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

[garcia]

Hi Garcia,

Thanks so much; would you mind telling us whether you order the sachets or capsules, and did KDM specify which to get? (Also, this is so expensive!!! Does everyone who take it feel something from it??)

I ordered the sachets. Yes it is expensive! I ordered it a couple of years ago (nothing to do with KDM). I can not tolerate VSL 3 due to what a presume is the D-lactic bacteria. I feel like I want to jump out of my skin when I take it. I will not be trying it again.

 

[healthconcern]

Hi Freda, I would assume you got your source of gcmaf from bgli since they did mention GHP as a vitamin d preparation in their website.

I feel happy for those who are willing to accept gcmaf treatment. This keeps me excited because people are reporting their responds, results and side effects!

I just joined the group so i am wondering what does KDM refers to? i know there are quite a few suppliers out there, priorly bgli.nl, gcmaf.eu and a isael company called gcmaf. i wish to allocate a supplier so i can purchase gcmaf and start my treatment.

Thank you

 

[Sushi]

I just joined the group so i am wondering what does KDM refers to? i know there are quite a few suppliers out there, priorly bgli.nl, gcmaf.eu and a isael company called gcmaf. i wish to allocate a supplier so i can purchase gcmaf and start my treatment.
Thank you

Hi healthconcern,

KDM is an abbreviation for Prof./Dr. Kenny De Meirleir, a doctor and researcher in Brussels, Belgium (his clinic is called Himmunitas). He sees many patients with ME/CFS and prescribes GcMAF when he finds it appropriate.

Best wishes,
Sushi

 

[healthconcern]

Thank you sushi.

I understand you have received gcmaf for quite a while now. As far as it goes, how do you feel so far with your treatment? overall well being etc? I hope to find out more because i realize there and a few low responders that might require longer period to respond, or even double dosage to do so.

 

[Sushi]

Thank you sushi.
I understand you have received gcmaf for quite a while now. As far as it goes, how do you feel so far with your treatment? overall well being etc? I hope to find out more because i realize there and a few low responders that might require longer period to respond, or even double dosage to do so.

Hi healthconcern,

I have not taken GcMAF all that long and I am (according to Redlabs) a low responder. I took my 17th shot today. The prediction is that I'll need 35 -- 40 (or more?) to have a significant change.

I am responding though. I have one or two days a week where I feel the impact of the increased macrophages--meaning I feel less than good--but otherwise I have more stamina and noticeably increased immune function.

But it isn't just GcMAF I am looking to for improvement. Now that all my test results are back and analyzed I'll be adding a number of other things that should act synergistically with GcMAF. GcMAF is usually given as part of an individual protocol.

Overall well-being is very hard to quantify! Some have had depression on GcMAF--I have not but when I was taking a full vial, I had a lot of nightmares. Perhaps the most I can say about over-all well being is feeling I am doing something that has a good shot at working--and this makes me glad!

I am taking half a vial a week. According to my doctor, you shouldn't exceed the max dose of one vial per week as you could be at risk for dangerously increased calcium or Vit D 1-25. It is still early days in figuring out the optimum treatment protocol with GcMAF. It seems that ME/CFS patients often do better with a lower dose than the HIV and cancer patients did in the studies.

In a few more months there should be more doctor-patient experience with GcMAF as more patients will have been taking it for a longer time and had follow-up tests.

Best wishes,
Sushi

 

[healthconcern]

Thank you very much! Sushi. These infos are really helpful. Help me again with below if you could.

But it isn't just GcMAF I am looking to for improvement. Now that all my test results are back and analyzed I'll be adding a number of other things that should act synergistically with GcMAF. GcMAF is usually given as part of an individual protocol

I understand that from the paperwork publised gcmaf is not suggested to take along with ARVs but what other things you have been taken to act synergistically with GcMaf?

I am responding though. I have one or two days a week where I feel the impact of the increased macrophages--

I have read about non-responding patients like Freda's friend, possibly unpure or different patent of gcmaf used. Can i know where your doctor get his source of gcmaf from?


Thank you for reading these.


Regards,
HC

 

[Nabo]

hello

about a week a go i posted that i had so many sideeffects.
I couldnt take the gc maf anymore.
No more sleep so much pain etc...

So now i have a break.
And i feel better!!! I can sleep !

In june i have to go back to kdm and then i see whats next???

I think it is just break for a couple of weeks. feeeeeel gooood!

 

[filfla4]

@ 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!

 

[healthconcern]

Hello Filfla4,

I am sorry about the tragedy that you are going through now and you have my deepest symphaty.

I am a KDM patient and there was a lot more I started besides the GcMAF: diet, antibiotics, nexavir, supplements and stomach meds.

Did KDM prescribed these antibiotics, nexavir etc to take along with GcMaf when you started the treatment? And also you mentioned improvement and yet side effects of sleeping trouble, do you experience any other improvement besides functional improve?

Thank you =)

 

[froufox]

Hi fifla,

I'm so sorry to hear of your family tragedy, I hope that you've got enough support and are able to keep stable healthwise over the coming months.

Thanks for sharing KDM's advice about taking a break, thats very interesting. I took a break a couple of times and I also feel better, but then I'm pretty sure that things got worse for me afterwards too...at least i think so, its very hard to tell whats happening sometimes, and work out what the reasons for that are. I do understand what you're saying that the stress you've been under might have affected things too. But still its made me think about whether taking a break is a good idea or whether to follow KDM's advice to keep on with the weekly shots, at whatever dose is tolerable.

Thanx for sharing again, and I hope that you're starting to feel a bit better, take care.


Nabo I'm glad you're feeling a bit better! Hope u get some good advice from KDM about how to proceed with things when u see him in June. All the best.

 

[vli]

Ive been on the Nexavir for about 10 days (mostly every other day)

Sorry this is going to sound really dumb; but if blood emerges from the entry point when I extract the needle from the skin it means I'm not doing it right, right? That I'm not injecting it into subcutaneous fat? How do I prevent this?

 

[froufox]

Hi vli, yeah thats my understanding too. We're not supposed to hit any blood vessels. I dont know how to prevent this though and i guess its just down to luck whether we hit a spot where there are no vessels. Its happened to me just the once luckily, so far anyway. Maybe its worth emailing the nurse at the clinic to ask?

 

[Rrrr]

fifla, i'm so sorry to hear of your family crisis. i have been thru many of my own and i know how hard they are on you and everyone. we are thinking of you.

vli, i, too, get blood sometimes. i inject daily (nexavir and b12) and often get it. but i keep injecting daily, because i guess sometimes i get it right! i try to go less deep sometimes, for just this reason.

 

[Rrrr]

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.

 

[Sushi]

Sorry this is going to sound really dumb; but if blood emerges from the entry point when I extract the needle from the skin it means I'm not doing it right, right? That I'm not injecting it into subcutaneous fat? How do I prevent this?

Not necessarily--even if you nick the skin accidentally, there will be a bit of blood. There are tiny capillaries everywhere. I get a drop of blood often too.

Sushi

 

[leela]

Hi vli,

I did subQ B12 injections for several years and never had blood, though did get the occasional bruise, which indicates the puncture of a capillary
I'm told, but is no big deal.
Are you using small insulin syringes or do you need bigger needles for gcmaf (I don't know how viscous it is)?

I used 1/2" 29 gauge needles. Pinched a blob of fat. Jabbed the needle in at an angle like a dart and pushed as slowly or quickly as was comfortable.
Also, I presume you are sterilizing the spot first with an alcohol swab. Then, after the shot, just as you pull out the needle, push a cotton ball right over where the needle came out and keep some pressure there for for a bit, even massaging a little if there is a bolus, to help it disperse.
This is the technique I was taught for B12 injections, anyway. Hope that helps.

 

[Sushi]

Thank you very much! Sushi. These infos are really helpful. Help me again with below if you could.
I understand that from the paperwork publised gcmaf is not suggested to take along with ARVs but what other things you have been taken to act synergistically with GcMaf?
I have read about non-responding patients like Freda's friend, possibly unpure or different patent of gcmaf used. Can i know where your doctor get his source of gcmaf from?
Thank you for reading these.
Regards,
HC

Hi healthconcern,

I am going to be taking quite a number of things along with GcMAF. Since these prescriptions come as the result of analyzing my individual tests (KDM is my doctor and he gives very individualized protocols based on extensive testing), it wouldn't be really useful to share my exact protocol (someone could misunderstand and copy it for themselves). KDM gets his GcMAF from a certified lab, but not BGLI. I don't know the name of the lab or whether they supply other physicians. (I have never asked as I fully trust his source)

But in general, I will not be taking ARVs, I will be taking Nexavir, Hydrox B12 injections, several antibiotics that match the infections my tests showed, probiotics that match my gut analysis, and some prescription digestive aids, and supplements that my tests showed that I needed.

Sorry to not be more specific, but these individual protocols are so different, I wouldn't want to influence someone's treatment by what I am doing!

Also, the VDR test doesn't indicate "non-responders," just the level of response. I have never heard of a test coming back as a non-responder, just a low responder. However, some researchers dispute the importance of the VDR and other labs have given different results for the same patient. So, I think all we can say for sure is that different patients show different levels of response.

Best wishes,
Sushi

 

[filfla4]

I'm so sorry to hear of your family tragedy, I hope that you've got enough support and are able to keep stable healthwise over the coming months.

Hi Froufox,

Thanks for your support. Where are you based in the UK?

I'm really going through a terrible time at the moment. My 15 year old son has been diagnosed with a brain tumour. It is large (4cm) and in a very difficult position between his pituitary gland and mid-brain. It is very calcified, which is a double-edged sword: on the one hand that may indicate that it is not an aggressive malignant tumour yet this also makes if very difficult to operate.

Two weeks ago he was admitted to hospital and they did emergency surgery to insert a shunt draining the fluid which accumulated on his brain, down into his peritoneal cavity. He is now comfortable and stable. Tomorrow we are travelling up to the UK and he will be treated at Alder Hey Hospital in Liverpool. He has to travel as a stretcher case as he cannot be upright for too long. We will also be accompanied by a doctor and a nurse, with ambulance transfers at either end.

At the moment we are in limbo and don't know what the next step will be. I don't know if I'm travelling to the UK for a couple of weeks or a couple of months. All the testing will be repeated and then decisions will have to be taken on the course of action.

I'm sorry to take this gcmaf thread off subject, but I just wanted you to know why I haven't been around. I have been in constant contact with Sushi and she knows exactly what is going on. If anyone has any questions about my gcmaf experience I'm sure Sushi will be kind enough to field your questions.

In terms of my own health, as you can imagine it is now on the back-burner and I am trying to cope as best I can, against all odds. As I mentioned before KDM was insistent that I don't stop the gcmaf and I am following his advice.

xx

 

[leela]

Wow, filfla, you are so strong.
I can only begin to imagine how hard this must be, on so many levels.
Please take care of yourself, too, and make sure you get what you need.
Know that we are sending our most heartfelt thoughts, wishes and prayers to both you
and your son, and all your family.
Remember that love is much more powerful medicine than worry. Keep choosing it, letting worry, fear, etc be just as it is within the potent
expanse of love..
Wishing for the best possible outcome for all,
Big Hugs,
~leela

 

[healthconcern]

Fifla,

I wish you and your family the best, please stay strong for them and continue to proceed what's best for your health. You will remain in my prayer as well, take care!