Parkinson's Disease Tulip


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Old 06-15-2012, 09:48 AM #1
Diego24
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Default glutathione

http://www.youtube.com/watch?v=uQRCpdcGwIU

This video is really amazing. When I first saw it, I was really stunned. So this guy takes mirapex and sinemet ... hardly working for him. Then after some glutathione treatment the guy walks better than me. So I started looking more about it. More specifically if there were clinical trials conducted already. I found this:

http://clinicaltrials.gov/ct2/show/N...rkinson&rank=2

Anyway, this is not much information as I don't really find a good description of the results. I was wondering whether anyone else here knows more about it. If gluathione works I think this could be preferred over things like sinemet and levedopa; especially because it is an anti-oxidant and therefore doesn't induce toxics in human brain preventing medecin induced dyskenesia. Anyone has more useful information over glutathione ?
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Old 06-15-2012, 09:57 AM #2
soccertese soccertese is offline
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it doesn't help, i tried it. there was a clinical study by a major pd researcher showing it doesn't help.
http://www.vanguardneurologist.com/g...kinsons-study/

but you can try it. i got a local compounding pharmacy to prepare the glutathione and got my neuro to write a rx for the syringes, etc. and a nurse friend administered it, takes about 15minutes per infusion and painless. might cost $200-$300 dollars for a month? or you can get it from the pharmacy that perlmutter recommends.

you can search the board for prior discussion on any topic.
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Old 06-15-2012, 10:17 AM #3
Diego24
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Quote:
Originally Posted by soccertese View Post
it doesn't help, i tried it. there was a clinical study by a major pd researcher showing it doesn't help.
http://www.vanguardneurologist.com/g...kinsons-study/

but you can try it. i got a local compounding pharmacy to prepare the glutathione and got my neuro to write a rx for the syringes, etc. and a nurse friend administered it, takes about 15minutes per infusion and painless. might cost $200-$300 dollars for a month? or you can get it from the pharmacy that perlmutter recommends.

you can search the board for prior discussion on any topic.
On another forum I also just read it doesn't work. I am surprised. So this video on youtube is a scam ?

Did you stop taking meds when you did this glutatione thing ? This guy apparently was taking mirapex and sinamet. Maybe the combination of these meds with glutatione gave the remarkable improvements.

Anyway, I am still surprised. If it doesn't work, why did it work for the guy on youtube (if isn't a scam video) ? I don't think such an improvement can be because of the placebo effect.
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Old 06-15-2012, 10:25 AM #4
soccertese soccertese is offline
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i gave you my opinion and experience plus the results of a controlled study that says it has no more affect than a placebo. i suggest you contact perlmutter if you want to pursue this but i'm not qualified to discuss this matter in anymore depth.

i wasn't taking any meds at the time.

and yes, you can't believe everything that you see on the web. think about it, if it really helped, don't you think every pd'er reading this board who could afford it would be using it?
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Old 06-15-2012, 10:38 AM #5
Diego24
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Quote:
Originally Posted by soccertese View Post
i gave you my opinion and experience plus the results of a controlled study that says it has no more affect than a placebo. i suggest you contact perlmutter if you want to pursue this but i'm not qualified to discuss this matter in anymore depth.

i wasn't taking any meds at the time.

and yes, you can't believe everything that you see on the web. think about it, if it really helped, don't you think every pd'er reading this board who could afford it would be using it?
I am not saying I don't believe you. There has been a clinical trial which resulted to be negative also. I am just a bit wondering about the movie I saw.

Also ... it's not because something didn't prove to be useful in a clinical trial that it is crap. Maybe not enough glutatione entered in the brain, as I heard this product has difficulties crossing the BBB. The guy in the video seems like he has late stage PD. As Reverett once told, PD affects the BBB, so maybe because he is in a late stage his BBB is affected and enough glutatione enters his brain to be effective. People in late stage PD lack a lot of glutathione. Are you late stage, initial stage or in between ?

Anyways, they didn't give up on it. I just saw they are testing a nasal spray in a clinical trial. Who knows ...
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Old 06-15-2012, 11:07 AM #6
lurkingforacure lurkingforacure is offline
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Default didn' work for us either, sorry

Quote:
Originally Posted by Diego24 View Post
I am not saying I don't believe you. There has been a clinical trial which resulted to be negative also. I am just a bit wondering about the movie I saw.

Also ... it's not because something didn't prove to be useful in a clinical trial that it is crap. Maybe not enough glutatione entered in the brain, as I heard this product has difficulties crossing the BBB. The guy in the video seems like he has late stage PD. As Reverett once told, PD affects the BBB, so maybe because he is in a late stage his BBB is affected and enough glutatione enters his brain to be effective. People in late stage PD lack a lot of glutathione. Are you late stage, initial stage or in between ?

Anyways, they didn't give up on it. I just saw they are testing a nasal spray in a clinical trial. Who knows ...
Count us as another "no", I wish it had worked but it didn't. Plus, insurance wouldn't cover it (can't blame them, if it doesn't help!) and it was darn pricey.

Sorry, we, too, were really optimistic on this. Having said that, I read where it did help some folks, I just don't know why some benefit and others do not.
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Old 06-15-2012, 06:19 PM #7
paula_w paula_w is offline
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Default when is a scam a scam?

Quote:
Originally Posted by lurkingforacure View Post
Count us as another "no", I wish it had worked but it didn't. Plus, insurance wouldn't cover it (can't blame them, if it doesn't help!) and it was darn pricey.

Sorry, we, too, were really optimistic on this. Having said that, I read where it did help some folks, I just don't know why some benefit and others do not.
I think we need to define scam very specifically and possibly change some policy. If this already exists, it's not working. Since it's difficult to capture enough peoples' experience, the definition needs to be in the developer's language.

Is a small 'scam' defined by how many people SAY it works when it doesn't? But they think it does and actually improve. Even big trials make false claims and have hurt those who get the placebo.

The Cere 120 trial is getting results and the CEO told me that it really works for some people. This is as good as it gets. The Ceregene Co. has "done the right thing" by following up and finding new positive results at 18 months. They went back to work on it because patient participants were simply followed monitered and data continued. Unbelievably, the GDNF trial didn't follow up on the patients when the patient participants were all claiming great growth. even calling it a cure.This was too expensive a delivery system and had to be refilled every month[?]; week [?] not sure.

I think the old saying is still true. If it sounds too good to be true, it likely is. we'd all have heard about it ....some suppliments seem to help - like curcumin and coconut oil. The rest I take if i'm low in a blood test like vitamin D or potassium. I have perfect vitals and blood results - i'm not sure how - but so far so good.

So is it a scam when large companies make BIG promises and drill holes in your head for nothing, then basically lie about whether you have med or not? These are the trials that the FDA approves.

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