Has anyone been treated by de meirlier who was found to have low nagalase, what did he prescribe?

[self]

Has anyone been treated by de meirlier who was found to have low nagalase and what did he prescribe? Im assuming that if your nagalase isnt high then GcMaf isnt taken as its not likely to be effective?? Also how long does GcMaf have to be taken , do you have to stay on it for good or is its effect permanent. Gosh Im going to see De Meirleir but I see such diverse reports???/ Did any of you do your own IV injection first time. It seems there are no outward signs of a high Nagalase level without a blood test ,or are there some clues??

 

[Sushi]

Has anyone been treated by de meirlier who was found to have low nagalase and what did he prescribe? Im assuming that if your nagalase isnt high then GcMaf isnt taken as its not likely to be effective?? Also how long does GcMaf have to be taken , do you have to stay on it for good or is its effect permanent. Gosh Im going to see De Meirleir but I see such diverse reports???/ Did any of you do your own IV injection first time. It seems there are no outward signs of a high Nagalase level without a blood test ,or are there some clues??

Hi,

I don't know of patients personally who had low nagalase, but I know are there have been some. There are other contraindications for GcMAF too, such a high inflammation and some other labs.

As far as how long you take GcMAF, one way to monitor this is watching your nagalase levels. Some of us have gone on maintenance doses when nagalase reached normal, but how long that takes varies a lot. I have been taking it for over a year.

I don't think it would be safe to inject yourself with GcMAF IV. I used to get a doctor to do it for the first 3 months. IV injections are much trickier.

I don't know of any "symptom-signs" of high nagalase. Good luck with your appointment! When are you going? A bunch of members from here will be seeing him soon, and maybe you can all meet.

Best wishes,
Sushi

 

[self]

Hi,

I don't know of patients personally who had low nagalase, but I know are there have been some. There are other contraindications for GcMAF too, such a high inflammation and some other labs.

As far as how long you take GcMAF, one way to monitor this is watching your nagalase levels. Some of us have gone on maintenance doses when nagalase reached normal, but how long that takes varies a lot. I have been taking it for over a year.

I don't think it would be safe to inject yourself with GcMAF IV. I used to get a doctor to do it for the first 3 months. IV injections are much trickier.

I don't know of any "symptom-signs" of high nagalase. Good luck with your appointment! When are you going? A bunch of members from here will be seeing him soon, and maybe you can all meet.

Best wishes,
Sushi

Hi Sushi, Thanks for that response. Its such a lot of money for me to go and have all the tests that I was thinking of getting a Nagalase test done in uk. But the truth is that unless I know that Demeirlier just abandons you if your nagalase is low I would like to know what he would suggest under those circumstances . I will have to book my tickets and hotel any day now. Im meant to go at end November. The trouble is that I see that you are all on some additional drugs , now if he prescribes a drug for me that is more than the GcMaf or as well as the GcMaf i may not have enough money!!! Im having to borrow the money and its a finite amount. So Im a bit worried about it . I am too ill to work and I have no private insurance. I think Im going to just have to take the chance. Is there anyone else that can describe their symptoms who has had a high nagalase level?Thanks all , Yes I would like to meet/talk (im in Eire) to anyone else seeing or who has seen DeMeirlier

 

[Sushi]

Hi Self,

He would choose another way to treat you if you have low nagalase. If your nagalase is low he will almost certainly find (through lab tests) that you have other things that are wrong and treat those.

I will PM you the name of someone who lives near you and maybe you could talk about all this on the phone.

Best wishes,
Sushi

 

[aquariusgirl]

My nagalese was in range at baseline. He still put me on Gcmaf.

 

[suzanne]

Hi
Just thought I would add that my nagalese tests have just come back- and I am really surprised that they are low and within normal range.

I have a son with autism and I have had ME for 10 years. I have previously responded well on the Marshal protocol which uses a prescription medication that boosts the immune system thru a vitamin d receptor pathway. So, piecing these bits of information together I just thought my nagalese was likely to be high- well, I am surprised and currently have $1,000 worth of GcMAF in my freezer.

I am interested to know how others with low nagalese have responded to GcMAF. I was on it for 4 weeks at a dose of 20ng and then got bad inflammation symtpoms. I have been off it for 3 months now and the inflammation is starting to settle.

I am confused about the nagalese adn GcMAF- I was definitely feeling better on the GcMAF than off- except for the few days of increased symptoms on each round. Perhaps the nagalese issue is not as relevant as it is purported?

 

[GcMAF Australia]

Hi
Just thought I would add that my nagalese tests have just come back- and I am really surprised that they are low and within normal range.

I have a son with autism and I have had ME for 10 years. I have previously responded well on the Marshal protocol which uses a prescription medication that boosts the immune system thru a vitamin d receptor pathway. So, piecing these bits of information together I just thought my nagalese was likely to be high- well, I am surprised and currently have $1,000 worth of GcMAF in my freezer.

I am interested to know how others with low nagalese have responded to GcMAF. I was on it for 4 weeks at a dose of 20ng and then got bad inflammation symtpoms. I have been off it for 3 months now and the inflammation is starting to settle.

I am confused about the nagalese adn GcMAF- I was definitely feeling better on the GcMAF than off- except for the few days of increased symptoms on each round. Perhaps the nagalese issue is not as relevant as it is purported?

Hi Suzanne,
The whole GcMAF science thing has yet to be sorted. I am in contact with a US scientist that suggests that there is more to it. Because there is no money for research it is hard to get the research needed done.
I dont know if you are aware but GcMAF gives about 30-75% response in autism. I have some more info somewhere.
Maybe there is some connection here.
Thanks
& best regards

 

[GcMAF Australia]

Has anyone been treated by de meirlier who was found to have low nagalase and what did he prescribe? Im assuming that if your nagalase isnt high then GcMaf isnt taken as its not likely to be effective?? Also how long does GcMaf have to be taken , do you have to stay on it for good or is its effect permanent. Gosh Im going to see De Meirleir but I see such diverse reports???/ Did any of you do your own IV injection first time. It seems there are no outward signs of a high Nagalase level without a blood test ,or are there some clues??

Hi self,
Have you contacted the GcMAF in England?? www.gcmaf.eu/
i have posted re low nagalase above.
Regards GcMAfie

 

[GcMAF Australia]

One person treated ulcers with GcMAF, he had low(ish) nagalase, may it also could help his diabetes!!