I was formally diagnosed in 2011. Shortly after this occurred, because*I have a 40 year background in natural medicine, and also because I was unable to tolerate Sinemet,*I started to try various natural protocols that had been shown to be effective for some people with*Parkinson's. One of the first approaches*I tried was Mucuna. Within a month, I dropped this approach because it seemed to be doing nothing for me. Little did I*know that it would not be many years before I found out*that virtually all the*Mucuna supplements in the states contained no more than 15-18% L-Dopa. This information made it easier to understand why*I had experienced no success with it.
In 2016,*I was contacted by a friend with Parkinson's*who lives in Europe and had been taking*Mucuna extract that was*98 - 99% L-Dopa.*
Roughly 3.5 years ago,*I became so dysfunctional due to*the symptoms of Parkinson's that*I became bedridden for 2.5 years and 100% dependent on my wife for all daily activities. I took*Mucuna extract at the 2.5 year point of being stuck in bed and in less than a week,*I was out of bed and 98% independent.
I will say that again...
In less than a week,*I was out of bed and 98% independent.

I started with 250 milligrams 4 x/day. Now, 1*year*later,*I take between 800 -1,000 milligrams 5x/day and have been using that dosage for approximately 6 months. Because Mucuna obviously contains no carbidopa, I have found that ingesting a small amount of crystalized ginger with each dose prevents nausea for me.
Here's my concern...
There is much information online that states that long term use of*Mucuna is safe. However, it is clear that the substance used in all of that exploration was the whole herb.*I have not been able to find any information regarding long term use of*Mucuna EXTRACT.*
* * ANY HELP WITH THIS EXPLORATION WOULD BE DEEPLY APPRECIATED!

This month*I am starting a kind of an "alchemical" experiment.*I have placed one pound of*Mucuna whole herb from Banyan Botanicals into a gallon jar and* have filled it with the highest quality Vodka*I could find here.*I am not able to get grain alcohol where*I live.*I have placed the jar in a dark cupboard and am shaking it vigorously each day. After roughly three weeks,*I will add one dropper of the*Mucuna whole herb "tonic" to the*Mucuna extract each time*I take it.

Dear Karunapod,

Your story is remarkable!! WOW from rags to riches in a week!!! my heartiest of hugs and congratulations as I am doing a happy dance for you!! Your willingness to experiment and listen to your own dictates have rewarded you well!

I too tried mucuna early on in the early stage of seeking medication for relief (16 years after resting internal tremor was triggered externally -12 years after neuro dx ) - I tried it with and without (pure) carbidopa - both initially with little seemingly beneficial result rather I felt nausea and my body just didn't seem to like it....(nausea also the limiting factor to mucuna tolerance now 6 years into taking it) . So then I went to low doses of sinemet only.
Also, like you, several years later I tried mucuna again with improved response (though mine was MUCH more gradual) over sinemet alone. But, since then to now I have been taking mucuna with sinemet rather than pure carbidopa...which is interesting because now after reading your post I'm wondering if its the levadopa in the sinemet or the carbidopa that catalyzes the mucuna I take (some need medicine and food in its denatured state).... Unlike you (have you tried reducing your dose?) my body responds well to low (150mg total LD 6X/day) doses of LD (from both sinemet and mucuna) and my progression has been very slow (stiffness and anemia since age 5 tremor + many other idiopathic pd sx since age 36 now 60) with many ups and downs .

I think I have likely been predisposed to parkinsonism the time my mother ingested Diethyl stiburol to keep me from miscarrying at 6 months gestation in her womb...and a combination of exposures to various elements and drugs and relational habits,trauma perhaps even prebirth contracts.... have all conspired together (along with genetics) to bring me to this singular present dilemma - very gradually. I am curious about what you suspect are the roots of your pd sx.

So I think the MJFF is gathering data because I think they have figured out that a way out is through...what I'm not certain of though is if they will make their findings of common identifiable patterns available and valuable to the poorest among us. Our information is valuable.

Anyway, I have also observed many of the symptoms I have developed are/were cyclic. It has been a huge attempt in experimenting with various healing approaches all of which have brought me to where I am now
I tried Banyan Botanical mucuna with no response...but I do respond to Source Natural and Raw Food World sourced mucuna (20% LD)extract. I have often wondered if accompanying enzymes and amino acids in mucuna make it a superior source of medicine for some of us..denatured verses "natural" could be an interesting topic for discussion for those willing to keep an open mind and not rush to common assumptions and prejudices (from both sides).

I have observed several in this forum (one a highly respected chemist- Ron Hutton) who improved through time takiing less instead of more LD. Seems to me sometimes I need more...but am always on the watch for opportunities to reduce which may seem counterintuitive to the common belief that more is better...yet sometimes...it is! (until the stomach has reached tolerance)

It can be a very solitary journey.....

Kind Regards,
MD

moondaughter...
thank you so much for your reply.
could you please email me at:
**

You mentioned something in your posting not directly related to Parkinson's
that I would very much like to respond to.

thanks again.

kind regards,
Michael

Michael,your email address didn't come through but w e can private message through this forum....