Thumbs up for Mucuna Pruriens

[smithclayriley]

I agree whole heartily with Max, Rick and Fiona (I hope that I have not missed anyone who has communicated about this topic, if so, I apologize ahead) that Mucuna, is for me, a far better choice than Sinemet/L-dopa. In fact there is no comparison now that I am on the right kind of Mucuna, a powder called Zandopa (natural herb) ordered from India.

I have been able to reduce my Sinemet RR totally (500 mgs daily) and two Sinemet CR 100/25 for a total of 700 mgs in two months before I started Mucuna. I was still having side effects from the remaining 800 mgs that I am still taking. And yes it has not been easy.

I am slowly reducing my Sinemet CR by 1/2 a 100/25 tablet and adding a 1/4 tsp. of Mucuna three times a day. I am changing this ratio every week. I am following Max19BC plan. Max, if you are inundated with emails.......sorry man!

Mucuna has helped tremendously in reducing the side effects from the Sinemet CR that I am still taking. I feel better and it works for me. It is the tool I need to get off Sinemet dopamine, which is my goal.

[Fiona]

Yeah, me too. And I haven´t experimented with the Zandopa yet, just the mucuna from the Vitamin Shoppe. But what a thrill to email my doctor to say, uh, you know those 6 Sinemets I used to take every day? Well, I`m not really taking those now...SEND!!!!! What a feeling.

[smithclayriley]

Fiona, you crack me up. I'm not even going to bother telling mine, he would probably gong my head to see if it had a reflex instead of my knees.

Bonnie

[Fiona]

Fiona, you crack me up. I'm not even going to bother telling mine, he would probably gong my head to see if it had a reflex instead of my knees.

Bonnie

:D That's hilarious, Bonnie. Atta girl!

[kk13]

Hi, again.

Glad to hear all the positive news about your mucuna experiences. I've tried to start, but for numerous reasons, have put it off temporarily.

My question : Has anyone had any negative response or experience with mucuna? Has anyone even heard of anyone having a negative experience?

I guess I've just been a little "chicken" to jump into the experiment, and am looking for someone to push me in! I'm looking forward to your response.

In the meantime, I'm very happy that both of you are having such great results. It gives me hope.

[smithclayriley]

KK13, if you send me your email address to smithclayriley4@yahoo.ca I can forward the info I have on it and the dosing schedule that I follow. I have zip side effects from the Mucuna and hardly any dystonia from the Sinemet CR that I still am taking. Optimistically I could be off Sinemet (two CR 100/25 4 times a day) in a couple of months. I am already down to 3 and 1/2 CR's three times a day. I am amazed how well I am doing but I had no choice, Sinemet/L-dopa was killing me.

I do take L-Tyrosine (2 x 500mgs) Creatine, Glutamine and liquid B12 with Methylcobalamin mixed in Gatorade at 2100 with one 3 mg of Melatonin to help me sleep. This was how I started reducing by eliminating my 2100 hr or 9pm meds.

[reverett123]

I won't say these are negatives so much as cautions. I think it is safer than Sinemet at a minimum.
1) I think the raw powder is best because no one has messed with it. Zandopa is suspect.
2) The studies talk of dosages as high as 30 g and I myself have gone as high as 50 g. At present I am using just 5 g! It seems to be enough.
3) I have integrated it into my other meds. I still take Sinemet CR and Requip at the same dosages, but I get better results. However, I take the mucuna at supper because it seems to interfere with my meds if I take it in the mornng.
4) Because raw beans are not good for you, I toast it in the oven.

It is a valuable tool. I just have to learn how to use it.
-Rick


Hi, again.

Glad to hear all the positive news about your mucuna experiences. I've tried to start, but for numerous reasons, have put it off temporarily.

My question : Has anyone had any negative response or experience with mucuna? Has anyone even heard of anyone having a negative experience?

I guess I've just been a little "chicken" to jump into the experiment, and am looking for someone to push me in! I'm looking forward to your response.

In the meantime, I'm very happy that both of you are having such great results. It gives me hope.

[smithclayriley]

Rick, Zandopa is powder but definitely not black. I was wondering why it is suspect?

[smithclayriley]

Fiona and Rick, I was wondering if either of you could clarify the type of
Mucuna that you are taking. I believe you said it was a powder,what form of powder? Does it come in seed form and why do you bake it for 5 minutes? Why is mine Hp-200 and Fiona says hers is HP-400?

Confused.

[reverett123]

I will answer but you might search back through this subject, too. There has been quite a lot of discussion. As to the powder, I use an organic seed powder by Banyan Botanicals. Google it and you will find several sources. As to why I bake it, raw beans contain a toxin to discourage creatures from eating them. Kidney beans in particular can sicken. That's why people soak them overnight before cooking. I toast the powder before use in hopes of breaking down the toxin. I don't know if it works or not, but I have had no more problems with cramping. Finally, the "HP-200" is just a name, like a brand name. I don't know for sure but the HP-400 may be a typo.

Fiona and Rick, I was wondering if either of you could clarify the type of
Mucuna that you are taking. I believe you said it was a powder,what form of powder? Does it come in seed form and why do you bake it for 5 minutes? Why is mine Hp-200 and Fiona says hers is HP-400?

Confused.

[reverett123]

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.

Rick, Zandopa is powder but definitely not black. I was wondering why it is suspect?

[smithclayriley]

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.

[Fiona]

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.

[akamscluso]

Hi, again.

Glad to hear all the positive news about your mucuna experiences. I've tried to start, but for numerous reasons, have put it off temporarily.

My question : Has anyone had any negative response or experience with mucuna? Has anyone even heard of anyone having a negative experience?

I guess I've just been a little "chicken" to jump into the experiment, and am looking for someone to push me in! I'm looking forward to your response.

In the meantime, I'm very happy that both of you are having such great results. It gives me hope.

Greetings:

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:rolleyes:

akamscluso

[kk13]

Greetings:

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:rolleyes:

akamscluso

Don't Ask...After 20 years with the disease, I got 'em all!!! Or almost all.

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.

[reverett123]

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.

Don't Ask...After 20 years with the disease, I got 'em all!!! Or almost all.

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.

[reverett123]

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.

Don't Ask...After 20 years with the disease, I got 'em all!!! Or almost all.

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.

[kk13]

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

[reverett123]

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?

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

[kk13]

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?

Count me in!!!
Keith

[smithclayriley]

I started reducing my Sinemet/L-dopa before I started taking Zandopa. I was taking 1500 mgs daily (500mg RR and 1000 mgs CR). I eliminated my last dose (one 100/25 RR Sinemet/L-dopa and two CR 100/25) and started taking L-Tyrosine instead. I continued reducing the remaining 400 mgs of RR and noticed an improvement in my side effects, less calf pain and toe dystonia. This was interesting indeed.

I was down to 800 mgs of CR when I started Zandopa. I am now on my third week of taking Zandopa and continuing to reduce my CR Sinemet. Yesterday I was down to 500 mgs daily and today I have reduced that to 400 mgs.

The difference is so obvious that everyone comments on how much better I look and are doing. Most are astounded. The reduction of my pd meds is being accomplished so fast even I find it hard to comprehend. The side effects are so minimal to non-existent. Gone are the on/offs, freezing and pain.

Why I have been so fortunate is a mystery. Is it because I don't believe I have pd? What about the theory that you continue to have side effects after you stop taking dopamine if you can even accomplish that goal. These are things I can not answer.

I started reading books on the brain and realized I was on my way down. I started getting interested in the brain re-circuiting itself and knew I had to change and re-think everything. I was depressed knowing the meds I had to chose from were not the answer and the cure they told me that was coming in 5 years was not coming where it would do me any good.

I felt alone until I found this forum. All of you are so knowledgeable and open.
I got info here that I wasn't getting from the neurologists. I feel I have turned the corner. I had a much more thorough post but lost it.

Bonnie

[smithclayriley]

the principal phones and tells you that the very child you were speaking about just rode a motorcycle through the gymnasium. After my glowing, everything is wonderful post..........I am up because I can't relax enough to sleep. I just took 1/2 a tab of RR 100/25.

Still not sleeping. I had such a good day I thought what the heck..........and I have some distance to travel by car on a painful lumbar to get my MRI's done tomorrow so sleep would be good.........and so I took one more 1/2. My legs started vibrating so I sat on the floor, then I had to pee (does that not always happen, urinary retention) while I was thinking about that, I froze. I can usually manage to stop the freezing pretty quickly now. I was a little unsteady as I shuffled to the bathroom. Now I have to wait it out, relax (no negative thinking like 'damn you idiot, now you've sabotaged yourself') until I can sleep. Fear and meds. Old habits don't die easy.

[Fiona]

Bonnie, I am so happy for your progress - but don't go too fast, girl. Otherwise you could hit an unexpected bump at some point that could be upsetting.

[smithclayriley]

Hi Fiona,

That's me a bumpy road. Because I believe the brain can re-circuit and heal itself helps with the bumps. I think we will hear more about this theory in the near future. Thanks for encouragement and advice.

Bonnie

[rosebud]

No one mentioned mucuna tincture? I ordered a bottle from a supplier in the UK but I have no idea how to use it. Mostly I have no idea of how the dosages are equal counterparts of the sinemet. it came with a teeny tiny measuring cup.

with medications 5mg of this med IS NOT equal to 5mg of that med. So how does anyone really know what's appropriate.

Rick, you may be able to boil the powder in a bit of water...rather than baking it. You could then use that for a smoothie. The amount of mucuna in a single dose is so small that I can't imagine there would be enough toxin to make a diff. Let me talk to my bean guru about the toxins in beans. When you soak beans your softening them up for cooking and ,the excess water is poured off as water leaches out the toxins. But thats not true for all beans. For example we eat Pork and Beans canned with no ill effects, but canned beans like red kidney we are told to rinse thoroughly.

Lots of questions...but we have all the time in the world

[reverett123]

That'll take some trial and error Rosebud. 'Course, time you work it out, the little bottle will be used up and you wiil start over...:D

Well, if it was easy then everybody would be doing it.:)

No one mentioned mucuna tincture? I ordered a bottle from a supplier in the UK but I have no idea how to use it. Mostly I have no idea of how the dosages are equal counterparts of the sinemet. it came with a teeny tiny measuring cup.

with medications 5mg of this med IS NOT equal to 5mg of that med. So how does anyone really know what's appropriate.

Rick, you may be able to boil the powder in a bit of water...rather than baking it. You could then use that for a smoothie. The amount of mucuna in a single dose is so small that I can't imagine there would be enough toxin to make a diff. Let me talk to my bean guru about the toxins in beans. When you soak beans your softening them up for cooking and ,the excess water is poured off as water leaches out the toxins. But thats not true for all beans. For example we eat Pork and Beans canned with no ill effects, but canned beans like red kidney we are told to rinse thoroughly.

Lots of questions...but we have all the time in the world

[reverett123]

One thing to keep in mind- Mucuna lowers blood sugar which is a good thing overall. But if you start the day with mucuna and forget to load up on protein and complex carbs you may find the rug jerked from under you about the two hour mark as I did this morning. Just now coming out of the fog.

Another time to be aware of this is when you are taking large doses or when you have been taking all day.

[rosebud]

I was on the net this am looking for info on the tincture apparently it comes in a variety of strengths and is much more potent than the powder. Its suspended in an alcohol base (25%). you can rid yourself of the alcohol by dropping a bit (now there's a precise measurement!) in water and bringing it to a boil.. So how shall I start this...

oh yes, the website I got the info from was www.raysahelian.com
He talked a bit about other disorders and is sure dopamine depletion is at the root of fibromyalgia. Many similar symptoms. Hmmmm

May the Force be with us!

[smithclayriley]

Rick, I can emphasize with you today, after my 2pm dose of Mucuna (1 tsp to 1 CR 100/25) I was in a tizz for 2 hours. The legs just beating away. I am not even going to second guess what is going on. I start to feel foolish, like some kind of zealot.

Trying to stay relaxed (not depressed), exercise (yeah right), eat properly, figure out what pd meds and which supplements are working, balancing my diminishing bank account.........need I go on.............it is a lot of work.

[reverett123]

I have about decided that there is more than a simple additive effect with these two. A little of both goes a long way it seems. And speaking of bank accounts, mucuna is a big help there. One thing to be figured out is how to stretch the effect to last longer. Mine is about two hours on an empty stomach but that lets the blood sugar drop. I want to try it with protein, fat, carbs, etc to see the effect.

[rosebud]

Fats are the biggest threat to our l-dopa consumption because they slow the emptying of the stomach into the gut, where it has to go to be absorbed. Many times (I suspect) we think eating protien is our problem , but it's actually the fat content of our food. sinemet has such a short half-life that we are always having to watch the clock. For my money cheddar cheese is the biggest sinemet killer on the block. Not a side of beef, as you would think.

good luck with the testing Rick. Post your results for input. I'm very suspicious of foods and how they affect our response. What we eat has the biggest impact on the sucess or failure of our meds to perform.

I have noted I can eat up to 250 calories of any combo of real food (except sugar and all it's cousins- honey, corn syrup, etc, and high fat foods) between doses of meds.

[smithclayriley]

That the mucuna is working better for me than not. Last night and my two morning doses today I did 2 Sinemet CR 100/25, 4 hours apart instead of taking 1 tsp of mucuna in Gatorade and 1 Sinemet CR 100/25. I found I had way more toe dystonia and wearing on/off symptoms when I took the 2 CR. My last dose back on my mucuna program I noticed the difference right away. A big difference.

I had a look at my MRI scans, not a pretty picture as I expected. I will have to wait a week for the radiologists report. I remember telling my neuro four years ago about this crippling leg pain I started having. His answer "oh you must be under-medicated, up the drugs".

[Fiona]

Hmmm, Rosebud, tincture of mucuna...sounds like a must-try. very interesting. And I think you are right on about the fat content thing being the problem - except do I think that? I've mixed mucuna with yogurt, once even a little ice cream - not a lot - but it seemed to work still....Not sure, but I think you could be right.....and certainly for Sinemet.

[rosebud]

Murray Charters used to say he could eat a tuna sandwich with no problem, but the minute you added a slab of cheese and turned it into a Tuna Melt he could be off for hours. I often eat low fat yogurt right after I've taken sinemet, and no problem. Ice cream has the sugar thing happening which is evil for my tremor. I buy the single size servings of things like yogurt, pudding and anything else that comes that way. I then have built in portion control.

Also, when eating, I think we have to consider our size. As a 5' 1" 120 lb female, I cannot eat a whole Tuna Sandwich without my meds being affected ( as I said I have figured out that I can get away with 250-270 calories per meal) But Murray was a 200 lb six foot tall man. He could burn that extra calorie load easily.


And yet another thought...mucuna being a natural food may have built in enzymes or other factors that we are not even aware of that helps it fit into the picture better. Don't forget they didn't even know about vitamins until the last century. And they are still discovering new ones!

[Max19BC]

I'm really glad to hear about how much mucuna is helping some of you. Mucuna is still a mystery to most of us pd'ers, but I'm still pretty pleased with my results. I've started taking it over 18 months ago. Back then I was taking 4 to 5 tablets of Sinemet 200/50 CR a day with mostly OFF times. Sinemet wasn't working very effectively for me anymore, so I've decided to gradually replaced my Sinemet with mucuna over several months. I'm now taking only 1/4 tablet of Sinemet 200/50CR with 1 1/2 tsp (7.5 ml) Zandopa (powdered mucuna) from India 3 or 4 times a day. When I'm out, I'll substitute the Zandopa powder with 1 1/2 mucuna tablet from Herbsforever. I've had pd for 7 years now, so I'm probably taking more mucuna than most of you. I wouldn't recommend anyone taking this much to start.
But I'm really happy that I've managed reduced my Sinemet intake by 80%. I'm in much better shape now than 18 months ago. I really don't have any side effects. IT'S A SHAME the medical doctors aren't prescribing it. Here are some of the benefits that have occurred since I've started using mucuna.
When the mucuna/sinemet kicks in, I no longer have any muscle aches, my tremors are gone (only comes back if I get stressed), can walk mostly normal, no more freezing, etc. I would say that I'm 80% normal. I can walk, jog, run, ride a bike, write pretty normal, feel pretty good, not depressed just enjoying life again. Here's a biggie: I'm no longer constipated.
I will always try to take it on an empty stomach. I'll use a small electric blender to mix the powder and I chew the Sinemet ( I know, I'm not suppose to). Anyway, it works for me. I would highly recommend it.
Another consideration to use mucuna, is to boost your Sinemet when it starts to fail you instead of taking Comton or Mirapex, etc. Anyway, just a thought.

Good luck,
Max

[Fiona]

Thanks Max for the update. Yes, I can now say I have been able to eliminate the use of Mirapex/Requip/Neupro patch with the help of Mucuna, and am feeling better than I was before, and at least 2/3 of the Sinemet I used to take. Still taking Stalevo and seem to need a little sinemet - but not so much.

I have tried the Zandopa and was surprised to find that it worked in a certain way but felt very intense, and very scary and almost sickening, and the shift back to my regular regimen just a dose-time or so later felt very rocky and frightening. Maybe it doesn't go well with Stalevo? Don't know....wish we had someone who really had the pharmaceutical knowledge, experience, and willingness to help us all figure this out....

[smithclayriley]

Hi Max,

Thanks for posting your experience with Mucuna and special thanks for sharing all your info with me that got me interested in trying it.

Bonnie

[KC Tower]

mucuna tablet from Herbsforever
Max

Is Mucuna available in tablets from anywhere direct in Canada.

I dont like the unpredictable customs/shipping from US if it can be avoided.


thanks ,,, ken

[smithclayriley]

Ken,

It seems everyone on the forum have all tried different types of Mucuna, tincture, seed, tablet and powder which makes it a bit over whelming and confusing. Your best bet is read some of the posts as I was advised to do. It is hard when it comes to telling anyone about medication, supplements, herbs etc. what works for you might not work for me. Too many variables.

I ordered Mucuna tablets from California, with no problem getting them across the border in a week's time. I did wonder about that myself. Anyway the tablet potency seems too much for me. I may try them again later.

I order a Mucuna powder from India. A two month supply plus $2.00 shipping cost around $27.00. It arrived approximately a week later.

My source for Zandopa in India is http://mall.coimbatore.com/bnh/zandu/zandopa.htm

[akamscluso]

.
Hi

I m staring at the Zandopa right now, fearful (so stupid) of trying it. How much are you taking? In water, juice or what? Also how many times a day?

Thanks,
AKAMSCLUSO:D

[reverett123]

I have some misgivings about Zandopa, especially its "flavored base" which I suspect of containing aspartame, so my answer is about mucuna powder.

First, the studies talk of dosages as high as 30 gr. That's way too much for me. I take about a half-teaspoon with half a sinemet CR (200/50). That works for two to three hours.

A couple of things I have noticed- It is a blood thinner so be careful about mixing it with others. And it lowers blood sugar, which is probably good but watch out if you start your day with it. Take it with a meal. I use an empty pill bottle as a shaker and mix it with water, shake, and down the hatch. I mainly use it in the afternoon to bedtime period. You will probably need some trial and error to find what works for you.

As for being fearful, that is a good attitude. Just be sure it leads to caution but not paralysis. And whatever you do and under no circumstances should you read the package insert for your other meds. :D

.
Hi

I m staring at the Zandopa right now, fearful (so stupid) of trying it. How much are you taking? In water, juice or what? Also how many times a day?

Thanks,
AKAMSCLUSO:D

[smithclayriley]

I replied to you via personal email. Good luck. I still think MP (Zandopa powder) is far superior to Sinemet. I am amazed more people with pd have not tried it.

[Max19BC]

Hi Ken,
I haven't found a source in Canada yet for getting "Mucuna or Zandopa". As far as customs, I never had a problem and I was never charged any duty. I was advised (by a herbalist) to keep the order small (under 6 jars). If you order to much, customs might think you're going to resale it. Besides you shouldn't order more than a 3 month supply anyway, because you want to keep it fresh. I keep my supply in the fridge (cold dark place). I still use the mucuna tablets too, when I'm not home. It's a lot easier. So far after 19 months of using "mucuna", I'm still doing pretty good. I'm haven't gotten any worse, if anything I'm getting better.
Take care, Max

[ariela]

for what it's worth, i'm looking at mucuna for the first time, and have just bought a jar of ZANDOPA from this source:



the company is physically in BOMBAY, INDIA, where the order is actually taken and shipped from.

the reason i opted for these folks is their price ($13.75) which INCLUDES (as in, FREE) postage to anywhere in the world -- irrespective of quantity!
i find this palatable as it makes it inexpensive to buy a single container at a time. i also needed the zandopa shipped overseas which would have made it, i found, twice as expensive if bought anywhere else.

i'm keeping my fingers crossed that it turns out to be the panacea it has been for max... :)

cheers,
ariela

[ariela]

alas, apparently my attempt at 'circumventing' the system was caught and edited off by Super Moderator (and super vigilant) Curious. a pity :(

perhaps someone with more than 10 posts can write me privately, get the link and post it.

rosebud... ? :)

cheers,
ariela

[leonore]

ditto for mucuna being helpful. I mix the Zandopa with powder from capsules from the AFI mucuna that Fiona sent me a link to. I have to titrate carefully, but find 1/4 tsp. daily is best for me, as more gives me dyskinesias. Seems, (as with everything PD) that it has to figured out in a very individualized way. I've been able to go down on my Stalevo 50 from 1 1/2, to one every 3 hours. When I feel good, I feel great.
It still takes alot of tweaking, and a muggy, humid day seems to cancel out everything good I try to do for myself once I hit the air outside.
I'm also taking a half scoop of whey glutathione powder,(from NOW) whisked into my oj every morning, which helps with energy, and which my PD expert on complementary medicine, Cyndy, swears by.
Obviously, I try to remember to time it so the protein is an hour away from my levadopa.
The mucuna does help with everything, especially mood.
Finally, as a reward for 4 miles a day on my Schwinn recumbent bike, and stretching, and sometimes doing Qi Gong with my wonderful DVD, I get to use my brand new travel-friendly electric scooter to go out when I'm unsure of going off. Look at Pride Scooters online, and check out the lower priced ones that your neurologist can write a scrip for, and Medicare or insurance can pay part of cost, if you do it right.
I feel like I took the world back in terms of freedom to be out and about, and even ride it straight into stores and local restaurants. Leonore


Yeah, me too. And I haven´t experimented with the Zandopa yet, just the mucuna from the Vitamin Shoppe. But what a thrill to email my doctor to say, uh, you know those 6 Sinemets I used to take every day? Well, I`m not really taking those now...SEND!!!!! What a feeling.

[leonore]

Mucuna has been really helpful to me with mood, especially, but needs to be tailored carefully to each person. I get bad dyskinesias if I take too much. 1/4 tsp. of Zandopa powder mixed with a little of regular mucuna on a daily basis is almost too strong for me, so I'm still tweaking. It does seem to make me feel almost fine, at times, as if PD is gone, when taken with my Stalevo 50.





Hi, again.

Glad to hear all the positive news about your mucuna experiences. I've tried to start, but for numerous reasons, have put it off temporarily.

My question : Has anyone had any negative response or experience with mucuna? Has anyone even heard of anyone having a negative experience?

I guess I've just been a little "chicken" to jump into the experiment, and am looking for someone to push me in! I'm looking forward to your response.

In the meantime, I'm very happy that both of you are having such great results. It gives me hope.

[annefrobert]

Rick,


Levodopa effects are more complex than said and not linked only to the sole dopaminergic neurons of substantia nigra.
Movement is a whole, resulting from many modulations that combinate to make it the appropriate one.
We have been all conditioned on one side by adepts of best science and on the other side, by big pharmas and key opinion leaders not to see
what any one knows when not polluted by the everyday flood of informations : We are not rats, even if we are treated as so
.
To move requires motor command, yes, but too, sensory inputs, cognitive functions, mood, motivation, desire, impulse, stress regulation, arousal,
attention, alertness, muscles, glucosis regulation.. all functions being directly or indirectly, fully or partially regulated by dopamine
and norepinephrin, molecules levodopa is the precursor of.
We have all misinterpretated for years, as conditioned to a simplificating thinking said to be the basic cause and effect relation for scientific demonstration.
Reality of complexity in effects and their regulations originate every question asked upon this forum.

Mucuna Pruriens is a plant, and again a far more complex substance than single levodopa

Mucuna has different properties explaining it works on PD, not only because of its Levodopa.
The ones that have ordered the trial in PD and afterwards patented Mucuna Pruriens are not stupid ones
http://www.domainb.com/companies/companies_z/zandu/20000200zandu_cmi.html


The biggest problem is to modulate effects of treatments and here lays initially the superiority of plants with different molecules working
at different levels and characterized then with a kind of “adaptative possibility included”.
See the plants called “the adaptagenes” for stress.
In another thread you talk about the blocking inflammation and reactions to stress.
In fact, to follow this almost pradical way would lead us to hell when inflammation, here activation of microglia, is number one reaction to protect neurons.
And what would we do without stress response and no adaptation to continuous flow of hits and cascades of events?

I have neither the possibility* to give all the informations I learnt from my works, ,
a huge travel across all barriers too, nor to explain how all of them but I paste here a very short summary of the first page
of one important chapter about PD as seen through the INE network, written two years ago, some pages are yours too, Rick

No phenomena concerning neuronal networks in brain other may be understood as isolated of the framework of a whole entity, made of interacting complex sytems and ruled by biophysical laws.

Thus, the neuro-endocrine system and the immune system are linked together in a common network of interactions where immune cells express receptors for hormones, neurotransmitters, neuropeptides and respond to these agents and conversely, the immune system can send messages to the brain and neuro-endocrine associated structures that recognize and respond to these messengers.
Altogether compose a network of complex interactions that have immunoregulatory implications and that can also influence the activity of neuro-endocrine systems.

Furthermore, there is evidence that activated T cells can cross the blood-brain barrier and migrate into the CNS and may establish local immune-neuro-endocrine interactions in the CNS through the local release of cytokines that can affect the activity of neural cells.

As any other component of this immune-neuro-endocrine (INE) network, all the neural systems implicated in IPD are submitted to immune and endocrine influences and are related to brain interactions with the external environment and to stress regulation of the inner world through the HPA axis and the adrenergic sympathetic nervous system (SNS).

When exposure to environmental agents disrupt their coordinated adaptive responses, immune, hormonal and neural factors altogether contribute to determine whether recovery occurs quickly or does not happen.


Remember you get better results, longer ones though you take much less quantity of Levodopa from Mucuna P
than from tablets of synthetized Levodopa.
Concerning less side effects , not much may be concluded as the quantity is inferior .
For the good effects, more has to be said.

1. Mucuna has no dopadecarboxylase inhibitor ( no benserazide , no carbidopa) to shield it from your body's enzymes.
According to conventional wisdom, almost none should get to the brain. BUT it does.
Studies refute the presence of a peripheral decarboxylase inhibitor found in raw or boiled beans

2. Tryptamine alkaloids have been found in trace amounts (5-methoxy-NN, Dimethyltryptamine, also 5-hydroxy-tryptamine. )
http://www.usask.ca/agriculture/plantsci/classes/plsc416/projects_2002/gibson/tdc_activity.gif

3. Mucuna pruriens shows antioxidant and metal chelating activity
Phytotherapy Research
Volume 22 Issue 1, Pages 6 – 11 Published Online: 7 Dec 2007
Antiparkinson drug - Mucuna pruriens shows antioxidant and metal chelating activity
Muralikrishnan Dhanasekaran 1, Binu Tharakan 2, Bala V. Manyam 2 3 *

ABSTRACT
Parkinson's disease is a neurodegenerative disorder for which no neurorestorative therapeutic treatment is currently available.
Oxidative stress plays an important role in the pathophysiology of Parkinson's disease.
The ancient Indian medical system, Ayurveda, traditionally uses Mucuna pruriens to treat Parkinson's disease.
In our earlier studies, Mucuna pruriens has been shown to possess antiparkinson and neuroprotective effects in animal models
of Parkinson's disease.
The antioxidant activity of Mucuna pruriens was demonstrated by its ability to scavenge DPPH radicals,
ABTS radicals and reactive oxygen species. Mucuna pruriens significantly inhibited the oxidation of lipids and deoxyribose sugar.
Mucuna pruriens exhibited divalent iron chelating activity and did not show any genotoxic/mutagenic effect on the plasmid DNA.
These results suggest that the neuroprotective and neurorestorative effect of Mucuna pruriens may be related to its antioxidant activity independent of the symptomatic effect.
In addition, the drug appears to be therapeutically safe in the treatment of patients with Parkinson's disease.


4. Low dosages of levodopa enhance Growth Hormone release.
Mucuna requires much less levodopa to afford well being, why? Hard to say it simply.

• It’s a good point first because low dosages of levodopa permits to avoid or lessen the risks of side effects and complications
of immediate effects –hers,called adverse but demonstrated elsewhere– and also, a too important discontinuity in dopaminergic stimulation, when
pulsatile stimulation as it impairs functions. Both conditions, high dosage and correlated high pulsatility, known to be the main causes of motor complications, participate, at least partially, in the underlying process, the CNS impairements, leading to non motor -psychic and mental –complications.of levodopa

• Second point, low dosages of levodopa enhance Growth Hormone release.
Here is more, I would say much more, to be understood at different levels and in the INE networks.
This action is enhanced by amantadine but inhibited by vit B6 as it triggers peripheral accleration of the conversion of L- dopa to dopamine
Read this page below and you will see how complex effects are, to understand and to take in account.
• Second point, low dosages of levodopa enhance Growth Hormone release.


“I discovered that a major pharmaceutical company was using a local botanical product in the development of a prescription secretagogue
(= a substance which causes another substance to be secreted ).
This is not unusual as a large portion of prescription drugs are derived from plant sources by first isolating one active ingredient, denaturing it with a chemical side chain in order to patent it, then performing extensive clinical studies and finally submitting it, 21 million dollars later, to the FDA for approval. Upon examination, I found that the "active" ingredient was enhanced by the plant's other components.
Further, we found that a large amount of the activity of this ingredient was lost very rapidly (within 2 hours) after harvesting.
One of the active ingredients in this plant is L-dopa, a potent stimulator of GH release. I had worked extensively with L-dopa in the past as a consultant on its delivery.
L-dopa, used as an anti-aging drug and treatment for Parkinson's disease, is poorly absorbed and must be taken in super-physiologic doses (thousands of times what the body would produce in a day) in order to elicit a response.
At high doses, L-dopa can produce side effects, but at lower doses it will stimulate GH release, improve mental performance, and improve symptoms of Parkinson's disease
Growth hormone itself has produced improvements in Parkinson's disease; with the dual action of L-dopa and other secretagogues, and the lack of side effects, it's definitely worth a try for physician's to observe its -affect on patients who suffer from this devastating disease.
Studies conducted on the effectiveness of various amino acid stimulants of growth hormone release have produced significant results. One test for GH secretory potential is the arginine loading test, but very large amounts are used-often intravenously. Other amino acids like ornithine, lysine, and glutamine have produced mixed results
I had to ask myself, "How could the response to these amino acids vary to such a large extent?"
As it turns out, the study on L-glutamine that produced the most significant elevation in GH administered the amino acid in a carbonated drink solution. How could carbonation make that much of a difference in the effectiveness of this amino acid in GH release? I had tested effervescent delivery with L-dopa and other substances in the past and found it to be highly effective in combination with Chaperone Molecules. With carbonation, I had been able to produce rapid and efficient delivery of sensitive compounds. In this case, I discovered that effervescent delivery assists in the delivery of amino acids so that a greater and more consistent response can be derived with lower doses.
There are many receptors for these amino acids, so getting them to the right ones that stimulate GH release requires the use of Chaperone Molecules. In addition to protecting and delivering these amino acids, some Chaperone Molecules have insulin-regulating effects.
The importance of suppressing insulin in provoking GH release cannot be overstated. Blood sugar and insulin inhibit the release of growth hormone-this is a basic principle of the effectiveness of proper diet, fasting and exercise in stimulating GH. While consuming sugar and other carbohydrates in the diet will provoke insulin and inhibit GH release, there are other sugars, referred to as pharmaceutical saccharides that do not provoke insulin and are not metabolized as carbohydrates. In fact, when the right saccharides are used they do just the opposite-they help to regulate blood sugar and insulin. Some of these saccharides -like those in Symbiotropin- have a sweet taste, which eliminates the need for artificial or high carbohydrate sweeteners in flavoring the product.
I am not implying that insulin is the bad guy. In this highly complex system, we need insulin to promote the benefits of growth hormone. Studies show that GH fails to cause growth in animals lacking a pancreas and it also fails if carbohydrates (insulin provoking) are restricted from the diet. These studies reinforce our knowledge of insulin as a necessary catalyst in GH response and demonstrate that high levels of GH mean nothing in terms of results.
This is why I have concentrated on secretagogues, receptor site modulators, insulin regulation, and liver enzyme enhancers rather than GH injections.”
(….)
The pharmacologic effects of plant derived compounds are well documented in both human and animal clinical trials. These plant products possess structural similarities to endogenously produced hormones, which enhance their affinity to hormone receptors and steroid and prostaglandin dehydrogenases -making them effective adjuncts to a variety of hormone replacement therapies.
……..and so much more
Caution :
These lines are written by pharmacologist James Jamieson who. knows perfectly well what he is talking about; no reference is given, but data are all evidence-based demonstrated –I have verified, as always, so do not mind the fact they are accompanying the sell of a product.
Link to James Jamieson explanations.

The worse about talking about Mucuna is that we ourselves may convince some to try, which may be good or bad, as we do not know all the conditions for it to work at best (there is no miraculous molecule in it! ) and that we only “work” for the incomes of money of some few we particularly disapprove.
But this has to be discussed in another thread, no?

Anne.

[annefrobert]

The site of the Raintree Nutrition gives appearingly very good data upon MUCUNA
(However, its statements have not been evaluated by the Food and Drug Administration)

All about Mucuna P. (http://www.rain-tree.com/velvetbean.htm) and more particularly Mucuna chemicals +++ (http://www.rain-tree.com/nescafe-chemicals.pdf), ....and....Mucuna tested activities +++ (http://www.rain-tree.com/nescafe-activity.pdf)

Reference given to NIH pubmed Mucuna (http://www.ncbi.nlm.nih.gov/sites/entrez?dispmax=20&db=pubmed&pmfilter_EDatLimit=added%20to%20PubMed%20in%20the% 20last%200%20i&cmd_current=Limits&orig_db=PubMed&cmd=Search&term=mucuna&doptcmdl=DocSum)

It is said that ]"Mucuna P., in combination with Piper longum and Zingiber officinalis,
slows the progression of Parkinson’s symptoms (tremor, rigidity, slurring, drooling,balance etc.)" [/COLOR]

More, a GOOD warning, full of common sense:

"Consumers should be aware however, altering the levels of brain chemicals like dopamine and serotonin
also affect many other hormones, enzymes, and other chemicals which keep the body in balance.
The long-term impacts on healthy humans* taking high levels of L-dopa are unclear and warrant further research.
It is best to proceed with caution when taking mucuna extracts and to follow the labeled dosages.
It is a powerful plant with many biological actions that should be respected.
In other words, the belief system of some people taking herbals supplements
of "if some is good, more is better,"does not apply with velvet bean".

[COLOR="Navy"]* I am not sure about the long-term impacts on healthy humans* taking high levels of L-dopa
being that unclear *and the NEED of further research...Any opinion?

So, better take care and be cautious.
Again, there is no miracle...but only if good conditions of intake, great possibilities for a great plant...
Treatments of tomorrow will have to be adapted to each one.
Nature has created some of them in other environmental conditions...
Who's next?

Have a nice day...
Anne

[smithclayriley]

Question: If Zandopa, the product some of us buy direct from India is involved in clinical trails will that affect our ability to get this product? With this agreement with CMI to finance (to the tune of $10 million) clinical and pharmaceutical development to obtain drug marketing approval not suggest a large price increase to the consumer. Like some have said on this forum, we could see this coming.............Would that be in the foiled again category!

[Fiona]

Anne, thank you so much for the excellent info and advice. It's clear that we desperately need knowledgeable people to help us figure this all out....

Is there no one out there who is willing to come to our assistance?????????????

lots of people read this site - does anyone know a doctor, a pharmacologist, a real savvy herbalist or even a good chemistry person willing to try and help a bunch of people who are fighting for their lives every day, some of whom are open to experimentation outside of the system at least try to have a life some way or other?

[reverett123]

...should be, "If you want something done right, do it yourself." That applies to this type of research as much as anything. They are NOT going to save us! They are going to ensure their bottom line, dream of tenure, and generally look after their own self-interest. A few exceptions, yes, but we are all time-limited in this forum. But we are not helpless. With the Net and its resources plus the communication capabilities it gives us, we have a chance.


Anne, thank you so much for the excellent info and advice. It's clear that we desperately need knowledgeable people to help us figure this all out....

Is there no one out there who is willing to come to our assistance?????????????

lots of people read this site - does anyone know a doctor, a pharmacologist, a real savvy herbalist or even a good chemistry person willing to try and help a bunch of people who are fighting for their lives every day, some of whom are open to experimentation outside of the system at least try to have a life some way or other?

[annefrobert]

Is there no one out there who is willing to come to our assistance?????????????


I am afraid the answer is NO


.:(
Anne.

[olsen]

anyone taking Mucuna also take one of the MAO-B inhibitors--Azilect or Eldepryl/Deprenyl? If I remember correctly, the rationale for not taking Mucuna while on one of hte mAO_B inhibitors is that mucuna may contain MAO-B inhibitors, as well as other compounds, substances. anyone know the veracity of the reason for not combining the 2 classes of drugs.

[paula_w]

call the fire department!

Olanow has the patent to do what with mucuna? I'm too lazy to look it up and it doesn't hurt to briefly remind us...thanks
paula

[reverett123]

Olanow and two others hold the patent for the use of mucna in the treatment of Parkinson's. This despite the fact that patents are issued for new and original creations. Mucuna has been used for the purpose for centuries and the patent should never have been issued and probably would not stand up to a challenge.

But in the meantime no one is going to risk their career by doing serious research on the plant knowing that this powerful figure is waiting. And since there is no sign that Olanow is doing anything to develop it the only ones who benefit are the big pharmaceuticals whose market would be eroded by a low cost alternative.

I am sure that Dr. Olanow did not intend for that to be the case.:D

I wonder what the reply might be if one of the national groups publicly called on Dr. Olanow to release those rights?


call the fire department!

Olanow has the patent to do what with mucuna? I'm too lazy to look it up and it doesn't hurt to briefly remind us...thanks
paula

[olsen]

wonder if he will be one of the main speakers at future conferences? how would the disclosure read? Or are disclosures necessary for speakers? I have often wondered if Dr. Marcia Angelle lost her position as editor at the NEJM because she mandated all authors must reveal their support from pharma.

[Fiona]

Yes, I think the tryptamine content of mucuna would make it an issue with inhibitors so wise to tread very carefully with Azilect and deprenyl and the like. Again, we need someone inspired to help us WHo could actually have the means to figure some of this stuff out.

Even if you have already read the patent application for mucuna, I found it very worth rereading. Its information is just so beautifully clear, thorough, and, uh, informed...The writers are obviously brilliant.

http://www.freshpatents.com/Pharmaceutical-compositions-and-uses-comprising-mucuna-pruriens-seed-powder-and-extracts-thereof-in-the-treatment-of-neurological-diseases-dt20060727ptan20060165822.php

[paula_w]

Yes, I think the tryptamine content of mucuna would make it an issue with inhibitors so wise to tread very carefully with Azilect and deprenyl and the like. Again, we need someone inspired to help us WHo could actually have the means to figure some of this stuff out.

Even if you have already read the patent application for mucuna, I found it very worth rereading. Its information is just so beautifully clear, thorough, and, uh, informed...The writers are obviously brilliant.

http://www.freshpatents.com/Pharmaceutical-compositions-and-uses-comprising-mucuna-pruriens-seed-powder-and-extracts-thereof-in-the-treatment-of-neurological-diseases-dt20060727ptan20060165822.php


Yes Fiona, brilliant enough to patent it for neurological diseases - not just PD.

paula

[Fiona]

By the by, Rick, brilliant idea about getting a national advocacy group to mobilize behind this request to release rights. Who has friends where? Let's talk amongst ourselves. And makes me wonder if that ever happened and why not and the details behind Amgen...guess I should read the book, huh?