[Fiona]

Hi folks, posted this already in one thread, but I'm so excited about it, wanted to be sure interested parties got to see this. For us US folks, who haven't heard very much - at least that I know of - about Mucuna from the medical community, this might give us a good leg to stand on about this. The below link is a patent application to develop a product based on mucuna in the US. I know Zandopa (based - as I understand it - on mucuna) already exists, but I don't think many U.S. doctors prescribe it.

I am not sure of the status of this patent. Both the brief and the extended abstract are some of the clearest information I have found about what is known about the neurotoxicity of standard levo-dopa treament, and it's hastening of the disease, and what mucuna apparently offers as an alternative - which is very little toxicity, and actually helping to alleviate already existing dyskinesias and the like, somehow avoiding some of the delivery issues, and all in all offering what seems like a superior method of treatment, both for newly diagnosed and even late-stage PD'ers. The full abstract cites some of the clinical work done already that the application is based on. One of the applicants is Dr. Warren Olanow, who is (or at least was - not sure current status) chief of neurology at Mount Sinai Hospital in New York City.

So as I said, I'm not sure of the status of this patent. But the good news is that mucuna is already readily available in many forms, as has already been
discussed in many threads on this forum. It is FDA approved, available without a prescription, and costs a tiny fraction of what some of the conventional prescriptions cost. However, since it is a very powerful medicine, and will certainly take personal adjustment of whatever existing medication courses we are on -could be very dangerous if those aren't considered - I think those of us interested could use some more input on exactly what we're doing. I personally plan to take this to my doctor and ask him to find out more about it; to me the authorship by such a prestigious doctor as Dr. Olanow indicates that this is a seriously viable alternative and gives me great hope.

http://www.freshpatents.com/Pharmace...0060165822.php

[Howardh]

is not even on anybodies radar screen in these parts. Hopefully clinical trials in the U.S. will enable the product to be available for international use if it proves to be the real deal. Watch yer back as Roche will not want to lose their manopolistic share of the L dopamine market.

[Fiona]

Originally Posted by Howardh

is not even on anybodies radar screen in these parts. Hopefully clinical trials in the U.S. will enable the product to be available for international use if it proves to be the real deal. Watch yer back as Roche will not want to lose their manopolistic share of the L dopamine market.

Howard, thanks for this. I take your reply seriously. Brings up a couple serious questions for me though...first of all, clinical trials have been done in India and the UK, some of which this patent application is based on. Why aren't those considered valid? They have science in the UK and India, no? I guess what you're sayiing is that only the U.S. point of view is accepted, but then if they're working on ProSavin in Europe etc., does that mean that work won't be considered valid either?

Second of all, if you meant for me personally to watch my back, well, thanks for the heads up, and I do take it seriously. But then how is anybody going to actually work for a cure because isn't that going to threaten the Roche market, and isn't that what we hope for implicitly by the word "cure" instead of diddling around with these redundant and ineffective dopamine agonists over and over?

The explanation given in this patent application is beautifully clear and medically pretty convincing. If one believes anything that this good doctor as one of the "inventors" says, why would anyone who truly cared about people suffering with PD want them to continue on something that will ultimately most likely be injurious when there is a safer alternative so readily available?

I have heard the argument about well, we just can't be sure of the quality of the supplier.....hello, Neupro Patch? Vioxx? Permax???? And would they really rather see their patients continue on a neurotoxin rather than do the little bit of legwork it would take to find a reputable supplier of mucuna - I mean the FDA laws apply to food and supplement suppliers as well in terms of quality and truth in labeling standards, so how hard could it be?

Yes, I do think this is big stuff. It challenges for me the credibility of anyone saying that they really care about the welfare of PD patients unless they consider this considerable body of evidence that already exists, and has obviously caught the attention and conviction of one top U.S. specialist. Not to do that would not even be good science, would it? And again it makes me wonder, will there ever be big improvements made or a cure found unless it is enormously financially lucrative to somebody as powerful as Roche?

I for one say it's time that some of us started speaking our voices louder. I know how damn hard it is. But that's what is so great about the internet - now we have access to info so easily that we could perhaps have a greater chance to change our world towards truth and fairness, and for ourselves personally to ease our torment. As an international citizen, I feel responsible to speak up about the truth as best I can try and see it, and if proven wrong, will be glad to accept that, too...So anyone else that's with me, I got yer back, too...

[Howardh]

Fiona great points, it's a little after midnight Monday Morning here, I'll be back tomorrow to share my view. I suspect others will have responded to your questions before I get the opportunity, and that makes for great reading.

[paula_w]

Here's what we have in our database on Mucuna.

http://apexutf.shellprompt.net/pls/a..._PAGE:135%2C15

Fiona - As far as I know, the clinical work done overseas needs to be approved by the FDA like everthing else. Solvay's duodopa did not have sham surgery done outside the U.S. and the FDA will not approve it until they do a trial in the U.S. with placebo.

paula

[reverett123]

One is that the patent is not valid. There was a case (and it may be this very one) where a patent was issued for a botanical treatment and then revoked after a lot of people raised hell. Since a patent is for a NEW invention, the argument was that this use was several millennia old and well known and therefore should never have been granted.

The other is that one sure way to protect the existing interests and to keep mucuna in the shadows would be to patent it and then just sit on it.

[Fiona]

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....

[reverett123]

Fiona is right. There is more to mucuna than anything that I have tried so far. The stuff works very well. I still have concerns but anyone who has no concerns about the official drugs is fooling themselves.

I am not going to urge anyone to try it or not. As sure as I do, I will wake up tomorrow with a liver the size of Amarillo. But the FedEx man delivered five pounds of it yesterday so I will continue to test.

If using the raw powder I do think it is important to toast it (5 min at 325 deg) to knock out some nasty enzymes. Raw beans can be dangerous. And I am taking digestive enzyme capsules as well. And it does tend to block "real" meds due to the high protein content so timing needs work. I find that about 15 g with a 100 mg sinemet cr works well.

[paula_w]

i understand that it is FDA approved - just to clarify- I was referring to the fact that the upcoming trials we are looking at here are in the UK.

paula

[ZucchiniFlower]

Thanks for this thread.

Rick, what digestive enzyme capsules are you taking?

Is Zandopa raw or not? Thanks!