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-   -   Another mucuna question (https://www.neurotalk.org/parkinson-s-disease/235142-mucuna-question.html)

schwad01 04-24-2016 08:35 AM

Another mucuna question
 
To be honest i've read the threads on mucuna and I'm definitely still confused about "dose"--to be specific--I take Stalevo 100/25 6x/day---I bought the Solaray product (333 mg per capsule) and the Banyan mucuna powder will arrive in 2 days--I would to try this but dont want to drastically underdose and, more importantly, don't want to overdose--does anyone have a suggestion on how i could try the capsule --and when the powder comes--where I might start in terms of dosing and interaction with Stalevo-- I realize this is not a straightforward question! but I would greatly appreciate any help

moondaughter 04-24-2016 10:41 AM

your interest will guide you
 
Quote:

Originally Posted by schwad01 (Post 1209082)
To be honest i've read the threads on mucuna and I'm definitely still confused about "dose"--to be specific--I take Stalevo 100/25 6x/day---I bought the Solaray product (333 mg per capsule) and the Banyan mucuna powder will arrive in 2 days--I would to try this but dont want to drastically underdose and, more importantly, don't want to overdose--does anyone have a suggestion on how i could try the capsule --and when the powder comes--where I might start in terms of dosing and interaction with Stalevo-- I realize this is not a straightforward question! but I would greatly appreciate any help

Seems med experimentation is an exercise in alchemy....and a personal one. Mucuna powder has yielded miraculous results for me when i was hitting a point of no return (taking more with less effect) with sinemet alone ...and mucuna feels better than sinemet to me so I heartily recommend a sincere inquiry to you .. My med journey started with sinemet- started low but then my med pattern has followed a bell curve and after 6 years of taking medication (just started mucuna this past year) I now take much less sinemet than what I had been taking. I've found that combining 1/4 tsp. ashwaganda powder with 1/2 tsp. mucuna powder and 1/2 tabet of 10/100 carbidopa-levadopa 3 to 4 times perday works well for me. years aago I tried mucuna with no success and at one time was taking 6 pills 25/100 sinemet per day but was able to back off of that with adjunct therapies and the knowledge that more is not always better.
my mucuna powder is 20% levadopa and very carefully monitored for purity. Dyskinesia is much much less now with mucuna powder and I suspect it contains a natural compliment of enzymes that assist uptake..a book you might find of interest is "Mucuna versus Parkinson" by Dr. Rafael Gonzalez Maldonado (also on facebook) though he reccomends consulting with neuros famaliar with mucuna (think he does phone consults)'
to my mind the lower the dose the better though finding the therapeutic window takes trial and error , a lot of patience and inquiry and perhaps a little luck....for me I feel ashwaganda made a difference. oh yeah and one more thing...I've discovered that heating the water used to dissolve the mucuna and ashwaganda powder helps too-goes easier on my stomach...

Kind regards
MD

schwad01 04-24-2016 11:14 AM

thanks
 
Quote:

Originally Posted by moondaughter (Post 1209089)
Seems med experimentation is an exercise in alchemy....and a personal one. i started low but then my med pattern has followed a bell curve and after 6 years of taking medication (just started mucuna this past year) I now take much less than what I started with. I've found that combining 1/4 tsp. ashwaganda powder with 1/2 tsp. mucuna powder and 1/2 tabet of 10/100 carbidopa-levadopa 3 to 4 times perday works well for me. years aago I tried mucuna with no success and at one time was taking 6 pills 25/100 sinemet per day but was able to back off of that with adjunct therapies and the knowledge that more is not always better.
my mucuna powder is 20% levadopa and very carefully monitored for purity. Dyskinesia is much much less now with mucuna powder and I suspect it contains a natural compliment of enzymes that assist uptake..a book you might find of interest is "Mucuna versus Parkinson" by Dr. Rafael Gonzalez Maldonado (also on facebook) though he reccomends consulting with neuros famaliar with mucuna (think he does phone consults)'
to my mind the lower the dose the better though finding the therapeutic window takes trial and error , a lot of patience and inquiry and perhaps a little luck....for me I feel ashwaganda made a difference. oh yeah and one more thing...I've discovered that heating the water used to dissolve the mucuna and ashwaganda powder helps too-goes easier on my stomach...

Kind regards
MD

thank you for a thoughtful and informative reply--do you have an idea how many milligrams of l-dopa you are taking at a time with the ashwaghanda powder?

moondaughter 04-24-2016 11:32 AM

if at first you don't succeed...try again! (with a diff source)
 
Quote:

Originally Posted by schwad01 (Post 1209091)
thank you for a thoughtful and informative reply--do you have an idea how many milligrams of l-dopa you are taking at a time with the ashwaghanda powder?

50 mg (from the sinemet) and 200mg from the mucuna....when I travel I take Source Naturals mucuna capsules (2) and Lani Natural Ashwaganda capsules (1).....

I've heard from others that wildcrafted mucuna is better.....and I have tried other brands that haven't seemed to work well .

do get the book!!

Bogusia 04-25-2016 10:51 AM

My Mucuna Experience
 
I started taking mucuna about four months ago in addition to my 3 x 25/100 L/C daily all taken between 6:30am – 4:00pm as I am still working full time. I was taking L/C for only year and a half when I started to experience shorter and weaker help with the symptoms as the time went by. For example my first dose of L/C at 6:30 am went from lasting more or less until 11:00 am to only 9:00am in a quite short time. Also, subsequent doses in the afternoon, which never worked as well as the morning one, provided weaker and less coverage. Right now I am experimenting with taking 1 mucuna capsule (Dopa Mucuna from NOW – 60mg L-dopa) about 50 minutes after taking one 25/100 L/C and that extents my current coverage time to 4 hr and sometimes longer. Also, the coverage is better when it last. It was never 100% with L/C more like 70% at the best of times and stress made it significantly less or canceled it all together. With addition of mucuna I experience times between doses when I have almost 100% coverage. Of course I am still experimenting with timing and dosage. I did experience nausea when I took 2 capsules of mucuna 40 minutes after taking one 25/100 L/C – did it only twice so far. With L/C I was also experiencing quite strong left hand tremor (more like flapping) when the coverage was wearing off, which I don't experience as much after addition of mucuna. All together, even when I am “not on” the symptoms seem to be somewhat milder. There is really no explanation for any of this and so everyone has to find their own medication/supplement combo that works for them and adjust it to their own PD progression. I should mention that I was diagnosed with PD four years ago but misdiagnosed with essential tremor 5 years prior to that. My main physical symptoms are left hand tremor, drugging left food, no arm swing and slow movement and stiffness. I tried Mirapex and Neupro but they didn't work for me.

soccertese 04-25-2016 06:33 PM

bogusia,
glad your're having success with mucuna. i've tried it half heartedly in bulk form, 1 tsp and hardly noticed anything but will try it using capsules based on your post :)

seems like your're just getting more l-dopa with the mucuan? have you tried 150mg of C/L for comparison?
there's also the 25/250 strength C/L which you can split if you want to experiment with taking less carbidopa and more l-dopa which you are doing when you take mucuna.

just curious as to which C/L generic you are taking? what are the numbers on the tablet? i do better on the TEVA generic which i can't get anymore.

lurkingforacure 04-26-2016 12:10 AM

our observations and possible therapuetic dosage
 
We have been taking mucuna, bulk powder, for years. I've posted about it before, there are many posts here about mucuna, and of course tons of information out there in cyberspace. I don't want to to repeat all of that, but did want to mention a couple of things we have experienced:

1. have never gotten nauseous taking the mucuna powder;

2. we take it mixed in water, you have to mix it well and drink it rather quickly as it will settle to the bottom;

3. less water is better, I think of our mixture as a semi-runny sludge, gross, but works, because it's too hard to slog down 8 (or more) ounces of this stuff;

4. there may be a therapeutic dosage to mucuna, which will depend on each individual...for us, the minimum amount we have to take to feel any effect is 1.5 teaspoons...occasionally, and more frequently recently, we are taking 2 teaspoons at a time;

5. we get ours from Banyan Botanicals (no relationship to them) and it's organic. We buy in bulk, set some in a container on the counter for immediate use, and just freeze the rest. It's around $22/pound which lasts a long time and is a heck of a lot cheaper than scripts;

6. for us, food does not interfere with mucuna like it does with sinemet, which is huge;

7. mucuna is like glue: when mixed with water and allowed to dry, it's next to impossible to get it out of a glass (or your sink...). We use those tiny paper dixie cups, which don't hold a lot of water to begin with, so that's good, and they are perfect for mixing and taking the mucuna because you can throw them away. Plus, if you're shaky at the moment and drop the cup, it doesn't shatter like a glass would and risk cutting you or someone else.

I hope this helps others. For us, the mucuna will hit when nothing else does and has really helped smooth out some rough spots. Just wish it tasted like chocolate:)

Bogusia 04-26-2016 12:23 AM

Soccertese,
I hope that mucuna will work for you. It is such a relief when something seems to help even a little bit.
I didn’t try to take 150 mg of C/L but I was trying to take half a tablet every two hours. That didn’t work. There was very little relief from the PD symptoms. Also, I was starting to experience what to me felt like starting of dyskinesia, very uncomfortable restless feeling inside and the urge to move my legs, so I didn’t want to increase my daily C/L intake above 400mg unless absolutely necessary.
Thank you for brining up option of trying to lover carbidopa intake with 25/250 C/L. I will ask my neuro about it next time I see it.
There is no number on the C/L tablets I am taking just letters APO. The brand name is Apo-Levocarb. The DIN number is 02195941.

eds195 05-05-2016 06:10 PM

Moondaughter,

Where do you get your mucuna powder from, thanks.

Eric

Veronicaleighthe 05-10-2016 11:55 PM

Hi- I am brand new to this site and feel awkward posting.. I was diagnosed with
Parkinson's a year and a half ago. My neurologist put me on 1mg of Azilect almost immediately... I have a painfully stiff right arm and hand. I am now noticing that my right leg is a little draggy... The Azilect doesn't seem to help at all and I am starting to have my doubts about my doctor.. At any rate I have been doing some reading about mucuna pruriens, ashwagandha, lion's mane extract etc. and it makes my head spin. I would like to try a more natural route- and am curious to know how long you need to cycle off the incredibly toxic Azilect before you can safely incorporate new treatments....anybody have to wean off Azilect... Also trying acupuncture and healing touch.... Whew.... Thank you


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