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wirky

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:-D
About the research which has been nicknamed "brain cleaner".

Maybe I have posted my earlier posts in the wrong category and as new member, have only now noticed this “research news” category.

Here is all that I have learned so far in the past 3 weeks:

This work is aiming to create conditions in the body that would cause “Pyruvate” a simple and cheap product available over the counter, under the right conditions and with the patented technology, to act as a “Glutamate scavenger”, i.e. Something that our body may anyway be doing but on a very small scale. Too small a scale for what PALS need.

We all know very well that drugs like Relutek / Riluzole are designed to help us by temporarily blocking the glutamate's toxic action with the drugs inside the brain. In contrast, “Brain cleaner” = “Glutamate scavenger” is intended to clear the chemical away from the brain back and through the blood, where it can't do harm anymore."
Anyone reading Aall the info that is available on the internet regarding on the “Brain cleaner” = “Glutamate scavenger” you could be made to feel very confident with its forthcoming realization into our arsenal in our fight against ALS and other neurological damage. This is because it is reported that “This method may soon be entering clinical Human” Sounds great !
In reading the news flashes on the net one would also read that “The US FDA has assured the company of a fast track to approval”. This is true and sounds real and great – some real hope for us all, right?

Please be aware that unless we all the PALS community act in our own interest, research like this one will never see the light of day, despite its potential and the great promise that it shows.

Unfortunately, once again politics and probably more so profits$$$$ ( or lack of) are standing in the way of this work progressing further.

Let me explain, It turns out that the glutamate scavenging patented technology is so brilliant, that it uses a simple and cheap ingredient that is and readily available over the counter.
So you may ask, what’s the problem?

It follows that the human trails may show that because the ingredient ( if I can call it this) is so cheap that it may not return mega profits in the usual manner as may be generally expected in by BIG PHARMA, and Big Pharma will not invest at this time.

So as it stands now the researchers are stuck waiting for funds to support the first human trail. A simple and harmless trial with big promise.

Can any one think of a better place then this for the ALS association to direct extra attention which will allow some flow of funds?

Al, you have accumulated so much knowledge and experience in this arena, please give me your opinion in regard to what power of influence our community and association may have to aid with what seems to be something so promising.

http://www.eurekalert.org/pub_releases/2007-01/acft-bc011707.php
http://www.neuroskills.com/pr-cleaner.shtml
http://www.innovations-report.com/html/reports/life_sciences/report-77237.html
and another member
fairborn, oh US
Join Date: 2008
has posted:
The study is published in a peer-reviewed journal. Here is the citation:
Zlotnik et al. Brain neuroprotection by scavenging blood glutamate. Experimental Neurology. 203(1): 213 - 220, 2007.
 
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Geo

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Wirky Have you tried it (Pyruvate ) ? $18.00 at GNC .You seem to be really concerned on this ,i would think you would have tried it ? Geo
 

ZenArcher

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A few points/questions:

The links you provide are all to the same press release on different sites.

The abstract you refer to is about closed head injury and makes no reference to motor neurons.

What is the patent information on this technology they claim enhances pyruvate and what are the "right conditions"?

There is a lot of hoopla there with no real substance. They haven't even done any tests in SOD1 mice for efficacy. There is no information related to ALS. Pyruvate has been touted as a weight loss supplement for years and an ineffective one at that. With only the evidence submitted thus far I wouldn't even spend the $18 at GNC.
 

Al

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I'm inclined to agree with Jeff. I'm not ready to jump on their bandwagon yet. Let's see some real studies. I would think if it had merit the larger research centerss would be looking it.
AL.
 

wirky

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:-DG’day

I am very fond and have on many occasions I have borrowed from you Jeff, your saying “The quieter you become, the more you are able to hear.”
I think you Jeff need to revisit it from time to time, and this may be one of those occasions.

Please read carefully what follows in the spirit in which it has been intended and written, i.e. from PALS for PALS and in the best interest of PALS.
Jeff, I am disappointed with your comment because it sounds like it is coming from someone with no hope. However this is not how imagined you and I am sure this is not the way you meant it.

Please do not loose hope!
It is possible to beat this but uninformed comments like yours can unintentionally derail possible potential by distracting support for something that may prove to be the tip of the iceberg in the understanding of “damage control” in the brains of PALS.
Let me explain;

I am on your side (I think), but we can only be on the same side if you are genuinely interested in making a positive difference in the stagnating progress of real therapies. Jeff, the alternative is waiting for someone else, a non PAL to find part or token therapies for profit only. I have been around long enough to know that this could take for ever.
Let me explain;

Yes, if one wanted to only be “hooplaish” as you are, one would be correct if one chose to only say that Pyruvate is the same “pyruvate” as what is used by body builders. And yes this would explain why one would choose to use such a word as “hoopla” in the context of such credible data coming out of some of the worlds most respected institution such as ;
(1) Division of Anesthesiology and Critical Care, Soroka Medical Center, Ben-Gurion University of the Negev, Beer-Sheva, Israel
(2) Department of Radiology, Soroka Medical Center, Ben-Gurion University of the Negev, Beer-Sheva, Israel
(3) Department of Neurobiology, Weizmann Institute of Science, Rehovot, 76100, Israel

See;
http://www.springerlink.com/content/66h836644673vw69/

I would like to suggest that one would be more productive, particularly for the benefit of all other PALS if one would do his homework and thus arm oneself with becoming better informed, before saying “hoopla”.
Being informed would empower one self so one could ALSO say that it is the Pyruvate which is the stabilized form of pyruvic acid and naturally occurs in the body.

If, before comenting with hoopla, one would do the homework or possibly even ask for more info, then oneself would not sound like “hoopla” when one says “hoopla”.

Saying hoopla without doing the research is NOT in anyway practicing what you preach “The quieter you become, the more you are able to hear.”

Jeff and Ruskin, with jus a bit of research on the internet one could discover that the research regarding Pyruvate and “Glutamate Scavenging” is not about just consuming pyruvate like body builders. It is the about the “Glutamate scavenging” activity that can be promoted by using the discussed patented technique / drug.

I thing you both missed the essence of the information that I posted. And for you to think that just pyruvate or any other product can in itself be a magic bullet is very much unrealistic.

The bottom line is that if we discover some research that has potential to benefit PALS, we should first be grateful and we should promote and lobby for it to be pursued further

This so called Pyruvate research is of such a kind of research and ignoring or overlooking it or even letting it be delayed may be to our own detriment

stay tuned ........

wirky
 

Al

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Not sure if I like the tone of this but have 35 familly here so approvval for today. Tomorrow may be different.
AL.
 

ZenArcher

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Please don't make assumptions on my state of mind. Just because my belief doesn't fall inline with yours concerning something that has been shown in one test in an unrelated injury type to show glutamate scavenging which may or may not play a role in ALS does not mean I am without hope.

In your first post you want PALS to push for funding of pyruvate for treatment of ALS because again in a single study they have shown glutamate scavenging in closed head injuries in rats. That's wonderful, now show me a study on the SOD1 mouse or show me how this relates to ALS. I have absolutely no problem advocating for something even if its off the wall that will even slow the progression of ALS. What I do have a problem with is jumping the gun and wasting money and time on unfounded, unproven and unrelated drugs, supplements or procedures.

Apocynin which is a derivative of a plant called picrorhiza kurroa is actually showing promise in testing right now. Whether it is statistically significant or not isn't known yet. Lithium according to a published study showed statistically significant ability to slow ALS. That study has since been called into question and may be proved wrong but the ALS community as a whole took the chance. What proof besides that one study does pyruvate offer? What if any studies related to ALS have been done or are in progress? Why should the ALS community endorse this weight loss supplement suddenly turned glutamate scavenger by some "patented technology" and the "right conditions" instead of lithium or apocynin which have studies with ALS to support them?

Am I saying that pyruvate is worthless? No. I'm saying that based on the evidence to date it has less credibility than many other things out there. It has little evidence and that evidence related to a glutamate which is only one of several possible pathways of neuron death in ALS.

As you stated during what I must admit is the most creative use of the word hoopla I have seen in quite some time research is key. Having said that I will add that by supplementing with N-acetyl-cysteine you not only scavenge glutamate but you also provide your body with the necessary precursors to build glutathione which is known to be one of the most powerful antioxidants in the body. NAC is readily available and doesn't not contain any patented technology and can be taken orally.
 

CindyM

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Wirky- I see your concern for solving ALS, since it affects your Mum. Like you, I'd want some answers too. But surely you know that rallying folks to push for more research on this matter will not likely be in time to help our current community of PALS.

I am not saying you shouldn't push for the research, mind you. I am just saying that some of us might not want to jump on that cause today. Doesn't mean you won't find other allies. I just think your energies might be better placed if you continued looking for those other allies, rather than arguing with those of us who want to wait and see what develops.

JMO Cindy
 

Al

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Now why didn't I think of saying that? Good answer Cindy.
AL.
 

CindyM

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:oops: Hey Al! that is high praise from somebody who, IMO, always has a good answer, often with a bit of the comic wit thrown in! Cindy
 

wirky

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:-D:-D:-D:-D

Hi ALL

I have given you some time before I replied, hoping that you will discover for yourselves about the importation and very sad news about all the past work with the SOD 1 mouse and which have now been ………

At no time did I suggest that just taking Pyruvate will cure ALS.
Do not dare to discount some of the most important research work
for ALS that has been done in recent times. Doing such will only make you come back and eat your own words.

I see that you have all missed the real point of the information out there and even trying to bring it to you now is a struggle. I do not understand the resistance particularly when much of my information is suppoted by information on our own ALS TDI web site.

History, I and many like me will always totally dispute comments like the one from JMO Cindy where she states “I just think your energies might be better placed if you continued looking for those other allies, rather than arguing with those of us who want to wait and see what develops.” Cindy this is a very sad position to take.

How many years have PALS been doing just that ( waiting to see what develops) and how much longer are PALS expected to do as you say Cindy “….wait and see what develops”.

Well Cindy, waiting until now has already proven that only nothing has developed in real terms. The facts are that, whatever researchers thought was developing is now no longer ….. See the latest on the SOD 1 mouse studies.

Cindy, my point is that its time to wake up to the reality that just waiting without contributing positively is not in your own best interest.

And you Jeff when you say “ ….show me a study on the SOD1 mouse…”

Don’t you all know the most importation and unhappy new about all the past work with the SOD 1 mouse.

Read it for yourself from the ALS TDI site.
here it is for you>>>>>>>

http://www.als.net/articles/articleDetail.asp?articleID=5316

and also make sure to follow the link that the site provides where it states (CLICK HERE FOR ABSTRACT).

my very best wishes to you.
 

Jennifer51

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Riluzole AND Lithium treatment

Not sure where I read it, may have been through the forum, but I have seen some reports about an italian study where they use Riluzole AND Lithium.. seemingly with good effect, especially with Bulbar onset ALS
Has anyone any experience with using both.
My Neuro is a bit big headed, he is known for being good at diagnosis and terrible at follow up...which I am now finding. He dismisses anything I suggest or say.. He makes it quite clear HE is the doctor and I am only the patient, so I dont know any better. I want to get rid of him if possible....and have not mentioned this combination to him.
Anyway, I have an appointment at an MND/ALS clinic in a couple of weeks, and the neuro is an Italian, lived in England for about 20 years I think. So I am guessing he might be willing to talk about the Italian study and the possibility, if there is any, of me trying it. BUT I like to hear from the end users, so would love to hear any experiences, good or bad, with this way of treatment. So far I have been very pleased with Riluzol as far as it gets me.... Jennifer51
 

Al

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I used both but quit the Lithium because I felt it was speeding up my symptoms. A few people at my clinic found the same thing. If you search Lithium here there are more posts about it.
AL.
 

wirky

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:-D:-D:-D
Dear Al

You say that you used both and gave up on the Lithium, does this mean that you are still on the Relutek ? If yes, it means that like me you also accept the principal of “Glutamate” playing a serious role in ALS .
wirky
 

Al

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Well I'm still alive after 5 years so maybe Rilutek works but who can really say for sure.
AL.
 
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