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

[healthconcern]

Sushi,

Do you happen to have Dr. Meirleir 's email or is there anywhere i can seek for him to ask for some advice?

Thank you in advance.

 

[Sushi]

Sushi,
Do you happen to have Dr. Meirleir 's email or is there anywhere i can seek for him to ask for some advice?
Thank you in advance.

Hi healthconcern,

I am happy to give you the clinic's email--however it is probably unlikely that you will get a reply from anyone but the secretary. KDM is a full time Professor, and part time clinician, is doing research and has emails from many patients each day. I have not heard of him responding to emails from non-patients. But, you might be lucky! The email is: info@ehmb.be

You haven't said what country you are in but if you are in the UK, he will be speaking at the Invest in ME conference in London on the 20th. I don't know if the format allows time for meeting speakers, but I sure wish I could be there!

If you have have a doctor who might consult with him, that is a better possibility.

Best wishes,
Sushi

 

[healthconcern]

Thanks sushi. My apologies for not properly introduce myself. Actually i am a hiv patient, but my reason to be here is to observe and understand the effect and respond of gcmaf on immuno therapy patients.

My location is Malaysia, but i will be travel soon if i cannot find a doctor who is willing to administer this for me.

 

[Sushi]

Thanks sushi. My apologies for not properly introduce myself. Actually i am a hiv patient, but my reason to be here is to observe and understand the effect and respond of gcmaf on immuno therapy patients.

My location is Malaysia, but i will be travel soon if i cannot find a doctor who is willing to administer this for me.

Hi Healthconcern,

Thanks for introducing yourself. I don't know how far your research on GcMAF has taken you, but there appears to be a difference in effective protocols for those positive for HIV and those with ME/CFS who are positive for XMRV--so please keep this in mind as you read here. So far, it seems that ME/CFS patients do better with longer treatment and perhaps at lower doses.

Also, the supportive medications for the two diseases may be different. GcMAF is usually not given as a "stand-alone" treatment. You are actually fortunate because more research has been done treating HIV patients with GcMAF than treating ME/CFS XMRV + patients.

Probably the doctors using GcMAF to treat the two conditions are different too. I'd guess that KDM only treats ME/CFS patients--but I am not sure. You might want to contact Dr. M. Ruggiero at the University of Firenze, marco.ruggiero@unifi.it for more information re: using GcMAF to treat HIV. If you aren't familiar with him, he is a researcher who has written papers and spoken on the use of GcMAF for HIV. He has a YouTube on it too.

Best wishes,
Sushi

 

[healthconcern]

Sushi,

Once again thank you for reminding me of different protocols taken for both treatment. I will not take what i read or displayed by others easily without further track of solid proof.

You are actually fortunate because more research has been done treating HIV patients with GcMAF than treating ME/CFS XMRV + patients.

I have read through trials posted by gcmaf.eu and Ruggiero's poster in ICAR2011 about the AIDS lady, but comparing it with recent result of a hiv patient who just started the therapy from a poz forum, it shows no changes at all. That is why i am here to see how gcmaf respond to other patients and what other factors could influence the reaction. I'm not saying i suspect the compound to be fake, but i'm trying to understand why the result could be so different, perhaps only being a high and low responder is the only explanation i can have.


Btw sushi, may i ask you about the results of VDR testing? what is the difference of BB/FF and Bb/FF? what kind of reading i should be aware of?

Thanks in advance! =)

 

[hoop]

everyone: a few of us are putting together a "GcMAF 101" file specifically for me/cfs patients, to share with those who are interested in gcmaf. it will be basic info on how to get it and links to more info and what to take with it, etc.

one thing i want for this file is a list of side effects. so can people tell me some but in AS FEW WORDS AS POSSIBLE. i can't promise they'll get in the final list, as i'm sick, too, and all this is a lot of work. but i hope to get most of them on the list, if you list them WITH AS FEW WORDS AS POSSIBLE.

like:

NEGATIVE: SOME ME/CFS PATIENT-REPORTED NEGATIVE EFFECTS OF GCMAF
- feel generally sicker (either the few days immediately after the shot or a delayed reaction of a few days later)
- feeling down, or depression (due to mobilizing cytokines)
- red and irritated eyes
- sleeplessness
- nightmares
- getting more colds and flus
POSITIVE: SOME ME/CFS PATIENT-REPORTED POSITIVE EFFECTS OF GCMAF
- more energy, more stamina
- able to go out more and be social
- able to walk more
- less reactive to chemicals and smells (for MCS patients)

please add to the list.

Hi Rrrr,
I would like to add to your negative list
-more extreme fatigue
-headache
-painful throat
-nastiness
My negative sideeffects start normally the second day after injection, but I don't have them each time. This week they hit me very hard. I have had now 20 full dosis and still no positive effects. I am a normal to low responder.
Best regards
Hoop

 

[bertiedog]

Hi all

Thanks so much for all your updates, its great to hear that many are doing better on GcMAF.

I wonder if anybody has got any answer to my question - I have tested XMRV+ but seem to have many symptoms of Chlamydia Pneumonia bacteria and have responded well to Doxycycline every day now for 7 weeks. However when I added in just one NA cycsteine on Sunday I have been very ill ever since, have lost all my gains. Apparantly this is a typical reaction and indicative of high levels of intracellelular bacteria.

Have anyone of you had similar diagnoses in the past and tried a a longterm antibiotic protocol? Did you get any improvements but not get really well, hence moving onto to something like GcMAF. My guess would be that GcMAf could help with intracellular bacteria too. I wonder if KDM has mentioned this to any of you.

Many thanks for your replies

Pam

 

[ikke2001be]

Hi Bertiedog,

In 2007 I was diagnosed with chronic Q-fever, which is an intracellular bacteria. KDM put me on azithromycine 500mg every other day, for this, which I took for 2 years and 8 months. This allowed me to stay at work. During the first 2 years my antibody titers went down slowly but steadily. Afterwards they started to go up again which made me decide to discontinue the use of this antibiotic. A few weeks later my body collapsed and I had no other choice then to stop working.

In jan 2011 I tested positive for XMRV, and KDM put me on GcMaf, Nexavir, and 6 consecutive days of azithromycine every other month. When I asked him why he again prescribed me azithromycine when it was clearly no longer working for me, he told me that my q-fever was not my main problem, the XMRV was. When a healthy person gets q-fever, most people never know. They have some flu-like symptoms for a short while, and then go on with their lives. When an XMRV+ person gets this however, it's a whole other ballgame. The XMRV is doing something to our immune system that makes us vulnerable, especially to intracellular organisms. Hence the lyme studie that was 100% XMRV+.

Untill now I have had 15 GcMaf injections: 9 full doses, 4 1/2 doses and 2 1/4 doses. This week I'm taking a break advised by KDM because of sleeping problems (need to take at least 30 drops of rivotril to be able to sleep). Also I'm about 3 months on nexavir, and I must say that I'm feeling a lot better than 3 months ago. KDM assured me that, as my XMRV got better, the q-fever will resolve itself, even on the low dose of azithromycin he has me on. 21 of june I will have my antibody's checked again, and we'll know more.

Hope this info is usefull to you,

Regards,

K

 

[maryb]

Bertiedog - I had the same response to NAC, if you read the methylation thread it explains in it somewhere why we have would such a severe reaction, or maybe just ask Rich or Fredd, its a long thread to go through. Sorry I can't explain it for you.

 

[bertiedog]

Hi Bertiedog,

In 2007 I was diagnosed with chronic Q-fever, which is an intracellular bacteria. KDM put me on azithromycine 500mg every other day, for this, which I took for 2 years and 8 months. This allowed me to stay at work. During the first 2 years my antibody titers went down slowly but steadily. Afterwards they started to go up again which made me decide to discontinue the use of this antibiotic. A few weeks later my body collapsed and I had no other choice then to stop working.

In jan 2011 I tested positive for XMRV, and KDM put me on GcMaf, Nexavir, and 6 consecutive days of azithromycine every other month. When I asked him why he again prescribed me azithromycine when it was clearly no longer working for me, he told me that my q-fever was not my main problem, the XMRV was. When a healthy person gets q-fever, most people never know. They have some flu-like symptoms for a short while, and then go on with their lives. When an XMRV+ person gets this however, it's a whole other ballgame. The XMRV is doing something to our immune system that makes us vulnerable, especially to intracellular organisms. Hence the lyme studie that was 100% XMRV+.

Untill now I have had 15 GcMaf injections: 9 full doses, 4 1/2 doses and 2 1/4 doses. This week I'm taking a break advised by KDM because of sleeping problems (need to take at least 30 drops of rivotril to be able to sleep). Also I'm about 3 months on nexavir, and I must say that I'm feeling a lot better than 3 months ago. KDM assured me that, as my XMRV got better, the q-fever will resolve itself, even on the low dose of azithromycin he has me on. 21 of june I will have my antibody's checked again, and we'll know more.

Hope this info is usefull to you,

Regards,

K

Hi K

Your information was very helpful, just the sort of answer I was hoping for. As mentioned I am going to the Breakspear Hospital for testing on Monday so hope they can give me an immune modulator as well as the abx because I am sure we can then recover faster. I had ordered some Azithromycin because I have never taken it before and was due to add it in on Mondays, Wednesdays and Fridays at low dose at first.

I am so glad you are seeing some improvements already, hope it continues and that you will feel much improved.

Bertiedog

 

[Overstressed]

Hi All,

I wonder if anyone has seen this before:
http://aras.ab.ca/articles/scientific/icar2011/3-Punzi-Morucci.pdf

It's a recent article from the University of Florence, Italy. I think they're colleagues of Prof. Ruggiero.

Best regards,
OS.

 

[Chris]

Hi, Overstressed,
I had not seen this--many thanks. It is interesting, and very positive in its reports--Gc-MAF active against both AIDS and breast cancer. Two points: David Noakes is thanked for providing the Gc-MAF--his stuff does seem to work OK? And the brief report at the bottom about maybe making the stuff by adding Kefir grains to "freshly collected colostrum"; anyone know whether this is available? I know one can get colustrum as a supplement--has anyone tried this? Chris

 

[lobba123]

i am using david's gcmaf since it is the only one assayed and fully checked..it is also the only one compared with yamamoto gcmaf and also temperature looks like having less impact on gcmaf potency (at least on gcmaf.eu version).

http://www.gcmaf.eu/info/index.php?option=com_content&view=article&id=114&Itemid=53

 

[blue sky]

Hello, Bertiedog.
I am one who has followed a long term multi abx protocol (doxy, amoxy, and azithromycin) for CFS/ME. I have had slow, but steady progress since starting the abx 6 years ago. I have also done pulsing with a bacteriocide (Tindamax) to kill the chlamydia pneumonia and will continue this for some time. I do take lots of probiotics and have limited carbs in an effort to not totally decimate my colon, but because I initially felt that I was quickly becoming very ill, I felt drastic measures were warranted. Although I have seen lowered titers (chlamydia pneumonia), I am concerned with immune function and the ability to keep the pathogens at bay without use of antivirals or abx. I do take Valtrex to address EBV. Overall, I have improved significantly, but mind you, it has taken years, with slow and steady progress. I initially started with nutritional supports (using the Yasko testing and supplements), progressed into methylation support, and have made many dietary changes. My thoughts now turn to GcMaf, and hope that I can restore immune function with increased macrophage activation. I hope to add GcMaf sometime this summer, currently waiting to line up a local physician who I will need to teach and convince that it's worth a try (my treatment has been through telephone consults with a doc who is familiar with CFS/ME).

Thanks to all on this site for sharing their experiences, it has been invaluable...
Best to all.

Hi all

Thanks so much for all your updates, its great to hear that many are doing better on GcMAF.

I wonder if anybody has got any answer to my question - I have tested XMRV+ but seem to have many symptoms of Chlamydia Pneumonia bacteria and have responded well to Doxycycline every day now for 7 weeks. However when I added in just one NA cycsteine on Sunday I have been very ill ever since, have lost all my gains. Apparantly this is a typical reaction and indicative of high levels of intracellelular bacteria.

Have anyone of you had similar diagnoses in the past and tried a a longterm antibiotic protocol? Did you get any improvements but not get really well, hence moving onto to something like GcMAF. My guess would be that GcMAf could help with intracellular bacteria too. I wonder if KDM has mentioned this to any of you.

Many thanks for your replies

Pam

 

[Sushi]

Hi all
Thanks so much for all your updates, its great to hear that many are doing better on GcMAF.

I wonder if anybody has got any answer to my question - I have tested XMRV+ but seem to have many symptoms of Chlamydia Pneumonia bacteria and have responded well to Doxycycline every day now for 7 weeks. However when I added in just one NA cycsteine on Sunday I have been very ill ever since, have lost all my gains. Apparantly this is a typical reaction and indicative of high levels of intracellelular bacteria.
Pam

Pam,

I am also a patient of KDM and am positive for C. Pneum. He has prescribed anti-biotics for three months--not continuous but the first 8 days of each month followed by targeted probiotics for the rest of the month.

He has also prescribed a number of other things including Nexavir. I start my first round of antibiotics on Monday. I'll let you know how it goes.

Sushi

 

[blue sky]

Sushi,

I have been wondering if KDM prescribed abx at the same time as the gcmaf, as I do not want to go off the abx when beginning the gcmaf. I am hoping that I can taper back on the abx, but in the past, I did go downhill rapidly when trying to cut the abx dosage. Please keep us posted as to how you fare when adding the abx.

Also, does anyone have feedback on what to do with the Valtrex when beginning gcmaf? I will need to advise my new doctor, and as he is not a CFS/ME specialist, I am hoping to get some advice as to whether to consider stopping Valtrex, in favor of Nexavir. I know we are all different, but any thoughts would be helpful.

Pam,

I am also a patient of KDM and am positive for C. Pneum. He has prescribed anti-biotics for three months--not continuous but the first 8 days of each month followed by targeted probiotics for the rest of the month.

He has also prescribed a number of other things including Nexavir. I start my first round of antibiotics on Monday. I'll let you know how it goes.

Sushi

 

[Sushi]

Sushi,

I have been wondering if KDM prescribed abx at the same time as the gcmaf, as I do not want to go off the abx when beginning the gcmaf..

Everyone I know (of KDM's patients) has stayed on GcMAF while on the ABX. Haven't heard of KDM giving Valtrex, so no ideas there--sorry. He (and other ME/CFS docs) do seem to have good results with Nexavir--though it is expensive and takes quite a while to show results--but does seem to work well against certain viruses.

Sushi

 

[blue sky]

That's good to know. I think I will talk to the doctor about the Nexavir (and go off the Valtrex). Maybe my insurance will cover it, as they usually don't question any of the treatments (surprisingly, they continue to pay for my hydroxocobalamin shots).

Thanks so much Sushi.

Everyone I know (of KDM's patients) has stayed on GcMAF while on the ABX. Haven't heard of KDM giving Valtrex, so no ideas there--sorry. He (and other ME/CFS docs) do seem to have good results with Nexavir--though it is expensive and takes quite a while to show results--but does seem to work well against certain viruses.

Sushi

 

[Nabo]

@ Nabo

I just thought I'd let you know about my recent experience. I started GcMAF at the end of January, around the same time that Sushi did. I am a KDM patient and there was a lot more I started besides the GcMAF: diet, antibiotics, nexavir, supplements and stomach meds.

Over the months I saw a significant improvement and estimate that I went from 40% functioning to at least 70%.

Two weeks ago we had a terrible family tragedy which put me under an enormous amount of stress. This stress will be ongoing for at least a few months to come. I skipped my GcMAF dose as I just couldn't handle the effect given what I was going through. As soon as things settled down a little I had a telephone consultation with KDM and explained what was going on. I suggested that I stop the GcMAF for a while, to be able to handle things at this end. He told me not to do this as I would lose all the ground I have gained. He recommended that I reduce the dose to half and to take a dose that very same day. He was insistent that I needed to keep up a maintenance dose as being in a stressful situation my cortisol will go out of whack and affect my immune system and we need to keep the macrophages going. Of course I followed his advice and took a half dose that same day.

I found that when I skipped the dose I could cope with things a lot better and I had renewed energy. I was also sleeping a lot better. However this didn't last long and within 10 days I felt I was beginning to feel worse. Of course this may not apply to everyone particularly since I am under a lot of stress at the moment and I have had to increase my activity levels significantly.

Wish you all the best!

Thanks for your reaction!
But it is a little weard that kdm told you this beacause a couple of patients from Holland had to stop for 10 weeks or more.
And he diddnt say that you would lose all the ground you have gained.

So these people have to stop, thats what kdm told them.
And to you he says Not to stop a few weeks!

What do i need to do??????????????????????

 

[Sushi]

But it is a little weard that kdm told you this beacause a couple of patients from Holland had to stop for 10 weeks or more.
And he diddnt say that you would lose all the ground you have gained.

So these people have to stop, thats what kdm told them.
And to you he says Not to stop a few weeks!

What do i need to do??????????????????????

Hi Nabo,

Probably KDM told those patients to stop for 10 weeks for specific reasons. Filfla may be at a different point in her treatment and wasn't having any real problems with GcMAF.

You should probably ask KDM what to do as each of us is different and he advises us differently according to our tests, where we are in our treatment, the symptoms we get etc.

You can get a phone consult or send him an email to get advice before your next appointment. When someone is having trouble with side-effects he usually gives individual advice.

Best wishes,
Sushi