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

[Overstressed]

Hi mojoey,

can you explain what C4a is ? In the mean time I received my genotype test results and it is what I knew all the time:

FOK1 Polymorphism: low responder
BSM1 Polymorphism: Moderate to low responder

Tests were carried out at Redlabs in Belgium.

It's bad news for me, I knew GcMaf was not permanently kicking in, that's the reason I already received 34 injections. It will not cure me. It's hard to stay positive, as I put all my hope on Gc-Maf. As long as I'm on Gc-Maf, it makes you feel better, but most probably this will vanish as soon as I stop.

OS.

 

[Alexia]

Hi Overstressed,

I'm sorry that your genotype test results were not more positive, I can imagine you feel disappointed. Do I remember well that even if you are not cured you improved with GcMaf injections?

 

[Overstressed]

Hi Alexia,

yes, everything has improved, but symptoms don't vanish. So, I'm asking myself it this lasts as long I get my injections, or is it really a placebo effect I'm experiencing ?
My family doctor (who's NOT treating me with Gc-Maf, but saw my genotype results) told me, perhaps this result means that your body needs more triggers(=more injections) compared to high-responders ? I don't think it works that way. The way I feel it, is that my Macrophages don't kick-in, it is just temporarily.

Does anyone know how Ruggiero's plans are on adapting Gc-Maf in such a way it works for all genotypes ?

OS.

 

[guest]

Hi Alexia,

yes, everything has improved, but symptoms don't vanish. So, I'm asking myself it this lasts as long I get my injections, or is it really a placebo effect I'm experiencing ?
My family doctor (who's NOT treating me with Gc-Maf, but saw my genotype results) told me, perhaps this result means that your body needs more triggers(=more injections) compared to high-responders ? I don't think it works that way. The way I feel it, is that my Macrophages don't kick-in, it is just temporarily.

Does anyone know how Ruggiero's plans are on adapting Gc-Maf in such a way it works for all genotypes ?

OS.

Why is it not possible to make an improved version of Gc-MAF that works for everyone? I mean, do we know why certain genotypes are needed for it to work properly?

 

[garcia]

I received my genotype test results and it is what I knew all the time:

FOK1 Polymorphism: low responder
BSM1 Polymorphism: Moderate to low responder

Tests were carried out at Redlabs in Belgium.

It's bad news for me, I knew GcMaf was not permanently kicking in, that's the reason I already received 34 injections.
OS.

I don't trust these results. As far as I know it is not redlabs which carries out this test, but it is outsourced to another lab. In which case all it takes is one bureaucratic mistake to mean all the results are backwards. Without a clearer reporting system there is no way to verify the accuracy of the results. Also we don't know how important genetics are vis-a-vis other factors (length of time ill etc.).

Also OS, by the sounds of it, you sounded like a responder to me. As far as we know GcMAF hasn't cured anyone. Not that I know of anyway. So I would not think of it as a cure right now, without further evidence.

 

[Overstressed]

Also OS, by the sounds of it, you sounded like a responder to me. As far as we know GcMAF hasn't cured anyone. Not that I know of anyway. So I would not think of it as a cure right now, without further evidence.

Hi Garcia,

I agree, many questions are left open, but I doubt I was a responder. Remember, I was -before starting Gc-Maf- also working full-time, though I was struggling tremendously, and it was a matter of time I would go flat. My Nagalase result was normal, but the guy from the lab told me that all CFS-people score low on the Nagalase test. Of course, I don't know what to make out of it, because we can not clearly define this group he was talking about. Were they also on Gc-Maf ? he compared the results with people having cancer, and there the Nagalase levels are sky-high.

The BIG question I ask myself right now, because I'm very confused and negative, is this the well known placebo(I like the band very much) effect ? I hope it is not...

And I don't know if the results are accurate - on the other side, I don't think they can afford mistakes. I mean, structural mistakes ?



OS.

 

[RivkaRivka]

OS,

Thanks for your continued reporting here on this thread. i would not feel discouraged yet. it may be that you need to add nexivir? or do ARVs first, and then GcMAF?

how often are you getting the injections now?

warmly,
rivka

 

[Sushi]

OS,

Thanks for your continued reporting here on this thread. i would not feel discouraged yet. it may be that you need to add nexivir? or do ARVs first, and then GcMAF?

warmly,
rivka

Yes, OS, De Meirleir seems to think Nexavir is important as well as some other support. Would it be possible for you to get an appointment with him to re-assess your situation? We want you to win!

Sushi

 

[Overstressed]

OS,

Thanks for your continued reporting here on this thread. i would not feel discouraged yet. it may be that you need to add nexivir? or do ARVs first, and then GcMAF?

how often are you getting the injections now?

warmly,
rivka

Hi Rivka,

I get the injections weekly -ARV's and Nexavir are no option, because I'm not a patient of KDM. I didn't hear of any doctor prescribing ARV's here in Belgium.

Take care,
OS.

 

[Overstressed]

Hi Sushi,

thankxs for the nice words! I will talk first to my doctor/homeopath and see what he says.

Take care,
OS.

 

[CindyWillis]

Dr. Sharp is one of those doctors. He is in fort worth, texas, very good doctor

I'm not "Crappy," though that isn't to say I'm not crappy...but I'll jump in cause I've been told that Cheney is or will be training some other docs in using GcMAF with patients. But I don't know when, how or who. Maybe someone else does. Cheney is using a different source of GcMAF, but I don't think we have any real data on which is the better source. I think he and De Meirleir keep in regular touch sharing ideas and experience. Both take IRIS seriously and use similar "support" protocols.

Sushi

Dr. Sharp is one of those Doctors that Cheney is working with. He is in Fort Worth Texas and along with following Cheney's prototcol (includiing strict diet according to website), Dr. Sharp has gotten me back to work in only 3 weeks after I started the regimine. By 4 weeks, I could travel around the country for work. For a quick timeline -In March, I had to use a wheel chair. Started to follow Cheney's website and got well enough to walk in 6 weeks. Then went to Sharp and went back to work in 3 weeks. Probably should have waited until 4 weeks like Dr. Sharp recommended but after week 4 was doing well - could work 50 hours a week (still had tiredness but could function at my job again). Then improved to where I could travel 60% of the time and still be okay and occasionally work 14 hour day and still be okay. I owe a lot to Dr. Cheney and Dr. Sharp since I was able to keep my job and can now live a somewhat normal life other than extra sleep everyday and on the weekends and still follow the diet exactly plus take my medications. Very few are prescription or have many side effects.

 

[RivkaRivka]

Dr. Sharp is one of those Doctors that Cheney is working with. He is in Fort Worth Texas and along with following Cheney's prototcol (includiing strict diet according to website), Dr. Sharp has gotten me back to work in only 3 weeks after I started the regimine. By 4 weeks, I could travel around the country for work. For a quick timeline -In March, I had to use a wheel chair. Started to follow Cheney's website and got well enough to walk in 6 weeks. Then went to Sharp and went back to work in 3 weeks. Probably should have waited until 4 weeks like Dr. Sharp recommended but after week 4 was doing well - could work 50 hours a week (still had tiredness but could function at my job again). Then improved to where I could travel 60% of the time and still be okay and occasionally work 14 hour day and still be okay. I owe a lot to Dr. Cheney and Dr. Sharp since I was able to keep my job and can now live a somewhat normal life other than extra sleep everyday and on the weekends and still follow the diet exactly plus take my medications. Very few are prescription or have many side effects.

this is a wonderful recovery story, cindy! how long were you sick for before you had this wonderful recovery?

i know it is asking a lot, but can you tell us the protocol you were on at first, that you got off of Cheney's website, and then also list for us the additional things you started with dr sharp?

are you doing the GcMAF, too?

best,
rivka

 

[RivkaRivka]

Dr. Sharp is one of those Doctors that Cheney is working with. He is in Fort Worth Texas and along with following Cheney's prototcol (includiing strict diet according to website), Dr. Sharp has gotten me back to work in only 3 weeks after I started the regimine. By 4 weeks, I could travel around the country for work. For a quick timeline -In March, I had to use a wheel chair. Started to follow Cheney's website and got well enough to walk in 6 weeks. Then went to Sharp and went back to work in 3 weeks. Probably should have waited until 4 weeks like Dr. Sharp recommended but after week 4 was doing well - could work 50 hours a week (still had tiredness but could function at my job again). Then improved to where I could travel 60% of the time and still be okay and occasionally work 14 hour day and still be okay. I owe a lot to Dr. Cheney and Dr. Sharp since I was able to keep my job and can now live a somewhat normal life other than extra sleep everyday and on the weekends and still follow the diet exactly plus take my medications. Very few are prescription or have many side effects.

this is a wonderful recovery story, cindy! how long were you sick for before you had this wonderful recovery?

i know it is asking a lot, but can you tell us the protocol you were on at first, that you got off of Cheney's website, and then also list for us the additional things you started with dr sharp?

are you doing the GcMAF, too?

best,
rivka

 

[CindyWillis]

this is a wonderful recovery story, cindy! how long were you sick for before you had this wonderful recovery?

i know it is asking a lot, but can you tell us the protocol you were on at first, that you got off of Cheney's website, and then also list for us the additional things you started with dr sharp?

are you doing the GcMAF, too?

best,
rivka

I am also now doing GcMAF but am only 3 shots into it so haven't talked about since I do not know any final answer. The first shot gave me more physical strength and the second one restored my memory function completely. The third one seems to have taken away my food sensitivites so I ate everything in sight including 4 lbs of chololate bars as well as pie and nachos with the works along with everything else I am not supposed to eat. However, I think this was a reaction from having a perfectly strict diet for 9 months during which I never cheated at all. I noticed that while I could eat all that junk without getting seriously sick like before but it wouldn't help my healing process so after an instant weight gain of 10 pounds really starting with the first shot since my food sensitivites were part way better with the first and second shots, I have reverted to Cheney's diet again. I think the diet really helps so went back to it since I noticed it still affected me but not as much. I take 350 liquid drop medications or pills/vitamins a week and 42 injections of stuff and have for 7.5 months so I don't know where to start with everything Dr. Sharp has me taking. All I can say is that most are homopathic and very few require prescriptions or have side effects to watch out for - however, the quantity is amazing. However, it has gotten me better by the week so I take it all. I was sick since November 27, 2009 following a bad case of swine flu. Ironically, my husband has experienced the same process and medicines etc. and has been sick since Sept 15, 2009 after a bad swine flu attack. Before this, he had not had a sick day in 10 years. I was on a 10 day business trip when he got the swine flu so didn't get the swine flu and the following CFS until I caught it from my sister in law during Thanksgiving so I couldn't understand what he was going through until I got it in November. My brother and sister in law also got CFS. My brother and sister in law took a lot of time off work and rested and were well after 7 months. However, my husband and I didn't rest at all and tried to work through it - getting sicker each week until I was sleeping 19 hours a day and couldn't walk in February. He and I normally work 70 hour weeks so we persisted at trying to work until we were both too sick to get out of bed. My brother rested for 5 months and gradually got better on his own but my husband and I didn't and continued to push until we dropped. My food allergies were so bad that my stomach stuck out so far, I couldn't zip my jeans. The headache was unbearable and the sore throat was constant along with the muscle aches and the inability to stand or even walk across the room. Most nights, I felt I belonged in a hospital since I was in so much pain. I had to hire someone to come to our house to take care of us. We have both gradually gotten well by following Dr. Cheney's website (my husband is a doctor) so he could understand it all and then seeing Dr. Sharp who got us up to 75% well and now GcMAF to see if it will get us the rest of the way. I cross my fingers on recovering 100%. I am hoping that GcMAF will help. I was extremely sensitive to vitamin D after I got CFS. Going out in the sun for an extended time or taking vitamin D knocked me completely flat in bed. I find that the GCMAF makes my husband sick, the day after he takes it and makes me sick two days later with flu like symptoms. When I say sick, I mean so sick I can't work and we just stay in bed all weekend after taking it on Friday night. I am still sick half day Monday since I get a delayed reaction. Once that is over, I feel terrific each time and so does he. I understand that these are common symptoms with GCMAF. However, we are strong people, my husband used to bench press 390 lbs before getting sick and I was able to work 110 hours a week for a month straight without getting really tired so it is odd that we have been hit so hard by this illness since we were once very strong people. My staff used to say that I had an immune system from the future since I could work through any flu or illness. I even worked 1/2 days while I had the swine flu but this illness has dropped us to our knees and the reaction from the GcMAF has a very similar effect for a short while each time so far. I hope that this will improve with time. However, the results so far have been so outstanding that I can easily put up with the flu like symptoms and tiredness after taking each shot.

 

[serg1942]

Hi OS,

Thanks So MUCH for sharing your results and your evolution.

Look, I think your experience is very important. From the anecdotal few reports we have on PWCs with good VDR status, we can infer that GcMAF works as it is supposed to.

If GcMAF turns out to help PWCS with good genetics significantly, then we need to bypass these polymorphism. As I said in an old message, a very knowledgeable doctor on HIV and CFS explained to me that some scientific or laboratories (he wouldn’t say) are trying to develop ways to improve VDR receptor function, and by doing so, we would be allowing GcMAF to work…

We do have to find which therapies are these. Of course the apheresis process Richard told us about would be a way, but perhaps there’s an easier one.

You know what? A few of these strategies could be: 1- LDN, 2- Methylation supplementation, 3- more injections, more dosage or more frequency of GcMAF, 4- To take GcMAF with other remedies like Nexavir, or even maybe some ARV to take the virus/es out of the tissues…

I think we should have a direct measurement of our macrophages activation. Not sure KDM is using a direct one, or just extrapolating indirect markers such as C4a, or Nagalase. If we could know the percentage of activation of our macrophages, then we could tweak the treatment support accordingly…

Finally, Nagalase being low in PWCs doesn’t fit at all with the theory behind the XMRV infection and GcMAF working on eradicating the infection…This is a question I’ll ask to KDM in my first appointment.

So, don’t be discouraged, hang on there, and try to tailor the treatment support you need. We need to study this further, together!

Un abrazo,
Sergio

 

[Sushi]

I am also now doing GcMAF but am only 3 shots into it so haven't talked about since I do not know any final answer. The first shot gave me more physical strength and the second one restored my memory function completely. The third one seems to have taken away my food sensitivites so I ate everything in sight including 4 lbs of chololate bars as well as pie and nachos with the works along with everything else I am not supposed to eat.

Hi Cindy,

Thanks for your great report--I send you very best wishes!

I am hoping to take GcMAF with Dr. De Meirleir soon and good reports are welcome. Did Dr. Sharp test your Vit D receptor for polymorphisms? I'd guess not as only Redlabs in Belgium tests both of the relevant alleles--though Genova tests one of them in their Osteogenomic test. If you were tested would you mind sharing your results?

It sounds like you would have the best results on the VDR test--at least from your response from GcMAF.

I just got my VDR results from Belgium and they were: Fok 1 -- low responder, and Bsm 1 -- moderate to low responder. This is certainly disappointing!

I think I'll start a thread just for this test as a number of people are taking it.

Also, does Dr. Sharp give GcMAF weekly and as an IV injection, or does he give it IM. Dr. De Meirleir seems to advise about 10 weeks of IV injections and then switches to IM.

Please keep us posted on how you are doing with this.

Thanks again,
Sushi

 

[leela]

I do appreciate your posting all this good info, Cindy. There is so much that rings true and sincere.
However, there is also an alarming amount of---do I call it hyperbole? Or has your life just contained a lot of---
excess?

I do not mean to be rude *at all*, but I am wondering how it is even possible to take, for months on end, 350 supplements, and 42 injections per week?! To eat four POUNDS of chocolate? Bench press nearly 400lbs? Work 110 hrs per week? (Before illness I worked occasional spurts of 84 hour weeks from a baseline week of 60+ and that was exhausting and demoralising beyond measure. I know we are all different, though.)
I guess the thing I'm trying to say is, there seems to be a theme of "excess' here that is of note not just in your pre-illness life, but in your treatment protocol, and in your lifestyle during recovery.

With all respect, I wonder how it is possible to do the things you report, from the sheer volume of treatments to the work schedule just 4 weeks into the GcMAF. Is it prudent to push so hard before (or even soon after) full recovery?

 

[mojoey]

Hey Cindy,

Thanks for posting, and congrats on your recovery.

With all respect as well, I'm curious how long you were disabled from work for? Was it from November 2009 til March/April 2010? Was it due to the postexertional malaise or something else, meaning what were your worst symptoms? I ask because I read in another one of your posts that magnesium and taurine shots basically cured you of your PEM, and that's the first time I've heard of that for any CFS patient, so hence I wanted to make sure we're talking about the same PEM here.

I'm glad you found Dr. Sharp as early as you did after onset. I'm sure that boosted you and your husbands' shots at recovery tremendously.

 

[mojoey]

I just realized that you, your husband, your brother, and sister-in-law all got sick around the same time. Whatever you got it sounds like an acute infectious outbreak.

 

[undcvr]

does anbody know the names of the websites in the US and Israel that sell gcmaf ?