GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

[*GG*]

Anyone else notice a slightly raised body temperature a few days after the GcMAF? I haven't used a thermometer but i have this idea that my body temp is slighly raised... maybe its just my imagination?

Perhaps it is part of a healing reaction? I read this recently: Recognising and managing healing reactions in M.E. by Jodi Bassett from HFME,

http://www.hfme.org/treatmentconcepts.htm#698360769

GG

 

[Overstressed]

Hi,

sorry if I offended someone with what I wrote earlier. Actually, I just wanted some clarification from Cansado, because writing that you're negative can mean a lot of things. And it seems, different people have a different understandings of what 'negative' means.

And yes, to some extent I pretty clear know what 'integration into DNA' means. You have also some harmless viruses that integrate in our DNA, and yet, we get rid of them too. There are a lot of mechanisms our bodies have developed for such thing. There's certainly DNA-repair, and in case of viruses your DNA might get googled and render the virus not infectious anymore. These are just examples.

But, when someone talks about 'negative', clarification is needed(not only for me), and that's what I have asked, nothing more.

I'm pretty disappointed in the lectures in etiquette, grammar and science I get here from a few. The science I don't mind, the etiquette and grammar I do.

Let's be honoust and clear, on the science matter, not any of you(me included) knows, even the scientist don't know. Concerning the grammar, als jullie willen, kan ik het ook in het Nederlands proberen, oder in Deutsch, peut-tre en franais ?

Conclusion: I just asked Cansado a question. And let's now talk about Gc-Maf again.

OS.

 

[Mya Symons]

Sorry if someone already posted this, but there was 56 pages to go through and I couldn't do that today.

Short Video on Dr. De Merlier speaking an GcMAF (can't see the board, however)

<iframe title="YouTube video player" width="640" height="390" src="http://www.youtube.com/embed/JDYqVDrnlZw" frameborder="0" allowfullscreen></iframe>

-OR-

http://www.youtube.com/watch?v=JDYqVDrnlZw

 

[leela]

Let's be honoust and clear, on the science matter, not any of you(me included) knows, even the scientist don't know.

Etant honnte et clair, c'tait toi qui demand "l'preuve." J'ai offert mon comprehension de la science actuelle en rponse. :innocent1:

I'm pretty disappointed in the lectures in etiquette, grammar and science I get here from a few. The science I don't mind, the etiquette and grammar I do.

Que cela te doit ou non, on est mieux servi lorsqu'on met de cot les gants de boxe et qu'on essaye de communiquer avec respect et compassion. La grammaire c'est autre chose. On s'en fou!

INow talk about Gc-Maf again.

On est 100% d'accord!

 

[Sushi]

Sorry if someone already posted this, but there was 56 pages to go through and I couldn't do that today.

http://www.youtube.com/watch?v=JDYqVDrnlZw

Hi Mya,

Yes, that is an encouraging video. I think it was shot about (guessing) 6 or 7 months ago--maybe more--and KDM has had a lot more people responding well since then. However, not everyone seems to respond and some respond much more quickly than others. He reports some patients becoming functionally well.

I'd settle for that--even if I have to wait 6 months! Five shots in and counting...

Sushi

 

[leela]

I'd settle for that--even if I have to wait 6 months! Five shots in and counting...

Go Sushi! :victory:

 

[serg1942]

Hahahaha!!! Vale, yo tambin me uno a la reivindicacin idiomtica, me he redo mucho...Podemos crear un compendio lingstico ms que interesante entre todos los susudichos....

Hey, probably I would win a contest of the worse English grammar, and from my bad english, I understood perfectly the good intention of OS and leela...Actually the grammar is not the problem, but the lack of empathy for the fantastic people participating here and sharing altruistically their experiences. Of course it takes time, willingness, and humanity to get to know people. On the other hand, it takes just a few seconds to criticize other patients...

Yes, let's talk about GcMAF!!:victory:

Regards,
Sergio

 

[leela]

Podemos crear un compendio lingstico ms que interesante entre todos los susudichos....

What a hilarious and hefty volume that would be!

empathy for the fantastic people participating here and sharing altruistically their experiences

Una aspiracon perfecta y hermosa sergio!

 

[mojoey]

I apologize if someone already posted this earlier, but I tried going through the threads and couldn't find the info I'm looking for: what tests he requires that we can get done outside of europe before our 1st appointment?

I already ordered the test kits for VDR and FMA1 stool test; just wondering if there's anything else. I have the full immunological workup done by Peterson so I'm not in a rush to get that re-done unless he's adamant about it.

Also, can someone remind me which VDR (Bsm or Fok) Kenny thinks is more important in predicting response?

 

[Sushi]

I apologize if someone already posted this earlier, but I tried going through the threads and couldn't find the info I'm looking for: what tests he requires that we can get done outside of europe before our 1st appointment?

I already ordered the test kits for VDR and FMA1 stool test; just wondering if there's anything else. I have the full immunological workup done by Peterson so I'm not in a rush to get that re-done unless he's adamant about it.

Also, can someone remind me which VDR (Bsm or Fok) Kenny thinks is more important in predicting response?

You have your XMRV + and that is the main one. I did inflammatory cytokines and VDR, and though he has started most patients who were XMRV + on GcMAF at their first appointment, it is likely he will want to see the results of whatever other tests he wants to prescribe before working out the rest of your protocol with you--no matter whatever tests you bring with you.

For those coming from a distance, that might mean a follow-up phone consult to get the rest of your protocol. He did supply one patient from another continent (on the first visit) with enough GcMAF to finish her treatment.

He thought BSM was more important. He does the hydrogen sulfide test in the office.

Others can probably suggest other tests that you might get before coming--particularly if you have insurance that will pay for it.

He prescribed different tests for each of us according to the medical records we brought and the symptoms we presented so it is hard to have all the tests he might want in hand on the first visit.

That is one reason I am staying in Europe--to see him again and get whatever meds I might need for the full protocol.

Sushi

 

[mojoey]

Thanks Sushi for the summary.

I'll probably just get the stool testing and VDR done first then.

I am considering staying in Europe as well for the same reason.

 

[slayadragon]

Folks here are talking about IRIS a lot, so I imagine that some of you have read a bit about it.

IRIS is associated with AIDS, but also with cryptococcus gatti and neoformans. These are pathogenic encapsulated yeasts that mostly affect people with compromised immune systems. (C. gatti can be a problem for people who are immunocompetent as well.)

I am finding it hard to believe that this stuff is not a problem for some of us. Our bodies tend to get overrun with fungi anyway, and we're especially sensitive to fungi of all sorts. I got extremely sick merely from trying one capsule of saccharomyces boulardii, which is supposed to be a "friendly" encapsulated yeast. (With friends like that, who needs enemies....)

Apparently HIV+ people who get IRIS on HAART often have cryptococcal infections, and they do better when they're treated directly for them. I thus am wondering if maybe we should be looking for this too.

http://cid.oxfordjournals.org/content/40/7/1049.full

Have any doctors mentioned this to any of you? Has anyone ever been tested for it?

Thanks much for your help.

Best, Lisa

 

[Nabo]

Hi Nabo

Sorry you went through a really rough time on the GcMAF aswell, but thats good news that those symptoms have stopped now. I can really relate as some days have been very bad for me too. Have u any idea why they have stopped now? Did u do anything specific to try and deal with them, or did u just stop the GcMAF? Sorry if ive missed some of your posts.

Just to let everyone know that I received a reply to my email from KDM's clinic today advising me to lower the dose to 1/5th of the normal dose, so they have told me to take 20ng per week for the next 4 weeks. So I will try that.

Yes I defintely agree with u Aq Girl about the cytokines and depression, but I think a lot also depends on the ability of your endocrine system to step up to the mark to deal with the inflammation so i guess its like a chicken and egg thing with the immune & endocrine systems being intimately connected... I have low cortisol which doesnt help!

Hi Froufox,
That is zo weard!!! I felt almost the same as you and i mailed himunitas en they said stop the nexavir en gc maf. And you only have to lower the dose??
That makes me a bit angry!
After that email, i mailed them back en i called them cause i needed answers.
I was very worried and i only heard stop with it.
Well after a view days i receaved another mail with again just ONE LINE.
So that made me even more angry, i just wanted answers!!!

So i decided that i will follow my own gut feeling about this, and i diddnt stop.
So i am still using gc maf en nexavir.

my symptoms started in week 7 en around my 10th shot i started to feel normal again.
So the worsening of the symptoms (headache, fatigue, irritation/down feeling) went away after around 3 weeks. Now i feel back to normal, so not better then january. but at least not worse!

I got my 11th shot yesterday.
Sorry for my bad english.

 

[slayadragon]

I'm wondering what product those taking curcumin for IRIS are using.

I have been experiencing IRIS symptoms from another treatment and just tried the product below. I believe Jamie mentioned it on her blog within the past month or two.

I think it may be helping me, though it's hard to know since maybe the response has just died down. Has anyone else tried it?

Thanks, Lisa

*

Meriva

*Curcumin phytosome with superior bioavailability

Meriva is a patented curcumin-phosphatidylcholine complex for enhanced absorption and bioavailability. The proprietary phytosome technology combines curcumin and phosphatidylcholine at a 1:2 ratio promoting resistance to degradation in the digestive tract and efficient absorption across membranes. This produces significantly higher peak plasma concentrations and larger area under concentration-time curves (AUC). In a single-dose pharmacokinetic animal study, plasma curcumin levels were 20-fold greater with Meriva than standard curcumin. A preliminary human pharmacokinetic study demonstrated that elevations in plasma curcumin from 450 mg Meriva were similar to values obtained from 4,000 mg of a standard curcumin extract. The efficacy of a low dose was demonstrated in a 3-month clinical trial, in which 200 mg Meriva per day maintained healthy C-reactive protein levels and provided significant benefit in joint comfort, mobility and quality of life.

Meriva delivers highly bioavailable curcumin, providing maximal support for healthy inflammatory balance, as well as musculoskeletal, digestive, liver, brain, cellular and cardiovascular health.

is a trademark of Indena S.p.A.

http://www.pureencapsulations.com/itemdy00.asp?T1=MCU1

 

[Sushi]

I'm wondering what product those taking curcumin for IRIS are using.

Thanks, Lisa

Hi Lisa,

I'm just taking the Jarrow product--Curcumin 95. I doubt if it is the best but Jarrow is a pretty good commercial brand that is not too costly--and curcumin tends to be costly.

Any one else taking a brand they like?

Sushi

 

[Jenny]

I was taking Enhansa, but it didn't seem to do anything.

Jenny

 

[froufox]

Hi Nabo

Sorry you felt angry and upset with the response u received from KDM, I dont know why they have given us different responses but I can only guess that even though I told them that I had been feeling worse on it, I also told them that I thought I was also experiencing some subtle benefits from the GcMAF. So maybe he didnt think it was so urgent in my case... i dont know. So, if u just told them that u were just feeling much worse, perhaps thats why they told u to stop. As others have said, without actually seeing u in person, KDM probably thought that was the safest thing to suggest.

I do understand the frustration with the short responses though!! He's obviously very busy and receives tons of emails every day and so unfortunately doesnt have time to answer in more detail. Very frustrating I know to not have more feedback.

Anyway thats really interesting and also good news to hear that your worst symptoms have stopped now. It sounds like u didnt take any break at all from GcMAF and just carried on with the weekly injections, is that right? I presume that u are on the same dose as the rest of us...100ng? Good luck with it all anyway and i hope that u dont get any horrible symptoms again!

I took a break for a week but I did another Hepapressin injection this morning and will get back on the GcMAF tomorrow on a lower dose, maybe 1/2 or 1/3. Im feeling slightly better at the moment...the horrible deep depression has gone and im being a lot more strict with my diet which is helping.

One thing i keep forgetting to ask people is has anyone else gotten stinging sensations since they started on GcMAF? I have on about 4 or 5 occasions...its mainly on my face/head, but also sometimes my hands & arms. I think its a histamine reaction...it got quite bad last week though so i took an anti-histamine - ketotifen - but the drug didnt suit me at all and put me into a complete stupor for a whole day!! Anyway just curious if anyone else has had this particular reaction?

Cheers

Hi Froufox,
That is zo weard!!! I felt almost the same as you and i mailed himunitas en they said stop the nexavir en gc maf. And you only have to lower the dose??
That makes me a bit angry!
After that email, i mailed them back en i called them cause i needed answers.
I was very worried and i only heard stop with it.
Well after a view days i receaved another mail with again just ONE LINE.
So that made me even more angry, i just wanted answers!!!

So i decided that i will follow my own gut feeling about this, and i diddnt stop.
So i am still using gc maf en nexavir.

my symptoms started in week 7 en around my 10th shot i started to feel normal again.
So the worsening of the symptoms (headache, fatigue, irritation/down feeling) went away after around 3 weeks. Now i feel back to normal, so not better then january. but at least not worse!

I got my 11th shot yesterday.
Sorry for my bad english.

 

[Ronan]

No stinging senstation for me so far. Can someone elxplain what is meant by IRIS symptoms, i've heard curcumin mentioned on here alot but have no idea what it helps with!

 

[froufox]

Hi Lisa,

I tried Meriva last year and don't recall noticing any difference between that and other curcumin/turmeric products that Ive tried. Before I tried Meriva, I tried New Chapter Turmeric Force and found that pretty effective to begin with anyway, then the effects seem to wear off, as things always do with me. But it definitely did seem like a very good product at first...it really seemed to get into my brain and helped with brain inflammatory symptoms/depression, but not really with anything else like energy etc.

The Meriva one seemed to help a bit but not massively from what I recall.

Now I'm on the same one as Sushi, the Jarrow 95. Ive felt good effects from that too, mainly in my head again, but as with all the other curcumin/turmeric supps ive tried, i generally only seem to notice the benefits when my symptoms get really bad. Otherwise i find the effects quite subtle, if i notice them at all. I take 1.5gm a day...i guess its worth trying a higher dose though. But in my experience, they all seem much of a muchness.

What dose of Meriva are u on?

I'm wondering what product those taking curcumin for IRIS are using.

I have been experiencing IRIS symptoms from another treatment and just tried the product below. I believe Jamie mentioned it on her blog within the past month or two.

I think it may be helping me, though it's hard to know since maybe the response has just died down. Has anyone else tried it?

Thanks, Lisa

*

Meriva

*Curcumin phytosome with superior bioavailability

Meriva is a patented curcumin-phosphatidylcholine complex for enhanced absorption and bioavailability. The proprietary phytosome technology combines curcumin and phosphatidylcholine at a 1:2 ratio promoting resistance to degradation in the digestive tract and efficient absorption across membranes. This produces significantly higher peak plasma concentrations and larger area under concentration-time curves (AUC). In a single-dose pharmacokinetic animal study, plasma curcumin levels were 20-fold greater with Meriva than standard curcumin. A preliminary human pharmacokinetic study demonstrated that elevations in plasma curcumin from 450 mg Meriva were similar to values obtained from 4,000 mg of a standard curcumin extract. The efficacy of a low dose was demonstrated in a 3-month clinical trial, in which 200 mg Meriva per day maintained healthy C-reactive protein levels and provided significant benefit in joint comfort, mobility and quality of life.

Meriva delivers highly bioavailable curcumin, providing maximal support for healthy inflammatory balance, as well as musculoskeletal, digestive, liver, brain, cellular and cardiovascular health.

is a trademark of Indena S.p.A.

http://www.pureencapsulations.com/itemdy00.asp?T1=MCU1

 

[Dan_USAAZ]

I'm wondering what product those taking curcumin for IRIS are using.
[/url]

I am taking LifeExtension Super Curcumin.

800mg Curcuma Longa
5mg Piperine

The piperine is suppose to help with absorption. Recommended 1 or 2 capsules a day. I take 2. Affordable.