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

Symptomatic

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My D 1, 25 was 133.1 so I am off Vit D for now.
If you do look into CIR/MP and choose to start Benicar, I am more than happy to talk to you offline (I am not a hardcore MP person, but I do find some of what they say to be applicable to me, and Benicar in particular has been a lifesaver). My 1,25D was 140.7 back in July 2011 before I started Benicar (I also take LDN, Homeo-KMAF, Minocycline, Azithromycin). Did not respond well to curcumin or Malarone. I also have high nagalase.

Did the 23andMe testing, followed by HDRI methylation cycle testing. Started on my version of SMP this week, with the Perque-B12. Waiting for other supplements to arrive, and we'll see how that goes.
 

Shoesies

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[quote="Shoesies, post: 340356, member: 9584"...The doctor got the Lyme testing back and it is positive. They now want to do PCR DNA testing for mycoplasma. Personally I think we should just go on doxy for the year and the flagyl for six weeks.
Just doxy is probably not enough for chronic Lyme. Most of the Lyme docs give a "cocktail because the critters have to be hit at several stages of development and some are hard to target.

Good luck!

Sushi[/quote]

Thanks for the info sushi. I am having a whale of a time getting these two docs to agree on anything. The protocol for the lyme was one doc's recommendation. The other wants to take a "wait and see" attitude and that is NOT happening.
 

Shoesies

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Shoesies, so sorry to hear about your husbands ban on kissing etc! I'm glad mine doesn't read these on line groups.
Mine doesn't read here. He has read all the clinical studies I passed on...it was probably not the best idea...but the Dr. kept telling us there is no way this is passed from me to him...uh, I guess this proves Dr's can be oh so wrong. Though now they think he may have given it to me and my immune system is weaker. Who the hell knows. A YEAR? Damn.
 

Shoesies

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If you do look into CIR/MP and choose to start Benicar, I am more than happy to talk to you offline (I am not a hardcore MP person, but I do find some of what they say to be applicable to me, and Benicar in particular has been a lifesaver). My 1,25D was 140.7 back in July 2011 before I started Benicar (I also take LDN, Homeo-KMAF, Minocycline, Azithromycin). Did not respond well to curcumin or Malarone. I also have high nagalase.

Did the 23andMe testing, followed by HDRI methylation cycle testing. Started on my version of SMP this week, with the Perque-B12. Waiting for other supplements to arrive, and we'll see how that goes.
Thank you. I am looking into it through the two docs I have currently. We shall see. Brain fog today. I will probably have a million questions when it lifts.
 
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Xan- Everyone has to go by their Dr. and how they feel.I am just going by what Cheney rec. He has been in on this from the beginning. You can go to the Cheney Clinic website (google) there is some info on this. I would not change anything your Dr. says if you are doing better. That is what matters.
Always appreciate any new info and what works for people.I do know he has select patients who have done well and some that haven't.May depend on where your Nagalase is. Please keep me posted as to how you do.Where is Dr.
Noakes???Do you take D oral or inj?

The Best,

San Diego

San Diego
Hey San Diego! (Beautiful City) David Noakes makes GcMAF at GcMAF.eu (Belgium), My Nagalase dropped from 1.9 to 1.1 in the first four months. My understanding is that three labs make GcMAF, one in Japan, one in Israel and the one In Belgium where David Noakes works.
 

Sushi

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Hey San Diego! (Beautiful City) David Noakes makes GcMAF at GcMAF.eu (Belgium), My Nagalase dropped from 1.9 to 1.1 in the first four months. My understanding is that three labs make GcMAF, one in Japan, one in Israel and the one In Belgium where David Noakes works.
Hi, there are more 2 more labs in Europe, and from what was written on the GcMAF.eu site, it looks like the Japanese product is less than great.

Sushi
 
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Hi Mellster, where do you get the MAF314...and if I also may ask, what antivirals and natural anti-microbals?
Thanks so much, Starfive
I got it from Uta Santos-Koenig in Austria, I know there is a thread asking about its quality, I didn't answer because you have to try it and I cannot make any claims about the general quality except for that it seemed to have helped me. I am about to finish a 1 year course. As for other supps, there are so many, but mainly I take Paw-Paw & Graviola, lots of raw onioins and garlic, oil of oregano and Cordyceps. Also AHCC and IP6 for immune support. cheers.
 

CindyWillis

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I haven't been on the website for 3 months but wanted to let everyone know that at 100 (1ml) of GCMAF for two months now I am symptom free except for intensive exercise. I have averaged 80-95 hours a week at work for those two months and even with all nighters etc. have not have symptoms except for the intensive exercise. I find that I can exercise and am doing so but can't do it intensively without a problem. Otherwise, I am 100% good. I am also taking heppapressin from Dr. Enlander and find that it is extremely important. I ran out of it and couldn't get it for 2 weeks 7 weeks ago and started to have trouble without it. I take it daily at .20 a day (5 days) and then take .6 when I take my GCMAF shot. The heppapressin has been as important as the GCMAF. I am hoping to take the 100 (1 ml) for another 8 months and by then I should be able to start going off of it slowly. I will log back in once I can exercise intensely and let everyone know. My husband is also taking 100 (1ml) a week for the past month and is also doing very well. We are also taking B12 shots, Dr. Endlander's morning and night immune strengther and probiotics.
Hi All,

I just wanted to check in since it has now been a year that I have been taking 100NG of GCMAF a week IV. I understand that you have to take more to have the same effect if it is IM but I am not recomending one way or the other. I do not notice my chronic fatigue at all and have almost zero effect to taking the shots now. I notice a slight dip in energy the day after I take it but not much. I am still averaging 75-90 hours as week most usually around 85 and do not notice any problems but still with intensive exercise. Lifting heavy weights and walking over 2 miles at one time, I notice the next day. My husband also still has problems with lifting heavy weights but he can walk up to 7 miles without a reaction. Before we got sick, he could walk 15 in a day and I could walk 5 so we are at 40% of heavy exercise of what we could once do. However, other than that we are symptom free. We will keep taking 100 NG of GCMAF IV until we can exercise intensively and then start reducing the amount and go off of it all together over time as Dr. Enlander has recommended. I am still taking Heppapressin daily and find it to be invaluable. I will post again when I can heavily exercise since then I will not have any effects of the chronic fatigue. Just wanted to put this out there.
 

Daffodil

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wow. nice! i am surprised dr. enlander says you can one day go off of it completely. if you stay recovered a year or 2 after stopping, i wonder if it means you are cured!?
 

Sushi

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CindyWillis

That is great--so glad it is going well. I also think that the hepapressin (or, for me, Nexavir) is important.

The trick is, though, to tolerate a high dose of GcMAF without getting too much inflammation.

Best,
Sushi
 

suzanne

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Hi all and
@ cindywillis.

It is always a relief to hear that others have made progress. I am really very happy that you have got your life back.

It is also frustrating that my body ( and many others here) just dont seem to be able to cope with those doses of GcMAF.

I have struggled for more than 6 months now trying to find supplements that may dampen down my inflammation and therefore enable me to better tolerate the GcMAF. I think this may be a lost cause for me.

Without going into all the details, I have trialled almost every known anti inflammatory and have varying degress of bad reactions to them all- they either seem to play a part with my immune system ( aloe is the most recent experience in this respect) and then I crash, or they give me an immediate negative reaction..things like pomegranate, blueberry, luteolin, curcumin ( perhaps a phenol sensitive issue I have?)...

I have been off the B12 protocol for 12 months and in that time have really just treaded water. I trialled the GcMAF for a month and then crashed. I was taking 20 ng only

I am in such a bad way at the moment I am not sure of what path to take but have decided that to trial more anti inflammatories and have constant reactions to them is just counter productive.

I think my current reaction ( massive head and neck pain and extreme fatigue) is probably from taking some aloe vera 4 days ago. Funny I felt good on the first day but crashed after a smaller dose on day 2. Today is day 5 and I am very sick still. It seems to have triggered massive inflammation- head, neck, hips, back, wrists. I will spare the list but needles to say I just feel hideous, and SO tired.

I am going to let all this stabilise ( hopefully I will feel better in another few days) and then I am thinking of trialling the smallest dose I can of GcMAF - like about 5 ng. I am hoping that at this dose I may be able to just ride out the inflammatory symptoms that are sure to show their ugly little heads.

Let me know if there are any of you that have had the same dilemma...and have you succeeded in any way by going to a tiny dose like 5 ng for a period of time.

I know @daff has had ongoing problems of a similar kind to mine (inflammatory flares) that seem to be the immune system cranking up as soon as the immune system kicks in?

I have got some KMAF but seemed to react to even 1 drop of that every 3-4 days, so I never stayed with it.

I declare, I am lost, and in a bad pain space :(
 

Shoesies

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IDK suzanne I am on 5ng and I have had some increase in stamina. I have a good day and a bad day so, will continue and see. The hubs is going on 20ng which is A TON. I know that he is 285lbs but man that is a lot. I think I am staying right here for a good while. My fatigue on shot day has decreased to 1/2 day.
 

CindyWillis

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wow. nice! i am surprised dr. enlander says you can one day go off of it completely. if you stay recovered a year or 2 after stopping, i wonder if it means you are cured!?
I was surprised as well about going completely off it so we will see. He was right about taking 100NG. I never thought I could get this well from doing that so he is most likely right about getting off it completely. He has been right about everything else but it is hard to believe until it actually happens.
 

CindyWillis

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WOW. I did not know Dr. Enlander gave IV GcMAF. This story gives me hope.
To be clearer, Dr. Enlander doesn't give GCMAF by IV and he doesn't recommend that at all. That is something that I do on my own. He strongly recommends IM instead and does not recommend IV at all.
 

CindyWillis

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Hi all and
@ cindywillis.

It is always a relief to hear that others have made progress. I am really very happy that you have got your life back.

It is also frustrating that my body ( and many others here) just dont seem to be able to cope with those doses of GcMAF.

I have struggled for more than 6 months now trying to find supplements that may dampen down my inflammation and therefore enable me to better tolerate the GcMAF. I think this may be a lost cause for me.

Without going into all the details, I have trialled almost every known anti inflammatory and have varying degress of bad reactions to them all- they either seem to play a part with my immune system ( aloe is the most recent experience in this respect) and then I crash, or they give me an immediate negative reaction..things like pomegranate, blueberry, luteolin, curcumin ( perhaps a phenol sensitive issue I have?)...

I have been off the B12 protocol for 12 months and in that time have really just treaded water. I trialled the GcMAF for a month and then crashed. I was taking 20 ng only

I am in such a bad way at the moment I am not sure of what path to take but have decided that to trial more anti inflammatories and have constant reactions to them is just counter productive.

I think my current reaction ( massive head and neck pain and extreme fatigue) is probably from taking some aloe vera 4 days ago. Funny I felt good on the first day but crashed after a smaller dose on day 2. Today is day 5 and I am very sick still. It seems to have triggered massive inflammation- head, neck, hips, back, wrists. I will spare the list but needles to say I just feel hideous, and SO tired.

I am going to let all this stabilise ( hopefully I will feel better in another few days) and then I am thinking of trialling the smallest dose I can of GcMAF - like about 5 ng. I am hoping that at this dose I may be able to just ride out the inflammatory symptoms that are sure to show their ugly little heads.

Let me know if there are any of you that have had the same dilemma...and have you succeeded in any way by going to a tiny dose like 5 ng for a period of time.

I know @daff has had ongoing problems of a similar kind to mine (inflammatory flares) that seem to be the immune system cranking up as soon as the immune system kicks in?

I have got some KMAF but seemed to react to even 1 drop of that every 3-4 days, so I never stayed with it.

I declare, I am lost, and in a bad pain space :(

For whatever it is worth, I have tried three different kinds of GCMAF and found that Dr. Demelier's form of GCMAF gave me the least amount of inflammation by a long shot. Also, I am sure you are doing this already but Dr. Cheney recommends that you take liquid benedryl an hour before you take the shot. Someone correct me if I am wrong since I can't remember that since I did that a couple years ago. However, for the past two years, I take an allergy pill at the same time I take my shot and again the next morning and then every morning of the week. Without the allergy pill each morning, I have inflammation. I am sure that you are already doing such things and that the problem is the amount of inflammation and you may already be taking Dr. Demelier's form of GCMAF so maybe none of this is helpful. The sad thing is that the inflammation goes down as you get well so as you get well, it all goes away. Yet, how to get there is the problem.