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

Sasha

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I was taking MAF 878 for about 4 months and had improved functionally a little bit - needed to lay down less during the day - but actually felt worse in that my fluey malaise became present all the time. I went on a 'MAF holiday' and have now restarted.

Is that malaise an inflammation thing? It's not pain, it's that 'sick muscles' sort of feeling (hard to describe). If it's going to go away if I push through that would be useful to know.
 

suzanne

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Cindy willis

I am hanging off your every word, when you say that in time, as you get well the inflammation will go down. Someone actually advised me that it is the gram negative bacteria that might be the main culprits of the inflammation. That might explain why Dr De M. seems to test people for their pathogens and treat with abx first- before GcMAF. Probably the toxic load for the body and therefore inflammation, would therefore be lessened- just a guess.

I am even thinking that I might try a nano dose of artemisin for this reason- and it is anti inflammatory- so may be worthwhile? But as I feeling a bit washed up from my own experiments, I am going to hold off for a bit.

I am very interested in what you have said about the use of benedryl and allergy pills. I assume you mean anti histamines?

I do not take any benedryl or anti histamines with my GcMAF and had never really heard any one talking about this before.

I know that at least some anti histamines cause me problems, and so I gave up experimenting with them. I was looking at mast cell activation at one stage and thought that antihistamines may help- especially as I have itchy skin a lot of the time. I haven't pursued this fully as the itch doesn't seem to be improved by the anti histamines and in fact I seem to get increased headache with most of them.

I have read somewhere that you need to really take a H1 and H2 blocker at the same time for it to be helpful for mast cells. I gave up fairly soon after a few of the meds gave me significant symptoms and I just felt so much worse.

Any one have any experience in all this?
 

ukxmrv

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Dr Enlander suggested the USA form of Benadryl to take for GCMAF reactions when I spoke with him. It was to help reduce any possible IRIS.

When I started on MAF314 and had some possible immune activation (sore throat glands etc) I ordered some. I'd used it before when I had IVIG.

Prof. Demeirleir suggested this supplement to one patient I know on GCMAF http://www.daosin.co.uk/

Both of these were a while ago now and both doctors may be using different things now.
 

Daffodil

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demeirleir says it is very important to treat gut before gcmaf to lower inflammation. am doing poorly too, maybe look into product called anatabloc?

had interesting exprience on xifaxan
 

Symptomatic

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cannot find plz tell me who makes
Sorry for the long post (this info is from the above-mentioned website). I do think it's worth it for anyone considering taking the product to go to that website and read all the info...

Who makes Anatabloc?

This is where things get a little complicated. It’s said that Anatabloc is produced by a company called “Rock Creek Pharmaceuticals.” With an impressive name like that, you’d think this was a big pharmaceutical company like Merck or Pfizer. That’s what I thought. But, I couldn’t find a website for Rock Creek Pharmaceuticals.
I found this strange.
When I went to the Anatabloc website (Anatabloc.com), I saw that they don’t list an address for Rock Creek Pharmaceuticals. They do however give a number to call and order Anatabloc : 800-778-2031.

So I called this number, and discovered that it’s not the phone number for Rock Creek Pharmaceuticals. Rather, this number takes you to a call center in Michigan where people can order Anatabloc. I wanted to know where Rock Creek Pharmaceuticals was located, but the person I spoke with could not tell me. He did refer me to another call center number (800 391 9164) which is the customer service call center, located in Lansing Michigan.

The person I spoke with at this call center told me that Rock Creek Pharmaceuticals is located at 181 Marsh Hill Road Orange CT 06477. The link I’ve provided shows what this address looks like. It’s a highway. I only saw a house in the distance. Other than that, I saw nothing but highway and trees.

So, I then checked the Better Business Bureau website for Rock Creek Pharmaceuticals and discovered yet another address. The address the BBB has is 4470 Cox Rd Ste 110, Glen Allen, VA 23060. This address is a parking lot adjacent to a large building.

According to Google, several businesses are located at this address, including Star Tobacco Inc. This is important, because if you Google Rock Creek Pharmaceuticals, one of the websites that comes up is Star Scientific.

It turns out that Star Scientific and Rock Creek Pharmaceuticals are the same company! Star Tobacco Inc. is a subsidiary of Star Scientific —as is Rock Creek Pharmaceuticals. This make sense because Anatabine— the main ingredient in Anatabloc —is also found in tobacco.

Star Scientific is a publicly traded company. Its stock symbol is STSI. Star Scientific works to reduce the damage from smoking tobacco. In other words, part of their work is to try to make a “healthier” form of tobacco.

According to a 2012 blurb about Star Tobacco in Bloomberg Business Week, Star Tobacco lists yet another address of 801 Liberty Way Chester, VA 23836. According to Loopnet.com this is a distribution center. I’m guessing this might be where they ship Anatabloc from?
The customer service person I spoke with told me that Star Scientific does the actual science on Anatabloc, while Rock Creek Pharmaceuticals is the maker and distribution center for the product.

Since Star Scientific works with tobacco, I can only guess that they chose the clean, wholesome-sounding name, Rock Creek Pharmaceuticals, to distance themselves from the negative association people usually have of tobacco products.

Update. As reported in the Winston-Salem Journal on 12/17/12, Star Scientific is getting out of the tobacco business to focus on development of Anatabloc and other health and wellness products. The reasons for the change are cited as being due to US tobacco regulations and the “negative impact” of having a company in the tobacco business at getting researchers interested in investigating anatabine as a product to reduce excessive inflammation.
The journal also cites that Star Scientific’s association with GNC puts their product within reach of most people in the US, given that there is a GNC within 5 or less miles of 95% of all Americans.
 

Sushi

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Very interesting detective work! I also tried to track them down but didn't get this far. I knew that anatabine came from tobacco, but this information makes me question the price of Anatabloc even more! (It is very expensive.)

Sushi
 

Sushi

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suzanne
I think most of the docs who give GcMAF regularly tell patients to take an antihistamine and, often both an H1 and an H2 blocker.

I have never tried it without an antihistamine, but the antihistamine doesn't completely deal with inflammation -- I have still had problems with it if my dose was too high.

I think the reason that inflammation can get better is that the inflammation is caused by the immune system's attack on pathogens--the fewer the pathogens the less the attack-inflammatory factor.

But Sasha, I don't think you can "push through" this. In my experience it just got worse until I stopped for a while and then lowered the dose.

Sushi
 

Sasha

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But Sasha, I don't think you can "push through" this. In my experience it just got worse until I stopped for a while and then lowered the dose.
Thanks, Sushi - glad to know it was best I stopped! Waiting to see what happens the second time around, now.
 

Daffodil

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Yes very good detective work
Asked my NYC doc about anatabloc...he said hmmm interesting...but who paid for studies....then did a little more searching and found something by john Hopkins and said....OK getting more interesting....

He does not know the dose we would need

It is less expensive if you call and try to cancel subscription...they give you good deal
 

CindyWillis

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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.
Until I got better I never had fatigue for less than Friday night to Monday morning and then after a year, Friday night to Sunday evening and then Friday night to Sunday morning. Now it is not very noticeable at all. I was surprised that you only have a 1/2 day of fatigue. It seems shorter than I ever had in the first 1.5 years.
 

Shoesies

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Until I got better I never had fatigue for less than Friday night to Monday morning and then after a year, Friday night to Sunday evening and then Friday night to Sunday morning. Now it is not very noticeable at all. I was surprised that you only have a 1/2 day of fatigue. It seems shorter than I ever had in the first 1.5 years.
I should have said "added faigue symptoms" I still have fatigue daily. I am only able to go to the store or doctor one daya week, then I am back down. I can now get up and cook a light meal for myself. Not often mind you, but that is still progress. The extra fatigue from the shot put me down except for bathroom breaks for a while. It is better now.
 
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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.
I beleive that De Merlier's GcMAF is only a part of the molecule??
which allergy pill? may i ask
 

Sushi

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I beleive that De Merlier's GcMAF is only a part of the molecule??...
Could you say more about that? Not sure what that means.

Here is the description in the Medical Declaration for carrying it: 1 vial contains physiologic serum + 100 nanograms macrophage activating factor (which is a substance natural to the body).

Sushi
 
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some time ago scientists isolated the active part of GcMAF
this company sort of faded out
i am not sure where De Merlier gets his from
I am not sure if the two are related?
maybe his has slightly different properties??