Parkinson's Disease Tulip


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Old 11-03-2013, 08:00 PM #71
soccertese soccertese is offline
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my advice is try carbidopa/levodopa first to see if you benefit from l-dopa. get that out of the way first. dose up to where you get the maximum benefit within reason.
i noticed a benefit the first day, i've read where some people can take weeks. you can always taper off of it, your're not going to become addicted.

so experience what pure l-dopa does for you, imho a lot of people who are "afraid" to take C/L because of all the horror stories they read and videos they see are trading quality of life for possibly a problem that may not ever occur. keep in mind that 100,000's of people taking L-DOPA DON'T POST HERE, so you are not getting a cross section of opinions represented on this board about C/L.
if you want to use mucana, then then i suggest you slowly replace the C/L with mucana. imho you can spend a lot of time trying to figure out the dosage and timing of mucana. i tried it as my first medication, i too was worried about C/L but i didn't get much of a benefit and it made me slightly nauseus.

i'm not a doctor and these are just my opinions. i was diagnosed in late 2001, have taken C/L for at least 6 years and get pretty good relief from C/L which had been tested in clinical trials and i can trust the purity and strength. can't say the same for MUCANA even if it says organic.

i've read where some people take it with C/L to get some carbidopa into their system which inactivates an enzyme in your peripheral tissues that converts l-dopa to dopamine which can't pass the blood brain barrier.

studies have shown that C/L does not speed up progression or kill neurons.
even with CARBIDOPA it's estimated less than 10% of the l-dopa gets into your brain. l-dopa is a naturally occurring amino acid. the small amount of L-DOPA you would be initially taking is just supplementing what your brain isn't producing anymore.

how do you know mucana isn't carinogenic or harmful in other ways? just playing devil's advocate. whereas C/L has been safely taken since the 1970's.
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Old 11-03-2013, 09:52 PM #72
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Default C/L and the wonders thereof

Since this thread is showing signs of life and causing my esteemed colleague Soccertese to take interest, I will briefly stir things a little.

Mucuna has a complex structure of over 400 individual substances. These include a number of amino acids and vitamins and minerals that offer a real "toolkit" for the repair of body systems. The hypothesis is that the varied material available is going to increase the repair speeds and quality. The sinamet, on the other hand is a highly purified single ingredient and is not comparable to the other. At this stage, we really don't know the truth so it becomes a matter of belief. I believe that there is enormous power in the possible synergies between those ingredients.

<Warning. Dopamine turbulence ahead! Return to your seats and assume the position.>

We seldom hear it discussed, but there is a concept in science of "elegance" and "beauty" as spooky pointers to "truth". It is usually used by physicists, the "mad monks" of science, but members of other disciplines have been found, their lifeless bodies slumped over their Big Chief Composition Tablets and their cold, dead fingers gripping their oversized Dixon Crayons as they have scrawled cryptic phrasing such as "My gawd that is ...." before slipping this mortal coil.
(Damn! I almost started a Fukushima Reaction there for a moment.)

<The turbulence has now passed and we will resume flying in just a moment. Thank you for flying with the Mother Ship Connection. >

And I feel that the idea of groups evolving together to their mutual benefit is both beautiful and elegant and, therefore, closer to truth than the primitive. About time to pass out the P-Funk. <If you don't know then you'll never understand, but I woke up this morning wearing Bootsy Collins's underwear!>

<And Keith Richards remains at large so far as anyone can tell....and Lou Reed is dead....>

Bob! Moondaughter! Get me outta here!
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 11-04-2013, 06:16 AM #73
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Ha! You made me laugh today Rick, when I am not really in a laughing mood. Really laugh!!

I"d say to anyone wanting to try mucuna, do it before L-dopa (Sorry, Soccertese I'm not advising anyone to - this is to those who are likely to do it anyway.) Go very easy and find what works for you. Sinemet is not easy to stop taking. There are horror stories, yes, and some of them are very real, but you have to take a common sense approach. If mucuna does not do anything for you, you will know it. if it does then what Rick says will resonate. If its not for you, then there are all the existing PD drugs, most of them work for most people some of the time, or even most of the time. To a greater or lesser degree.

I wish I had been given a choice, I was just told I needed to start treatment, without really knowing anything about things. Given the choice today I would probably give favas a try first, after making sure I had the test to make sure I could consume them safely (not everyone can). If you do not have fauvism, then they seem a softer option, and I like the idea of growing them, though that is something I might not get round to doing.

To the two people from South Africa - please PM me if you wish, to connect you with some pwp who are looking to coalesce on a 'south side of the world' basis, something that is much needed. Glad you are here.
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Old 11-04-2013, 08:39 AM #74
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1. C/L has 2 ingredients.
2. please read what i post carefully, i'm not saying not try mucana, just get a reference point with C/L before trying it. In no way am i saying mucana may not treat pd symptoms.
3. recommending fava beans as a viable treatment that rivals C/L, without trying it yourself is quite a leap in faith imho.
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Old 11-05-2013, 05:41 PM #75
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Thank you all for your valued advice, especially when itīs advice you wish you had had. That is truly altruistic.
I think I favour the ideas of R and L, but I appreciate the input of S.
The next quandry is "how do I know the mucuna I have sent away for is without contamination?". This is in line with another thread going at the moment.I have sent for organic complete mucuna, itīs a brown colour as opposed to some that are white. I presume they have extracted some substances. I go with Rev. on this one. I would rather take the whole plant. However, how do I know itīs not contaminated?............I know there have been instances of that.
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Old 11-05-2013, 11:00 PM #76
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Default not to worry

That color variation is good evidence that you got what you paid for. First, as a product with minimal processing you should expect the steps for getting a uniform color to be the first thing to go overboard. The customer wants it brown and dirty. Mucuna is a bean - one helluva bean that requires a nuclear powered food processer to crack. It is the coating or skin of the bean that gives different colors. The inner "meat" of the bean is more cream colored.

Second, mucuna is a low-profit item and the money just isn't there to finance much tampering. What I mean is that no one in their right mind is going to slip anything into my $ 20 bag of MP if it takes a $ 400 plane ticket to get there. Unless you are running a Big Pharma false flag operation....

Third, you can easily test your own sample. Just let it get on something wet. It is the blackest and messiest stain that you can imagine. Use OxyClean. It is the only thing that touches it.

And finally, a little game of mucuna trivial pursuit- Who owns the patent rights to the use of MP to relieve fhe suffering of PD? What? You say that you didn't think that ancient knowledge going back 5,000 years could be patented? Oh, innocent ones.

Hand me the envelope please--- The world wide patent rights to any use of mucuna pruriens in the treatment of PD was granted about ten years ago to a group of eight of the top neurologists in the world with the US representative being the most-published neuro in the US. Yes, that is correct, ladies and gentlemen, we are speaking of Dr. "Oh, THAT million dollars in unreported consulting fees, Your Honor!" Warren Olanow of New York's Cedar Sinai. Some have dared to suggest that this was a tactic to bottle up research on mucuna when it became clear that Big Pharma was going to have a problem when MP rode into town and shot their cash cow. But that was just the cynical muttering of some disgruntled patients who mattered no more than a disgruntled South African manganese miner.
I'm sure they will share the research. Any day now.

Quote:
Originally Posted by ladybird View Post
Thank you all for your valued advice, especially when itīs advice you wish you had had. That is truly altruistic.
I think I favour the ideas of R and L, but I appreciate the input of S.
The next quandry is "how do I know the mucuna I have sent away for is without contamination?". This is in line with another thread going at the moment.I have sent for organic complete mucuna, itīs a brown colour as opposed to some that are white. I presume they have extracted some substances. I go with Rev. on this one. I would rather take the whole plant. However, how do I know itīs not contaminated?............I know there have been instances of that.
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 11-24-2013, 10:44 PM #77
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Default how much mucuna

Hi there,

I am trying to start my Dad on mucuna. I brought himalya brand mucuna from whole foods. He does not take any PD medication yet but I really want to see if this will help his tremor. The bottle says one capsule daily. The supplement facts say there is 6% levodopa.

Any recommendations as to how much he should take.

Thanks in advance!

Shar
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Old 11-25-2013, 12:04 PM #78
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there's 15mg L-DOPA /capsule.
smallest prescription l-dopa tablet is 100mg, i believe this is the starting dose, so tiny amount of l-dopa.
i've read posts here where people are taking tablespoons of mucana.

anyway, caution would make one try 1cap/day, if that has no side affects then 2, then 3 maybe.

you want to find a dose that works and doesn't have side affects. then you can progress to how often, l-dopa has a short half life, maybe 90 minutes.
the wise thing is to have him see a neuro. put him on sinemet and see if it helps his tremor, why screw around with your father's quality of life?
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Old 11-25-2013, 12:12 PM #79
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Thanks Soccertese.

He has seen a MDS. The MDS says the Sinemet may not help his tremor and encouraged him to wait until he needs the sinemet. He is going to ask for Sinemet at his next visit.

In the mean time, I'm curious to see if the mucuna helps.

Shar
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Old 11-25-2013, 12:34 PM #80
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Default the ankle bone is connected to the shin bone ...

i've read anecdotally where exercise, tai chi, etc has helped tremor and i agree sinemet likely won't help much but it might make your father feel better in general, maybe exercise more.

i never had a noticeable tremor.

http://articles.kwch.com/2012-05-16/...sease_31732634
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