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

[garcia]

We did learn a good bit we didn't know and we'll share it later.

But we are GcMAFed! :Retro smile:

Sushi

Thank you Sushi, Sergio & Vli! Glad the trip went well and that you are back now. Your feedback is much appreciated. Looking forward to more updates if/when you feel like.

 

[filfla4]

Can you expand on this some more? What does "chronic inflammatory disorder" mean and how is it different than what other ME patients have? What are the markers and what are the implications?

Hi Acer,

I will try to respond to your question, but please keep in mind that I'm very very tired and am travelling back home in a couple of hours. I hope to research more about this when I get home.

In his synopsis of my result KDM states: "This patient suffers from chronic inlammatory disorder, possibly associated with a gut-immune-neurotoxic disorder. She has fructose malabsorption and lactose intolerance, a gut dysbiosis and several immune abnormalities. There seems to be an increased bacterial transfection from gut to blood (high sCD14)."

In the explanation of the exam results he states: "Inflammatory syndrome (leucocytosis, increased sedimentation rate, fibrinogen and borderline high CRP)."

When I asked what that meant he said that I have high levels of internal inflammation and that is why I am in so much pain. He said that only 20% of patients get this.

I am really not a medical person and am half brain dead at the moment but I believe that the inflammatory marker is the inflammatory cytokines which in my Redlabs report read:

TGF-BETA1S - activated TGF-BETA 1 serum - my result 87,589 (on a range of 11,400 to 63,300 pg/mL)

Does this make sense? Anyone with half a brain more medically wired than mine, please correct me if I'm wrong!!!

 

[cansado]

Hi,
I met up with sushi, sergio and fifla this week which was very exciting. It is great to share information and meet each other in person. Too bad didn't meet up with Vli.

Anyway, I consider myself as an old timer regarding the GcMaf-- I had 24 shots!!! Not doing so great. Maybe a little more energy in the AM, but nothing to get excited about. In the beginning of my abx course I felt little better, however now at the end of it, I feel horrible.

But I am XMRV- now, and that gives me courage to continue. I assume I am a low responder and that means that I need at least 35 shots according to KDM.

For the record: I dont know my VDR yet, but will report once I know. I am female and I have been sick since 1989. I function for 30-40%. Not able to work, but can walk pretty far. Brainfog, recuperation and tiredness are my main symptoms. On Nexavir every day, and artesunate 3x wk, B12 shots etc

 

[froufox]

Thanks to everyone who has reported back. Hope you are all recovering from the trip now. It'll be very interesting to compare all of our experiences of GcMAF.

Thanks for sharing fifla4 thats very interesting about the 20% group. I am sorry that you suffer with a lot of pain. The only thing i read about TGF-Beta1 was on wikipedia...it seems to have lots of different functions, depending on what cells it is affecting http://en.wikipedia.org/wiki/TGF_beta_1

I know of others with either a high or very low ESR rate...mine has always been with the 'normal' range but i dont know how reliable the testing is. All the best with the abx etc.

 

[froufox]

Hi Cansado

I'm sorry that u havent had much improvement from the GcMAF so far, but that is good news that u have tested negative to xmrv now. I was just curious how does KDM interpret a change from a +ve to a -ve test?

I am personally not doing too great at the moment but i think that is partly due to diet relapse....could also be due to GcMAF too i guess. Without having any test results back yet I also believe that my coinfections are out of control and that I suspect that i will also very likely need to be on abx alongside the GcMAF.

Good luck with all the treatments, I hope that u start to experience more improvements as time goes on!!

 

[Sushi]

Thanks everyone for the good wishes and for the reports from the fatigued guinea pigs who traveled to Brussels this week. :In bed: !!!

filfla4: I hope you got home safely and are now resting also.

I think the info from the appointment with KDM is going to "dribble" out of me as I remember it and have energy to post.

One thing that stood out for me was KDM's comments on my cardiac symptoms--including OI. I have had nearly every cardiac test known to medicine due to the years of chest pains etc., and a history of cardiac problems in my family. KDM is a cardiologist (he has 2 or 3 other specialties also--including pathology), so he was very qualified to evaluate the sheaf of cardiac tests I brought to him.

Basically, all my cardiac tests are normal except for slight mitral and tricuspid valve prolapses. I have no blockages, or other abnormalities, except a tiny PFO. Yet I have markedly oscillating BP, pulse, and chest pain and shortness of breath with any exertion. (or in reaction to certain medications and supplements)

KDM said that (if I am remembering correctly) that all these symptoms (including the PFO) were coming from diastolic dysfunction. I am pretty sure he related the OI to this too. I told him that I have had rather severe cardiac reactions to certain supplements and drugs and that these were relieved by taking large doses of minerals. He pointed out that it is almost certain that I have an imbalance between intercellular and extracellular minerals and that this fit the whole picture. He agreed that taking high doses of minerals (particularly magnesium & potassium (not sure about calcium), was a good strategy when I had such symptoms. He also mentioned a drug to help deal with this, but all this will be looked at when my test results are in.

An interesting question that he asked us both (which makes us think!) was whether we had had contact with rats or mice. I had worked closely with lab rats as a teenager.

We did ask about the different forms of GcMAF that are available and he said this--which again points to an obvious interpretation: Yamamoto patented his formula in every country but the Netherlands. KDM's product is being made in the Netherlands. The GcMAF that KDM supplies is a wholly human product.

He also mentioned that he is doing ongoing research and will report on this when the data becomes clearer.

As far as lab tests, filfla4, we were told to have our calcium and vitamin D3 levels checked every other week for the first month on GcMAF. If the results stayed in the normal range, then to have these two values checked once a month. We only need to report the results to KDM if our values go out of range. GcMAF apparently can affect both calcium and Vit D levels (I know that Vit D can go up and should not be supplemented). I assume he wants us to check for rises in calcium levels as well.

One more comment on the effort involved in being seen by KDM at Himmunitas: Follow-up appointments can be done on a "day trip" basis (unless you are traveling a significant distance--in which case a phone consult can be arranged). For the first appointment, part of the energy drain is figuring out the logistics of where to find the kind of food we can eat, how to use public transportation, (taxis in Brussels are very expensive) etc.

By the 3rd day, we had figured that stuff out and had we had that knowledge on the first day, it would have been easier. Of course a lot of those logistics depend on the hotel you are staying at. We stayed at the Campanile Vilvoorde and if anyone else wants to use that hotel, we would be happy to share what we learned. (the is a direct bus to the clinic)

That's is for the moment!

Sushi :In bed:

 

[Ronan]

More GcMAF'ers in the club then! Hope you are getting some well deserved rest now. I was wondering if you had any info on how KDM said you should take the GcMAF. I am taking it IM and sent an email to check this was ok but it was only the nurse who responded telling me it was fine to keep taking it IM. From reading on here though everyone seems to be taking it IV

 

[Sushi]

More GcMAF'ers in the club then! Hope you are getting some well deserved rest now. I was wondering if you had any info on how KDM said you should take the GcMAF. I am taking it IM and sent an email to check this was ok but it was only the nurse who responded telling me it was fine to keep taking it IM. From reading on here though everyone seems to be taking it IV

Hi Ronan,

Yes, more in the GcMAF bunch!

As far as taking it IV or IM, we specifically asked if we could take it IV in the countries we will be in, as we had read in the Dutch forum that it seems to be his preference to give at least the first 10 to 15 injections IV. I think the reason that many who can't travel to Brussels for the weekly injections are taking it IM, is that it is hard to arrange for (convince?) a doctor in your own country to give it to you IV. Whereas you can give it to yourself IM. And, some seem to tolerate it better IM.

We got a short note signed by KDM) (addressed to a doctor in Spain who had said he would give it to us IV) just giving the basic info. We were also given a letter for customs, though that issue didn't arise and isn't likely to if you are carrying it in your checked luggage.

Oh, one more interesting comment from KDM just "dripped" out of my brain. I had done an inflammatory cytokine panel with VIPdx before seeing KDM. I didn't show any elevation except in IL8 and that wasn't nearly as high as others have reported. I told KDM that I was taking pretty high doses of curcumin and asked if that could be keeping inflammation in check. He said that if you take at least one and a half grams of curcumin daily it could well help control inflammation. I had been taking about two grams.

Best wishes to all,
Sushi

 

[undcvr]

Hi Acer,

In his synopsis of my result KDM states: "This patient suffers from chronic inlammatory disorder, possibly associated with a gut-immune-neurotoxic disorder. She has fructose malabsorption and lactose intolerance, a gut dysbiosis and several immune abnormalities. There seems to be an increased bacterial transfection from gut to blood (high sCD14)."

In the explanation of the exam results he states: "Inflammatory syndrome (leucocytosis, increased sedimentation rate, fibrinogen and borderline high CRP)."

When I asked what that meant he said that I have high levels of internal inflammation and that is why I am in so much pain. He said that only 20% of patients get this.

I am really not a medical person and am half brain dead at the moment but I believe that the inflammatory marker is the inflammatory cytokines which in my Redlabs report read:

TGF-BETA1S - activated TGF-BETA 1 serum - my result 87,589 (on a range of 11,400 to 63,300 pg/mL)

Does this make sense? Anyone with half a brain more medically wired than mine, please correct me if I'm wrong!!!

Hey Filfla, there are a few inflammatory markers, others are your fibrinogen level and your CRP ( C-reactive protein ) levels. It seems they are all high as he says your CRP is borderline. Fibrinogen is in indirect way of looking at inflammation, it measures the coagulation speed of your blood, ie how thick it is. The more fibrin in your blood, the thicker it is, the more pressure is needed to push through into the capillaries straining the walls of your vessels. Not a good state to be in. Coagulated blood clots quickly, it will be difficult to draw blood from you, it would be too thick and will not flow well.

Coagulation and fibrinolysis can be taken care of with blood thinners or enzymes. They give regular low-dose Heparin injections for that.
Inflammation can be relieved from regular NSAIDs like Asprin. Either way they both have got to be looked into ASAP. Treating either both or just one of these conditions will bring you great relief all throughout your body since its your blood.

Hope this helps alittle.

 

[leela]

There's a very effetcive (albeit expensive) enzyme product for reducing fibrin called Neprinol:
http://arthurandrew.com/neprinol

 

[undcvr]

I used both Asprin and Solgar's Pancreatin. Its even enteric coated. I dont think Solgar knows quite exactly what they are sitting on becos they market it as a digestive aid. It is very very cheap. So is Asprin. This disease has made is broke, I cannot afford much in terms of supplements and I had to get creative. They are very effective.

 

[Chris]

Hi, Sushi--many thanks for being brave enough to go and try this, and generous enough to share your experiences--we are all watching with bated breath! Your comments on cardiac function and KDM's replies interest me, since I have many of those symptoms --one of my basic PEM symptoms is an inexorable rise in BP, which can last for hours, and hangs on in reduced form for a few days, chest pains go along with that, and so on. I do have a degree of diastolic dysfunction, but cardios are reluctant to look at this, partly since they have no good way of treating it.

I know that you have friends who see Paul Cheney, and so assume you know the conversation with Carol Sieverling, "The Heart of the Matter," which opens up this area, and then his DVD, "CFS: Is Oxygen the Problem," which probes much further. There he states that OI is the primary symptom of diastolic dysfunction. He also cites an article from the Mayo Clinic, around 2006, that shows that over the years there has been a steep increase in the % of heart failure patients who have "preserved ejection fraction," i.e. diastolic dysfunction/ heart failure. One can only guess at the causes of this marked change: some cardios blame statins, which can and do damage mitochondria and diastolic function, and maybe, just maybe, it shows the effects of XMRV in damaging mitos and triggering CFS? In any case Cheney does say that Artesunate improves diastolic function--which led me to try it, with no very marked success. He does in the DVD give a detailed account of the parameters he measures, including the IVRT (Isovolumetric Relaxation Time, I think)which you could perhaps take to a cardio and ask to have measured in an echo.

May I ask what helped improve your IO the most? And I do hope your trial of Gc-MAF proves successful--best wishes, and good luck! Chris

 

[Sushi]

Hi, Sushi--many thanks for being brave enough to go and try this, and generous enough to share your experiences--we are all watching with bated breath!

I know that you have friends who see Paul Cheney, and so assume you know the conversation with Carol Sieverling, "The Heart of the Matter," which opens up this area, and then his DVD, "CFS: Is Oxygen the Problem," which probes much further. There he states that OI is the primary symptom of diastolic dysfunction. He also cites an article from the Mayo Clinic, around 2006, that shows that over the years there has been a steep increase in the % of heart failure patients who have "preserved ejection fraction," i.e. diastolic dysfunction/ heart failure. One can only guess at the causes of this marked change: some cardios blame statins, which can and do damage mitochondria and diastolic function, and maybe, just maybe, it shows the effects of XMRV in damaging mitos and triggering CFS? In any case Cheney does say that Artesunate improves diastolic function--which led me to try it, with no very marked success.

May I ask what helped improve your IO the most? And I do hope your trial of Gc-MAF proves successful--best wishes, and good luck! Chris

Thanks Chris!

Yes, I'm familiar with Cheney's work with diastolic dysfunction--and of course Cheney and KDM are in contact. I wish that more doctors would "network"--they would benefit and so would their patients.

KDM prescribes artesunate to some (a lot? not sure) of his patients but always in synergy with other therapies. I don't know the criteria he uses as to whether or not to prescribe it. Sorry it didn't help you.

As far as what helped my OI the most, the first treatment that helped was increasing norepinephrine in the synapses with drugs (strattera helped the most). But later I wanted to work with the problem more deeply and weaned off the meds and found that methylation therapy helped OI a lot.

I also use compression garments when needed, but I need them much less now.

Thanks for your comments!

Best Sushi

 

[aquariusgirl]

sushi
That kdm comment: were you around rats or mice.. made me laugh.
I suspect most of us inherited this bug....

 

[Sushi]

sushi
That kdm comment: were you around rats or mice.. made me laugh.
I suspect most of us inherited this bug....

I think I inherited it--my Mom had most of the same symptoms. But still remember the rash I got from sticking rat snouts in my ear to listen to their breathing!

Sushi

 

[aquariusgirl]

sushi: WPI is assembling a physician working group.
see comment below from X Rx blogspot, comments section.


Yes. I am already speaking to many doctors. We are assembling a Physician Working Group to share clinical ideas going forward. I invite your doctor to contact me:
jdeckoffjones@gmail.com

Jamie

 

[serg1942]

Hi everybody,

First, thanks to all of you for your support!!!

Sushi and Vli told you already many of the things we learned from KDM’s visit. I am warned out right now, but still would like to add a few more things that came to my mind while catching up with this thread:

- MY conclusion about what KDM told us, is that KDM’s GcMAF is Yamamoto’s formula. (Read Sushi’s first post on our KDM’s visit).

- I told him about my chronic hand tremors and chest pressure, that appeared 4 years ago after a few months on DMPS IVs chelation infusions for Hg poisoning. He explained (and I think it does make sense) that probably it was linked to my lack of motility: My chronic dysbiosis prevents my “good bacteria” in the gut from synthesizing serotonin (I think lack of Bh4 due to low methylation capacity is another factor). Lack of serotonin produces low motility (I can confirm this because years ago my digestion improved overnight from taking serotonin reuptake inhibitors), and low serotonin flux to the brain accounts for my “messed up” nervous system (I think excitotxicity is also a factor—not sure how serotonin is involved with this). Also, my low serotonin would explain my reversed sleep cycle.

- From some persons (that I do consider reliable sources), we were warned about the possible danger of BGLI’s GcMAF. I really recommend all of you living in the USA not to take BGLI for the moment, until more data is available.

- Prof KDM made very clear that he is more a researcher than a clinician (physician?) , and so, we should adapt to his way of working with patients, i.e. we cannot expect from him what we could expect from a typical doctor. I think it is good to have this into account.

- He told us he is not treating XMRV with GcMAF. He is just “supporting our bodies”, but future studies are need to be done in order to know whether GcMAF actually is a treatment for XMRV. In this regard, he told us they are preparing double-blind placebo-controlled trials with GcMAF, with a few hundred of patients. My impression is that he is collecting data with the pioneers on GcMAF, in order to choose a proper cohort that ensure a positive outcome from the trial (and I am very glad of being his guinea pig, of course

- He told us they had already figure out many things about the behavior of XMRV that he could not share with us, until the ongoing studies are published (I believe he said within 10 months). He said XMRV was not as dependent on hormones as we think, but not sure if he referred just to some of them, or all of them…Anyway, I liked his confidence in the ongoing research and on his "top secret" knowledge...

- I asked: “OK, technically, we are not treating XMRV with GcMAF, but, is it possible by taking GcMAF to turn off the virus and therefore reach a significant improvement”, and he said: “YES”.

- I brought to him my picture of “before and after LDN”, where it is obvious my physical change. I also explained my great improvement on LDN and how I consider LDN my mainstay health-wise. The first thing he said was: “LDN is bad”. Then I couldn’t be more discouraged! I did not want to stop it for anything in the world…Then he went on to explain that LDN down regulates your immune system an this is why we feel better. He then (maybe realizing of my face of ??&%$%), explained that, the real problem with LDN was that nobody knew what it was doing…that there are a lot of endorphin receptors, interactions, etc, and that it was impossible to know its target…Anyway, he finally told us it was fine to continue it, and that we will get back to this issue in the future.

- He seems pretty confident about reliability of VDR testing at RED labs. I did not want to expend time on this. He said Bsm mutation was more important than Fok when it comes to GcMAF response prediction.

- I think this is it as for now…If something else comes to my mind I’ll let you know. Of course as far as GcMAF, as Sushi wrote, I was injected with half dose of a vial, and I cannot tell if I felt something from it, because I was too tired to tell…If anything, I felt more fatigued and a slight unusual headache for half an hour the next morning. I also felt less appetite than usual. This was actually noticeable…(let’s say my appetite is zero out of ten. That day it was -5, out of ten…

- Upps! Last thing: he wants me to do a stomach biopsy to look for other viruses than XMRV (for which I am positive by culture).

-Ah! He said something we already know, but I think it’s worth reminding: XMRV is more difficult to find in sicker people than in less sick patients. He also said that if culture were positive and serology were negative (Sushi’s and my case), provided that the serology test is correct (he said it was still unreliable), this means that your B cells are too affected to produce antibodies, meaning that the infection is more spread.

- And finally, we can confirm that when he is not finding XMRV, he looks for it in stomach biopsies (How often does he do this, or what's the percentage of positives found on CFS, I don't know)

Best,
GcMAFFED Sergio :victory::victory::victory::victory::victory::victory::victory::victory::victory::victory:

PS- As far as methylation support, it was my impression that he is not really considering it as an important factor. It is my bet that if he is observing success with GcMAF plus Nexavir, plus Abx if needed, etc., if we add to this combo the methylation support, the success will rise significantly...

 

[serg1942]

Hi Uncvr,

Yes, it contradicts Dr. Mikovits on this point...I was very brain fogged, and of course my first language is not english, so I may be wrong...I do believe I heard this though...Sushi and Vli I think could confirm/deny my assertion...

reagrds,
Sergio

 

[vli]

I don't know what to think about this and don't know what exactly KDM told Sushi and serg in their appt. I can only say that I'm negative by both culture and serology and when KDM saw that he simply said the virus often hides.

 

[Cort]

Lots of interesting stuff!

He told us they had already figure out many things about the behavior of XMRV that he could not share with us, until the ongoing studies are published (I believe he said within 10 months). She said XMRV was not as dependent on hormones as we think, but not sure if he referred just to some of them, or all of themAnyway, I liked his confidence in the ongoing research and on his "top secret" knowledge...

Isn't that interesting - they've figured out some of the hormone angle - this would make sense, though, because some people do do better on XMRV...glad to hear of the ongoing studies...let's start the clock now - by Nov we expect several studies.

Good - a supportive element...doesn't attack the virus but.helps the immune system knock down the virus

- I asked: OK, technically, we are not treating XMRV with GcMAF, but, is it possible by taking GcMAF to turn off the virus and therefore reach a significant improvement, and he said: YES.

How about LDN! Is the immune system complex or what?

- I brought to him my picture of before and after LDN, where it is obvious my physical change. I also explained my great improvement on LDN and how I consider LDN my mainstay health-wise. The first thing he said was: LDN is bad. Then I couldnt be more discouraged! I did not want to stop it for anything in the worldThen he went on to explain that LDN down regulates your immune system an this is why we feel better. He then (maybe realizing of my face of ??&%$%), explained that, the real problem with LDN was that nobody knew what it was doingthat there are a lot of endorphin receptors, interactions, etc, and that it was impossible to know its targetAnyway, he finally told us it was fine to continue it, and that we will get back to this issue in the future.

Could this mean auto-immune problems - does he say anything about that?