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06-27-2008, 01:52 PM | #31 | |||
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Fats are the biggest threat to our l-dopa consumption because they slow the emptying of the stomach into the gut, where it has to go to be absorbed. Many times (I suspect) we think eating protien is our problem , but it's actually the fat content of our food. sinemet has such a short half-life that we are always having to watch the clock. For my money cheddar cheese is the biggest sinemet killer on the block. Not a side of beef, as you would think.
good luck with the testing Rick. Post your results for input. I'm very suspicious of foods and how they affect our response. What we eat has the biggest impact on the sucess or failure of our meds to perform. I have noted I can eat up to 250 calories of any combo of real food (except sugar and all it's cousins- honey, corn syrup, etc, and high fat foods) between doses of meds.
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06-27-2008, 05:08 PM | #32 | |||
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That the mucuna is working better for me than not. Last night and my two morning doses today I did 2 Sinemet CR 100/25, 4 hours apart instead of taking 1 tsp of mucuna in Gatorade and 1 Sinemet CR 100/25. I found I had way more toe dystonia and wearing on/off symptoms when I took the 2 CR. My last dose back on my mucuna program I noticed the difference right away. A big difference.
I had a look at my MRI scans, not a pretty picture as I expected. I will have to wait a week for the radiologists report. I remember telling my neuro four years ago about this crippling leg pain I started having. His answer "oh you must be under-medicated, up the drugs".
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06-28-2008, 07:16 AM | #33 | ||
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Hmmm, Rosebud, tincture of mucuna...sounds like a must-try. very interesting. And I think you are right on about the fat content thing being the problem - except do I think that? I've mixed mucuna with yogurt, once even a little ice cream - not a lot - but it seemed to work still....Not sure, but I think you could be right.....and certainly for Sinemet.
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06-28-2008, 04:13 PM | #34 | |||
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Murray Charters used to say he could eat a tuna sandwich with no problem, but the minute you added a slab of cheese and turned it into a Tuna Melt he could be off for hours. I often eat low fat yogurt right after I've taken sinemet, and no problem. Ice cream has the sugar thing happening which is evil for my tremor. I buy the single size servings of things like yogurt, pudding and anything else that comes that way. I then have built in portion control.
Also, when eating, I think we have to consider our size. As a 5' 1" 120 lb female, I cannot eat a whole Tuna Sandwich without my meds being affected ( as I said I have figured out that I can get away with 250-270 calories per meal) But Murray was a 200 lb six foot tall man. He could burn that extra calorie load easily. And yet another thought...mucuna being a natural food may have built in enzymes or other factors that we are not even aware of that helps it fit into the picture better. Don't forget they didn't even know about vitamins until the last century. And they are still discovering new ones!
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06-29-2008, 02:38 AM | #35 | |||
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I'm really glad to hear about how much mucuna is helping some of you. Mucuna is still a mystery to most of us pd'ers, but I'm still pretty pleased with my results. I've started taking it over 18 months ago. Back then I was taking 4 to 5 tablets of Sinemet 200/50 CR a day with mostly OFF times. Sinemet wasn't working very effectively for me anymore, so I've decided to gradually replaced my Sinemet with mucuna over several months. I'm now taking only 1/4 tablet of Sinemet 200/50CR with 1 1/2 tsp (7.5 ml) Zandopa (powdered mucuna) from India 3 or 4 times a day. When I'm out, I'll substitute the Zandopa powder with 1 1/2 mucuna tablet from Herbsforever. I've had pd for 7 years now, so I'm probably taking more mucuna than most of you. I wouldn't recommend anyone taking this much to start.
But I'm really happy that I've managed reduced my Sinemet intake by 80%. I'm in much better shape now than 18 months ago. I really don't have any side effects. IT'S A SHAME the medical doctors aren't prescribing it. Here are some of the benefits that have occurred since I've started using mucuna. When the mucuna/sinemet kicks in, I no longer have any muscle aches, my tremors are gone (only comes back if I get stressed), can walk mostly normal, no more freezing, etc. I would say that I'm 80% normal. I can walk, jog, run, ride a bike, write pretty normal, feel pretty good, not depressed just enjoying life again. Here's a biggie: I'm no longer constipated. I will always try to take it on an empty stomach. I'll use a small electric blender to mix the powder and I chew the Sinemet ( I know, I'm not suppose to). Anyway, it works for me. I would highly recommend it. Another consideration to use mucuna, is to boost your Sinemet when it starts to fail you instead of taking Comton or Mirapex, etc. Anyway, just a thought. Good luck, Max |
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"Thanks for this!" says: | ariela (07-14-2008) |
06-29-2008, 09:31 AM | #36 | ||
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Thanks Max for the update. Yes, I can now say I have been able to eliminate the use of Mirapex/Requip/Neupro patch with the help of Mucuna, and am feeling better than I was before, and at least 2/3 of the Sinemet I used to take. Still taking Stalevo and seem to need a little sinemet - but not so much.
I have tried the Zandopa and was surprised to find that it worked in a certain way but felt very intense, and very scary and almost sickening, and the shift back to my regular regimen just a dose-time or so later felt very rocky and frightening. Maybe it doesn't go well with Stalevo? Don't know....wish we had someone who really had the pharmaceutical knowledge, experience, and willingness to help us all figure this out.... |
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06-29-2008, 11:44 AM | #37 | |||
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Hi Max,
Thanks for posting your experience with Mucuna and special thanks for sharing all your info with me that got me interested in trying it. Bonnie
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06-29-2008, 07:25 PM | #38 | ||
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06-30-2008, 07:13 AM | #39 | |||
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Ken,
It seems everyone on the forum have all tried different types of Mucuna, tincture, seed, tablet and powder which makes it a bit over whelming and confusing. Your best bet is read some of the posts as I was advised to do. It is hard when it comes to telling anyone about medication, supplements, herbs etc. what works for you might not work for me. Too many variables. I ordered Mucuna tablets from California, with no problem getting them across the border in a week's time. I did wonder about that myself. Anyway the tablet potency seems too much for me. I may try them again later. I order a Mucuna powder from India. A two month supply plus $2.00 shipping cost around $27.00. It arrived approximately a week later. My source for Zandopa in India is http://mall.coimbatore.com/bnh/zandu/zandopa.htm
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07-14-2008, 03:38 PM | #40 | ||
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Hi I m staring at the Zandopa right now, fearful (so stupid) of trying it. How much are you taking? In water, juice or what? Also how many times a day? Thanks, AKAMSCLUSO |
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