Parkinson's Disease Tulip


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Old 08-22-2016, 09:10 AM #71
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Originally Posted by eds195 View Post
Just wondering how anyone feels about the premise that carbidopa causes dyskinesia as suggested by the Hinz people? I have mixed some mucuna into my routine so as to not overdo carbidopa in the c/l regimen. Any thouights are welcome as usual....

Eric
one benefit for some patients receiving continuous delivery of l-dopa via infusion -dupdopa, in which i assume carbidopa is delivered in the same amounts as oral delivery, is reduced dyskinesias. there was a study done in the last few years where carbidopa was increased to i think 400mg and there was a small benefit.

keep in mind not every advanced pd'er receiving C/L get dyskinesias. i've read that dyskinesias have been reported by people receiving apomorphine. so i wouldn't say this theory is a slam dunk.

this anonymous first time poster poster didn't mention how much C/L he was taking, other meds andf supplements he/she was taking when the dyskinesias started and what efforts were made to moderate them.
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Old 08-22-2016, 09:45 PM #72
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this anonymous first time poster poster didn't mention how much C/L he was taking, other meds andf supplements he/she was taking when the dyskinesias started and what efforts were made to moderate them.
If anonymous refers to me, I was taking 5 x 100/25 sinemet and 2 x 5 mg selegiline. I did not try any additional meds to control dyskinesia, I am happier subtracting meds. I took carbidopa out of the equation and it worked as advertised.

Last edited by Jomar; 08-22-2016 at 10:45 PM. Reason: fixed quote tag
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Old 08-23-2016, 01:57 AM #73
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Default Peak-dose dyskinesia ?

Hercules957,

Can you tell us exactly when you experienced the dyskinesia? That is, how soon after you took a Sinemet tablet did it begin, and how long did it last?

I'm thinking of the possibility that it was peak-dose dyskinesia, and that it disappeared because your peak dose might now be lower.

That is what happened to me about a year ago. I changed from taking one Madopar 100/25 tablet 3 times per day to taking half a tablet six times per day, and the peak-dose (dystonic) dyskinesia disappeared.

Jeff
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Old 08-23-2016, 09:01 AM #74
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Hercules957,

Can you tell us exactly when you experienced the dyskinesia? That is, how soon after you took a Sinemet tablet did it begin, and how long did it last?

I'm thinking of the possibility that it was peak-dose dyskinesia, and that it disappeared because your peak dose might now be lower.

That is what happened to me about a year ago. I changed from taking one Madopar 100/25 tablet 3 times per day to taking half a tablet six times per day, and the peak-dose (dystonic) dyskinesia disappeared.

Jeff
My dyskinesia started one year after starting sinemet, I was surprised how early It was. I agree it was worse at peak dose, but it just did not peak out, it stayed for hours, starting about one hour after ingestion of 1 1/2 100/25 sinemet. It was ahead bobbing and trunk squirming.
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Old 08-23-2016, 09:50 AM #75
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if you want to try less carbidopa as an experiment you can try a 25/250 carbidopa/levodopa pill, i used to get it when i paid for my meds, it was about the same price as the 25/100 and wasn't that hard to split into qtrs. or try the 25/100CR or 50/200CR which have lower bioavailability. keep in mind that likely less than 5% of l-dopa gets into the brain, less than that gets to where it's needed in the brain and cabidopa does not pass the BBB.

as far as the HINZ protocol goes, seems most posters start off saying it's better than C/L then eventually stop it. and very few users describe the cost and difficulty taking grams of mucana plus the inherent conflict of interest having to buy branded OTC supplements from the same person who prescribes it, which is why we have pharmacies. just my opinion.

Before carbidopa was invented PD's had to take grams of l-dopa and had terrible nausea and it wasn't until carbidopa was added did l-dopa become the "gold" standard.
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Old 08-23-2016, 10:33 AM #76
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Originally Posted by soccertese View Post

as far as the HINZ protocol goes, seems most posters start off saying it's better than C/L then eventually stop it. and very few users describe the cost and difficulty taking grams of mucana plus the inherent conflict of interest having to buy branded OTC supplements from the same person who prescribes it, which is why we have pharmacies. just my opinion.
I have no problem measuring the Mucuna. I weigh 13.5g and dissolve it in 16 oz of water, then pour 4 oz at a time 4 t/d. As to the need to buy from the same source, I researched how much it would cost to buy all individual components separately from good manufacturers and it amounts close to the same. The Mucuna powder I use comes from a Canadian manufacturer as opposed to the Dr. Hinz store. I am also sympathetic to buying from Dr H, because, unlike pharmaceuticals, he has no patents on any of these products and the time coaching health practitioners on the protocol has to generate some revenue. My Dr. has consulted with Dr. H at least 3 times in three months to help tuning up the dosage.
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Old 08-24-2016, 02:08 AM #77
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Default Some similarities in experiences

Hercules957 said:

"...starting about one hour after ingestion of 1 1/2 100/25 Sinemet."

There are some similarities to my experience, although mine started sooner than yours, and didn't last as long as yours did. I'll just copy and paste a description of it, which I wrote on another thread a couple of months ago:

"My neuro thought my tremor could be improved by increasing my dosage of Madopar 125 from 3 tablets per day to 4.5 tablets per day. When I tried the new dosage I experienced dystonic dyskinesia in my right foot (it started about half an hour after I took the new dose, and lasted for about one hour). I reduced the dosage back to 3 tablets per day but the dyskinesia still occurred. I then changed to taking half a tablet 6 times a day, and the dyskinesia stopped occurring."

Anyway, I hope things continue to go well with the Mucuna. Please post an update if anything significant happens (good or bad) down the track.
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Old 08-24-2016, 08:42 PM #78
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Originally Posted by jeffreyn View Post
Hercules957 said:

"My neuro thought my tremor could be improved by increasing my dosage of Madopar 125 from 3 tablets per day to 4.5 tablets per day. When I tried the new dosage I experienced dystonic dyskinesia in my right foot (it started about half an hour after I took the new dose, and lasted for about one hour). I reduced the dosage back to 3 tablets per day but the dyskinesia still occurred. I then changed to taking half a tablet 6 times a day, and the dyskinesia stopped occurring."

Anyway, I hope things continue to go well with the Mucuna. Please post an update if anything significant happens (good or bad) down the track.
Hi Jeffreyn, thanks for sharing. It gives me hope of a fall back position if my Mucuna experience goes South.
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Old 08-24-2016, 10:33 PM #79
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Default Buying time ?

Hercules957 said:

"It gives me hope of a fall back position . . ."

Yes.

I'm aware, of course, that mine may be only a temporary solution. "Temporary" has turned out to be nearly a year so far. It has bought me time to learn about other things I could try if/when the problem returns, and possibly even time for new discoveries/options to become available.
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Old 08-26-2016, 01:49 PM #80
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I use mucuna and have for 7-8 years.....im on my 15th year of pd and still off the traditional poisons...(pills).


peace

BP
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