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

[anncavan]

Hi Peggy,
I'm so sorry you are herxing so terribly! Are you treating your Lyme with antibiotics while going GcMAF?

 

[filfla4]

Hi,

As you know I've been seeing KDM since November and have been on GcMAF (8 shots so far) and the rest of his protocol since end January. I just called the clinic today and have found out that I am XMRV positive by serology. I was negative by culture and pcr. Clearly KDM could tell from my blood results that I fit the XMRV profile, which is why he started me on GcMAF before I had any positive tests. I'm obviously blown away by this and still have to get my head around the implications for my family, particularly my kids.

My VDR results show that I'm a high responder on my BSM1. I find it hard to give you feedback on what effect the GcMAF is having. Certainly I am wiped out after every injection within just a few hours and not several days later as others have reported. By this I mean far more neurological symptoms, particularly in my neck and upper limbs, as well as fatigue. This clears up within a couple of days. I would say that generally I have more energy but no specific reactions except for more skin itchiness. Particular pains in my head have also improved. I have a telephone consultation with KDM in April.

xx

 

[froufox]

Hi Robert

Its great that you're having such good energy boost from the GcMAF. I just wanted to mention that I think that the burning symptoms that you've been getting might well be histamine related....I also had burning sensations in my face/head/neck area, aswell as my hands and arms on a few occasions since starting GcMAF, either the next day or a few days later.

My face, hands etc apart from burning/stinging would also get very red and/or blotchy so it was definitely histamine in my case, and histamine levels are supposed to increase with GcMAF. Have u tried taking an anti-histamine? I noticed that it can also be aggravated by B vits....i know that certain b vits can make histamine levels increase too eg folic acid, b12, niacin, and they definitely do seem to make things worse in my case.

Hope your health continues to improve! All the best.

Hi guys! I am new to the blog but i am also on GcMaf and wanted to share my results so far.
i got my first shot on Feb 7 immediately after which i had a week long headache. After my 3rd shot i noticed i am having much more energy than i usually would have, my neck is extremely sore and this is when my back also started hurting - it feels like it's burning. after my 4th shot i had fever, not sure why but my back was so sore and hot i thought it was because of that. if you touch anywhere from neck to my waist then you can feel a lot of heat - my back and neck are burning! did anyone experienced anything like that? after 4th shot i also have too much energy - i am not used to have so much energy! i sleep only 4-5 hours at night and then wake up fully recharged and trying to occupy myself with something not to wake up anyone. At first i thought i might have insomnia but after talking to my doctor he suggested that it is simply due to higher energy levels so this is all the sleep my body needs these days. Before taking GcMaf i needed at least 12 hour sleep and i was not expecting for GcMaf to work this quick or have such effect. i didn't have any official blood work yet, my doctor keeps calling me asking to run the full set but i am scared - i just hope all my energy is for real and not just my mental state! i am afraid i will run my blood test and it will say that nothing has changed. I will update with my results at the end of this week but so far i am feeling much better than just few short weeks ago!

 

[sphynx on roundabouts]

thanks, sphynx! did you put yr flask in yr checked luggage, or did you carry it on the plane with you?

i sure hope you feel better soon. i am routing for you!

it went in carry-on luggage. Himmunitas will give you a letter for the airport to verify the medicine. If you want to put it into checked luggage maybe the staff at EuroVolley would be able to give you the ice if you ask them in advance.

Thanks for good wishes and I'm hoping it'll all go smoothly for you and your huge efforts will be worthwhile

 

[froufox]

Hi Peggy

I'm pretty sure that i have lyme and some of the coinfections too (bart & ehrlichia)...i tested positive once, but not since....tho i just recently tested positive to a past Coxsiella infection (RedLabs test) which would be from a tick bite, and although I cant say that ive experienced all of those symptoms that u mentioned since ive been on GcMAF, I have certainly had some of them eg burning heels and sore wrists and various other symptoms that i havent had for a while. I dont live in a lyme infested area so i know for sure that i havent been bitten recently, but i can understand why u would be concerned about that! I would suspect though that u are probably herxing from the GcMAF....i wonder if the macrophages are going after the infections in those particular areas in your body where the infections are hiding out?

What dosage are u on? Have u had any other symptoms besides the ones u mentioned? I hope that things get a bit easier soon and u can figure out what is going on.

I have done two GcMAF shots so far, and I'm having Lyme, babesia, and bartonella symptoms -- but I'm a little nervous because I also was outside on my deck and near my deck on a couple of warm days (in a very Lyme-intensive area), and I'm worried I might have gotten another tick bite and that I'm just reinfected. Has anyone else who had severe Lyme, babs, and/or bart on top of ME/CFS had a reaction that felt like a "herx" on GcMAF? The symptoms I'm talking about are very specific to these bugs and not to ME/CFS (for me at least: they started when I got these new infections), such as pain on the soles of the feet (bartonella), knee and wrist pain (started with Lyme), blurriness in right eye (for me, started with Lyme and bart, along with seizures and facial nerve pain and lightning bolt sensations on that side of my head), sudden chills (babesia and Lyme), etc.

 

[Berthe]

Thank you Sushi and Sergio for your concerns. I know that I'm in good hands at De Meirleir and that it would be wise to check the health of my both sons as well. The fact is that they are both grown-ups now (20 and 18) with a mind of their own. I will definitely get their blood tested somewhere in the near future for XMRV. Regarding to the Gc Maf, I want to remain the only guinea pig of the family until we know more.

I'm glad to read that some people seem to respond really well to Gc Maf. I have to admit that things are going better, but I don't want to be to driven about it. It's spring, the sun is out and perhaps my progress is due to other circumstances then the Gc Maf. I take it one babystep at the time.

I want to thank everyone who's willing to report on their treatment here on the forum and in the spreadsheet. I find it really comforting to know that you people are out there and we are going trough the same.:victory:

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[froufox]

Oh yeah Peggy I also forgot to mention that since being on GcMAF on some of the worst mornings i woke with a very stiff crunchy neck (i think this might be another lyme related symptom for me)...and generally felt pretty dreadful on those mornings too...and i wondered the same thing at the time...if I was just getting worse, or had caught another infection, or what... U rack ur brains trying to figure out whats happening and when im feeling that bad I am too foggyheaded/confused to think straight to be able to make proper sense of what is going on.

I realised afterwards that this was also very likely to be herx related, because I was pushing too fast with the high dose, leading to a big increase in inflammation, because it only occurred when i was on the full dose and i havent had that symptom since.

Anyway I just wanted to mention that in case it was helpful to u.

 

[Peggy]

Hey Ann, I am on meds for bartonella, which has been my worst infection (taking Rifampin -- have been for over 3 yrs), but stopped the antibiotics for Lyme and switched to herbs a couple of months ago (after 3.5 yrs on antibiotics). I was staying stable on the herbs. So if it's just a herx, well, that's a good thing -- I would be more than happy to have GcMAF kill off my remaining Lyme, bart, and babesia. I just don't want to get reinfected, that's all!

And Froux thanks for that input too. Pain on soles of feet is really a classic bartonella symptom. As I said, bart has been my worst infection -- it went right to my heart and caused severe cardiac problems (as it often does in AIDS) as well as severe neurological issues (as it often does in AIDS, where it's linked to dementia). I'm glad to hear you think this is just a herx. I'm at .05 dose right now. Come to think of it, I also had a lot of dizziness after the first injection, which could be a Lyme herx as Lyme really knocked off my balance initially.

 

[Rrrr]

Oh yeah Peggy I also forgot to mention that since being on GcMAF on some of the worst mornings i woke with a very stiff crunchy neck (i think this might be another lyme related symptom for me)...and generally felt pretty dreadful on those mornings too...and i wondered the same thing at the time...if I was just getting worse, or had caught another infection, or what... U rack ur brains trying to figure out whats happening and when im feeling that bad I am too foggyheaded/confused to think straight to be able to make proper sense of what is going on.

I realised afterwards that this was also very likely to be herx related, because I was pushing too fast with the high dose, leading to a big increase in inflammation, because it only occurred when i was on the full dose and i havent had that symptom since.

Anyway I just wanted to mention that in case it was helpful to u.

frou, thanks for all your input and thoughts! i'm VERY med/drug sensitive and there is no way i could do full doses of gcmaf. is kdm open to 1/4 dose for the duration of the treatment, or do you HAVE to work up to full doses? and how fast? -- best, rrrr

 

[Rrrr]

Hi,

As you know I've been seeing KDM since November and have been on GcMAF (8 shots so far) and the rest of his protocol since end January. I just called the clinic today and have found out that I am XMRV positive by serology. I was negative by culture and pcr. Clearly KDM could tell from my blood results that I fit the XMRV profile, which is why he started me on GcMAF before I had any positive tests. I'm obviously blown away by this and still have to get my head around the implications for my family, particularly my kids.

My VDR results show that I'm a high responder on my BSM1. I find it hard to give you feedback on what effect the GcMAF is having. Certainly I am wiped out after every injection within just a few hours and not several days later as others have reported. By this I mean far more neurological symptoms, particularly in my neck and upper limbs, as well as fatigue. This clears up within a couple of days. I would say that generally I have more energy but no specific reactions except for more skin itchiness. Particular pains in my head have also improved. I have a telephone consultation with KDM in April.

xx

filfla4,

i know it is scary at first to get the xmrv+ news, but in time i found that i was very happy to know that i can finally, after many years of being sick, have something specific to go after. i have started to try to focus what supplements i take now (focusing on antiviral supplements). better than trying 10000000 things and not knowing which route to try first.

welcome to the xmrv+ club! scary, but also better to know, so you can address it.

rrrr

 

[froufox]

Hi Peggy

Sorry to hear the Bart led to such serious heart problems, that sounds really tough. I do get cardiac symptoms aswell but no way as serious as it sounds like for u and I think/assume that for the most part they are OI/POTS/nervous system and endocrine related in my case...and i have no idea which infection/s they are related to. I do get quite severe neuro/brain/dementia symptoms at times tho...again i duno if its due to Bart or something else. Yeah the heel stuff is def bart related isnt it.

I'm glad to hear the herbs stabilised u though. Which ones are u taking?

Thats interesting about the dizziness...yeah could well be lyme related couldnt it. I had some dizziness too, after some of my GcMAF injections (not all)...again assumed it was die-off, and the affect on the autonomic nervous system. Even if it is a herx though, sometimes it doesnt make it any less easy to cope with does it?!

I hope you're not feeling too rough anyway. KDM said that if the symptoms get too rough, lower the dose...it wont make recovery slower...it just means that u need a lower dose to get the same effect.

Hey Ann, I am on meds for bartonella, which has been my worst infection (taking Rifampin -- have been for over 3 yrs), but stopped the antibiotics for Lyme and switched to herbs a couple of months ago (after 3.5 yrs on antibiotics). I was staying stable on the herbs. So if it's just a herx, well, that's a good thing -- I would be more than happy to have GcMAF kill off my remaining Lyme, bart, and babesia. I just don't want to get reinfected, that's all!

And Froux thanks for that input too. Pain on soles of feet is really a classic bartonella symptom. As I said, bart has been my worst infection -- it went right to my heart and caused severe cardiac problems (as it often does in AIDS) as well as severe neurological issues (as it often does in AIDS, where it's linked to dementia). I'm glad to hear you think this is just a herx. I'm at .05 dose right now. Come to think of it, I also had a lot of dizziness after the first injection, which could be a Lyme herx as Lyme really knocked off my balance initially.

 

[froufox]

Hi Rrrr

As just mentioned to Peggy, if you're really sensitive, i wouldnt take any chances i would just start on the smallest dose and see how u go...if u can tolerate then i guess u could try building up. It makes no difference what dose you're on according to KDM, u just have to find the dose thats right for u and there are no hard and fast rules. He said that taking too much just leads to overactivation of the macrophages and too much inflammation, which is not good.

frou, thanks for all your input and thoughts! i'm VERY med/drug sensitive and there is no way i could do full doses of gcmaf. is kdm open to 1/4 dose for the duration of the treatment, or do you HAVE to work up to full doses? and how fast? -- best, rrrr

 

[froufox]

Hi All,

When i saw KDM last week, he told me that one of my test results show that i have folding proteins in my blood. I dont know which test this is related to as i havent had his full report on my case back yet. (actually I think its probably from the "neurotoxin" urine test that I did at the clinic. I also read that urine tests can detect prions).

I just wondered if anyone else has been diagnosed with this problem, either thru KDM or any other doctor? He said that it makes me a good candidate for Nexavir...I'm already on Hepapressin anyway, which might explain why it seems to be helping me somewhat...but that I'd need to be on a much higher dose.

I know that abnormally folding proteins have been linked to neurodegenerative disorders in general eg Alzheimers, Parkinsons, prion diseases etc due to the accumulation of amyloid fibrills, and I read that it is also related to allergies....but unfortunately I didnt have time to ask KDM any more about it during the consult.

Anyway I just wondered if anyone else has this problem?

Thanks

 

[girlinthesnow]

Rrrr, just to let you know, if the nurse gives you your first injection of GcMAF at the clinic she will automatically give you a full dose. I don't know if they are able to give part doses as the vial will be unfrozen but it's worth asking if you are worried about having a full dose.

 

[Sushi]

Hi Peggy,

I am also on GcMAF and have tested positive to Borrelia burgdorferi in the past. I have treated it with herbs (a la Klinghardt!) and that has seemed to work well. Since Lyme and XMRV often go together, I've assumed that some of my "feeling yuk" responses to GcMAF have to do with Borrelia burgdorferi herxing as well.

I am hoping that since we are treating the immune system instead of targeting one specific infection, the GcMAF will help with many of our infections.

Hope you are feeling better. Consider lowering your dose if things get too hard.

Best wishes,
Sushi

 

[Sushi]

Rrrr, just to let you know, if the nurse gives you your first injection of GcMAF at the clinic she will automatically give you a full dose. I don't know if they are able to give part doses as the vial will be unfrozen but it's worth asking if you are worried about having a full dose.

Hi,

I got a half dose my first time at the clinic. Another patient and I came together and KDM ordered a half dose for each of us. If KDM ordered a quarter dose, unless you had someone there also wanting to take a part dose, the rest might have to be thrown away. But if you are worried about too much response and KDM agrees, that is better than suffering later.

I was glad that I only took a half dose as I don't think I could have handled more that first week with traveling etc.

Sushi

 

[Peggy]

Thanks Sushi for that additional info. Okay well I'm going to stop freaking out about the Lyme and coinfection recurrences unless I get a lot worse. Right now it's really tolerable, I'm mainly mentioning it because the infections were nearly lethal for me, so I can't afford to have a reinfection (rather than a herx).

For me, the herbs did NOT stop Lyme or coinfections. Only aggressive meds did that. But I have managed to wean off the Lyme meds as I said to herbs -- mainly cat's claw though also andrographis, garlic (which Dr. Zhang uses for neuro Lyme), and sometimes spilanthes. For bartonella the only herb to touch it at all for me is houttuynia, which I'm still taking liberally. For babesia I was taking artemesia annua but stopped recently and switched to Nutramedix Quina. I have remained on a high doses of cat's claw (generally 12-16 caps a day). None of my Lyme sx got even remotely under control without injecting antibiotics -- even the orals couldn't really hold it down. And bartonella has been a really hellish struggle but some of the bart symptoms I thought would never stop have stopped, like myoclonic seizures.

Frou, I forgot to say I have had neck pain too, mainly on the right side of my neck which also felt really warm (like feverish) after my first GcMAF injection, and accompanied the dizziness. This felt kind of menningitis-y, and I did have those same symptoms together when I first was hit with Lyme, and also when I first had the ME/CFS "flu" 19 yrs ago. I am really hoping this means the GcMAF is going after something in my brain, but who knows.

I'm not worse overall, and probably slightly better, since started GcMAF -- just concerned about these new acute symptoms b/c I can't afford to get reinfected, as I said. But overall, my sense is that GcMAF is strengthening me, but it's too early in my case to say for sure or to really tell much of anything. I have had at least two days since starting (as I said, I just did 2nd injection) where I was more functional than usual, but that could have been due to weather change so I can't yet attribute it to GcMAF. I hope it's GcMAF though.

Peggy

 

[Berthe]

Hi,

I did ask KDM to be really careful with me and he suggested half a dose. Because I was worried... I seem to react with a rise in temperature...I asked the nurse if there were even smaller doses and she told me that there is 1 full dose, 0,5 dose and 0,2 dose as well. I don't know if it has something to do with being a high responder, but someone on the Dutch forum had the same 'high' experience at the first dose as I had. I actually felt normal for the first time in eleven years. I hope this incredible feeling will come back some day.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[Rrrr]

Hi Rrrr

As just mentioned to Peggy, if you're really sensitive, i wouldnt take any chances i would just start on the smallest dose and see how u go...if u can tolerate then i guess u could try building up. It makes no difference what dose you're on according to KDM, u just have to find the dose thats right for u and there are no hard and fast rules. He said that taking too much just leads to overactivation of the macrophages and too much inflammation, which is not good.

i am very happy to hear this! thank you, frou!!!!

 

[Rrrr]

Hi,

I got a half dose my first time at the clinic. Another patient and I came together and KDM ordered a half dose for each of us. If KDM ordered a quarter dose, unless you had someone there also wanting to take a part dose, the rest might have to be thrown away. But if you are worried about too much response and KDM agrees, that is better than suffering later.

I was glad that I only took a half dose as I don't think I could have handled more that first week with traveling etc.

Sushi

thanks, girlinsnow and sushi and berthe. this thread is invaluable!

i don't see why they'd have to throw out the unfrozen gcmaf, as they told me that it can last 72 hrs unfrozen. i'd re-freeze it and take it with me back to the U.S. and at least try using it later. no harm in that, i supposed.