Parkinson's Disease Tulip


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Old 07-13-2017, 08:12 AM #11
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Yes I think one does need to experiment with different brands and forms of mucuna. After reading LFCs' post I pulled out my bag of Banyan Botanical mp to try it again with no result so I'm back to the extract..Source Naturals' capsules also work for me very nicely. i think it is a good thing to vary dosage and timing of administering this medication...at least for me that is true as doing that seems to allow me to decrease dosage at times and I look for signals from my body for information in real time though iit may be that other people need a set regimen.

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Old 09-01-2017, 10:48 PM #12
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Quote:
Originally Posted by lurkingforacure View Post
I can add from a personal experience that we have used mucuna powder for years, as an add-on to sinemet. I have posted here about it before, so you can search the forum for my past posts about this.

Years on, we still take it, and the reasons are still pretty much the same:

1. it will take effect, reliably, which has become more of an issue as we're further into this illness, because sinemet doesn't always (and increasingly frequently, never) takes effect (read: waiting around, stuck and miserable, waiting for sinemet to kick in...waiting....waiting);

2. it will take effect even if we've eaten;

3. it will take effect within 15 minutes usually, which is great if you're frozen or just stuck;

4. it is cheap: a one pound bag of ground mucuna is around $25.00, including shipping, from Banyan Botanicals (no relationship to this company other than years as a mucuna customer!);

5. the bag will lasts a long time: our dose is a Tablespoon whenever we need it (mixed in a small Dixie cup with water...tastes horrible, so have something else ready to drink as soon as you take the mucuna, to get that taste out of your mouth. A few times we made milkshakes and put the mucuna in there, which was delicious and did mask the mucuna taste, but you lose a lot in the blender as it sticks to the sides and of course, one can't be drinking a milkshake two or three times every single day!). Our doc has been great about letting us set the mucuna schedule, since the alternative is to up the sinemet which none of us wants to do unless absolutely necessary.

I've never done the calculations, but a one pound bag of mucuna has a loooot of tablespoon-sized doses in it.

I don't know where we would be if we didn't have mucuna, it's been that helpful. I know we'd be taking a lot more sinemet, and although we have had to increase that over the years, I believe that increase has been a lot less because of the mucuna.

I hope this helps others. FWIW, we have tried almost everything out there, and nothing helped us except mucuna.

Also should know that mucuna hits quickly, but also wears off just as fast, so you could be left in a bad way unless you've planned accordingly (back-up mucuna, overlap mucuna with sinemet dose, be home and piled on the sofa when it wears off, etc.)
ok, I'm am going to buy for my brother who has PD. Can you suggest the dosage he should start on? Any other info on your experience would be appreciated.
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Old 09-02-2017, 08:58 PM #13
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ok, I'm am going to buy for my brother who has PD. Can you suggest the dosage he should start on? Any other info on your experience would be appreciated.
Everyone is different, so not really. The first thing you need to make sure of is that he isn't allergic to the bean that mucuna is made from! Read up on that and make sure it is ok for him to take mucuna first.

When we began taking mucuna, we started with 1.5 teaspoons of the powder mixed in half a small dixie cup of water. I think it's like sinemet: if you take too small of a dose, there won't be enough of a therapueutic benefit to help, so it's a waste, but of course you don't want to take too much, either.

We started off with a small amount and saw how that worked and have increased over time as it takes more to get the same benefit now. We're now up to a tablespoon for a dose, which is a lot to gag down. We've never had dyskenisias on mucuna, by the way, which is a huge plus. Maybe we've never taken enough to bring those on, as we're pretty careful, but I thought I would mention that.

The key is to go slowly and carefully note how he feels: he knows his body best and is also best able to tell how a given dose is affecting him. He might want to keep a log so he can easily refer back to what he wrote w/r/t what dose worked, how quickly, for how long, etc., and what dose didn't...and also share with his neuro, because he will need to let his neuro know he is taking mucuna, how much, how often, etc. and get his/her input. Some neuros are more supportive of therapies like this than others, of course.
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Old 09-03-2017, 03:45 PM #14
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Originally Posted by lurkingforacure View Post
Everyone is different, so not really. The first thing you need to make sure of is that he isn't allergic to the bean that mucuna is made from! Read up on that and make sure it is ok for him to take mucuna first.

When we began taking mucuna, we started with 1.5 teaspoons of the powder mixed in half a small dixie cup of water. I think it's like sinemet: if you take too small of a dose, there won't be enough of a therapueutic benefit to help, so it's a waste, but of course you don't want to take too much, either.

We started off with a small amount and saw how that worked and have increased over time as it takes more to get the same benefit now. We're now up to a tablespoon for a dose, which is a lot to gag down. We've never had dyskenisias on mucuna, by the way, which is a huge plus. Maybe we've never taken enough to bring those on, as we're pretty careful, but I thought I would mention that.

The key is to go slowly and carefully note how he feels: he knows his body best and is also best able to tell how a given dose is affecting him. He might want to keep a log so he can easily refer back to what he wrote w/r/t what dose worked, how quickly, for how long, etc., and what dose didn't...and also share with his neuro, because he will need to let his neuro know he is taking mucuna, how much, how often, etc. and get his/her input. Some neuros are more supportive of therapies like this than others, of course.
Thank you! Really good info. I'll let u know how it goes.
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Old 09-04-2017, 10:34 AM #15
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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 #16
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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.
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 #17
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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
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 09-05-2017, 09:28 AM #18
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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 #19
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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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Old 09-07-2017, 02:15 AM #20
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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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