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-   -   Mucuna Pruriens (https://www.neurotalk.org/parkinson-s-disease/27932-mucuna-pruriens.html)

ZucchiniFlower 02-14-2008 06:54 PM

Quote:

You know, with the whole bean powder we may not be simply dealing with l-dopa alone.
Rick, it's definitely NOT l-dopa alone. All of the articles state that. If given the same amount of L-dopa, people on Sinemet and HP200 don't have the same result. HP-200 works 2 to 3 times better. There are a few theories as to why: it may contain something like carbidopa.

The article above states mucuna contains NADH and COQ10 and it increased mitochondrial Complex 1 activity.

It seems to be neuroprotective, too. It's a wonder drug, really because it's great for other problems, too. Read that PDF
above. I think the NADH is very important.

Imark, I trust Zandopa over the supplements, too. I want to use the Zandopa because it was used in clinical trials. I don't recall it being expensive. I think I have the link to the company in India in a sticky on this site. It arrived in 9 days. I think I paid with PayPal.

Here's the link:

http://mall.coimbatore.com/bnh/zandu/zandopa.htm

Cost is $12.95 per 175 grams (at 5 g per day, Rick, that's 35 days). And buy four, get 100g free (I did that).
Price includes shipping worldwide. No, it doesn't. It's free over $100. But the shipping cost is low..only $2 no matter how many.

They suggest a 7.5 gram dose suspended in 100 ml water.

reverett123 02-15-2008 03:36 PM

I've been a lousy white rat so far
 
I let myself run out of capsules and didn't have time to make some more and so things kind of went on hold.

But today I started with just my "official" regimen of 1 sinemet CR and 1 requip at 7:00 AM. I skipped the ginseng for the sake of science and also because I was long past due a drying-out period for it. Slow start, came on about 9:00 AM. Had breakfast, then 2nd official meds of 1 requip at 10:00 AM. "Off" by 11:00!

Next meds at 1:00 were 1 requip and 1 sinemet CR but still off at 1:30! (I assume the absence of ginseng) So at 1:40 PM, in a pharmaceutical rage I downed one teaspoon of powder. Came on nicely 45 minutes later and remain so now after about 1 and 1/2 hours. Slight "lip pursing" but otherwise in good shape.

BTW, I checked the label and I am using a US grown organic from "Banyan Botanicals" of New Mexico.

Next meds should be 1 requip at 4:00 but I think that I will "stress test" this puppy and see when it starts to fade. Heck of a way to spend a Friday night...

reverett123 02-16-2008 10:51 AM

update
 
Yesterday I stayed on with no further meds or mucuna until 7:30PM, which was pretty impressive. Then I went "off" relatively quckly (I know it is spelled incorrectly but it makes such a neat word! :-) ) over a ten mnute span. Took another teaspoon of mucuna mixed with apple sauce and waited....and waited....and etc. Nothing. Gave up and hobbled to bed about 10:00. Slept well and woke up at 7:30 in decent shape. Took 1 sinemet and 2 requip and 1 tsp mucuna. Came "on" in half an hour which is half my usual. It is now 10:30 and I am still in good shape.

About last night. (How's that for an intro? :D ) The dose in early afternoon was with water but the later one was apple sauce. While my first thought was that the earlier one benefitted from lingering carbidopa, it might be that the pectin in the apple sauce altered absorption.

Time will tell.

ZucchiniFlower 02-16-2008 04:54 PM

I was going to ask if you also drank water along with the applesauce. I think a suspension of mucuna is absorbed better than the powder mixed with apple sauce. I'm going to mix mine with water, with a small electric mixer and see if it's tolerable like that.

Your capsules plus water worked well, though, so maybe mucuna plus apple sauce plus water would work fine.

reverett123 02-16-2008 06:52 PM

report
 
No I didn't drink water with it so that may make the difference. Today I took a second teaspoon at 1:00 PM and am still on at 7:00 PM. I think I will try a fourth requip now and see if I coast on in to bed.


Quote:

Originally Posted by ZucchiniFlower (Post 217229)
I was going to ask if you also drank water along with the applesauce. I think a suspension of mucuna is absorbed better than the powder mixed with apple sauce. I'm going to mix mine with water, with a small electric mixer and see if it's tolerable like that.

Your capsules plus water worked well, though, so maybe mucuna plus apple sauce plus water would work fine.


Ling2 02-16-2008 08:25 PM

some sharing
 
Dear Reverett,

Thanks for your detailed and unreserved report on Mucuna. Usually, I will take HP200 in the morning if the stalevo is slow to kick in or if I want a quick start for work. On Dec, I took one teaspoon (7.5g) half an hour after stalevo and was "on" for 6 to 7 hours or even longer BUT with mild dyskinesia:(. Noticing that it may be too much for me, I reduced it to 1/3 teaspoon and the "on" time has substantially shortened yet it gave me a quick start.

LING

ZucchiniFlower 02-16-2008 10:01 PM

Ling, how to you take yours? Do you mix it with water and drink the suspension? And how long does it take to kick in? Thanks.

Ling2 02-16-2008 10:44 PM

with water
 
I dissolve the HP200 powder in water and it takes about 25 to 30 minutes to kick in.

LING

Mira 02-17-2008 12:42 AM

new member and confused
 
Quote:

Originally Posted by reverett123 (Post 217280)
No I didn't drink water with it so that may make the difference. Today I took a second teaspoon at 1:00 PM and am still on at 7:00 PM. I think I will try a fourth requip now and see if I coast on in to bed.

Hi. I am a new member. (Frankly, I'm not happy about being a member). I've been sitting here next to my husband, who is watching "The Bourne Ultimatum" for the 6th time while I have read every posting of this thread. My brother, who is not a doctor, (but plays one on television) has been trying to persuade me to begin using mucuna pruriens. I liked the concept but my problem has been that I am unclear about 1. where to get it; 2. what brand or formula to get, 3. how much to take with my regular medication, and 4. what are the negative side effects??

After reading all these comments, I now know even less. Maybe someone could give me a SIMPLE answer to the above questions. (You can bill in the morning.) My stats are that I started getting PD symptoms @ 45. I am now 52 (yikes!). I have been on sinemet 25/100 for 1.5 years and I am finding that it is not losing its potency, but rather its longevity. When I first started using it, I took 3 pills/day along with 3 pills /day of Mirapex. The longevity of the medication has decreased so quickly that in order to function "normally" I now have to take 5-6 doses per day and the longevity is still getting shorter.

I would love to take anything to improve my symptoms. As an aside, when I asked my doctor about mucuna, she feigned not knowing what I was talking about. Also that if there was stuff that worked that well, that the main medical community (not pharmaceutical) would jump on it. (She also warned me about getting info from the Internet.) BTW, my doctors are the big cheeses at Columbia Presbyterian NYC (allegedly some of the best around ).

So, any words of wisdom oh great ones? (The movie just ended, I'm off to bed.)

Mira

lou_lou 02-17-2008 05:53 AM

dear mira
 
dear dear mira,
do you actually believe anyone of us are happy to be ill?
some members are here just to help others, and by doing so - they are helping themselves...
I am a PD patient/ advocate for cures... :)
if life throws you lemons - hey keep them because they are free, you can make many things from lemons, besides lemonade... :hug:
and to answer your question - the meds cause the body to lose essential minerals and vitamns - levadopa/carbidopa causes potassium deficiency -you may want to research B-12,
you do not get answers fron the neurotalk community - you get research ideas for yourself, ps - start with your attitude, you hate to be here, you know all the big cheeses, your brother is on tv -he's trying to give you ideas, to help you not harm you... do you dislike yourself and the world around you because you view illness as weakness?
you do the research we give the clues to what has helped us - I personally have had the scourge for 15 years and I am 45 years old ...
if you feel it unfair I tell you to research and try to see light instead of shear dread - do not worry - I wont bill you... :D lol
you can view in search of a champion -the documentary made by some of the finest PD patients I have ever met...
www.pwnkle.com/champion.htm
sincerely, aka a great one - if you want to meet great people - you wil find them here...
Albert Einstein quote - Great spirits have always encountered violent opposition from mediocre minds
tena


Quote:

Originally Posted by Mira (Post 217517)
Hi. I am a new member. (Frankly, I'm not happy about being a member). I've been sitting here next to my husband, who is watching "The Bourne Ultimatum" for the 6th time while I have read every posting of this thread. My brother, who is not a doctor, (but plays one on television) has been trying to persuade me to begin using mucuna pruriens. I liked the concept but my problem has been that I am unclear about 1. where to get it; 2. what brand or formula to get, 3. how much to take with my regular medication, and 4. what are the negative side effects??

After reading all these comments, I now know even less. Maybe someone could give me a SIMPLE answer to the above questions. (You can bill in the morning.) My stats are that I started getting PD symptoms @ 45. I am now 52 (yikes!). I have been on sinemet 25/100 for 1.5 years and I am finding that it is not losing its potency, but rather its longevity. When I first started using it, I took 3 pills/day along with 3 pills /day of Mirapex. The longevity of the medication has decreased so quickly that in order to function "normally" I now have to take 5-6 doses per day and the longevity is still getting shorter.

I would love to take anything to improve my symptoms. As an aside, when I asked my doctor about mucuna, she feigned not knowing what I was talking about. Also that if there was stuff that worked that well, that the main medical community (not pharmaceutical) would jump on it. (She also warned me about getting info from the Internet.) BTW, my doctors are the big cheeses at Columbia Presbyterian NYC (allegedly some of the best around ).

So, any words of wisdom oh great ones? (The movie just ended, I'm off to bed.)

Mira


Ling2 02-17-2008 07:10 AM

My Answers
 
Dear Mira,

My answers are:

1. My doctor prescribed it directly from the manufacturer - The Zandu Pharmaceutical Works Ltd , in India BUT i know some members got it via other sources.

2.Brand Name is Zandu (HP200) in power form.

3. How much to take: it's a matter of trial and error but the starting dose is one to two standard teaspoon daily (7.5 g) . Remarks: My two cents is to start Mucuna alone (but make sure that you dont have any key event to attend) to evaluate how your body respond to it and make adjustment.

4. side effects: similar to sinemet in the long term and when overdosed ie dyskinesia / headache

I dont like to be here too but I like the people here as I learn and get so much support from buddies here.

LING
dx at age 36
Now 43
HK

Mira 02-17-2008 08:52 AM

Dear CTenaLouise, thanks for the quick reply. (BTW, my brother does not play a doctor on TV...that was a joke.) Frankly, I didn't think my comment was that negative, except for the parenthetical statement that I was not happy about being a member. In any event, forgive me if I was. I neither feel sorry for myself nor do I ever complain ...to anyone. In fact, I am quite the opposite. I tend to stick my head in the sand, ignore my illness and pretend I'm fine. Nevertheless, I would still entertain and appreciate specific answers to my questions. The comments about my Mds was not to show off but rather to comment about their unwillingness to consider treatments outside the conventional.

Mira 02-17-2008 08:55 AM

Thank you Ling. Just what I needed. Do I find the the address for the Indian manufacturer in the internet?

Ling2 02-17-2008 09:32 AM

address
 
here you go... "70, Gokhale Road South, Mumbai - 400 025, India"

reverett123 02-17-2008 10:16 AM

I won't claim to be a great one
 
but I will usually throw in two cents worth.

But first, last night's report. Took one requip about 7:00 PM and was on until about 9:30. If I counted right that means that I took four requip instead of six and two sinemet instead of three. Promising.

First, don't let anyone upset you. We're all on drugs. :D

I got your doctor/TV joke - one of my favorites.

My age, diagnosis, etc are similar to yours although my symptoms are a bit more advanced. If I remember right, the sinemet you are taking is the standard rather than time release sort. It might improve things if the two types were combined. The goal is to avoid a roller coaster effect. That can be destructive in itself in that the repeated "surge" is thought to damage the system. But you don't want to take too much because that leads to motor problems. So, we walk a tightrope- get enough in the system as quickly as possible in the morning and then cut back to just enough for the rest of the day. Kind of like bringing something to a boil and then simmering it the rest of the day.

One thing you might try with the Zandopa or even the sinemet standard type is an old trick of dissolving a day's worth in a bottle of water and taking a sip ever hour or so. This gives you more control over your dosing. Also, be aware that you need different amounts at different times of the day. It is one constant experiment I'm afraid.

Your doctor's ignorance is only exceeded by her faith in the medical community and I fear that she is typical. They don't teach these things in medical school and no Pharma detail man is going to mention it. Even if she did know it would cost her her license to suggest it. We are very much on our own out here.

Many doctors disapprove of the Net because there is a lot of bad info out there. But many disapprove because an uppity patient is a real pain in the butt. Learn to use the Net but verify. One place to start is the forum search right here.

Welcome aboard!


Quote:

Originally Posted by Mira (Post 217517)
Hi. I am a new member. (Frankly, I'm not happy about being a member). I've been sitting here next to my husband, who is watching "The Bourne Ultimatum" for the 6th time while I have read every posting of this thread. My brother, who is not a doctor, (but plays one on television) has been trying to persuade me to begin using mucuna pruriens. I liked the concept but my problem has been that I am unclear about 1. where to get it; 2. what brand or formula to get, 3. how much to take with my regular medication, and 4. what are the negative side effects??

After reading all these comments, I now know even less. Maybe someone could give me a SIMPLE answer to the above questions. (You can bill in the morning.) My stats are that I started getting PD symptoms @ 45. I am now 52 (yikes!). I have been on sinemet 25/100 for 1.5 years and I am finding that it is not losing its potency, but rather its longevity. When I first started using it, I took 3 pills/day along with 3 pills /day of Mirapex. The longevity of the medication has decreased so quickly that in order to function "normally" I now have to take 5-6 doses per day and the longevity is still getting shorter.

I would love to take anything to improve my symptoms. As an aside, when I asked my doctor about mucuna, she feigned not knowing what I was talking about. Also that if there was stuff that worked that well, that the main medical community (not pharmaceutical) would jump on it. (She also warned me about getting info from the Internet.) BTW, my doctors are the big cheeses at Columbia Presbyterian NYC (allegedly some of the best around ).

So, any words of wisdom oh great ones? (The movie just ended, I'm off to bed.)

Mira


Mira 02-17-2008 10:55 AM

Whew!! I thought I was in the dog house before I started.

reverett123: Your suggestions sound fascinating. Your absolutely right. I am getting the roller coaster effect. Its annoying as hell....especially when I am with a client and all of a sudden I start to crash. And boy does it happen quickly. One minute I'll be feeling great and then five minutes later I feel like...well, you know what.

Are you saying that I can dissolve my mixture of Mirapex and Sinemet in my 12oz. bottle of Poland Spring and sip it throughout the day? And the medication remains just as effective??? If that's what you are saying I will try it today. BTW, rather than trying to obtain Mucuna from from India (I am basically lazy), is there a reliable source here in the US and how can I reach them??

Many thanks.

reverett123 02-17-2008 11:23 AM

amazingly, amazon
 
Or at least they did have retailers for the raw powder. If you want the Zandopa you may have to look further, but the last time I looked there were plenty of places selling it.

The roller coaster is more than annoying. It is whittling years off your life. And yes that is the way to do the sinemet but I don't know about the mirapex. The sinemet will last longer if protected from light (it turns black).

And yes, we don't get a lot of warning when the crash is coming. Once you sense it it is too late. The defense is sticking to a schedule of some sort.

You mentioned it being a problem when dealing with a client. You do realize that you have one of the most stress-sensitive disorders going, don't you? Both as cause and as a trigger for symptoms. If you have a high stress job, start looking for the exit now.
-Rick

Quote:

Originally Posted by Mira (Post 217640)
Whew!! I thought I was in the dog house before I started.

reverett123: Your suggestions sound fascinating. Your absolutely right. I am getting the roller coaster effect. Its annoying as hell....especially when I am with a client and all of a sudden I start to crash. And boy does it happen quickly. One minute I'll be feeling great and then five minutes later I feel like...well, you know what.

Are you saying that I can dissolve my mixture of Mirapex and Sinemet in my 12oz. bottle of Poland Spring and sip it throughout the day? And the medication remains just as effective??? If that's what you are saying I will try it today. BTW, rather than trying to obtain Mucuna from from India (I am basically lazy), is there a reliable source here in the US and how can I reach them??

Many thanks.


mans00r 02-17-2008 01:20 PM

PD treatment with Mucuna Pruriens showed Positive result over Sinemet/Mirapex
 
Since 4 yrs my father was on Sinemet n the PD condition was worsening. Entacapone was added two yrs back followed by Mirapex last yr. The condition worsened more. Then i introduced Zandopa systematically reducing Sinemet/Mirapex to none at all. This has worked better. Presently im giving 2X7.5 gms Zandopa 6 times a day with 4 hrs gap. 2.5 hrs he is fi9 n 1.5 hrs he is frozen as compared to 1.5 hrs fi9 n 2.5 hrs frozen upon taking Sinemet/Entacapone/Mirapex. The result is improving day by day. Thanks to Almighty who rendered me with this age old treatment n proving that nature provides far more benefits to mankind than the synthetic drugs.

Food is taken half an hour after Zandopa followed by Supplements.

Supplements include:-

800IU BioE-4times a day

100mg Vitamin C-4times a day

2 Tabs VegEPA- 4 times a day

100mg Pycnogenol- 4 times a day

Now EGCG- 4 times a day

ZucchiniFlower 02-18-2008 03:32 PM

A REPOST FOR MIRA AND OTHERS:

I PAID WITH PAYAPAL.

I trust Zandopa over the supplements, too. I want to use the Zandopa because it was used in clinical trials. I don't recall it being expensive. I think I have the link to the company in India in a sticky on this site. It arrived in 9 days. I think I paid with PayPal.

Here's the link:

http://mall.coimbatore.com/bnh/zandu/zandopa.htm

Cost is $12.95 per 175 grams (at 5 g per day, Rick, that's 35 days). And buy four, get 100g free (I did that).
Price includes shipping worldwide. No, it doesn't. It's free over $100. But the shipping cost is low..only $2 no matter how many.

Mira 03-04-2008 08:52 PM

Ok folks, my Zandopa arrived today. I just took 1/2 my dose of sinemet (25/100), 1/2 my dose of mirapex (1mg) and 4 gm. Zandopa. I am expecting what??? I have no idea. But Iwill let u know. It is now 8:45p.

ZucchiniFlower 03-04-2008 09:26 PM

Keep us posted, please!

Mira 03-06-2008 08:17 AM

Zandopa (Mucuna Pruriens) first time user
 
Quote:

Originally Posted by ZucchiniFlower (Post 229845)
Keep us posted, please!

Well, so far, I find: it tastes OK but since I take medication 5-6 times per day, its powder form requiring me to mix it with water is simply impractical. I am often not in a position to be able to mix the elixir when I need it. SO something has to be done about that. Therefore I was unable to use it every time I took a dose.

Second, it's definitely effective against the PD symptoms but my dose (4g + 1/2 tab of sinemet + 1/2 tab of mirapex) made me totally high, and wobbely, like I was on uppers. Same feeling I had when I accidently took two doses of my meds. Therefore, I will try a smaller amount.

However, it seems to be effective more quickly (15-20min) the regular meds (30-45min).

......To be continued....

reverett123 03-06-2008 04:57 PM

Same for raw powder
 
While I am waiting for delivery of my own Zandopa, I am trying the raw bean powder and have had much the same experience as Mira. Definitely a faster "ON". By half. And messy and inconvenient. I am tending toward a twice daily use - starter in morning and extender in evening.

Also, I am thinking of an emergency kit. A small bottled water and a large light-proof vitamin bottle with a pre-measured dose in it. Add water and shake :D


Quote:

Originally Posted by Mira (Post 230668)
Well, so far, I find: it tastes OK but since I take medication 5-6 times per day, its powder form requiring me to mix it with water is simply impractical. I am often not in a position to be able to mix the elixir when I need it. SO something has to be done about that. Therefore I was unable to use it every time I took a dose.

Second, it's definitely effective against the PD symptoms but my dose (4g + 1/2 tab of sinemet + 1/2 tab of mirapex) made me totally high, and wobbely, like I was on uppers. Same feeling I had when I accidently took two doses of my meds. Therefore, I will try a smaller amount.

However, it seems to be effective more quickly (15-20min) the regular meds (30-45min).

......To be continued....


ZucchiniFlower 03-06-2008 07:07 PM

There are some excellent mixer bottles available. One is by Lock & Lock and the other is the Blender Bottle:

http://kitchen-dining.hsn.com/blende...91804&ocm=sekw

The Qvc set is a better deal:

Lock & Lock 4-piece Pitcher and Mixer Set...

The link doesn't work: the Qvc.com number is K11019.

There are also larger blender bottles available.

Max19BC 03-07-2008 04:40 PM

I found using a small handheld blender works the best for mixing Zandopa with water. I will use a regular coffee mug, fill it half way with warm water, add Zandopa, mix with the blender and then I will add juice (cranberry, grape etc) for flavoring. This blender is inexspensive (under $20) and can be found at most homeware stores.
Take care, Max
PS I've been taking mucuna for 15 months now with excellent results, but I still need to add a little bit of Sinemet to help it along.

Mira 03-08-2008 11:26 AM

I have been carrying a small bottle of the powder with me with a little scoop but I can only mix it in my office where i have easy access to everything. The problem with doing it when u can is that your doing it inconsistently. I have no idea if that matters but I would think it does. (Not my first choice.)

Alternatively, we can carry with us 4-5 little plastic bottles that hold no more than 150ml. You fill each little bottle with your powder and take that with you. Then when u need a dose, just fill each bottle with 100ml of water (the recommended amount). Then close the lid and shake. Voila! The 5 bottles will be small. (2nd choice)

Alternatively, bring a small container with 5 small divisions or 5 small individual containers. You'll also need a mixing bottle with a large neck so u can get the powder in there and of course aqua. (3rd Choice)

Frankly, it all sounds pretty messy.

I think Rick's (reverett123) suggestion is the #1 choice with Zandopa powder unless they start putting it in pill form.

reverett123 03-08-2008 11:49 AM

stain removal
 
Hey! My wife has discovered that OxiClean Spray Laundry Stain Remover takes the black stain right off thesink.

reverett123 04-27-2008 02:26 PM

update
 
Still very much experimental. I find that a much smaller dose than expected is best for me. Five to fifteen grams with half a Sinemet CR. More than that and I have to watch out for dyskinesias.

It still gives me a fast "on" and I have cut the Sinemet by half and the Requip by a quarter.

Something odd this morning. Up at 4 AM thanks to my cat and dog having a heated debate. Decided to stay up but didn't want to mess with the powder at that hour so I took a full Sinemet. I knew it woud be awhile before it kicked in (1 to 2 hours expected) but I was just going to listen to music and veg.

Much to my surprise, even without the mucuna, it turned me on in under 30 min! That hasn't happened in a long time. Any ideas?

-Rick

Ibken 04-27-2008 03:05 PM

4 AM? Had you eaten anything when you took the SInemet? If I have eaten a large breakfast and/or not waited at least 2 hours after eating or did not poop the day before or am cold or upset....my first dose of the day may take much longer to kick in. SO many little factors........:o










Quote:

Originally Posted by reverett123 (Post 267691)
Still very much experimental. I find that a much smaller dose than expected is best for me. Five to fifteen grams with half a Sinemet CR. More than that and I have to watch out for dyskinesias.

It still gives me a fast "on" and I have cut the Sinemet by half and the Requip by a quarter.

Something odd this morning. Up at 4 AM thanks to my cat and dog having a heated debate. Decided to stay up but didn't want to mess with the powder at that hour so I took a full Sinemet. I knew it woud be awhile before it kicked in (1 to 2 hours expected) but I was just going to listen to music and veg.

Much to my surprise, even without the mucuna, it turned me on in under 30 min! That hasn't happened in a long time. Any ideas?

-Rick


reverett123 04-27-2008 06:23 PM

I had a boiled egg at the same time as I took it, which is my usual routine. I find that it stabilizes my blood sugar and gives a shot of choline. Protein has never been a problem for me. Quite the contrary. No apparent reason for the quick turn on.

Our systems are like a kid's spinning top. Young and healthy systems spin rapidly and smoothly. As we age the top slows down and begins to wobble. A gust of wind doesn't affect the fast spinner but it makes the slower one begin to wobble. It's as though our systems are like that. "Fragile" is a description more than one of us has used here. That is one reason I am drawn to purported adaptogens. They are the only thing that holds out the hope of being able to adjust such a complex system. I suspect mucuna of having some of those properties and, of course,inseng is a classic one.

Heck, checked my blood pressure just now. 122/75 I have not had any BP medication for about six months now. I had been taking it for 15 years or more. Whenever I would quit it within two days my BP would be up to 180 over 115. Now BP is controlled by a part of your nervous system that is affected by PD. Was it the ginseng? Or the mucuna? Both?

If it was the ginseng ( I have been laying off it for a month or more testing the mucuna) then that is evidence of something permanent having happened. The GI and bladder systems are still much improved as well. And my sleep pattern is much more normalized than a year ago.

lurkingforacure 04-27-2008 07:09 PM

That's great news
 
I would monitor those things that have improved very carefully since you have stopped the ginseng, to see if they stay as improved, continue to improve, or begin to decline. So hard to quantify, but it might help you determine which, if not both, of the agents was responsible for the improvements, mucuna or the ginseng. Whatever the case, it's great that you are feeling better AND taking less meds too, and thanks for sharing it all.

reverett123 05-01-2008 12:50 PM

More misgivings
 
This morning I had a major blood sugar problem. It was my own fault but it was also a warning shot across the bow. It started with cookies for breakfast. Stupid, I know. Anyway, I had a terrible morning. As I usually do when I have the miseries, I read. Among other things that I read was the post that TenaLouise put up on hypoglycemia.

Mucuna is effective at lowering blood sugar and we don't know how effective. Considering my experience this morning I suspect that with sustained use it may become very effective. So, that set me to some serious reexamination of MP. In addition to the question about blood sugar, I have a couple of others. One is about its anti-trypsin action. Like limas and soy, MP blocks an enzyme called trypsin in your GI tract that is needed to digest your food. Its absence can lead to, among other things, intestinal blockage. The heat of cooking breaks down the anti-trypsin factors. But MP powder is uncooked. So that is question number two.

Number three is related to the fact that it works so darned well. I am sure that it is more than just the extra ldopa. I could duplicate that with extra sinemet. In fact have done so on numerous occasions. It feels different and it comes on faster. It feels good, in fact. So, why?

The first two points have a little research behind them, but this last is pure speculation on my part. Take it for what it is worth. Some of you may remember the blue-green algae craze of about 15 years ago. Thanks to an aggressive MLM campaign, everyone was selling it and trying to line others up for their own "downline". At the time I looked into it and backed away. The bacteria involved were called cyanobacteria because they produce tiny amounts of cyanide and tiny amounts of cyanide make your nervous system "happy" - at least for awhile. It stimulates it in a way similar to cocaine.

Research on MP as animal feed shows cyanide in the raw bean. I haven't found how much but the answer is probably a tiny amount. It might explain the reason the stuff works so well. And that is the heartbreaking part. The damn stuff works very well.

I did find one study from 1999 where chickens were fed ground raw MP both raw and roasted and at levels as high as 30% of calories. The chickens that ate the raw bean for 40 days weighed only a third as much as the controls and had much higher mortalities.

http://scholar.google.com/scholar?hl...-8&oi=scholarr

Bummer.

Fiona 05-01-2008 03:39 PM

Hi Rick,
well, as always thanks for your courageous explorations of this topic and willingness to share your experience. I have been using mucunca for about ten days with mixd results, some very positive, but also a sense that it interferes with something in my digestion lately.

But before we entirely throw the baby out with the bathwater or whatever, the fact is that I have seen many reports on-line from people who have been using it for years and feel that it is effective and helpful. SO that makes me not to want to entirely push the eject button on this one... altho great caution is always advisable. That's just a prelim first reaction, but I' m going to think more about the whole thing. Others???

kk13 05-01-2008 04:36 PM

First Time
 
Tried it for first time today (DopaBean). It worked about as well as 1/2 of a 25/100 pill might, with no dyskinesia. I realize this is only "poking my toe in the water" but I want to tread very cautiously. I'll titrate slowly as I see positive results, hopefully. I'll keep you posted.

Keith
--------------------------------------------------------------


Quote:

Originally Posted by Fiona (Post 270801)
Hi Rick,
well, as always thanks for your courageous explorations of this topic and willingness to share your experience. I have been using mucunca for about ten days with mixd results, some very positive, but also a sense that it interferes with something in my digestion lately.

But before we entirely throw the baby out with the bathwater or whatever, the fact is that I have seen many reports on-line from people who have been using it for years and feel that it is effective and helpful. SO that makes me not to want to entirely push the eject button on this one... altho great caution is always advisable. That's just a prelim first reaction, but I' m going to think more about the whole thing. Others???


reverett123 05-01-2008 05:49 PM

Maybe I need to reboot
 
and start afresh. I was hoping it would be a viable replacement for either sinemet or requip so I was taking some pretty high daily totals and also spreading them throughout the day so there was no "break" in intake. One day I was up to 50 g total with no requip at all and two and a half sinemet cr and did just fine vis-a-vis PD symptoms. I did have belly cramps last night but I think we can write that off to the other two beans I had yesterday (pintos and kidney).

So I am going to take a day off and let the system settle, then begin again. But if I were early in the game and not taking so much dope already, I do think it would be very doable to buy some years just with the mucuna.

reverett123 05-04-2008 08:33 AM

Starting to make sense
 
Figured a few things out-
1- The bleeding question I raised about Zandopa is inherent to mucuna itself and is, in fact, used to advantage in treating certain bites of poisonous snakes. But it seems to require a high dose. Use your bleeding when you floss as a gauge.

2- There are enzymes in mucuna that block trypsin in your small intestine. Again, high doses over a sustained period can make it a serious problem. Heat breaks the anti-trypsin agent down without affecting the Ldopa. I had had two nights of stomach cramps. Baked the mucuna at 350 degrees F for five minutes and seems to have taken care of the problem.

3- I had been trying to use mucuna integrated in with the other meds. Sinemet, in particular, to piggyback on the carbidopa protection. In particular I wanted to take advantage of the fast "on" in the mornings. Started having major problems getting anything OTHER than the mucuna to work. Worried about the possibility of some shift in receptors. But KISS as they say. Mucuna acts so fast compared to meds and it has such a high protein content that it was blocking either the uptake from the gut or the receptors in the brain or both. By taking it first thing I was, in effect, starting a daily cycle that meant that mucuna was, indeed, the only thing that worked. Started today the old, pre-mucuna way and everything works like it did including the slow start.

So, now, I tinker with schedules.

-Rick

reverett123 05-16-2008 05:45 PM

And a final word (for now)
 
Much as I hate to, I am going to suspend my mucuna experiments, at least for now, due to some of the most painful stomach cramping I have experienced. This may just be me. I am pretty far along PD-wise and take lots of Requip and a fair amount of Sinemet. In seeking to replace them I was up to 50 g daily of mucuna and did, indeed, pretty much do without the store-bought stuff for a couple of days. But the cramping was kind of scary. Never experienced anything like it - just clamped down and held for several hours.

So, I am going to back off for awhile and maybe take a look at precursors. As to mucuna, if I were newly diagnosed I would be all over it and use it to avoid the meds as long as possible. I may well come back to it if I get down to where I don't need so much, but for now I'm saddlin' up and heading west. Going to start myself an amino ranch. :D

imark3000 05-17-2008 04:21 AM

reduce mucuna dose dramatically with same effect
 
Quote:

Originally Posted by reverett123 (Post 280612)
Much as I hate to, I am going to suspend my mucuna experiments, at least for now, due to some of the most painful stomach cramping I have experienced. This may just be me. I am pretty far along PD-wise and take lots of Requip and a fair amount of Sinemet. In seeking to replace them I was up to 50 g daily of mucuna and did, indeed, pretty much do without the store-bought stuff for a couple of days. But the cramping was kind of scary. Never experienced anything like it - just clamped down and held for several hours.

So, I am going to back off for awhile and maybe take a look at precursors. As to mucuna, if I were newly diagnosed I would be all over it and use it to avoid the meds as long as possible. I may well come back to it if I get down to where I don't need so much, but for now I'm saddlin' up and heading west. Going to start myself an amino ranch. :D

Rick: See below from an earlier posting. You can reduce mucuna dose dramatically with same effect if taken with reduced amount of sinemet

"But that's not the whole story: the enzymes which greet levodopa as it enters the brain have some identical twins in the bloodstream outside the brain. Levodopa which gets converted to dopamine in the peripheral bloodstream (that is, outside the brain) is of no use to the brain. The presence of these enzymes in the peripheral system means that for every molecule of levodopa that makes it to the BBB unchanged, there are many more that get converted to dopamine and get turned away. This creates a problem. You have to take a whack of levodopa in order for a sufficient dose to enter the brain. And then there's all that excess dopamine in the peripheral bloodstream looking for a home. Some of it can be used by your kidney; some can be used for regulating blood flow. The rest will cause nausea, vomiting and general unpleasantness.

Enter carbidopa. It acts as a bodyguard for levodopa, keeping enzymes at arms length. It does this well enough to allow five times as much levodopa to reach the brain. At the BBB, carbidopa gets turned away. This is convenient because once levodopa enters the brain we don't want carbidopa present to protect levodopa from the enzymes which will convert it to dopamine. When levodopa and carbidopa are taken together, a much higher percent of the levodopa reaches the rain. So the amount of levodopa taken can be reduced accordingly; this, in turn, prevents side effects by reducing the amount of excess dopamine in the peripheral bloodstream.

All levodopa pills come with enough carbidopa (or a similar drug) to protect the levodopa during its trip through our digestive system and bloodstream to the brain. Carbidopa is never 100% effective in its bodyguard action but it makes a big difference in the amount of levodopa that makes it to the brain.

Fava and mucuna beans do not appear to contain anything corresponding to carbidopa. From a medicinal point of view, the lack of carbidopa in the beans creates a problem. For an adequate dose of levodopa to reach the brain, a lot of beans have to be eaten. This is unhealthy, both because of the large amount of levodopa that gets converted to dopamine in the peripheral system and because beans typically contain small amounts of toxins. Bean toxins don't cause any difficulty if the beans are just eaten occasionally or in small amounts. But frequent meals of large helpings of beans would not be healthy.

In the USA, carbidopa is available by itself (under the trade name Lodosyn). Because it is a specialty item, it costs twice as much as a levodopa pill which has the same amount of carbidopa plus the levodopa. In Canada, Lodosyn is not an approved drug. So taking a Lodosyn pill with a small helping of beans is not an option.

At present, I have a prescription for 25 mg Carbidopa/ 100 mg Levodopa. Sometimes I just take the pill. But whenever convenient, which is most of the time, I break a pill in half and eat enough fava bean sprouts or mucuna bean powder to provide the other 50 mg levodopa. My assumption is that the bean levodopa will be able to piggy back on the carbidopa from the pill. Also, I know I am getting 50 mg levodopa from the pill so if my estimate of the levodopa content of the beans is a little off, the total error is less than it would be if I relied entirely on the beans. So far, this is working very well. But I'm in the early stages of PD and my system is more adaptable than it will be 10 years from now. "

lou_lou 05-17-2008 06:42 AM

DOMPERIDONE aka LODOSYN AKA MOTILIUM®
 
FOR THE EXTREME NAUSEA they used to have me fill a script in Canada
called DOMPERIDONEwhich is now called Lodosyn -of which I was able to get at KU
it was because my sinemet made me so nauseated I vomited...

http://www.medicinenet.com/domperidone-oral/article.htm
_________________

GENERIC NAME: DOMPERIDONE - ORAL (dom-PAIR-eh-doan)
Medication Uses | How To Use | Side Effects | Precautions | Drug Interactions | Overdose | Notes | Missed Dose | Storage

USES: This medication increases movement through the digestive system. It is used to treat symptoms of stomach disorders. It may also be used to prevent nausea and vomiting caused by certain medications. Due to safety concerns, this medication is not to be used by breast-feeding women to increase production of breast milk.


HOW TO USE: Take this medication by mouth as prescribed usually 30 minutes before meals and at bedtime. Do not increase your dose or take this more often than directed. Your condition will not improve any faster but the risk of side effects will be increased.

SIDE EFFECTS: Headache, dizziness, dry mouth, nervousness, flushing, or irritability may occur the first several days as your body adjusts to the medication. Trouble sleeping, stomach cramps, hot flashes and leg cramps have also been reported. If any of these effects continue or become bothersome, inform your doctor. Notify your doctor immediately if you develop: chest pain, slow/fast/irregular heartbeat, swelling of the feet or ankles, difficulty urinating, swelling of the breasts or discharge from the nipple in men or women, menstrual changes, sexual difficulties. If you notice other effects not listed above, contact your doctor or pharmacist.

PRECAUTIONS: Tell your doctor your medical history, especially of: history of breast cancer, allergies. Limit your intake of alcoholic beverages. This medication should be used only if clearly needed during pregnancy. Discuss the risks and benefits with your doctor. Domperidone passes into breast milk. Due to the potential risks to a nursing infant, breast-feeding while using this drug is not recommended. Consult your doctor before breast-feeding (see also Uses section).

DRUG INTERACTIONS: Because this medication enhances movement in the digestive tract, it may affect the absorption and action of other medications. Therefore, it is important to tell your doctor of any nonprescription or prescription medication you may take, especially of: MAOIs (e.g., furazolidone, phenelzine, selegiline, tranylcypromine). Do not start or stop any medicine without doctor or pharmacist approval.
______________

http://tinyurl.com/92feh

MOTILIUM®
Janssen-Ortho
Domperidone Maleate
Upper Gastrointestinal Motility Modifier

Action And Clinical Pharmacology: Domperidone is a peripheral dopamine antagonist structurally related to the butyrophenones with antiemetic and gastroprokinetic properties.

Domperidone effectively increases esophageal peristalsis and lower esophageal sphincter pressure (LESP), increases gastric motility and peristalsis, enhances gastroduodenal coordination and consequently facilitates gastric emptying and decreases small bowel transit time.

The mechanism of action of domperidone is related to its peripheral dopamine receptor blocking properties. Emesis induced by apomorphine, hydergine, morphine or levodopa through stimulation of the chemoreceptor trigger zone (situated outside the blood-brain barrier) can be blocked by domperidone. There is indirect evidence that emesis is also inhibited at the gastric level, since domperidone also inhibits emesis induced by oral levodopa, and local gastric wall concentrations following oral domperidone are much greater than those of the plasma and other organs. Domperidone does not readily cross the blood-brain barrier and therefore is not expected to have central effects.

Domperidone elevates serum prolactin levels but has no effect on circulating aldosterone levels.

The mechanism of action of domperidone is related to its peripheral dopamine receptor blocking properties. Emesis induced by apomorphine, hydergine, morphine or levodopa through stimulation of the chemoreceptor trigger zone (situated outside the blood-brain barrier) can be blocked by domperidone. There is indirect evidence that emesis is also inhibited at the gastric level, since domperidone also inhibits emesis induced by oral levodopa, and local gastric wall concentrations following oral domperidone are much greater than those of the plasma and other organs. Domperidone does not readily cross the blood-brain barrier and therefore is not expected to have central effects.

Domperidone elevates serum prolactin levels but has no effect on circulating aldosterone levels.

Pharmacokinetics: In man, peak plasma levels of domperidone occur within 10 to 30 minutes following i.m. injection and 30 minutes after oral (fasted) administration. Plasma concentrations 2 hours after oral administration are lower than following i.m. injection, and this is likely the result of hepatic first-pass and gut wall metabolism. Peak plasma concentrations are 40 ng/mL following an i.m. injection of 10 mg, 20 ng/mL after a single 10 mg tablet, and 70 to 100 ng/mL after oral doses of 60 mg (tablets or oral drops). The half-life was calculated as approximately 7.0 hours in each case. The degree of human plasma protein binding was calculated from tritiated domperidone concentrations of 10 and 100 ng/mL as 91.7 and 93.0%, respectively.

The major metabolic pathways for domperidone in man are hydroxylation and oxidative N-dealkylation, the products of which are hydroxydomperidone and 2,3-dihydro-2-oxo-1-H-benzimidazol-1-propionic acid, respectively. After oral administration of 40 mg 4-domperidone to healthy volunteers, 31% of the radioactivity is excreted in the urine and 66% in the feces over a period of 4 days.

Indications And Clinical Uses: In the symptomatic management of upper gastrointestinal motility disorders associated with chronic and subacute gastritis and diabetic gastroparesis. Domperidone may also be used to prevent gastrointestinal symptoms associated with the use of dopamine agonist antiparkinsonian agents.

Contra-Indications: In patients with known sensitivity or intolerance to the drug.

Domperidone should not be used whenever gastrointestinal stimulation might be dangerous, i.e., gastrointestinal hemorrhage, mechanical obstruction or perforation.

Also contraindicated in patients with a prolactin-releasing pituitary tumor (prolactinoma).

Manufacturers' Warnings In Clinical States: Dopamine receptor blocking agents elevate prolactin levels; the elevation persists during chronic administration. Tissue culture experiments indicate that approximately one-third of human breast cancers are prolactin dependent in vitro, a factor of potential importance if the prescription of these drugs is contemplated in a patient with previously detected breast cancer. Although disturbances such as galactorrhea, amenorrhea, gynecomastia, and impotence have been reported, the clinical significance of elevated serum prolactin levels is unknown for most patients. An increase in mammary neoplasms has been found in rodents after chronic administration of dopamine receptor blocking agents. Neither clinical studies nor epidemiologic studies conducted to date, however, have shown an association between chronic administration of these drugs and mammary tumorigenesis. The available evidence is considered too limited to be conclusive at this time.

reverett123 05-17-2008 09:14 AM

backslider's corner
 
OK - Yesterday evening was a high-stress event and, as a result, I woke at 3 AM and couldn't go back to sleep. Got up and took two 4 mg Requip (8 mg total). Nothing. Zilch. Took the same again at 5 AM with same result. So, at 8:45 AM I caved and took one Sinemet CR (50/200) and one teaspoon of mucuna. Fully "On" in 30 minutes!

That and Imark's post got me to thinking about dosage. My first real test some time back was with homemade capsules and I got results with just two grams. But in trying to replace as much of the regular stuff as possible I got up into the high dose range. So maybe it would be worth going the other way and see what the minimum dose combined with meds might do. I guess I'm still in the game after all :-)


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