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

[filfla4]

KDM's idea is that 70% of our immune system is in our gut. He believes that there is a build-up of bad bacteria due to years of dietary intolerances, which has caused gut dysbiosis (imbalance) and also bacterial transfection from gut to blood (leaky gut). He carries out rigorous testing of various forms. Tests I had done locally had never shown any food intolerances. Through hydrogen breath tests I now know that I am highly lactose and slightly fructose intolerant. Through blood testing which his clinic sent to the U.S. I also know that I am highly intolerant to eggs and oysters. He works closely with a specialised nutritionist who made her dietary recommendations for me based on the above and also through clinical discussion and evaluation of my medical history has also suggested a diet low in histamines.

He then recommends, together with this rigorous diet, a treatment protocol for the first three months, with a course of antibiotics every month interspersed with probiotics. I would assume that the antibiotics kill off the bad bacteria and the probiotics promote the development of the good bacteria. To these he adds various digestive treatments like Creon, Mesalazine and calcium carbonate, various nutritional supplements like chlorella and HydrocoxyB12, as welll as of course the Nexavir and GcMAF. It's quite a regimen. Apart from the irritated bowel (which hopefully is now improving) I am not having any other problems. I react to the GcMAF for the first 24hrs and then pick up afterwards. Oh yes, one also has to drink a minimum of 2L of water per day. I have only been on this treatment now for 12 days, so it's early days yet to give you more feedback. However if you look at the whole thing, it makes a lot of sense to me and really appears to be targeting the source of my problems - I have been unwell for 18 years. I just resent that I had to fund the whole treatment out of my own pocket when I have two health insurances.

P.S. It's 8.15am here and I'm up and posting....something which was unheard of for me previously!! I'm not exactly going to enter a marathon or even attempt any exercise yet....but I'm optimistic. (I just keep expecting that downturn KDM warned about and mentioned by Nabo and Tony above).

P.P.S. The above treatment protocol was put together individually for me, based on rigorous testing.

 

[undcvr]

The Spreadsheet:

https://spreadsheets0.google.com/cc...WzIsbWaN4iN1pWWw&hl=en&authkey=CIH8jqcC#gid=0

 

[Sushi]

Thanks Filfla,

For that detailed report.

I am also finding the clinic responsive to emails. I emailed the nurse with a question and got an answer the next day.

It is interesting that we are all getting different responses to GcMAF. Of course people who have seen KDM previously are on a more complex protocol and that makes it harder to tell what is causing what.

I took my 3rd IV shot yesterday and felt normal during the day. However, again, I slept 13 hours last night and woke up feeling signs of immune activation--draining of ears, sinuses, eyes, etc. Definitely it is doing something.

I took only a half dose for the first 2 shots, but yesterday I took 3/4's of a full vial. He was being cautious cause I sometimes get cardiac symptoms from meds and supps.

Some of my lab tests have already been sent to KDM though I doubt that he will add things to the protocol until they are all in. I feel eager to "get on with it" but know this is a slow process as it is important to have all the relevant tests analyzed before adding to the treatment.

But with GcMAF, so far so good. I am hopeful even though according to Redlabs VDR test, I am a low responder.

Sushi

 

[alexk201]

Thanks so much for such a detailed response! I have been doing alot of research on mycoplasa and from what I know, Dr. Garth Nicolosn uses Doxycycline for mycoplasma, does KDM use Azythromycin?

 

[Ronan]

I dont know how relevant this is but i thought i'd mention it anyway. About 2 months before all my ME problems started i got the Flu Vaccination and Antibiotics for Acne on the same day. I have always since wondered if that pushed me over the edge. Anyway, Acne cleared up and i had all but forgotten about Acne until a few weeks into GcMAF it started to appear again. It's not as bad as it used to be by a long shot (bare in mind i'm now 30!), but i'm wondering if my immune system is now finally having a response against the anti Acne Bacteria which probably rose to chronic levels and has stayed put thorough my 9 years of ME. It may be a total coincidence of course.

 

[anne_likes_red]

Ronan.

Hi Ronan, I remember Rich Van K mentioning a while back that a certain acne medication seemed to have helped trigger ME/CFS in at least a few cases that he knew of.

 

[Sushi]

Hi Ronan, I remember Rich Van K mentioning a while back that a certain acne medication seemed to have helped trigger ME/CFS in at least a few cases that he knew of.

It is accutane!

Sushi

 

[aquariusgirl]

hi all

been looking for the post that says what tests to take to prep for KDM, or what tests he orders.

can't find it on this incredibly long thread.

anyone know a shortcut?

2nd thoughts: is it in the KDM patient packet?

 

[Sushi]

hi all

been looking for the post that says what tests to take to prep for KDM, or what tests he orders.

can't find it on this incredibly long thread.

anyone know a shortcut?

2nd thoughts: is it in the KDM patient packet?

It is not in the patient packet. I can email a list of tests that some people have done. What he really needs is a positive for XMRV from VIP or Redlabs. Also, it is good to have a VDR test as well.

Then he prescribes a whole lot of tests he chooses but most of those he wants "current" at the time you start treatment--in other words seconds before the first GcMAF injection.

Sushi

 

[aquariusgirl]

wow, so much for being prepared..
so if I test now...he'll want me to retest if I see him in a coupla months.
Did he make you re-do tests you'd done in preparation for that apptment sushi?
Sometimes, I just feel like quitting.
This whole thing is so ridiculous!

 

[Sushi]

wow, so much for being prepared..
so if I test now...he'll want me to retest if I see him in a coupla months.
Did he make you re-do tests you'd done in preparation for that apptment sushi?
Sometimes, I just feel like quitting.
This whole thing is so ridiculous!

I only did VDR, XMRV and proinflammatory cytokines. He didn't retest those, but he did retest a few that Sergio had done earlier.

Sushi

 

[filfla4]

It is not in the patient packet. I can email a list of tests that some people have done. What he really needs is a positive for XMRV from VIP or Redlabs. Also, it is good to have a VDR test as well.

Sushi, I tested negative for XMRV by pcr/culture and my serology result is not in yet. Yet based on my test results and medical history, he still prescribed GcMAF.

filfla4

 

[Nina]

Hi all,

first of all: Thanks to everyone who is reporting their experiences on gcmaf here!

As some of you might know, I also tried it a couple of months ago but had to stop due to severe side effects (namely my muscle weakness got so bad that I had trouble breathing).

After the first shots I developed a horrible cough, something I never have. It took all of 4 months to abate after I got off the gcmaf.

At that time my doctor, who isn't knowledgeable about gcmaf but specializes in the immune system, told me this wasn't a sign for a clearing infection but merely an immune reaction that everybody would get on the drug.

From what I read here, although I haven't been able to read all 17 pages, this isn't something that occurs in everyone. So I guess I'm wondering if the cough really meant I was getting rid of something. I didn't feel any better after the gcmaf trial but then again I only took about 2.5 full doses.

Does anybody have any thoughts on this? Who else has developed a severe, persistent cough on gcmaf?

Thanks,
Nina


PS I recently tested positive for XMRV but didn't know that at the time I was on gcmaf.

 

[guest]

Nina,

these questions are always difficult to answer because there is not enough experience. I can tell you that GcMAF is no cure. The only way to find out if it helps in the long run, would be to try it again in lower doses. I don't know if GcMAF causes macrophage over-activity but if it does there is the chance of some adverse side effects.

Kofi on LEF: "Macrophage overactivity can adversely affect cancer development (via
angiogenesis) and arthritis (via inflammation). I can't find much
linking cancer with arthritis, but there is a link with macrophage
activity and Alzheimer's that suggests GM-CSF would be a valuable
treatment for Alzheimer's - and for Crohn's (which should limit colon
cancer). Complicating matters, macrophages can appear in two radically
different states. "

 

[froufox]

Hi Nina

I was thinking about your experience recently and I'm really sorry the GcMAF was so tough on you. The muscle and breathing problems sound pretty serious. I agree with Diesel its really hard to say isnt it because its such early days with this treatment. I only know from my own experience that I feel that certain symptoms i get are a good sign that my immune system is kicking in but i guess when things become persistent and intolerable there is no choice but to take a break. I only had a slight cough on GcMAF at times, for me its mostly been sneezing, sore throat, more fatigue and depression.

I'm not sure what your immune specialist means tho when he says that the cough was just an immune reaction to the drug since how can u distinguish between an immune reaction and the body trying to clear an infection since they are part and parcel of the same phenomenon? Since a cough is also a symptom of cold/flu and is a way of the body trying to get rid of something out of the throat. Or was he talking about an allergic reaction to the GcMAF?

How long did u try GcMAF for? Take care.



Also i just wanted to report back to people that I had a REALLY good day yesterday....probably one of the best days that ive had for ages. I had to go out for an appointment and had to walk for about 2-3 miles in total and i didnt struggle at all with walking, or felt that i had to get a taxi as usual. My legs felt really strong and light, and neurologically i also felt much more normal too - much less brain inflammation and i felt very alert and calm and aware of what was going on around me, compared to the usual zombie-like existence! Also i could feel my emotions more and my thoughts were connecting better, and as a result i could communicate much better than usual. Basically i just felt very alive!! It was a fantastic feeling and it felt like some fundamental change was happening.

I did start back on Hepapressin this week and did an injection of that on the same day that I did my 5th GcMAF injection. I hadnt done the Hep for a few weeks as my batch got lost in the post...so whether the good day i had yesterday was due to me adding in the Hep this week and the combination of the GcMAF and Hep working together, i dont know. Anyway im gonna do 2 Hep injections a week so will see how things go.

Unfortunately today im back to feeling poorly again particularly cognitively and neurologically, although my energy is not as bad as usual considering all the exertion i did yesterday. Still, I do feel a bit more hopeful and just really hope that its a good sign of things to come!

Hope everyone is doing well.

 

[filfla4]

Nina, I'm sorry to hear about your bad experience. No, I haven't developed anything like this. At this end, I'm still struggling with stomach probs but I put that down to the anti-b's and not the GcMAF. Energy hasn't lifted much this week.

Froufox, that's really good news!! Very encouraging! Long may it last!!

 

[serg1942]

Hi guys!

I just cached up with this thread after a few days without readingI wish I would have noted down what I want to say! Anyway, Ill write what I remember:

FrouFox: What exactly is Hepapressin?. Ive read in Wiki (http://en.wikipedia.org/wiki/Hepapressin) that it is similar to Kutapressin, that in turn is the same as NexavirAm I right or too brain fogged? Has KDM prescribed this to you? I am VERY glad to hear about your "mild" improvements. I dont think these mild changes that couldve been coincidences, are indeed just coincidences for all of us! ;-)

Cansado, I am very glad to hear that you also are feeling some slow and mild improvement! Yes, hang in there! ;-)

VLI, Thanks for describing your experience with the gastroscopy-biopsy procedureI have to do it maybe next week in Spain, and I definitely will be sedated. According to my Spanish doctor, the sedation is not an anesthetic. It is a benzo administered through a mask, in high doses. So much safer it seems.

I had a gastroscopy done years ago, without any sedation, and it was the most horrible experience Ive ever had. I couldnt stop swallowing and gagging every 2 seconds, and they could not observe my stomach properlyJust hope this time the sedation is strong enough to knock me out so that I dont pass again through this horrible experienceI will let you know! (BTW, I am XMRV+ by culture, but KDM wants to look again for XMRV and MLVs, in adittion to other viruses in this biopsy).

Hey, I proposed to open a new sub-forum in this forum (PR), for GcMAF, and no one answered! It is impossible to read the whole thread for new people, or to find specific postsCort, if you are reading, could you consider opening a sub-forum reserved for GcMAF?

Thanks for the idea of the spreadsheet. I am updating it every few days. There is a way to protect it. If we open a sub-forum for GcMAF, we can open another sub-sub-forum in the GcMAF sub-forum, privately, just for members. It can done in 2 minutes. Then we post the spreadsheet in a post in that forum, and thats it!

As far as Accutane for acne, YES, it was one of my main stressors to develop CFS, and a few patients have contacted me during the last few years reporting the same.

As far as insurances, my Spanish insurance covers the stomach biopsy, and it would cover the PCR for most of the viruses (except for XMRV and MLVs) if Id do it in a Spanish lab. I wont do it cause they do a qualitative PCR while in REDLabs they do a quantitative PCR. I am sure I could find another Spanish lab doing the proper PCR, but probably KDM wont trust a lab he doesnt know

I am sure I am forgetting somethinganyway, good luck to everyone and well continue in touch!

Sergio

 

[Alexia]

Hi Nina,

I'm sorry to hear of your bad reactions to the GcMAF. I'm not taking it so I can't help much but don't forget that not all GcMAF are the same. Which one did you try, KDM's? if you would try again maybe it would be better to try a GcMAF from another lab and see if you tolerate it better.

 

[froufox]

Thanx fifla4 i hope so too!

Hi Sergio, thanx! And no i dont think its a coincidence either! Yes thats right, it is supposed to have similar anti-viral actions to Kutapressin (and Nexavir) except its sourced from bovine liver (whereas both Nexavir and Kutapressin are from porcine liver). No KDM did not prescribe it, I'm getting it from Dr Enlander who I consulted a few months ago. He found that only 30% his patients responded to Kutapressin but when he added other ingredients like glutathione, methylb12, magnesium etc the response rate increased to 67%... so it doesnt sound like Hepapressin its own was actually particularly effective...whether that was due to the fact that it was only a once as week treatment as opposed to doing daily Nexavir injection i dont know.

Anyway ive decided to inject it twice a week to see if that makes any more of a difference. I couldnt afford to inject it more than that anyway. I told KDM that I was on Hepapressin and he said that he didnt like adding ingredients to the Nexavir as he found that people had bad reactions to it...but i seem to tolerate the Hep ok so will carry on with that. I do feel that some of the benefits Ive gotten from the Hep is down to the other stuff in there eg b12, magnesium eg feeling more relaxed, sleeping better, but that could be due to another anti-inflammatory effect. Also from what other patients of KDM have told me, when KDM decided to combine B12 injections with the Nexavir this increased the efficacy of the Nex.

http://www.enlander.com/treatment.html

Good luck with your gastroscopy/biopsy next week, i hope it all goes smoothly!

 

[richvank]

gcMAF and methylation?

Hi, all.

I'm following all the reports on gcMAF response with interest, and wishing you all success with this treatment.

I note that some people seem to respond more favorably than others, and am trying to get up to speed on IRIS, the VDR polymorphisms, etc.

But I'm wondering if another factor that could be involved is the status of the methylation cycle. It seems to me that gcMAF awakens the immune system so that it is able to respond to infections that are already present in the body, but that the immune system has been "blinded" to. If this is the case, it would seem that how things go after this awakening would depend on how robust the immune system is, and therefore how well it will be able to do battle against the enemies.

What I'm coming to is that there is good evidence that when glutathione is depleted and the folate metabolism is dysfunctional, both components of the methylation partial block mechanism, the immune system will not be able to function as well as normal.

I'm wondering whether those who do not respond so well to gcMAF treatment may have significant methylation cycle problems, which are hampering the ability of the immune system to respond, once awakened.

I understand that B12 is part of Dr. de Meirleir's protocol, but I haven't seen it reported that he also uses an active folate with the B12. In my experience, this combination is key to lifting the partial methylation cycle block.

So I'm just throwing this out for consideration. I don't know if it is relevant to the gcMAF responses or not. but it may be, particularly in view of the fact that retroviruses are being treated, and methylation is known to silence genes, probably including retrovirus genes.

Best regards,

Rich