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-   -   You must be kidding me ??? (https://www.neurotalk.org/parkinson-s-disease/172141-kidding.html)

Diego24 06-25-2012 05:40 AM

You must be kidding me ???
 
GM1 ganglioside
http://en.wikiversity.org/wiki/PD_Neuroprotection/GM1

So if I am right they knew about this in 1995. In 2005-2006 they started clinical trials on 26 patients, for a period of 5 years. People had less symptoms after 5 years than at the beginning of the trial. So why the hell aren't people getting treated with this ? Why do I find on the website MJFox foundation that they are still doing preclinical tests on this ? Really ... can someone explain this to me ?

And how can something that was discovered in 1995 still not have been completely determined as neuroprotective or not ?

lurkingforacure 06-25-2012 08:14 AM

ah, welcome to the world of "research"
 
Quote:

Originally Posted by Diego24 (Post 891599)
GM1 ganglioside
http://en.wikiversity.org/wiki/PD_Neuroprotection/GM1

So if I am right they knew about this in 1995. In 2005-2006 they started clinical trials on 26 patients, for a period of 5 years. People had less symptoms after 5 years than at the beginning of the trial. So why the hell aren't people getting treated with this ? Why do I find on the website MJFox foundation that they are still doing preclinical tests on this ? Really ... can someone explain this to me ?

And how can something that was discovered in 1995 still not have been completely determined as neuroprotective or not ?

First, thanks for sharing this. There are many things we have all read, learned, shared, that sound so promising but have been shelved for unknown reasons. I know you don't like conspiracy theories, and I'm normally not in that camp, but one does wonder why, particularly when it seems to happen over and over and over and...

Diego24 06-25-2012 11:09 AM

The more I read about this, the more I can't believe it. Have a look at this:

http://www.ncbi.nlm.nih.gov/pubmed/12218255 --> succesfully tested on 5 Alheimer patients in 2002.

When tested on mice with Huntington disease scientist couldn't believe what they were seeing:
http://www.sciencedaily.com/releases...0213154100.htm

They think it even helps cognitive problems; which is not a surprise given that in 2002 it was already shown that it considerably helped Alzheimer patients.

"Dr. Sipione, for the first time, has demonstrated that, in a Huntington disease laboratory model, the treatment reverts the lab model back to normal, not just slightly better.

GerryW 06-25-2012 11:43 AM

Explanation?
 
Quote:

Originally Posted by Diego24 (Post 891667)
The more I read about this, the more I can't believe it. Have a look at this:

http://www.ncbi.nlm.nih.gov/pubmed/12218255 --> succesfully tested on 5 Alheimer patients in 2002.

When tested on mice with Huntington disease scientist couldn't believe what they were seeing:
http://www.sciencedaily.com/releases...0213154100.htm

They think it even helps cognitive problems; which is not a surprise given that in 2002 it was already shown that it considerably helped Alzheimer patients.

"Dr. Sipione, for the first time, has demonstrated that, in a Huntington disease laboratory model, the treatment reverts the lab model back to normal, not just slightly better.

It's possible that they are trying to develop a patent-able drug to test, one that doesn't take a continuous injection for a year.

Diego24 06-25-2012 12:12 PM

No, I already found out what is the problem with it: http://cdn.intechopen.com/pdfs/19808...ve_disease.pdf

Some people developed Guillain-Barre syndrome. So they are looking now for other derivatives that don't cause these problems.

pegleg 06-25-2012 10:19 PM

MAJOR adverse event
 
quoting Diego:
Some people developed Guillain-Barre syndrome. So they are looking now for other derivatives that don't cause these problems.

Ph my! You dont want to go there! My cousin developed GB syndrome like overnight. Just woke up one morning and couldn't move or breathe on his own. He's been in and out of the hospital and in a LRC facility for over a year. This is why they dropped this study like a hot potato!

Peggy

Diego24 06-26-2012 04:54 AM

Quote:

Originally Posted by pegleg (Post 891842)
quoting Diego:
Some people developed Guillain-Barre syndrome. So they are looking now for other derivatives that don't cause these problems.

Ph my! You dont want to go there! My cousin developed GB syndrome like overnight. Just woke up one morning and couldn't move or breathe on his own. He's been in and out of the hospital and in a LRC facility for over a year. This is why they dropped this study like a hot potato!

Peggy

But I also heard that majority of people didn't develop this syndrome. Isn't it possible to test in vitro whether someone's immune system will attack GM1 and is vulnerable to developing the syndrome ? If so, you don't give them GM1. But if not, you can give the person GM1.

Larry Holler 03-20-2013 01:51 PM

GM1 and Guillain-Barre syndrome
 
Some people developed Guillain-Barre syndrome. So they are looking now for other derivatives that don't cause these problems.[/QUOTE]

Actually, GM1 ganglioside is a very poor antigen and in GB syndrome, the auto-antibodies to GM1 are formed by exposure to GM1 mimics on various bacteria and viruses. The most common cause is C. jejuni.
Larry Holler DVM, PhD *edit*

Larry Holler 03-20-2013 02:27 PM

GM1 Ganglioside and Parkinson's
 
I will try to shed a little light on this topic as I have had about 20 years of experience dealing with GM1 ganglioside. The reason all of this work has basically stall out is that their is currently no source of GM1 ganglioside for therapeutic use. The referenced work was done with bovine (cow) GM1 produced from materials collected at slaughter plants, and sponsored by a company called Fidia. When Mad Cow disease came along, and unknown bovine source material was banned for use in GM1 production, Fidia basically got out of the business. All of Dr. Schneider's work was done with the bovine source material that is no longer available. There is no synthetic source for GM1 and attempts at semi-synthetic have not resulted in quantities suitable for phamaceutical use. We have worked for the past 20 years to develope a source verified (you know the history of the individual animal) of raw material for GM1 production. We use a sheep source that have a genetic condition that results in storage of large quantities of GM1 in tissues, especially the brain. Tissues are harvested at slaughter and our GM1 ganglioside is manufacture for research use by Avanti Polar Lipids. We have the ability to scale this production system to treat Parkinson's patients as well as Huntington's disease patients, ie grow more sheep. Unfortunately, we continue to run into road blocks and people and companies that apparently are more interested in quick profits or protecting there turf than they are in treating people. We continue to search for a pharma partner to get this source of GM1 to the market. Fidia used GM1 in a number of clinical trials besides the Parkinson's trial so the safety is well established. Hopefully we will have a breakthrough soon. *edit* Larry Holler DVM, PhD


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