I need some advice.
 

Hi everyone,

New here but have been reading all your threads and find myself questioning my original thought process! i need your help.

I was diagnosed with Early onset about 10 years ago and am currently taking Sinemet CR half tabs 25/200 two three times a day plus mirapexin 1x 0.7mg three times a day and mirapexin 2x 0.18mg two three times a day.
I am finding that I am not getting the same relief I once had and after about 3 hours I am offline again, sometimes they don't even work at all.
I came across Mucuna and have heard some great things about it,then I found threads on Zanadopa and thought should I only take pure Mucuna?
Basically I feel I need more than I am getting and have been taking too many sinemet ( which I have now stopped doing!) I wanted to try a natural alternative alongside the Sinemet CR, can anyone advise me is Mucuna safe or safer in its pure form than Zanadopa?
many thanks

Hi,

Sadly this is our fate with the meds. Right now I'm still on a Sinemet holiday but I am also interested in going over to more natural forms of levodopa sooner than later in hope that I will still be able to use Sinemet down the road. I can't offer much guidance in dosing with mucuna or Zandopa, but there are many detailed accounts of how to get started and what to look out for- search the forum archives for threads started by Reverett123 and Max19BC, for starters. They are detailed and generous in sharing their experiences.

Here's what I've learned either here, through research and/or experience:

1) Do not suddenly stop your regular PD meds! This is dangerous; they need to be slowly adjusted down measured against what you are taking in natural form- even better if your doctor will give you a 'sounds reasonable' if you present some sort of titration plan- it's doubtful they will be 100 % supportive with supplements.

2) When choosing mucuna vs. Zandopa keep in mind that the zandopa is pharmaceutical grade while the mucuna can include toxic metals depending on where it comes from- the scary thing is you don't know where usually unless the content is tested and reported. You could also search or post here to see who has any brand recommendations. I think some prefer the Zandopa as it is formulated to treat PD and comes in sachets to mix in water- may be easier than emptying mucuna capsules.

3) I think that given the hazard of possibly ingesting metals (which none of us with neurodegeneration needs) with mucuna, Zandopa may be a safer bet to start off with- this is just my opinion. I have some mucuna capsules but am reluctant to use them until I can be 100% sure they are pure mucuna- this means I probably have to send them for lab analysis somewhere.

Hopefully, this at least bumps up your post and some of our more seasoned experimenters can fill in many more blanks for you.

Laura

As Laura suggested, take the time to read the threads carefully. It is one of the most discussed subjects on this forum and with good reason.
My own opinions-
First and foremost, the published studies use a dosage that is far too high. Use the least amount possible. In my case, I literally moisten the tip of my finger and take what adheres. Taken with my other meds, it switches me on in half my usual time.
Next, I prefer the whole raw powder because there is much more at work than simply increasing dopamine. Zandopa is purified and strips a lot of stuff out. I use an American grown, organic product from Banyan Botanicals through Amazon.
Finally, you may find that you are best served using it as a "rescue" drug.

All that comes from the perspective of advanced PD. Were I in the early stages, it might be different.

I am in my 7th year, and I too have been taking 3 x 50/200 Sinamet CR daily..2 x .5 Mirapex, and Amantadine 3 x 100mg daily..Ive been on the CR and Mirapex for two years..Had to add Amantadine this year beccause of tremor, dystonia and dyskiesia in my right leg..Recently I have been having the same problem as you..Somedays my meds would work, and somedays they dont..I went through 4 straight days two weeks ago, where I took my meds, and nothing happened all day long..Finally, I started taking 3 - 25/100 Sinemets inbetween doses to get back on, and still had some tough moments throughout the day..I have seen my neuro three times in six months, but the first two visits I was doing ok..The third, and most recent visit, he finally saw me when I was at my worst

He changed me over from Sinemet CR to Stalevo 50/200 three times daily, and the Stalevo keeps me on from 7:00 AM untill midnight, and has worked consistantly everyday..And it is quality on time..This is the closest thing to a "Sinemet Honeymoon" that Ive ever experienced..When I walk, it is vigorously, rather than shuffle or limp..I had no idea what my meds were covering up untill they didnt work anymore

I think the deal is, when the body starts breaking down more of the levadopa before it crosses the blood brain barrier, you need more and more Sinamet to get the same effect..Because Stalevo has Comtan in it, to block the receptors from breaking down the levadopa, you get more out of less, or the same amount of Sinemet..If that is the problem, then what I know about this so far tells me that, Im not certain that Zandopa is the answer..And Im not sure because I dont know if the body breaks down the natural dopamine in Zandopa, like it does with Sinamet before it crosses the blood brain barrier

Maybe Im all wet, bit it's food for thought