Parkinson's Disease Tulip


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Old 09-04-2017, 10:34 AM #1
soccertese soccertese is offline
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just curious, what pharmaceutical pd drugs has your brother tried? has he tried plain old carbidopa/levodopa? if he has tried it and gets no benefit then he won't do any better on mucana. if he's looking to just start something for the first with l-dopa in it, it has always made more sense to me to start with c/l to get a baseline and then work in mucana, which can take awhile to get the right product and dosage. keep in mind that you have no guarantee that every batch of mucana is what it says it is.
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Old 09-04-2017, 03:32 PM #2
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Originally Posted by soccertese View Post
just curious, what pharmaceutical pd drugs has your brother tried? has he tried plain old carbidopa/levodopa? if he has tried it and gets no benefit then he won't do any better on mucana. if he's looking to just start something for the first with l-dopa in it, it has always made more sense to me to start with c/l to get a baseline and then work in mucana, which can take awhile to get the right product and dosage. keep in mind that you have no guarantee that every batch of mucana is what it says it is.
I'm going to take issue with this, ST, although I appreciate and/or agree with the vast majority of your posts (great minds think alike, eh?)

We don't get much benefit from sinemet, sometimes none at all, and this has been our reality for a long time. Maybe if we did, we wouldn't be so beholden to mucuna. But we DO get therapuetic benefit from mucuna, consistently, even though the bloom has been off the sinemet rose for quite awhile.

I'm not sure it's correct to predict that if someone doesn't benefit from sinemet they won't benefit from mucuna. That has not been true for us, at least. Mucuna works for us when sinemet doesn't, with food, when you're stuck, frozen, stiff, feeling like crap, etc. After hearing us talk about it for years, our neuro was curious enough about it to ask for the dose and brand we used
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Old 09-04-2017, 05:33 PM #3
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I'm going to take issue with this, ST, although I appreciate and/or agree with the vast majority of your posts (great minds think alike, eh?)

We don't get much benefit from sinemet, sometimes none at all, and this has been our reality for a long time. Maybe if we did, we wouldn't be so beholden to mucuna. But we DO get therapuetic benefit from mucuna, consistently, even though the bloom has been off the sinemet rose for quite awhile.

I'm not sure it's correct to predict that if someone doesn't benefit from sinemet they won't benefit from mucuna. That has not been true for us, at least. Mucuna works for us when sinemet doesn't, with food, when you're stuck, frozen, stiff, feeling like crap, etc. After hearing us talk about it for years, our neuro was curious enough about it to ask for the dose and brand we used
I agree with lurk that sometimes we don't get much benefit from Sinemet, sometimes none at all especially when eating some protein foods not "planned". This is a big problem for me because you cannot give up meat, fish and those with good nutritious resources you need. Does MP interfere with any common protein food? Is this the reason that you take the MP at the same time with Sinemet if MP does interfere with protein? Thanks/Will
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Old 09-07-2017, 07:53 PM #4
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I agree with lurk that sometimes we don't get much benefit from Sinemet, sometimes none at all especially when eating some protein foods not "planned". This is a big problem for me because you cannot give up meat, fish and those with good nutritious resources you need. Does MP interfere with any common protein food? Is this the reason that you take the MP at the same time with Sinemet if MP does interfere with protein? Thanks/Will
We are unfortunately in that group of people who can't eat so much as a cracker without it interfering with sinemet. Early on we tried to skip eating all day, and that did give our best effect with sinemet, but that is just not possible to sustain. Who can go without eating all day so their sinemet works, day after day? We couldn't.

Enter mucuna. We can have oatmeal, a salad, toast, even a breakfast taco or sandwich, and the mucuna will still take effect. Obviously the heavier the meal the longer the mucuna will take to hit, but unless we've eaten a steak and basket of fries, we can actually eat and still get benefit from mucuna.

This is our experience, though, and everyone is different. I personally believe there are compounds in mucuna we don't know about that impact its efficacy. I'm no chemist, but I do know how we feel when we take sinemet and how we feel when we take mucuna.
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Old 09-07-2017, 11:56 PM #5
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Originally Posted by lurkingforacure View Post
We are unfortunately in that group of people who can't eat so much as a cracker without it interfering with sinemet. Early on we tried to skip eating all day, and that did give our best effect with sinemet, but that is just not possible to sustain. Who can go without eating all day so their sinemet works, day after day? We couldn't.

Enter mucuna. We can have oatmeal, a salad, toast, even a breakfast taco or sandwich, and the mucuna will still take effect. Obviously the heavier the meal the longer the mucuna will take to hit, but unless we've eaten a steak and basket of fries, we can actually eat and still get benefit from mucuna.

This is our experience, though, and everyone is different. I personally believe there are compounds in mucuna we don't know about that impact its efficacy. I'm no chemist, but I do know how we feel when we take sinemet and how we feel when we take mucuna.
Thank you Lurk! I do not care what are these compounds as long as they still kick in and give me the "ON" I need. I currently take 4 bills of Sinemet + 1 Sinemet ER for night. I have been as such for 1-1/2 years and so far no Dyskinesia observed. My doc does not want me to take Sinemet for more than 6 bills a day. I have to eat protein in order to prevent from losing weight and muscles and keep myself to have the energy to walk at least 1 mile a day. I will try MP... Thanks/Will
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Old 09-05-2017, 09:28 AM #6
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Quote:
Originally Posted by lurkingforacure View Post
I'm going to take issue with this, ST, although I appreciate and/or agree with the vast majority of your posts (great minds think alike, eh?)

We don't get much benefit from sinemet, sometimes none at all, and this has been our reality for a long time. Maybe if we did, we wouldn't be so beholden to mucuna. But we DO get therapuetic benefit from mucuna, consistently, even though the bloom has been off the sinemet rose for quite awhile.

I'm not sure it's correct to predict that if someone doesn't benefit from sinemet they won't benefit from mucuna. That has not been true for us, at least. Mucuna works for us when sinemet doesn't, with food, when you're stuck, frozen, stiff, feeling like crap, etc. After hearing us talk about it for years, our neuro was curious enough about it to ask for the dose and brand we used

LURKING, i respect your knowledge and opinions. i hope you won't be insulted by this discussion. chemistry is chemistry, and l-dopa is going to be affected by too much protein whether it comes from C/L or mucana. to me,.at least, it seems you are implying there are compounds in mucana other than l-dopa that are not amino acids that reverse pd symptoms? like taking a dopamine agonist that isn't affected by food? or is it by chance you are just taking a lot more l-dopa which is able to get to your brain? keep in mind you only need a tiny amount of l-dopa to get to the brain per dose, likely no more than a normal agonist dose which is less than 3mg. when i suffer from protein interference and am off i will take an extra 100mg C/L which sometimes gives me a quicker on than waiting 2hrs for the protein to clear. just throwing this out for discussion. i would like to accept everything posted here at face value but even when you state C/L never worked that well i ask myself what does that really mean - what doses did you try, how many different generics did you try, etc. sorry to be so difficult but just the way i am. always look forward to your posts.
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Old 09-06-2017, 01:25 AM #7
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This is an interesting discussion.

We all want to get the best out of our drugs, be it from levodopa/carbidopa or MP (yes I think of it as a drug) or both. The important thing is to find out in what circumstances L/C is best and when MP is best.

L/C and, more recently, L/C/E have almost always worked well for me. I've never taken MP.

L/C/E has the interesting side-effect that it turns your urine deep orange. So, provided your drug and urination cycles are in sync, you can see if a dose has taken. I find some doses are lost for reasons other than protein competition. I suspect this is due to two reasons:
- delayed gastric emptying, leading to levodopa being destroyed in the stomach;
- constipation stopping absorption in the upper colon.
Does L/C or MP have an advantage here?

What in MP takes on the role of carbidopa in L/C?

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 09-07-2017, 02:15 AM #8
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I have been taking mucuna for year and a half on daily bases. It helped me to cut down from taking 3x100/25 LC daily to 2x100/25 LC with addition of mucuna. My dosage and timing of taking LC and mucuna if very flexible depending if I am home or going out, what I eat, stress level, etc. I still work full time in the office from 8 to 4:30 Monday to Friday, five years after diagnosis. On working days I usually take 100/25 LC at 6:30am and 1 capsule of Dopa Mucuna at 7:20 with some cooked oatmeal and coffee (no protein). If I take only LC in the morning without mucuna, I am off in 2.5 hours or less: addition of mucuna extends my on time up to 4.5 hours. At 11:00 am I take half of 100/25 LC and 1 Dopa Mucuna capsule together and go for lunch at 12:00 (again I try to avoid protein). I take another half of 100/25 LC and 1 Dopa Mucuna around 3:00 pm and this is it for the day. But, if I have meeting at work for exempla at 2:00 I will take 1tsp of Zandopa mucuna powder mix in water half an hour earlier to maintain my on time and not to have to take meds while I am at the meeting (nobody at work knows that I have PD) . Also, stress will shorten my on time considerably, or cancel meds all together, so on a stressful morning I might take extra 1 tsp of Zandopa at 9:30 am. If I am going out in the evening I will increase my mucuna intake usually by taking 1tsp Zandopa 1-2 hr after I take half of the 100/25 LC with 1 Dopa Mucuna capsule. I try Banyan mucuna organic powder but it doesn’t work for me as well as Zandopa. On the weekends I take meds and mucuna on as needed bases trying to take less LC if I can. When I am taking LC with mucuna I have better and more dependable relive of my symptoms (tremor, stiffness, rigidity, drugging left foot, etc”). Increasing LC intake before I added mucuna really made me feel tired; I was falling asleep sitting at my desk. Mucuna doesn't seem to do that. I guess everyone has their own unique reaction to meds or mucuna. I think that the most important thing is to listen to your body and also when trying mucuna to find the brand and the dosage that works for you.
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Old 09-07-2017, 05:27 PM #9
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Hi Bogusia,
Sorry all for sort of going off the Mucuna thread but Bogusia I just wanted to take the subject of nobody at work knowing you have P.D.
Been there done that and its exceptionally hard work covering up when there are off times if and when people if they did know could well turn out to be understanding, kind thoughtful and show they genuinely want to accomodate you in whichever way they can.
Just my thoughts but hiding something as obvious as PD is hard work.
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