There is hope!

It's been 10 years since I was diagnosed - at the age of 58. I had been taking 2 sinemets (100/25) 3 x a day, and had been considering increasing the dosage to 4x a day - to make it a total of 8 sinemets a day - because, I felt that the sinemet was starting to last only 3.5 hrs. between doses instead of 4 hrs. It was also starting to cause problems and I also worried about this gold-standard drug not working any more as the years go by. My husband and I also decided to retire outside of the US - where we can make our own decisions about how we wanted to live and die, as we got older. It's our own long term health plan, so to speak.

i decided to try mucuna pruriens which I get imported from Zandopa - a co. in India. The shipment came and I started taking it about 3 months ago. I scoop of 7.5 mg of this powder took the place of my 2 sinemets. It started working from day 1. I now take only 1/2 a sinemet 3 times a day with the mucuna pruriens. So, I now take only 1 1/2 sinemet all day long!! I am absolutely shocked at how well it works. I continue with 1/2 sinemet, thinking that the carbidopa might help carry the powder thru the blood brain barrier easier. I may not need it and will try stopping sinemet all together one of these days. The neurologist had wanted me to try Neupro - but it didn't let me get off the Sinemet. This powder did - at a fraction of the cost of Neupro patches!

I also have started making marijuana tea before going to bed. This has helped w/ my muscle cramps in my left leg and left arm and helps me relax and fall asleep and keeps me from waking up. Needless to say, I am a very happy camper and wish that I had started this regimen of natural products from the onset. It would have protected me from getting worse starting 10 years ago. However, I feel that I am actually getting better each day - something they never tell you would happen as they insist it's a degenerative disease, with no cure in sight despite spending millions of dollars. I have more energy, no more on and off periods, and the powder takes effect in 15 minutes and I can take it with food!!!

I really wanted people out there to know what I have discovered that works for me so well, and perhaps you will find the same result. All PWP deserve to feel better! Just experiment with the dosage that works for you. It is completely safe as is the marijuana. Good Luck!

[DeParkiePoet]

Thank you so much for your persistence in following your instincts. i tried Mucuna for about a month and never noticed improvement. I will restart tonight by ordering from Zandopa. Thanks again.. o

Oh by the way where do I order the Tea from? joke ;<

[Hidden in reply to DeParkiePoet]

We retired to Medellin, Colombia. 1 gram is allowed for personal use should anyone even stop you or ask. The housekeeper puts it in chicken soup - common to do that here - for dinner. Except she had it for her own lunch, and could hardly finish cleaning that day!

Hope you'll give the beans another shot - yes I would stick to the Zandopa for now - it's been tested. Hikoi posted a good website for Zandopa. You have to play around with the dosage. My initial objective was just to lesson the Sinemet, so took 1 sinemet each time. It proved to be too much - and I would get nausea and even threw up. Now I mostly use slightly less than the scoop that comes w/ the Zandopa bottle and a 1/2 of sinemetj100/25.

[DeParkiePoet in reply to Hidden]

I just ordered it through Amazon, but I started yesterday with a Mucuna product called Dopabean. I hope it helps, no I know it will.

BTW: i spent some time in Colombia in the early 70's, in Taganga....

[Hidden in reply to DeParkiePoet]

Good luck on the mucuna. The trick is to get the right dosage for yourself. Too much made me feel sick. It's a fine line between working and not feeling great for about 20 minutes. But it's a small price to pay if it works for you. The powder dilutes better in warm water, then I add ice cubes or a little juice. Is Dopabean in capsules. I would like to switch to capsules, but I have a lot of Zandopa to finish first. So don't order too much, like I did.....lol.......in case your capsules work just as well.

What were you doing in Taganga? Back packing w/ not a care in the world, I suppose? I looked it up - near Santa Marta, and still a beautiful beach I see. I miss the beaches in Panama - but they are way too hot for me. Medellin mountains are better for me. How our priorities have changed. Your poem really tells it like it is - best description of what it's like to have this. Enjoyed it. Where do you guys live??

[Hikoi]

Allnatural,

Thankyou for this most interesting post and pleased you are doing so well. It sent me off on a google search and i found this research paper which supports your findings. I wonder if there are more.

You havent said where you plan to retire? Now you have got me curious!

Mucuna pruriens in Parkinson’s disease: a double blind clinical and pharmacological study

Abstract

Background: The seed powder of the leguminous plant, Mucuna pruriens has long been used in traditional Ayurvedic Indian medicine for diseases including parkinsonism. We have assessed the clinical effects and levodopa (L-dopa) pharmacokinetics following two different doses of mucuna preparation and compared them with standard L-dopa/carbidopa (LD/CD).

Methods: Eight Parkinson’s disease patients with a short duration L-dopa response and on period dyskinesias completed a randomised, controlled, double blind crossover trial. Patients were challenged with single doses of 200/50 mg LD/CD, and 15 and 30 g of mucuna preparation in randomised order at weekly intervals.

Conclusions: The rapid onset of action and longer on time without concomitant increase in dyskinesias on mucuna seed powder formulation suggest that this natural source of L-dopa might possess advantages over conventional L-dopa preparations in the long term management of PD. Assessment of long term efficacy and tolerability in a randomised, controlled study is warranted.

Read more here

jnnp.bmj.com/content/75/12/...

[Hidden in reply to Hikoi]

Hi Hikoi, it's very nice of you to post the website for Mucuna Pruriens. I think that's the only formal research that's been done other than all the research done in India for years and years - but of course that doesn't count, right?

We found ourselves not being able to handle the rainy winters in Seattle, suddenly losing 2 big clients to my husband's businees wanting to develop their own software, coming down w/ illnesses, and having no long term healthcare. First, we tried Panama city, Panama. Too hot and dirty - then last year moved to Medellin - paradise with perfect weather - all year round.

[Hikoi in reply to Hidden]

Wow Medellin. Visited in the 70's. Will be much changed now. Hope you enjoyed the recent Fiesta del libro y la cultura. I'd love to go but cant speak Spanish unfortunately.

[Hidden in reply to Hikoi]

Interesting how people came to Colombia as much as they did in the 70's, and because of Escobar - they stopped but Americans are finally now returning - young ones - not too many retired ones. So you keep up w/ Medellin? We almost went to the fair, because I love the Botanical Gardens - and wanted to see if there were any old books that I could use in my artwork - collage stuff, etc. But, I think it was really crowded.....and we chickened out. Still struggling with verb conjugation - but I get lots of practice talking to neighbors who walk their dogs and go to the same park that's next to our apartment. I just plunge on - my husband is shy and careful - so gets less practice, although he walks the dog more!

[PatV]

I will pass what you say on to my neuro. Unless he's in the pocket of big pharmaceutical companies, I'm sure he'll be interested. I am.

[Hidden in reply to PatV]

It's good to do that although the neuro probably has never heard of mucuna pruriens. But, it's good to aware of certain drug combinations that may not compatible. I find that I usually do my own research and pay close attention to side effects of everything. So far, nothing that would cause "sudden urges to commit suicide", or "may cause death" or some of the other warnings on TV commercials that are casually there, while we mindlessly pop all those pills like candy because they've been approved by the FDA. I guess I need to stop yapping..........

[wifeofparky in reply to PatV]

Hubby's MDS has done research using alternative medicine. We will discuss this at his next appt.

[Hidden in reply to wifeofparky]

Let us know what they say!

[Drevy]

this is exactly what I was looking for. How long before the Zandopa started working.? Please let me know any details that you may have.

[Hidden in reply to Drevy]

I could tell right away that Zandopa worked the same way as Sinemet for all the symptoms - but I had to work at the dosage that was right for me. I was just really surprised that I could cut down the Sinemet to almost nothing, even though I had been on carbidopa/levdopa for nearly 8 years. The on and off misery is much much reduced. I also like how I don't have to worry about timing w/ the food intake. The newer Zandopa is not as grainy -but I still use a straw to catch all the sand like powder that sink to the bottom. I am used to it now - but had to mix in a little juice in the beginning. It's very important to cut out the sugar and flour intake.......sorry! There are a lot of info out there for alternative healing for Parkinson's.

I also figure that even if it doesn't work as well for some people as it does for me, one would still be getting a great supplemnt for general well-being!

[Drevy in reply to Hidden]

What do you mean " i had to work on the dosage"? The instruction tell you to take 7.5grams with fliud. Do u take more or less. I've only been taken sinemet for 1 yr and it is the only drug I take that controls my tremors. I also take requip xl, and azilect. I want to get off of all of these drugs as soon as possible because of the side effects that I get. Thanks for the info.

[Hidden]

The suggested dosage is 7.5 grams. But, as you know, PWPs are all so different in their symptoms and their reaction to dosages of any medicine. I think the same is true for the mucuna pruriens beans. For ex. the instruction says 7.5 grams w/ liquid. But people take this as a supplement for general well-being, not just for Parkinson's. Under "Dosage", it just says "As Directed by the physician". so how many times a day should I take it? I had to experiment a bit. I was taking Sinemet 3 or 4 times a day, and just wanted to see if I could reduce the sinemet down to half. Was so pleased to find out that I could substitute 1 scoop for 2 sinemet 100/25's. Actually for me , just a little less than 1 scoop worked better for me. 7.5 sometimes made me nauseous. Also need it only 3x a day - 10am, 2pm, and 6 pm.

[ftadh in reply to Hidden]

hi im frm ireland and would like 2 know where i can get this product also the tea cant relax since dx in march im on 3 sinemet plus a day regards fiadh

[Hidden]

Hello ftadh!

Im sorry to hear that you are suffering - You are newly diagnosed. Don't let them scare you. Do your own research. When it comes to Parkinson's, you really have to help yourself.Thank God for the internet. I hope the Zandopa can give you relief. Just google Zandopa and you will get info as to how to order from India. - there is more than one company.They will ship it to Ireland.

The tea at night is made from Marijuana. I cook it in hot water and add a little coconut oil. You can use butter or other oils. The oil makes it a little stronger . I'm also going to use a vaporizer. I can't smoke it because I have asthma. I looked up legality in Ireland, and it seems that to have a little for personal use is legal there. Perhaps your dr. can get you medical marijuana to help you sleep at night. Good luck.

[maryalice in reply to Hidden]

Do you know if you will eventually have the same side effects as the l-dopa drugs like Sinemet? I've had PD for almost 15 years and I still haven't taken Sinemet. I'm so afraid of the side effects. I 've read that Sinemet has another component in it that carries the dopamine to the. brain. Do you know if you can just take the mucanna powder without taking any Sinemet.? I've really gotten to the point where I have to do something. Thanks so much for taking the time to share this information. You gave me some hope!

[Hidden in reply to maryalice]

Don't know what will happen long term - studies haven't come in yet - although India probably has a ton of research already done on it - we have to wait for the pharma co.s and FDA to get information, which is supposed to be more unbiased and factual. ..? So, we'll have to see. I just figure that I don't have that much time to sit around and wait and be poisened to death in the meantime. They think that mucuna has something in it that helps it cross the BBB to the brain. But also that carbidopa works well w/ mucuna, if not even better than w/ manufactured L-dopa. I can get Lodysyn, I think, here as the carbidopa - but it alone actually costs more than Sinemet. Plus, I'm happy w/ taking only 1/2 a pill 3x a day - should not be getting too much harm from that amount. I'm just happy that mucuna has bought me a few years more and I'm back to half of what I was taking 8 years ago - as far as taking a potent drug goes. Yay!

[ftadh in reply to Hidden]

thank u 4 d information i will look up d website and let u know how i get on dont tink d tea is available in ireland but i will c please keep in touch as i cannot cope with this fiadh

[DeParkiePoet in reply to ftadh]

Fiadh: First of all, RELAX! It is the best thing you can do for yourself, check your breathing, are you inhaling deeply or just surface breathing? Worrying never helps. But taking control of your life does. Don't believe for 1 Minute that your Doctor knows all they should know to help you. They have an innate resistance to natural support.

TRY this herb, it may help, it helped me get through my last few days.

Good luck

What part of Ireland are you from, I'm from Dundalk. I was just back 3 yrs ago. Loved it...

[ftadh in reply to DeParkiePoet]

hi jomc9696 im frm offaly wat herb do nu mean 2 take im not coping at all with this and i cant relax please send ne name of herb fiadh

[DeParkiePoet in reply to ftadh]

MUCUNA PRURIENS sold under the name DOPABEAN by an american company Solaray. let me know if you have trouble, I'll mail you a bottle..,

[Hidden]

Dear ftadh,

I'm not a doctor nor a herbalist. But, I am a person with Parkinson's, and sometimes, we can help each other more than the doctors or even other family members. I will be here to try and help if I can. I think you are overwhelmed and still dealing with the diagnosis. It feels like it's the end of the world at first. We can only deal with it one step at a time. Not being able to relax and get a good night's sleep is certainly an immediate problem to deal with.

There is another herbal tea that I take which works well for me as well . Here in Colombia, it's called the Goodnight Herbal tea made by Jaibel. It is made from Linden flowers. Perhaps you can find a herbal store there or any store that carries various teas for herbal healing of various symptoms, such as insomnia. These are the benefits of this Linden Flower tea:

whyfoods.com/flowers-eating...

[missfebruary]

I know this post was a while ago but in finding the right dosage for you did the mucuna cause any side effects - like extreme dyskinesia? Sue

[Hidden]

Hi missfebruary,

I am still taking Zandopa brand mucuna w/ 1//2 a sinemet three times a day. I don't get dyskinesia with the mucuna. Also, I am now making a tea out of marijuana every night to help me sleep. I was recently on a 3 week long trip, and instead of the marijuana, I took valerian capsules. That also helps my sleep. I'm trying to do meditation in the form of qi gong as well. Good luck! Don't give up. I keep trying different things ( natural if possible ) but I tell my doctor about them. Some people think I am obsessed with information coming off the internet, but it helps me to keep informed, and i need something to help me keep up with the daily battle. So far so good, progression has been slow. I make sure to leave the house for a walk everyday and keep myslef busy w daily activities such as shopping and cooking food for my husband and I............albeit in slow motion.....but what's the hurry??