[moondaughter]

Mucuna and Parkinson’s Disease: Treatment with Natural Levodopa | IntechOpen drop mic......

[splibsplab]

I am utterly astonished at the colossal failure of 99% of the western medical establishment with regard to Mucuna.

Particularly when it comes to YOPD.

They call Sinemet the "gold standard". How can something be the gold standard when it cannot be given in sufficient dosage to alleviate symptoms because of developing dyskinesia?

So instead of giving the "gold standard" they instead try to give you agonists which give you a 15% chance of destroying your life with horrendous impulse control disorders leading you to cheat on your spouse or spend your life savings gambling. How is that even considered to be a viable option?

YOPD medication is such a minefield. It's just so easy to go down a bad path that has terrible long term consequences.

Meanwhile all this time there is bean powder that's been used for thousands of years that will treat the symptoms better than the "gold standard" Sinemet while at the same time not causing terrible side effects?

How can it be that is not the gold standard?!?

How can it be that your Neurologist doesn't say anything about it and doesn't even know it exists?

Why is it necessary to learn about it by doing your own research for hours every day and doing self experimentation?

I suppose the answer is probably some kind of deep systemic prejudice in the research community against "natural" cures. It is sad that has caused so much unnecessary suffering though.

I guess it's not fair to fault the Neurologists too much, I can understand they are in a position where they work in a framework kind of handed down to them by researchers. The colossal failure is more at the research level I guess.

- splibsplab

[moondaughter]

Originally Posted by splibsplab

I am utterly astonished at the colossal failure of 99% of the western medical establishment with regard to Mucuna.

Particularly when it comes to YOPD.

They call Sinemet the "gold standard". How can something be the gold standard when it cannot be given in sufficient dosage to alleviate symptoms because of developing dyskinesia?

So instead of giving the "gold standard" they instead try to give you agonists which give you a 15% chance of destroying your life with horrendous impulse control disorders leading you to cheat on your spouse or spend your life savings gambling. How is that even considered to be a viable option?

YOPD medication is such a minefield. It's just so easy to go down a bad path that has terrible long term consequences.

Meanwhile all this time there is bean powder that's been used for thousands of years that will treat the symptoms better than the "gold standard" Sinemet while at the same time not causing terrible side effects?

How can it be that is not the gold standard?!?

How can it be that your Neurologist doesn't say anything about it and doesn't even know it exists?

Why is it necessary to learn about it by doing your own research for hours every day and doing self experimentation?

I suppose the answer is probably some kind of deep systemic prejudice in the research community against "natural" cures. It is sad that has caused so much unnecessary suffering though.

I guess it's not fair to fault the Neurologists too much, I can understand they are in a position where they work in a framework kind of handed down to them by researchers. The colossal failure is more at the research level I guess.

- splibsplab

Hello
splibsplab-welcome to NT! It took me some time to figure out how to benefit from mucuna....when I first tried it it either didn't seem to work or it made me feel a little nauseous....it was only by chance I discovered that I could take a small dose of it if I combined it with one half of a 10/100 tab of sinemet .....I tried combining it with lodosyn (carbidopa only) with no result.. I also found that the mucuna extract was easier to take than powder and easier on my stomach.....and some brands of mucuna weren't effective for me.

No insurance and limited funds has made self-reliance necessary and early on I read that the dopamine agonists can cause terrible misery....better to stay with small amount of sinemet ... I too am horrified at the prospect of the psychological effects of the agonists even though some PWP seem very satisfied with them.

Mucuna definitely is my preference though I need both.

Kind Regards,
MD

[moondaughter]

Ignorance does not come without a cost...we may already have answers to addressing our problems -we just need to adjust their application (for example consider the new LD inhaler) and we may also discover less can be more - .
Somewhere along the line we lost our wisdom ...and respect for the embodied knowing of ancient systems of medicine.

[splibsplab]

re:
> splibsplab-welcome to NT!

Thank you MD - I've been lurking reading this board for many several years now but your article got me riled up enough to actually post!

I have been trying Mucuna tablets for a couple of years, mostly with a concept of boosting 25/100 extended release Sinemet. It helped some but a couple of months ago I decided I'm getting pretty tired of putting up with symptoms and wanted to do more medication. But before going down the regular road with dyskinesia waiting along the way I decided to experiment with Mucuna some more and for me the powder form has been working well. Not at first but this time I decided to not be too conservative about taking a larger amount and then suddenly it was working better than Sinemet.

Still have a few things to work out like it doesn't work as well for me at the beginning of the day and I would think that digestive enzymes should help with larger doses but I'm still in the process of trying those.

I wouldn't be surprised if different forms work better for some depending on your particular digestion.

That's kind of curious that just carbidopa by itself + Mucuna didn't work as well for you as 1/2 sinemet + Mucuna. It would seem to make sense that those should have been similar. Maybe you needed to take a higher dose of the Mucuna?

I have become suspicious of carbidopa recently, I guess you must be too if you're using those 10/100s that nobody usually uses.

re: Some brands not as effective - seems like if it's processed too much to just concentrate levodopa and remove other stuff that may be counter productive since like the very interesting article above mentions it's the currently unknown "other stuff" that seems to be pretty important.

re: agonists - certainly they do work well for many but there are too many stories about divorces and shattered families for me. Seems like such a huge risk, I'd prefer a side effect like your head might explode over a side effect that your family might be broken up because you will do bad things.

The potential for Mucuna to have the fewest side effects seems to be the best path especially for YOPD where the path is going to be long.

It's really hard to figure out what to do with things happening in such slow motion. You can't tell if you made the best choice until after you've gone something like 5 years with it.

The other thing that I've been trying is nicotine, that's another area that's very promising and also woefully unexplored in research currently despite significant evidence that it does something to PD.

[soccertese]

i read the article. i've made half hearted attempts on trying mucana so can't comment on it's affect. i find his claim that green tea is a l-dopa enhancer hard to believe, i perceive no benefit. what gets me is he states "These “carbidopa-like” and “entacapone-like” effects can be seen with green tea, and they are independent of their other neuroprotective benefits [57] so the tea is recommended for many Parkinson’s disease patients." - if this were true wouldn't the pd community of green tea drinkers have posted their beneficial experiences?. the article he cites is about 1 person.

i think mucana is ok if you are in a poor country and can't afford C/L. the one major worry i would have about using it alone is there are no quality guarantees on this product, you might not even be getting mucana or might be getting mucana spiked with l-dopa.

i find it strange that the article doesn't just recommend brands and doses and the reader will have to go thru trial and error to find what works.

i find this interesting that the mucana was cooked first in these african studies.
"I applaud the laudable deeds of neurologists who have opened clinics for patients in Ghana and Zambia where they have already served over 100 patients. There they cannot prescribe Sinemet because it costs a prohibitive dollar and a half each day per patient; meanwhile Mucuna pruriens grows spontaneously all around them. With the collaboration of the local authorities, they began to systematically prepare seeds of Mucuna (harvesting 12 different types) cooking them first to eliminate antinutritive substances.

They administered Mucuna without special extraction methods, although they could not integrate carbidopa, and have obtained the first results: the levels of levodopa in the blood increase, demonstrating that it is being absorbed [58, 59]. Patients improved although the system is so primitive that they suffered some side effects such as nausea, dry mouth, and orthostatic hypotension [59].

so should you toast mucana to inactivate possibly damaging enzymes?

[soccertese]

as an aside, if you want to intake less carbidopa with your l-dopa and have more options on dosage sizes, get the 25/250 C/L. It's also a cheap way to build up a reserve of C/L, i try to keep 2-3 months in reserve, i'm in seattle and ya never know when mount rainier will erupt or we'll have that overdue +9 earthquake. plus imho the supply chain on C/L is scary, i don't think there is a U.S. mfg of sinemet or C/L or even carbidopa and l-dopa by themselves. and i'm pretty sure MYLAN makes brand name SINEMET for MERCK and that's not in the U.S.

and there are what, just 4 C/L mfg's left: mylan, sun, accord and activas? MAYNE bought TEVA'S C/L and ACTIVAS's C/L which was owned by TEVA and now only makes the ACTIVAS generic under their own NDC as far as i know? i haven't been able to get the mylan 50/200 ER for over 5 months and other company's generic of this drug have also been hard to obtain, simply absurd and exasperated by the decreasing number of generic manufacturers willing to produce these cheap generics and that india is producing more and more of them.

[Tryguy]

After failing with the Hinz protocol, I tried C/L and added some mucuna l-dopa from the internet. The quality has been very reliable and I have gotten much of my life back. Still I search though... for something better.

An issue I would like to fix is sleep. Sleep is good only if there is enough dopamine in the brain reserve. The second it runs out, I wake up. I take another dose, sit in a chair for 15 min (for absorption) and go right back to bed and sleep. There must be a better way. 50/200 ER does not work..

Thoughts anyone?


Sent from my iPad using Tapatalk Pro

[splibsplab]

Originally Posted by soccertese

i find it strange that the article doesn't just recommend brands and doses and the reader will have to go thru trial and error to find what works.

It doesn't seem particularly strange to me - this article specifically recommends getting this information from a doctor and advises taking it under medical supervision instead of just on your own.

Of course currently finding such a doctor is not all that easy though, that's the problem.

- splibsplab

[eds195]

Tryguy,

Same issue with me since mid January when I fell off the Parkinsons cliff after managing well since dx in 2007. All came about very abruptly, including major anxiety the moment I sense off period coming. Been in this vicious circle for about 6 weeks as PD creates the anxiety which in turn makes my symptoms worse and I shake uncontrollably.

Like you, I wake up when my "sleep dose" wears off after 3 1/2-4 1/2 hours and not gently. More like someone punched me and the first thing I feel is the lovely heat of anxiety in my chest. So I take another dose and try to add a couple hours more of sleep to survive the day.

Seeing neuro in March who put me on 2mg of Ropinirole xl (5weeks ago) to round off my dopamine declines. Can't tell if it's working with all the anxiousness and shakes though.

Looking for any thoughts as well before I see my doc, thanks.

Eric