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06-19-2008, 06:06 PM | #11 | |||
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In Remembrance
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I think Zandopa is laced with aspartame as part of its "flavored base." I have tried both and found the powder just as good as the Zandopa. Also, it was interesting to find that mine came with a lovely red plastic scoop labeled "5 g" that held 7.5 g. Made me doubt quality control.
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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: | lou_lou (06-23-2008) |
06-19-2008, 06:52 PM | #12 | |||
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Thanks for the reply. I have gone through all the posting on Mucuna and have reams of it printed off. I try and keep up but I think I am on too much information overload.
Less confused.
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"Trust your nervous system" - Timothy Leary |
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06-22-2008, 01:35 PM | #13 | ||
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Ok, catching up a little bit here - I take this product made by America's Finest Inc. (!) called HGH 400 - it is mucuna pruriens, standardized to 15% l-dopa. So I just do a little math, and take the same amount which would be in 1 Sinemet 25/100 which is two caps of this product. I have tried removing it from the capsules and heating it - didn't seem to make a difference one way or the other, although taking it out of the caps and mixing it into applesauce or yogurt seems to make it work a little faster. I have been using it to replace most of my Sinemet for the past two months or so, and feel better than I did. I still take the Stalevo and Amantadine (but less of the latter), and now this is my fifth day totally off the Neupro patch at last (without replacing it with any other agonist), and I seem to be feeling better every day. Don't get that daily feeling like I'm dying at some point or other.
Keith, as to anything I've heard bad about mucuna - well, not really except sometimes it doesn't work in a given dose or you can have dyskinesia with it. But I'm still experimenting - on the whole I feel much evener and - well, healthier than before. I have struggled with some nightmares, but I did long before I tried mucuna, and I feel it has more to do with withdrawal from the agonists. A lot of self-determination and meditation seems to be keeping that symptom under control. |
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06-22-2008, 01:38 PM | #14 | ||
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New Member
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Quote:
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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06-23-2008, 09:09 AM | #15 | ||
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Junior Member
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The two major problems I have are the "textbook" or "classic" advanced PD problems: Dyskinesias: too much of a good thing, and "on/off" fluctuations: meds stop working long before next dose and at other unpredictable, inexplicable times throughout the day. |
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06-23-2008, 09:44 AM | #16 | |||
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In Remembrance
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I, too, deal primarily with dyskinesias, on-offs, and freezing. So let me warn you that too much mucuna, especially combined with a little sinemet will have you twisting the night away.
However, it can also make a fair substitute for sinemt in my case. The good thing about it is that you have control over dose since it isn't a tablet. 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: | lou_lou (06-23-2008) |
06-23-2008, 10:09 AM | #17 | |||
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In Remembrance
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I'd like to compare notes a minute about on/offs. Not many seem to deal with them on the forum.
In particular, I wonder if your experience would mesh with an explanation of stress as a trigger. I have noticed that I can sometimes find myself going into one of these states due to stress, remove the stress and relax, and move back to normal without any more meds. I also find that these states do not respond to more medication. In fact, there seems to be a need for a certain amount of time to pass. That would be consistent with stress hormones droping. 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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06-23-2008, 11:44 AM | #18 | ||
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Junior Member
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for the warning. I'll certainly watch out for that. Anyone who has ever gone through one of those "super-dyskinetic" attacks knows what a nightmare it can be.
Second, yes I have had the same experience regarding stress. It certainly isn't the only factor, but it is definitely one of the biggies. Sometimes, in my case, it seems to be a function of just letting time pass, as you suggest. Other times, I thought it was a little extra Sinemet that did the trick. But now that I think about it, once you take the Sinemet, you have to wait a certain amount of time for it to take effect. So I eventually relax and return to "normal"...but was it just the passage of time and relaxation or the Sinemet? Like so many other aspects of this disease, it remains a mystery. Sorry for your troubles, but relieved to know I'm not the only one putting up with these strange, horrid symptoms and side effects. Regards, Keith |
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06-23-2008, 02:28 PM | #19 | |||
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In Remembrance
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If you are willing, I would like to continue this and give it a thread of its own. I'll call it "Advanced symptoms?" The question mark is intentional. Join me there?
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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06-23-2008, 02:52 PM | #20 | ||
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Junior Member
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