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Topic Mucuna Powder Go to previous topic Go to next topic Go to higher level

By Knoosy On 2013.09.10 09:34
I'd like to share our experience with Mucuna Prurience powder. My PD man has been having increased freezing episodes. He has to take sinemet every 3 hours.
I have been researching many alternative options to improve his condition. I came across Mucuna and we ordered a bottle with 120 capsules at amazon.

It really helps. He comes on faster and doesn't go off as badly as before anymore. It even seems to have added mental clarity benefits. Mucuna has many other ingredients besides L-dopa which may have beneficial effects on the PD brain and which have not been thoroughly scientifically studied yet.

He has an amazing neurologist and after self medicating with Mucuna for two weeks, we talked to him about it. He supports our decision and says we should continue administering it if it helps. It says on the package that you can take up to six capsules a day and it does not interfere with sinement. It enhances it. My friend is taking 2 capsules in the AM and sometimes 1-2 in the late afternoon. It helps to keep him evenly on and less freezing occurs.

The doctor said that it's a good thing that it is available on the market even though it is not sold by big pharma. You don't need a prescription. He actually wants to suggest it to his other patients since we're having such success with it.

It's also sold as Zandopa. But the Mucuna capsules seem to work better.

By jcoff012 On 2013.09.10 13:31
I truly am glad you found this to work, but as with any type of medication or treatment, there are serious side effects that need to be discussed with a neuro or physican. Your PWP sounds like he is in generally good health and for him and those like him, it appears this may be a very good thing. For others who have heart problems or have diabetes, it looks like it could cause serious problems with blood pressure and/or interfere with those medications. Also says to be careful if you are on MAO inhibitors...I found a good description of the side effects on Lance Armstrong's LiveStrong website and by doing a Google search.

Sounds like this should be more thoroughly tested because, like you said, it enhances ldopa, which in a fairly healthy PWP could be beneficial. Whatever works, right? Glad your PWP is doing well. Good luck.

By Knoosy On 2013.09.10 13:46
I beg to differ. He is not generally in good health and we discussed it with his neurologist who is one of the best worldwide. He holds an important position with the Michael J. Fox foundation and said that there are no considerable side effects to be concerned with. His doctor is one of the most cited and respected authors on Parkinson's disease. He is familiar with Mucuna and its effects. I suggest you keep your fear mongering about alternative medicine to yourself when your concerns are not based in facts. You always respond to my posts in a most undermining way and I do not appreciate that because I have thoroughly researched, discussed with doctors and observed the most positive benefits. You are putting fear into other people before they had a chance to experience and research for themselves. Thank you for the well wishes, but I have to clarify that he is far from fairly well, but much closer to it since he is taking Mucuna. I posted this to share it with others who may benefit. Surely they need to be cautious and administer according to their loved ones health condition, but not reject it from the start like you seem to be doing since they may miss out on something good.

By dans316 On 2013.09.10 15:28
Wow,
From the little I've read, it seems to be a given that Mucuna can lower blood sugar and with someone who is diabetic and taking medicine for it, it could lower it to serious levels, yet your Neurologist doesn't consider that a serious side effect????

By jcoff012 On 2013.09.10 15:58
I did not respond to the initial post to incite anything. Heavens, I only pointed out that preliminary research shows possible serious side effects... I reread my post and thought it was nothing more than, "this sounds like it should be more thoroughly researched." That was positive, I thought...

When we love someone, we search for medicines that show promise and/or hope....something that works...All I said was good luck and glad it is working for your PWP, no hidden agenda from me...and I won't engage in any...Researching sources that are new and possible ways to help with PD is a good way to use the Internet.

By LOHENGR1N On 2013.09.10 16:03
The post is almost verbatem with other posts stating this claim. It has been spoken of for years as yet no studies proving it. If you scour this forum you might find posts claiming wonders from years ago. That said as I've stated before I don't care for claims that prey upon the sick and those who care for them. Caregivers and patient who desprate for a cure or better management of the disease grasp for anything to help. How many times are items posted and then a few weeks later everything is falling apart and paniced caregivers post asking what is wrong and what happened? Even one is too many.

And Yes this is a "caregivers forum" you know what I do care for everyone here..really, I care. I try to help everyone who is in crisis as best I can. And if it were only the caregiver who suffered from trying "new untested treatments" it would be bad enough but it is Us your charges who suffer most from trying this or that without consultation with our own Doctors. Not a claim that some other doctor okayed it. Run it by your loved one's Neurologist first don't self-medicate.

I do care dispite having run ins with others here. I will stick up for patients rights even though at times I'm mobbed by posts against me. Ive never done anything but spoke truth and have helpped many dispite suffering from this same disease. You can do what you want just run it by the Doctor first and look back at posts of over medicating with L-Dopa. Are you really qualified to on your own determine and administer medication or inhancing herbs? I've said my peace. I expect now there will be the same responce as before, but when harming a patient could be a real outcome of "trying" something "new" that isn't new but just recycled verbatem claims I will respond.

By Knoosy On 2013.09.10 19:50
Lohengrin,

Thanks for your concern, but no harm was done. My friend took only one capsule a day for about 10 days before we discussed it with his doctor who confirmed that up to six a day will do him no harm.

I'm also not trying to sell anything. Just reporting on the positive effects that we are experiencing with Mucuna under his doctors supervision. You will always find controversial stuff online in regards to alternative non FDA approved supplements which does not mean that they don't work. Big pharma will always push their products and try to discredit natural cures. My friend doesn't go off as badly since he supplements with Mucuna. It seems to help the sinemet to kick in and remain in his system more consistently. His focus seems improved and his mood is more stabilized as well. This is a forum for sharing and that's what I did here. It is up to everyone to evaluate on an individual level.

By Knoosy On 2013.09.10 19:53
Jcoff, peace. Sending you love and thanks for clarifying your points.

By lurkingforacure On 2013.09.11 18:41
We use mucuna, but not the capsules....we buy the organic mucuna in 1lb. bulk bags and mix 1.5teaspoons in water and drink it to get over the "offs" my husband experiences. Our neuro actually wanted to know about it because he has nothing he can offer his other patients for their offs. This is what we notice when we take it:

1. it hits fast, but drops you off fast too...gotta be sure you have some sinemet in your system so when it wanes, you can still move

2. my husband can eat and the mucuna still takes effect....
this is huge for us as even a cracker will ruin his sinemet no matter when he eats it

3. it can give stomach ache, if he takes several doses in a row, it seems to upset his stomach

We order ours from Banyan Botanicals, I think they are in New Mexico, USA. I know a lot of people who supplement their sinemet/med regime with mucuna, but realize it's not for everyone.

For us, mucuna can be the ONLY thing that can get my husband over that off.

By parkinit On 2013.09.13 21:13
I've been a rainbow chaser and am actually in the midst of removing several supplements we have added throughout the years that don't work for my PWP.

With that said, I believe we have to have hope and have to continue to chase those rainbows intelligently and with much thought and research. Our doctor does not approve any supplements of any kind, therefore we did strike out on our own as Knoosy did. I appreciate those that are brave enough to mention what they are trying here to help the rest of us. It us up to the rest of us to determine if it is something we/our PWP wants to try after doing the appropriate research on our own.

I did find that this product has had a small study performed almost 10 years ago: http://www.ncbi.nlm.nih.gov/pubmed/15548480 and in total 3 studies, with only one double blind study. All three showed reduction of symptoms of PD.

I have problems with not knowing the actual dosage my PWP is receiving as supplements OTC have a wide variance of purity and quality.

In one study I read, 30 g Mucuna = 1,000 mg of levodopa (http://examine.com/supplements/Mucuna+Pruriens/#summary5-0), but I'm sure this may vary by supplier.

I would think that you would have to concurrently adjust levodopa if you were adding Mucuna.

I also read that Mucuna may cause psychosis, which is something that I certainly don't want to deal with. I'm sure this is due to elevating the total dosage of levodopa through Mucuna with no Sinemet adjustments. Too much Sinemet may cause psychosis as well.

We have difficulty enough with juggling our meds and have found chewing a 50 mg tablet when in a down cycle helps. This was approved by my PWP's doctor. He has 3-4 50 mg floater pills he can take throughout the day to get him over severe down times. He rarely takes all 4, but they do help when taken. This may be a reasonable alternative for those who don't venture into the supplement world.

By lurkingforacure On 2013.09.14 22:32
There are studies out there on mucuna, granted, many of them are on animals, but since all drug studies start out that way too, that's a wash for me.

Mucuna will hit and take effect without any carbidopa or similar additive. The neuros all say it won't, but I can tell you that it does. It also does not, repeat not, cause dyskenisias for us. This means that if my husband is going off, and takes more sinemet, he will usually get dyskenisias...but not if he takes mucuna.

How much mucuna? We take the straight powder as I mentioned, 1.5 teaspoons in a glass of water (tastes like dirt, my husband says) and it will take effect in about 10-15 minutes. We take it sometimes in the morning when things are not working well, and lately have been taking it during the day so my husband can eat something.

I know one lady who takes a water bottle, puts in her mucuna, and just sips it throughout the day. She can tell when she needs to drink some more, and just makes sure she has it at her side. We all just have to do whatever works for for each of us.


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