Good morning. I have jumped on the mucuna bandwagon, and don't want to say too much about my experience yet, until at least a few days go by, but so far....

My question is this: from my recent research, am I to understand that this is a substance that has been in use for this condition for 4,000 years-plus, has been clearly shown by clinical studies with standard rigorous parameters in at least India and the UK to be not only clearly at least as effective as Sinemet, but possibly two or three times as effective, with fewer side effects, and possible long-term benefits unattainable with other substances...

and further that it is a substance approved by the FDA but just 'not available in pharmacies' (but it is readily available even at my corner Vitamin Shoppe for about $30 for two or more months supply)...

meaning that my doctor will not lose his license in suggesting it, but that the only reason that I haven't heard anything about it from the medical establishment (and they say they havent heard of it when asked) is that they are not being paid by a pharmaceutical company to tell us about it?

People, am I getting this right? Is there some piece of this that I am missing?

If I am right, then I am stunned beyond belief. It means that our doctors are not really healers, are not really interested in what could help us, and further that the old chestnut we always hear "Well, if it worked, we would all hear about it) is really crapola....AND consequently it also means there are many possibilities out there, and the information we've been getting at the doctor's office has been woefully and almost willfully incomplete at best, and deliberately biased at worst, and basically to me does a lot to undermine the credibility of the body of medical knowledge that we rely on.

If some think this is too extreme a point of view, I would love to hear your comments, because I woke up in shock this morning thinking about all this.

and welcome abord the Bean Bandwagon - toot, toot! I've taken mucuna with and without Sinemet for about 3+ years now.

The first neuro I questioned about mucuna frowned, wrinkled her nose and asked me why I would take a dirty herb rather then the chemically "pure" L-Dopa - Sinemet. I haven't been back to her..but incidentally, her father - long gone - was the small town Doc here and I remember taking a friend to him to get a finger stitched up and choking on the cigarette smoke in his office where he sat amidst the empty Coke bottles... Something wrong with those pictures!

Before starting on PD drugs, I had a consultation with a (fledgeling) Ayurvedic practitioner who included Mucuna powder in his treatment for me. I was to sprinkle it on my rice. Yucky as it was,, I did so until it was gone - with no apparant benefit. By this time I could barely walk and determined it was time for Sinemet - or else! That, plus EECP - (another story - please google EECP & PD) got me on my feet and functioning pretty well.

Over the next 3 years, I gradually reduced the Sinemet, replacing it with mucuna, until I was taking just mucuna - with a llittle Lodosyn for the Carbidopa I thought might be needed. I was doing so well then - I actually felt I was recovering! Alas, came some mysterious overnight something that turned me around and sent me sliding down the slippery slope we know so well. To date haven't been able to stop the decline despite this and that.

Since then I've seen 3-4 neuros, none of whom knew anything about Mucuna. In fact I think they ALL became uncomfortable when I brought it up and just wanted to turn to something else. Sigh. The last Doc was a gal from India so I went in quite hopeful that she would know SOMETHIING! Ha! Same old same old. I left her office with a cute little desiner bag of Mirapex - and her warning that if I didn't comply with her directives, she would not see me again. I tried the Mirapex (for my son, really, who is getting desparate to see me improve so he doesn't have to take care of me) - but I absolutely hated it and quit after about 3+ weeks. Adios Doc! AND many thanks to you Fiona and the others who were recently posting about the horrors of Mirapex. That made it easy for me to can that partiicular poison. My, my I'm rambling.......

Isn't it true that (most) MDs know what they know from med school? And also that the curiculae are determined in large part by big pharma? Isn't it a fabulous partnership! For them, anyway! They teach the Docs to sell their pills and everyone's happy and rich - except us.

There's no $ in beans...tho' with food costs soaring, we'd best learn to grow our own - if we are able. The problems w/ Mucuna are lack of info, lack of standardization of L-Dopa content and sometimes, availability -- like when we talk about it and there's a run on it. Also,it's a bit of a chore to prepare doses and take 'em...can be messy. I weigh my doses, add a big pinch of ginger and mix w/ a little water. AND, even tho' it's just a bean, I treat it like a drug - hence the measuring. Dosing is individual and subject to change -- like any PD meds. Still, it remains my choice.

Pardon my long windedness....hope there's SOME help in my babble.

Ibby

The players that I see are Big Pharma, the Insurance Giants, the docs, the researchers and teachers in Academia, the FDA, and us. BP and the Insurance Giants own the FDA. The docs once were part of the Club, or so they thought. Then managed care and drug advertising made it clear that, as George Carlin says in his special way, "...and you're not in it!!!"

Unfortunately, the docs are trapped by their egos and the legal risks. And truthfully, I can't blame them. I mean, if I had put in 20+ years in school and one of us came in waving printouts and talking about magic beans, I don't know how I would feel. Especially knowing that if I listened then my license to practice could be history.

Somewhere in the 1950s, medicine changed from healing to being a lucrative business. There was mentioned the old doc sitting in his smoky office surrounded by empty Coke bottles. Then there was the hotshot doc who told her patient "My way or the highway!" Forced to choose, I'd pull up a chair and ask if he had another Coke. :-)

Someday things will be different, but for now we are on our own. We inhabit a shadow world of health food stores and strange practitioners. Luckily, we can share experiences and that gives us a great advantage. But we are definitely on our own.

Yeah, Rick, I know what you mean about all this stuff...I just never wanted to think that my cynicism was so justified....

But about the doctors studying for 20+ years - I'm sorry, the paradigms have drastically changed even in the last 10 about what the brain is capable of. Anyone that isn't capable or willing to keep up either with the latest technological news or scientific discoveries is not really relevant at this point. AND if a doctor has chosen to work with a population who are desparate, and he/she sees that constantly in the faces of their patients, well, I would think they would love to hear about something that might be helpful...but I understand they can't chase every new whacky idea or get the expertise necessary to pursue these notions either. God bless my doctor, he's taken to lovingly rolling his eyes every time I see him, and says "here come the folders..." as I take out my latest print-outs and say, doctor, what about this..." And he tells me, "as your doctor, I can't advise it because I don't know about it. But if I were you, I would so be trying it...." SO I'm not really complaining about the heart of my nice doctor...But I really think that a good doctor ought to care more about the suffering of his/her patients than the affront to his/her knowledge - isn't that what being a scientist is, let alone a healer?

And in the case of something like mucuna, where it's a standard medication in some countries, and the studies have been done, and the FDA has approved it - they're not going to lose their licenses are they? Mine has no problem recommending CoQ10 or creatine..... ANd the basic info about mucuna on the National Parkinson's Foundation site states clearly that it may be a strong alternative to standard l-dopa treatment - well, they ought to at least have heard of it AND be at least somewhat curious about it. I mean I know there's a lot of feeling out there about we're not interested unless it's a cure, OR do we really need another dopamine agonist...but this is not really in that class...

But this really makes me dismiss that whole thing about "If something works or helps, we would all know about it." No. Not. So that means there may be a lot of things that can help - and maybe not overnight cures, but over the course of time, helping support a way of life that is not only bearable, but ultimately leads towards gradual remission, healing, resolution, reconcilement of the body's twisted poetry... Squeak, squeak!!!!!

The movement disorder specialist at my health plan had never heard of mucuna. I told her about it and she gave me her blessing to take it. No kidding. Just because it was 'natural'.

She did not want me to try Sinemet, even to see if it helped; she said it was a serious drug and she wasn't prepared to let me have it. She stuck with artane (trihexyphenidyl) and baclofen.

But as for mucuna, she said to go for it. She had suggested on her own fava beans as a natural source. No kidding. Eat large amounts of beans instead of taking a pill. Sorry, I don't need the gas. So I told her about mucuna. She was clueless.

Amazing. I told her it was used in Ayrevedic medicine. So she told me it was okay to take a natural drug even though she'd never heard of it.
One of the many reasons I never saw her again. (I have a referrel for a new MDS.)

I have the opposite problem. On one of my early visits I took a list of the various supplements I was taking. My doc (neuro /internist) refused to even look at it. I think my GP has the right attitude. When discussing eradication of H pylori in a PWP, he early on made it clear that he knew that I knew more on it than he did and that he would let me call the shots. I could have hugged him!

Yeah, my neuro is the same. He told me he should be paying me to give him information...one time he had medical students observing my exam, and told them "but basically this one just does what she wants!" Then he waved his arms in the air and said "just try to get me an email if you make a big change ok?" I love him, so my complaints are not about him personally at all, but about the whole kit and caboodle (is that still a figure of speech?) of the pharma-medico industrial complex thing.....