Parkinson's Disease Tulip


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Old 06-16-2008, 09:13 AM #1
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Default Thumbs up for Mucuna Pruriens

I agree whole heartily with Max, Rick and Fiona (I hope that I have not missed anyone who has communicated about this topic, if so, I apologize ahead) that Mucuna, is for me, a far better choice than Sinemet/L-dopa. In fact there is no comparison now that I am on the right kind of Mucuna, a powder called Zandopa (natural herb) ordered from India.

I have been able to reduce my Sinemet RR totally (500 mgs daily) and two Sinemet CR 100/25 for a total of 700 mgs in two months before I started Mucuna. I was still having side effects from the remaining 800 mgs that I am still taking. And yes it has not been easy.

I am slowly reducing my Sinemet CR by 1/2 a 100/25 tablet and adding a 1/4 tsp. of Mucuna three times a day. I am changing this ratio every week. I am following Max19BC plan. Max, if you are inundated with emails.......sorry man!

Mucuna has helped tremendously in reducing the side effects from the Sinemet CR that I am still taking. I feel better and it works for me. It is the tool I need to get off Sinemet dopamine, which is my goal.
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Old 06-16-2008, 04:24 PM #2
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Yeah, me too. And I havenīt experimented with the Zandopa yet, just the mucuna from the Vitamin Shoppe. But what a thrill to email my doctor to say, uh, you know those 6 Sinemets I used to take every day? Well, I`m not really taking those now...SEND!!!!! What a feeling.
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Old 07-15-2008, 01:41 PM #3
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Default mucuna plus Whey Glutathione protein powder, and an electric scooter

ditto for mucuna being helpful. I mix the Zandopa with powder from capsules from the AFI mucuna that Fiona sent me a link to. I have to titrate carefully, but find 1/4 tsp. daily is best for me, as more gives me dyskinesias. Seems, (as with everything PD) that it has to figured out in a very individualized way. I've been able to go down on my Stalevo 50 from 1 1/2, to one every 3 hours. When I feel good, I feel great.
It still takes alot of tweaking, and a muggy, humid day seems to cancel out everything good I try to do for myself once I hit the air outside.
I'm also taking a half scoop of whey glutathione powder,(from NOW) whisked into my oj every morning, which helps with energy, and which my PD expert on complementary medicine, Cyndy, swears by.
Obviously, I try to remember to time it so the protein is an hour away from my levadopa.
The mucuna does help with everything, especially mood.
Finally, as a reward for 4 miles a day on my Schwinn recumbent bike, and stretching, and sometimes doing Qi Gong with my wonderful DVD, I get to use my brand new travel-friendly electric scooter to go out when I'm unsure of going off. Look at Pride Scooters online, and check out the lower priced ones that your neurologist can write a scrip for, and Medicare or insurance can pay part of cost, if you do it right.
I feel like I took the world back in terms of freedom to be out and about, and even ride it straight into stores and local restaurants. Leonore


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Yeah, me too. And I havenīt experimented with the Zandopa yet, just the mucuna from the Vitamin Shoppe. But what a thrill to email my doctor to say, uh, you know those 6 Sinemets I used to take every day? Well, I`m not really taking those now...SEND!!!!! What a feeling.
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Old 06-16-2008, 05:40 PM #4
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Fiona, you crack me up. I'm not even going to bother telling mine, he would probably gong my head to see if it had a reflex instead of my knees.

Bonnie
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Old 06-18-2008, 09:00 AM #5
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Fiona, you crack me up. I'm not even going to bother telling mine, he would probably gong my head to see if it had a reflex instead of my knees.

Bonnie
That's hilarious, Bonnie. Atta girl!
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Old 06-18-2008, 05:09 PM #6
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Default Mucuna? Really?

Hi, again.

Glad to hear all the positive news about your mucuna experiences. I've tried to start, but for numerous reasons, have put it off temporarily.

My question : Has anyone had any negative response or experience with mucuna? Has anyone even heard of anyone having a negative experience?

I guess I've just been a little "chicken" to jump into the experiment, and am looking for someone to push me in! I'm looking forward to your response.

In the meantime, I'm very happy that both of you are having such great results. It gives me hope.
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Old 06-18-2008, 06:11 PM #7
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KK13, if you send me your email address to smithclayriley4@yahoo.ca I can forward the info I have on it and the dosing schedule that I follow. I have zip side effects from the Mucuna and hardly any dystonia from the Sinemet CR that I still am taking. Optimistically I could be off Sinemet (two CR 100/25 4 times a day) in a couple of months. I am already down to 3 and 1/2 CR's three times a day. I am amazed how well I am doing but I had no choice, Sinemet/L-dopa was killing me.

I do take L-Tyrosine (2 x 500mgs) Creatine, Glutamine and liquid B12 with Methylcobalamin mixed in Gatorade at 2100 with one 3 mg of Melatonin to help me sleep. This was how I started reducing by eliminating my 2100 hr or 9pm meds.
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Old 06-18-2008, 09:48 PM #8
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I won't say these are negatives so much as cautions. I think it is safer than Sinemet at a minimum.
1) I think the raw powder is best because no one has messed with it. Zandopa is suspect.
2) The studies talk of dosages as high as 30 g and I myself have gone as high as 50 g. At present I am using just 5 g! It seems to be enough.
3) I have integrated it into my other meds. I still take Sinemet CR and Requip at the same dosages, but I get better results. However, I take the mucuna at supper because it seems to interfere with my meds if I take it in the mornng.
4) Because raw beans are not good for you, I toast it in the oven.

It is a valuable tool. I just have to learn how to use it.
-Rick


Quote:
Originally Posted by kk13 View Post
Hi, again.

Glad to hear all the positive news about your mucuna experiences. I've tried to start, but for numerous reasons, have put it off temporarily.

My question : Has anyone had any negative response or experience with mucuna? Has anyone even heard of anyone having a negative experience?

I guess I've just been a little "chicken" to jump into the experiment, and am looking for someone to push me in! I'm looking forward to your response.

In the meantime, I'm very happy that both of you are having such great results. It gives me hope.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 06-19-2008, 03:09 AM #9
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Rick, Zandopa is powder but definitely not black. I was wondering why it is suspect?
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Old 06-22-2008, 01:38 PM #10
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Quote:
Originally Posted by kk13 View Post
Hi, again.

Glad to hear all the positive news about your mucuna experiences. I've tried to start, but for numerous reasons, have put it off temporarily.

My question : Has anyone had any negative response or experience with mucuna? Has anyone even heard of anyone having a negative experience?

I guess I've just been a little "chicken" to jump into the experiment, and am looking for someone to push me in! I'm looking forward to your response.

In the meantime, I'm very happy that both of you are having such great results. It gives me hope.
Greetings:

I'm in the same boat, being a little chicken about jumping in to start. what are your symptoms? Mine is maor fatigue and rigidity in my left arm

akamscluso
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