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

[serg1942]

Hi Cindy, It may be a coincidence too, but I developed vitiligo a few weeks after finishing the treatment with accutane. A couple of years later I developed CFS. I don't thing it is coincidence. I just posted about this:

http://forums.aboutmecfs.org/showth...-Straight-Talk&p=165969&viewfull=1#post165969

Can you tell me more about the action suit going on about accutane?

I think i am developing more acne too with gcMAF...Normally i don't have acne if i don't take chocolate...Now I have a bit, like if i were taking it, but i am not...So probably is a good sign!

Thanks,
Sergio

 

[Berthe]

Now I'm really troubled. My eldest son developed Asperger at the age of 15 (diagnosed by a multi-disciplinary team of 6 physicians at age 18) when he took Roaccutane. I'm XMRV+ and suffer from ME/CFS and start to realise that my son is probalby + as well and that the autisme spectrum symptoms are somewhat the same as my symptoms. He needs more then 12 hours sleep a day and wonders if he has the same illness as his mother. I'm upset about it.

Love,
Berthe

 

[robertmiller]

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!

 

[AlexMac]

the link doesn't work

 

[AlexMac]

Hi Cindy, It may be a coincidence too, but I developed vitiligo a few weeks after finishing the treatment with accutane. A couple of years later I developed CFS. I don't thing it is coincidence. I just posted about this:

http://forums.aboutmecfs.org/showth...-Straight-Talk&p=165969&viewfull=1#post165969

Can you tell me more about the action suit going on about accutane?

I think i am developing more acne too with gcMAF...Normally i don't have acne if i don't take chocolate...Now I have a bit, like if i were taking it, but i am not...So probably is a good sign!

Thanks,
Sergio

So developping ACNE due to a trial drug would be a good sign???

 

[Sushi]

Hi Robert,

Congratulations on your quick response! This is encouraging. I am also taking GcMAF (I've had 8 shots), but my response is slower. It sounds--from what you have written--that you may be getting an inflammatory response which is something to monitor with GcMAF. If your doctor doesn't have a protocol to handle this, PM me and I'll tell you what some other doctors are suggesting.

It is important to deal with inflammation. It is also a very good idea to get your blood tests. A few patients get spikes in calcium and vit D. Phosphorus also needs to be watched.

Do you mind saying who your doctor is? We are trying to track patients on GcMAF with a spreadsheet.

https://spreadsheets.google.com/ccc...iV2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0

Oh, I see you have filled this in but I don't recognize the source of your GcMAF? PPS? I am not familiar with this. And your doctor? Don't mean to be nosey, just interested in someone from the US who has found someone to prescribe GcMAF. I am from the US and went to KDM in Brussels to get it--along with the rest of his protocol.

Your post is very encouraging--thanks again!

Sushi

 

[AlexMac]

Is this Serious?

Now this is very serious, I hope you're being followed-up by a good doctor who knows what he's doing.
I contacted GcMAf since I recently tested positive to XMRV, I wanted to know if there were some Clinical trials on this "miracle medicine".
To my surprise I got the following message TODAY (on a Sunday afternoon):

De : David Noakes [mailto:davidjnoakes@yahoo.co.uk]
Envoy : dimanche 20 mars 2011 03:02
: Alexandra Maclachlan
Objet : Re: GcMaf info: Clinical Trials on GcMaf


We have two or three XMRV people.

You are welcome to buy it, but we're not doing a special XMRV trial.
Best wishes

David Noakes.

This sounds suspicious to me, you're not buying "candies"...

 

[Sushi]

Now I'm really troubled. My eldest son developed Asperger at the age of 15 (diagnosed by a multi-disciplinary team of 6 physicians at age 18) when he took Roaccutane. I'm XMRV+ and suffer from ME/CFS and start to realise that my son is probalby + as well and that the autisme spectrum symptoms are somewhat the same as my symptoms. He needs more then 12 hours sleep a day and wonders if he has the same illness as his mother. I'm upset about it.
Love,
Berthe

Hi Berthe,

This is a mother's big fear--I am sorry. I am also XMRV + and my mother had much the same symptoms though no one knew how to diagnose her and she has since died. I also know of several other patients whose children have similar neurological symptoms.

You are seeing a good doctor--why not have your son evaluated as well? The only good part is that he is still young and may well respond to treatment and not lose so much of his life.

Best wishes,
Sushi

 

[Sushi]

We have two or three XMRV people.

You are welcome to buy it, but we're not doing a special XMRV trial.
Best wishes

David Noakes.

This sounds suspicious to me, you're not buying "candies"...

No, not candies for sure! However, clinical trials have been published using GcMAF for HIV and Cancer (very positive) and KDM has many, many XMRV + patients on GcMAF. He is following them very closely and knows what precautions and adjustments to make--as do some (I hope all) of the other doctors who are prescribing GcMAF.

I believe that there are clinical trials being planned for XMRV+ patients but this takes time and money and since GcMAF is not a drug, the usual source of funding (pharmaceutical companies) is not an option.

KDM is thoroughly qualified in 3 medical specialties and is working closely with the people at WPI. He is seeing slow but definite improvement in patients who have taken GcMAF for a number of months. I am hopeful--and watchful--and being checked with regular lab tests for anything out of range.

Sushi

 

[serg1942]

Hi guys:

Berthe:

It is normal that you are concerned about your son. With the evidence we have, it seems clear that this kind of neuro-immune diseases we are dealing with have a huge genetic component, and if it turns out that exogenous viruses play a critical role as well, this is another factor to take in to account.

BUT, as Sushi said, you know it, so you can make things in advance to avoid further issues. I think this is a good thing, as you have the tools to prevent future problems that could or nor happen.

I wish you and your son the very best!

RobertMiller:

CONGRATS for your fantastic response to GcMAF!! I hope you continue this way and pls let us know!

I would also like to know the source of GcMAF you are taking, if possible.


AlexMac:

So developping ACNE due to a trial drug would be a good sign???

Yes! of course! with gcMAF we expect to stimulate the immune system, so any sign of immune activation is more than welcome, as it tells you that GcMAF is working as it is supposed to.

Saluditos!
Sergio

 

[girlinthesnow]

Hi everyone, this is my first post on this thread. I had my first GcMAF shot last Monday and three days later developed the first head cold I've had in over 5 years. Is this is a good sign? I haven't started nexavir yet but will be starting in 2 weeks time.

 

[Sushi]

Hi everyone, this is my first post on this thread. I had my first GcMAF shot last Monday and three days later developed the first head cold I've had in over 5 years. Is this is a good sign? I haven't started nexavir yet but will be starting in 2 weeks time.

Yes, girlinthesnow,

This sounds like immune activation. I think most of us are getting some kind of reactivation of old infections--because our immune systems are now strong enough to mount a response. This isn't exactly fun, but is probably a sign that the GcMAF is working.

And after about 3 days the macrophages are supposed to be at the height and greatest activity, so the timing makes sense too.

I hope you do well. Please keep letting everyone know how it goes.

Best wishes,
Sushi

 

[girlinthesnow]

Thanks for the good wishes Sushi. This is first cold I've ever had that could be called exciting, I'm really thrilled to feel this kind of normal lousiness!

All the best to you,

girlinthesnow

 

[serg1942]

To GREG22

Hi Gregg22,

Just wanted to thank you for the info about vit D, and its relationship with autoimmune diseases, etc.

I am putting together some info about it, as it is very interesting. I am trying to figure out the exact reasons for the progress of Vit D while on GcMAF, as it is clear in my case that my low 0.25 levels are getting higher and my high 1.25 levels are getting lower.

If I finally write something coherent in this regard I'll post it here! (just working on it!)

Best,
Sergio

 

[Rrrr]

@ Rrrr

Do you know the price Johnson Drug charge and do they ship internationally?

Also, GcMAF comes in small individual plastic vials, with a screw-top. Assuming you would want a three-month supply, and therefore 12 vials, I would say that that thermos is fine.

Thanks!

I do not know the price, as mine is covered by Medicare (gov't). And my guess is that they would ship internationally, if you pay for it. They are very kind there. Call and talk to Steve. Or email and ask for Steve. Or anyone in the compounding lab at Johnson.

Thanks for your thoughts on the thermos! I wonder if airport security will allow me to transport a steel thermos in my luggage?

 

[Rrrr]

Hi Rrrr,
Good luck with your trip, we are all different and just because it's not working out well for me does not mean that it will not be a success for you. It's the neuro symptoms that are so much worse for me with the gcmaf. I had made small brief improvements that disappeared. However we have to keep trying and so I just hope things will improve for me.

Your flask looks much better than the one used for my medicine. After 10 hours in the flask it was still frozen. Make sure to pack the thermos to capacity with ice or even anything because leaving a big space of air will make it defrost quicker. Hope that helps a bit.

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!

 

[Rrrr]

Hey Rrrr,

I have the nissan and the reviews are true! If I put hot tea in there and I forget about it for 2 days (not uncommon with my brain) it's still borderline hot!

In fact, the biggest concern with the thermos is that you might unexpectedly burn yourself I've seen it happen several times

thanks, joey! have you tried ice? does the ice stay frozen after 24 hrs?

i will try this when mine arrives (this week) and report back to you all. i'll put a frozen vial of water in the thermos and pack the thermos with ice. i'll see what happens after 24 hrs.

rrrr

 

[Rrrr]

Hi everyone, this is my first post on this thread. I had my first GcMAF shot last Monday and three days later developed the first head cold I've had in over 5 years. Is this is a good sign? I haven't started nexavir yet but will be starting in 2 weeks time.

girlinthesnow,

Great!!!!! can you tell us where you are getting yr gcmaf? it helps to keep track of these things.

is anyone doing the BGLI except Cindy and lou? Cindy, how are you doing lately on gcmaf?

rrrr

 

[Peggy]

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.

 

[girlinthesnow]

Hi Rrrr, I've posted here https://spreadsheets.google.com/ccc?key=0AllDPaztxjQDdFpOWEVLTld6SXNiV2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0
Good luck with your GcMAF!

girlinthesnow