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11-14-2008, 09:42 PM | #1 | |||
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In Remembrance
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This is a tough one, but I will offer some suggestions. First, be aware that MP is a real drug. It can have both negative and positive effects. Start out very low and increase dosage slowly.
There's been a lot of discussion, so use the search box and read it all. There have been some problems to be aware of. For me, dyskinesia was one. Just a little too much will set you jumping. Another was a strengthened "off" phenomenon. I still experiment with it but not nearly as much as I did. If I were earlier along the curve I might do more, but maybe not. In India, it is used as part of a finite program, but not indefinitely. So we don't have long term data. Don't expect your Doc to have much to say positive about it. Too many unknowns. Quote:
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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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"Thanks for this!" says: | ariela (11-14-2008) |
11-15-2008, 12:44 PM | #2 | ||
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Junior Member
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I'll wait till just about bed time to give a full report of my experiences. |
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11-15-2008, 09:08 PM | #3 | ||
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Junior Member
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Good night sleep last night, first all week.
Up at 9:00 am, took 2.5 ml of Mucuna and waited for an hour and had breakfast. Mucuna did not work and I waited 4 hours before taking another dose. 1:45 pm upped the dose to 5 ml. By the way, my right arm tells me if the PD drugs are working or not. If it's loose and I then my body isn't stiff and I can perform pretty well. I'm sure a lot of you have the same problem. By to my report, about 45 minutes after my 5.o dose i could feel my body getting more fluid. things looking good. 4:00 pm body is getting rigid again. Toughed it out till 5:45 pm and took a 7.5 ml dose. Things started happening right away. I felt sick in stomach and I got a little dizzy but things evened out after a while. The rigidity left my boy and till around 9:00 pm I felt pretty good. I just took a 100/25 cardoba to finish out the day. Now here's how I see it. At the moment I'm typing with 2 hands, not well but it's working. I found that 2.5 ml does nothing. 5.0 I could definitely feel the rigidity leaving my body to some extant. The 7.5 ml dose made a lot of difference, I had an almost immediate response from the drug and it lasted a long time. Tomorrow, I'm going to start with a 7.5 dose and see if it has the same effect as today. I hope it does and I want to see how long I can go without taking another one. night everyone sleep well, I'm off to bed as soon as my Habs loose again...sheeh!!!!! |
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10-15-2008, 04:17 PM | #4 | ||
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The Mucuna red velvet bean plant does not have the carbidopa which extends our western medicine synthetic levadopa, (Sinemet and Stalevo), so it shouldn't be a replacement for the synthetic levadopa, but it can help us to reduce it. That said, it has to be titrated for each person, or you will have side effects, like dyskinesias, or nausea, and each person has to figure that for themselves. As for method, I actually pop Zandopa powder right into my mouth with a little spoon. For me, 1/4 teaspoon twice daily with my Stalevo works, but it absolutely can give me dyskinesias if I take more. I'm certain the serotonin in it also works, and makes me more even in my moods, and the levadopa in it it helps me to go "on" more quickly when I take Stalevo. I used it for a few months and took a break lately-not sure why-I think I was trying to sort out what was working since Azilect started helping me to feel better. Now I'm reminded to try Zandopa again, to help with the "off-balance" stretches. Good luck! Leonore
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“WHEN I DARE TO BE POWERFUL, TO USE MY STRENGTH IN THE SERVICE OF MY VISION, THEN IT BECOMES LESS AND LESS IMPORTANT WHETHER OR NOT I AM AFRAID.” Audre Lorde: (1934-1992) African American, lesbian-writer/poet/warrior, who gave us the gift of her courage, before cancer stole her away |
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"Thanks for this!" says: | imark3000 (10-18-2008) |
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