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nishant

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Joined
Jan 24, 2009
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72
Reason
PALS
Diagnosis
09/2007
Country
US
State
WI
City
Madison
I found this today, is the claim for real? I mean all of a sudden a possible treatment?

Snippet:

The inserted Nrf2 gene was only active in support cells called astrocytes, which promote health among the neurons that actually carry nerve signals, Johnson explains. “We have taken this normal function of producing antioxidants and added to it. It’s like putting the astrocytes on steroids.”

Experiments performed on mouse astrocytes and nerve cells in a dish confirmed the source of the protection, Johnson adds. “We can completely reverse the toxicity of the sick astrocytes. The mutated protein that causes ALS is still there, but Nrf2 makes glutathione that completely blocks it.”

Although the mice that Johnson tested carried the inherited form of ALS, most patients do not have an inherited disease. However, Johnson says the mice are still a good testbed for ALS treatments. “The endpoints that we are blocking, including death of neurons and separation of neurons from the muscle, are seen in all forms of ALS; that’s what makes this so exciting. We are not targeting the mutant protein that causes the disease; we are targeting the astrocytes’ mechanism that preserves the neurons. The mutant protein is still in all cells of the spinal cord; we are just over-expressing the Nrf2 gene - causing it to make more glutathione - and that provides the protection.”
 
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Re: Is it real?

We will see if anything comes of this. We are all hoping!
 
Re: Is it real?

That's interesting because we have been seeing this holistic oriented MD and he has been pushing me to try IV glutathione infusions. His office is an hour away though, plus an hour or so for the infusion, and it would be 3x/week of giving up 3 hours, so I have been reluctant. Now this study says that making the astrocytes create more glutathione is really helpful. Makes you wonder.

Okay, I found another article which has more information:

{outdated link}

The problem is the blood-brain barrier. What gets into your blood doesn't necessarily get into your neural tissues.

"It's extremely difficult to increase glutathione in the central nervous system," Johnson says. "You can't just shoot it into people or animals. But we found a 25 percent increase in the molecule in the spinal cords."

Problem is, that's what this doctor wants to do, just shoot it into me. Doesn't sound like that works, you need to engineer the cells to make it themselves. That's probably a long way off from something they can do in people.
 
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Re: Is it real?

It is interesting they are recognizing glutathione. I did my own IV's for 2 years. I can tell you, from personal experience, that you have to do it 6 days a week and take 1400 mg per day or you will be wasting your time.
 
Re: Is it real?

Joel, Did you find these IV infusions helpful?THX,Erica
 
Re: Is it real?

While I was doing, what I said above, my progression stopped. True story.
 
Re: Is it real?

joel, why did you stop, may i ask?
 
Re: Is it real?

Long story! It was a combination of moving and a bunch of other factors. I did try to get my wife to do it but she refused. So here I am with a PEG, Trache & vent and living in a powerchair. Am I sorry I could not continue? Yes! Enough said.
 
Re: Is it real?

Joel, your progression stopped for two years? Seems to me this should be something that people should know about. If you don't mind my asking, what did your neuro say about the treatment and those remarkable results? Have you known other PALS who tried this too?

Hal: Is that doctor 1 hour north of you, or one hour south?
 
Re: Is it real?

My neuro did not know what to say. He just explained it away as something he could not answer.
 
Re: Is it real?

Thanks, Joel. I hate when that happens. I'm still getting the comment, "that's odd," and a shrug when I mention double vision, so I stopped mentioning it.
 
Re: Is it real?

how can they be claiming to have a treatment when this hasn't even reached clinical trials? how can they be so sure when this science is so new? also, there are articles about this dating back almost a year ago - where's the progress? why isn't this on the front page of every reputable news paper in the world right now?
I don't know... pretty skeptical over here.
 
Re: Is it real?

just like science has found a certain gene but, it won't help at the moment just like they found a gene that cause's people to be fat or, the gene that causes down syndome , it's a clue they hope will provide an answer but, not yet after yrs of finding these gene's except they make the new's and i beleive it's only on new's because a lot more people have those problem's . and the fact it say it's not a cure but, a blocking of a chemical production that gives health to the nuron's but that als is still there but, blocking is a good thing
 
Joel...

Just curious... were you also on Rilutek when taking your glutathione?

Brian
 
No, I have never taken Rilutek.
 
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