmm. Is the idea to get the nagalase down and then discontinue the therapy? Not sure what the end point is here.
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GiGi
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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.

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SForsgren
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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.

--------------------
Be well,
Scott

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CD57
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Other than the temporary inflammation, are there any downsides? I can't find any on these sites.....
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GiGi
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http://www.gcmaf.eu/info/index.php?option=com_content&view=article&id=109&Itemid=50

Please see Side Effects.

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GiGi
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GcMAF activated Macrophages attack other diseases.

http://www.gcmaf.eu/info/index.php?option=com_content&view=category&layout=blog&id=8&Itemid=9

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lou
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If it causes increased inflammation, as in a herx, most people with ALS/Lyme will not be able to take this treatment.
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SForsgren
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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.

--------------------
Be well,
Scott

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susank
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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.

--------------------
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

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SForsgren
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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.

--------------------
Be well,
Scott

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Knight33
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so has anybody here actually had positive results from GcMAF for lyme?
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GiGi
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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.

http://www.gcmaf.eu/info/index.php?option=com_content&view=article&id=112&Itemid=55

Take care.

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Rumigirl
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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?

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MichaelTampa
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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.
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MattH
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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

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Rumigirl
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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!

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susank
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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.

--------------------
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

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MichaelTampa
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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

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susank
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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?

--------------------
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

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noodlydoo
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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.

http://www.inthegut.com/showthread.php?66-GcMAF-Responses

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Rumigirl
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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.

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MichaelTampa
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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.

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MattH
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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

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tickssuck
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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

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Tammy N.
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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:)

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SForsgren
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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.

--------------------
Be well,
Scott

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Carol in PA
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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.

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SForsgren
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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.

--------------------
Be well,
Scott

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CD57
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up
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dal123
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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?
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SForsgren
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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.

--------------------
Be well,
Scott

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baileypup
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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?

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SForsgren
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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.

--------------------
Be well,
Scott

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LymeAware
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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...

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SForsgren
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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! [Smile]

--------------------
Be well,
Scott

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MichaelTampa
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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

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SForsgren
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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.

--------------------
Be well,
Scott

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LymeAware
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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 [Smile] Sounds great.

Yes, I'm seeing my normal nagalase range as a good sign! [Smile] 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?

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Tammy N.
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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.
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LymeAware
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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!
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MichaelTampa
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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.

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CD57
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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?

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SForsgren
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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. [Smile]

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.

--------------------
Be well,
Scott

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Tammy N.
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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?
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dan67
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any update on this?
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MichaelTampa
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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.

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GiGi
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The lab work is sent to Health Diagnostics, but actually done in Europe, Holland, I believe.
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Rumigirl
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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.

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