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Old 05-11-2008, 01:06 PM
Fiona Fiona is offline
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Join Date: Oct 2006
Posts: 492
15 yr Member
Fiona Fiona is offline
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Join Date: Oct 2006
Posts: 492
15 yr Member
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thanks, Paula, for that info...very helpful and informative for me, a newbie at reading abstracts and trial data and patent info, etc. However, I would like to point out that this is already approved by the FDA, not as a Parkinson's drug to be sure, but just 'not available in pharmacies.' So it's not illegal. And none of my doctors ever had a problem with recommending the very expensive but non-prescription supplement CoQ10, before any clinical trial was completed (and now that some really definitive work has been reported by Dr. Snow last week turns out it's probably not effective in directly addressing the symptoms of PD).

The difference is that using mucuna would require one on medication most likely to adjust their dosage - so that's why I say we really need help and more information. But we would if we took a lot of certain vitamins, or went on an all fava-bean diet, or what have you. I just don't understand why if something has been somewhat credibly reported as possibly being even just effective in "preventing or alleviating dyskinesias" alone - which are one of the biggest problems in the ultimate results of conventional levodopa therapy - that aspect alone - I don't get it why people aren't rushing this through trials and giving it some kind of attention.

Now I also don't get it why Zandopa is legal for people to obtain here and take on their own if they want to, and why nobody in the US is officially interested in it. (My honest opinion is the problem is just racism really that makes people dismiss it...but that's another topic...)

And, Rick, thank you...I did consider whether that was perhaps the actual thinking behind the patent application - keeping it quiet so that mucuna would not be tainted by the corruption and greed that is consuming our society ever more pointedly. And in that scenario, those who feel best about getting their info and treatment from a guy in a white coat who gets paid to give them info from the Pharms, well god bless 'em, I don't begrudge a second of the health they receive from it. It's hard not to be that way, me included.... But those of us who have begun to work in the more shadowy, 'experimental' patient modus operandi (and as someone who has been on Vioxx, Permax, and the Neupro Patch - don't say too much to me about experimental, because we're all white rats to some extent - squeak!) will get our info independently, use our best instincts and quietly heal ourselves as much as we can, and everybody will ultimately get what they deserve, I am sure...

But having read so many posts on this board and others, talked to so many friends with PD, gone thru my own experience, and seen over and over the despair, the broken finances, bodies, hearts, marriages, lives, the continual contemplations of suicide associated with this disease, I cannot in good conscience not at least try to speak up about an avenue that seems, while not a cure, could make a huge difference to many people. I just can't not say something in the hopes that somehow it would help some to feel comfortable with this enough to possibly bring them great relief and benefit. How could I not? So come for me, Roche, I'm you're huckleberry!

I say all this on the basis of my personal experience with mucuna over the past scant month's time, during which I have been astonished by the improvement and change in my physical condition, the amount of medication and toxic feeling I have reduced. This is a whole different animal of treatment. After all my gab, won't bore you with personal history, but anyone interested can pm or email me and I'll provide the tedious yet thrilling details. But this is why I was so pleased to find such a clear and strong evidentiary base of knowledge about mucuna as represented in this patent abstract.

All that said, Rick, perhaps you're right, the shadows are best, considering how precious this resource is and how screwed up it could be if it gets into the greed mill too far....But I have tried at least, and I will think deeply before I shoot my mouth off more.. Thanks everyone for your responses....
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"Thanks for this!" says:
lou_lou (05-11-2008)