[Jim091866]

I found your post interesting and very thought provoking-introspectively. What dose of macuna would you recommend starting out on? I take about 12 sinemet 25/100 throughout the day. Is there a kind of ratio in that a tsp of macuna equals 1 sinemet. Can you recommend what we should look for on the bottle. Thanks. How do you take it? With something to drink/eat? On cereal?

[Max19BC]

Originally Posted by Jim0918

I found your post interesting and very thought provoking-introspectively. What dose of macuna would you recommend starting out on? I take about 12 sinemet 25/100 throughout the day. Is there a kind of ratio in that a tsp of macuna equals 1 sinemet. Can you recommend what we should look for on the bottle. Thanks. How do you take it? With something to drink/eat? On cereal?

Hi Jim,
I've tried a variety of mucuna from different suppliers. I keep going back to taking Zandopa (mucuna) from India, it seems to work the best for me. It's in the powder form, so it's a bit of a pain to take. Here's my suggestion for taking Zandopa.

Everyone is going to need different amounts, depending on what other meds they are on and what their needs are. I recommend that you take it very slowly. If you take to much to quickly, you body might reject it (throw-up) or other side effects, just like if you took to much Sinemet. So take it in tiny amounts to start with and build up slowly. Try taking a level 1/4 tsp of powered munuca (Zandopa) 2 times a day for the first week to start.
Take a level 1/4 tsp 3 times a day for the second week. Gradually increase it to 1/2 tsp 4 times a day by the 2nd month. See what works best for you. Mix Zandopa in half a glass of water. I use a small hand held blender to mix it or use a mixing container. It doesn’t mix very well with a spoon. Personally I don’t mind the taste, but I do add some juice to it (cranberry, etc.)
Hopefully you will notice some benefits in a week or two. It’s takes time to build up in your system, just like Sinemet, so be patient. Right now, I’m currently taking a half level tsp of Zandopa with 1/2 tablet of Simenet. (200/50 cr). 3x a day. This works for me, but everyone if different.
I'm still doing all this on my own right now, but you should let your doctor(s) know what you're doing. Keep a record (date, time of day, amount of all meds/mucuna, when it kicked in, faded out, and effects (good or bad), meals time, etc.
Just take it slow, if you feel anxious, hyper, or antsy you know you're taking to much. I space the doses by at least 2 hours 'till the next one. I take just enough to feel normal without feeling anxious. Remember this stuff is very powerful, be sure to gradually reduce some of your Simenet as you replace it with Zandopa. My guess is that a 1/2 level tsp of Zandopa equals to one 125/50 Sinemet. I'm probably wrong on the exact amount but it should be close.
I get my Zandopa from: http://mall.coimbatore.com/bnh/zandu/zandopa.htm

Good luck,
Keep us informed on your results.
Max

[Ann19]

Hi Max19BC,

What are the benefits of taking Macuna pruriens in addition to, or in lieu of, Sinemet? Does reducing your doses of Sinemet help reduce that drug's inevitable side effects? Do you find you are getting a reduction of symptoms, by switching over to macuna? Or, are you simply trying to save money. I know that macuna is cheaper than Sinemet. What does a month's supply of macuna cost you?

Thank you for your help. I have a relative with PD who shares your name. I also sent you a private message related to this, but since I'm new to NeuroTalk, I'm not sure if it got through to you. Hope to hear. — Ann19

[Max19BC]

You might want to read all the posting in the "mucuna puriens" thread posted below.
A good informative site on mucuna is:
http://www.parkinson.org/Page.aspx?&pid=459&srcid=379

Mucuna is cheapter than Sinemet, that's not why I take it but it doesn't hurt. I believe it's overall better for me.
Enjoy life.
Max

PS Taking mucuna is only a small part in improving pd symptons.

[Ann19]

Thank you for sending me to read your other posts.... I read "Recovery is possible" and your macuna info is most clear and helpful. I am passing it on to a relative. Blessings in your life and ongoing recovery and health. Healing is a continuum. Ann19

[alex10]

Hi Max19BC,
How are you doing? What is your updated opinion on using mucuna together with sinemet?
Thank you for all your posts. I was diagnosed with PD 3 years ago. Take sinemet 25/100 *5 daily. I am interested to hear about your current mucuna experience. Best regards, Alex

[Max19BC]

Hi Alex,
I'm in my 13th year of having PD and surprisingly feeling pretty good. I've been slowly cutting back on my meds, thus reducing the side effects. I'm at that stage now where the side effects of the meds are worse than the disease itself.
3 months ago I stopped taking Mucuna (Zandopa). I think it was only adding to the problem. I've been taking it for 8 years, so maybe my body just got to sensitive to it.
I started taking organic Virgin Coconut OIl a couple of months ago. I found out about it here on Neurotalk. I take 1/2 teaspoon twice a day and I've noticed some overall improvements. My dyskinesias is very minor now, my speech has improved, my mind is clear and I feel pretty stable. Even my doctor commented that I appear to be better.
Like you, I take 5 100/25 yellow Sinemet pills, one every 2 hours (8am to 4pm).
The only symptoms I'll have in the morning, when I wake up unmedicated, is slowness in movement and poor balance. I'm able to get dressed and make breakfast unmedicated. I don't have any tremors or involuntary movements.
In about 40 minutes, my meds will kicks in. My walking greatly improves to be almost normal. My on/off periods are pretty gradual now. I used to be ON or OFF in a matter of minutes. I can still drive, go out for walks, I live alone and can fully take care of myself. My main problem is talking. My voice is weak and it's difficult to get the words out, but its sounds like its getting better. I have supper around 5, and If I'm not going out for the evening, I don't bother to take another pill. I like to give my body a break from the meds.
After supper, I would go through a withdrawal stage. This usually starts around 6:30. My legs would get restless, my hands would tremor, sometimes I would sweat, my body goes numb and my muscles would ache. I could barely walk. But this will pass in about an hour or two and my body would calm down. Walking improves but still poor balance and slowness in movement . During the night (unmedicated) my body is calm, no tremors or involuntary movements, it's difficult to change positions in bed, but lately this is becoming easier. I still get dry mouth if I'm sleeping on my back but I do take a sleeping pill to help me sleep.
I don't know what it is, but I feel like I'm getting better. The doctors have the tendency to increase or add more drugs, thus increasing the side effects. Everyone is different, but for me, gradually reducing and eliminating some drugs made a big improvement. Who knows maybe its the Coconut Oil.
It couldn't hurt.

Enjoy life always, Max

[soccertese]

Originally Posted by Max19BC

Hi Alex,
I'm in my 13th year of having PD and surprisingly feeling pretty good. I've been slowly cutting back on my meds, thus reducing the side effects. I'm at that stage now where the side effects of the meds are worse than the disease itself.
3 months ago I stopped taking Mucuna (Zandopa). I think it was only adding to the problem. I've been taking it for 8 years, so maybe my body just got to sensitive to it.
I started taking organic Virgin Coconut OIl a couple of months ago. I found out about it here on Neurotalk. I take 1/2 teaspoon twice a day and I've noticed some overall improvements. My dyskinesias is very minor now, my speech has improved, my mind is clear and I feel pretty stable. Even my doctor commented that I appear to be better.
Like you, I take 5 100/25 yellow Sinemet pills, one every 2 hours (8am to 4pm).
The only symptoms I'll have in the morning, when I wake up unmedicated, is slowness in movement and poor balance. I'm able to get dressed and make breakfast unmedicated. I don't have any tremors or involuntary movements.
In about 40 minutes, my meds will kicks in. My walking greatly improves to be almost normal. My on/off periods are pretty gradual now. I used to be ON or OFF in a matter of minutes. I can still drive, go out for walks, I live alone and can fully take care of myself. My main problem is talking. My voice is weak and it's difficult to get the words out, but its sounds like its getting better. I have supper around 5, and If I'm not going out for the evening, I don't bother to take another pill. I like to give my body a break from the meds.
After supper, I would go through a withdrawal stage. This usually starts around 6:30. My legs would get restless, my hands would tremor, sometimes I would sweat, my body goes numb and my muscles would ache. I could barely walk. But this will pass in about an hour or two and my body would calm down. Walking improves but still poor balance and slowness in movement . During the night (unmedicated) my body is calm, no tremors or involuntary movements, it's difficult to change positions in bed, but lately this is becoming easier. I still get dry mouth if I'm sleeping on my back but I do take a sleeping pill to help me sleep.
I don't know what it is, but I feel like I'm getting better. The doctors have the tendency to increase or add more drugs, thus increasing the side effects. Everyone is different, but for me, gradually reducing and eliminating some drugs made a big improvement. Who knows maybe its the Coconut Oil.
It couldn't hurt.

Enjoy life always, Max

thanks for sharing your experience. just to play devil's advocate, i know 2 people diagnosed over 12 years ago who seem to be doing great on a combination of stalevo, amantadine and requip. met them at a spinning class for pd'ers. i'm like you, i want to limit my drugs but i do suffer off times but you can't ignore those that just take what their neuro suggests and they do ok. i think most doing just fine on a drug cocktail don't post here. and then there is DBS to consider.

[johnt]

What I like about this forum is that it has a history. For instance, here we have:

A post is made over 4 years ago. Someone reads it and has a question of the poster. In a day a reply is received.

To all those keeping the forum up and running. Well done!

John