Thumbs up for Mucuna Pruriens
 

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.

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.

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!

Mucuna? Really?
 

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.

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.

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

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

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.

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.

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.

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.

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.

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

Long time with PD
 

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.

kindred spirit
 

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.

kk - a question about on/off
 

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.

First of all, thanks...
 

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

keith - to new thread
 

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?

Great Idea, reverett123
 

Count me in!!!
Keith

Before I join you there
 

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

Just when you are saying how good your child is
 

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.

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.

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

Tincture???
 

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

tincture?
 

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.:)

blood sugar
 

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.

Tincture again...
 

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!

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.

sinemet and mucuna
 

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.

T..esting with fats, carbs etc.
 

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.

What seems to be evident
 

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".

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.

Fat Chance!
 

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!

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

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....

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

Mucuna availability in Canada
 

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

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

Question?
 

.
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