Excellent article on Mucuna
 

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

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

Its a solitary journey
 

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

thankful for the innovators and outliers
 

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.

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.

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?

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.

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?


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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

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

TRYGUY,
IN LIEU OF taking an agonist at night to extend your ON time have you tried 300mg of 50/200er WITH A LITTLE OIL/FAT SUCH AS FISH oil capsule, butter/cracker, etc to try to slow gastric emptying which will extend the availability? just a theory. read a C/L PKG INSERT (ER) on bioavailability.
or set an alarm at least 45min before you predict you'll be OFF, take 50mgIR + 200ER, THE IR should kick in in 45min and the ER in 90min. that might at least remove anxiety. you might have to wake up only once.

Pharmacokinetics and bioavailability of Sinemet CR: a summary of human studies. - PubMed - NCBI

just curious, 50/200 never works, day or night? which generic are you using?

Soccer or anyone,
How long does the 50/200ER last for you at night and/or day. Neuro has me trying Rytary at night but not getting much out of it. Anyone have thoughts on the 50/200 vs. Rytary?
Thanks,
Eric

TAKE BACK YOUR LIFE. Its our choice. Ive been diagnosed since 2010 and avoided meds for 4 years. Then took low doses only. Last night I dumped rasigaline, (Azilect) best sleep for 4 years. This Thursday the Macuna arrives, then I dump the poison that is added to synthetic L Dopa (Carbidopa (or benzerazide). Synthetic L-Dopa reminds me of genetically altered foods btw.

My precusors for seratonin, my own Dopamine and 300 other enzymes in pathways have been destroyed by neurologists. (The Machine)

THESE ARE MY MAIN PROBLEMS. Medication induced neurodegenarative processes. Thank God they are reversible. It wont be easy but the alternative is a faster decline, way faster

Take mucuna with 5 HTP do not take carbidopa. See my other posts

I have never tried RYARY. I would assume the RYTARY would work better than the 50/200ER though since it supposedly has a longer lasting extended release affect. my only advice would be test if adding some "fat" extends the affect of the RYTARY. IN THE following article which came out in 2015, mentions trying "fat", dunno if hauser still supports that idea but same lengthened half life is mentioned for 50/200ER, adding food will decrease bioavailability but will extend the half-life so you might try 300mg of 50/200ER at night with some black olives or some low protein carbohydrate with some olive oil added? less will get into your blood but it may last longer so try 300mg of the 50/200 or if you want to try just 250mg split one of the pills unequally and try to get 150mgER to add to 100mgER (not sure if the 50mg segment you could get by splitting again 1/2 of a split 200 would still have ER features anymore so better to use the 50mg ER chunck like it was an ER pill?. just a guess but the 100mgER tabs have no splitting line so aren't supposed to be split but the 200's have the line). i can get thru the night with just one 50/200 but because of my high blood pressure i set my alarm to wake up in 4hrs so i can check my BP and decide if i need to take more ER/CR to lower it for the next 3hrs after which i'm up. i've tried BP meds but my BP goes too low at times, so i use only C/L to control my BP, enuf said on this pd affecting my autonomic nervous system. i haven't tested 300mg of 50/200 with fat to see if it will last me thru the night, for me the goal is keeping my BP down for 7-8 hours while asleep, not preventing waking up in a panic, but if that dose keeps my BP down for that length of time it will also control my major pd symptom which is rigidity. i'll try it and report back.

"Effect of Food
As with carbidopa/levodopa IR, Rytary can be taken with or without food. One gets the quickest and most consistent (initial) absorption taking it away from food, but if a patient experiences nausea, taking it with carbohydrate may reduce the nausea. Protein can reduce absorption, but whether this is clinically relevant depends on how sensitive to small dose changes the patient is. Interestingly, high fat meals delay absorption and reduce the amount absorbed, but can potentially lengthen the duration of benefit. Although this has not yet been studied, one might take Rytary at bedtime with a high fat snack such as ice cream, in an effort to extend benefit into the night as long as possible. "

How to Dose Rytary by Robert A. Hauser MD 3-12-15 | Medical Treatments | Medicine

Soccer, thanks for taking the time. I will give the Rytary more of a chance and try it with a snack to delay absorption. I can eat half a cow 10 minutes after I take my usual dose of c/l and mucuna w/out a problem, but pay for it at the other end; sometimes up to 4 hours later after a medium/high protein meal meds still don't work, very frustrating. I try to be ON a bit when it's time for sleep so I can be comfortable enough to fall out, so the Rytary delay should not be a problem and could be a solution if it extends its usefulness.

Eric

yep, keep in mind that 100mg of C/L will improve your symptoms somwhat yet probably only 5-10% of that gets into your brain and only part of that C/L gets to where it is needed in the brain since it has to diffuse there vs being manufactured where it is needed. this doesn't matter that much if your're still at the stage where you have what, more than 20% of your dopamine producing cells? my point is that the brain needs very little dopamine but if your're dependent on exogenous dopamine like we are then eating even 10grams of protein will block out most of the l-dopa you take until it is cleared from the blood plus any amino acids similar to l-dopa in the protein that gets into the brain is competing for enzymes in the brain that convert l-dopa to dopamine, blocking the enzymes receptor sites from accepting l-dopa. just speculating on that but controlling my craving for cheese, pizza, yogurt is tiresome. i mentioned this before but if i knowingly eat too much protein i'll boost my next dose from 150 to 250, and if i don't come on in 75min i'll take another 100mg, if that doesn't kick in in 45min i'll take 50mg. i measure my BP before taking another dose since i don't want it to go too low, luckily i seldom get dyskinesias. i tried generic mirapex which isn't affected by food, couldn't tolerate it, saw things that weren't there when i got close to 3mg/day. i could try requip-xl, seems like all the advanced pd'ers from britain who post here are on that, just have to push my mds to write me the RX. i have no good reason not to try rytary other than the cost.

hopefully inhaled l-dopa and the sublingual apomorphine will help out as "rescue" drugs but the cost might be too high.

I'm similar after dinner when one dose doesn't work I will keep adding smaller amounts in time frames you mention so that I can fall asleep without using up any of the dose I take right when the lights go out. Have eaten a fatty snack (Smart Balance on chips) last 2 nights just before Rytary dose and lights out. First night, 5 1/2 hours and last night 4 1/2 both followed by dose of c/l and mucuna and the nights were manageable, so thanks for the suggestion and Hauser/bioavailabilty links.

I just started the Requip xl 4mg up from 2mg which did nothing I could tell for 6 weeks but only a week in, will report back, hoping for something good out of this. Neuro says should round out my dopamine levels so I don't deplete so fast and crash which really rocked Jan/Feb with anxiety. Now I understand how bad those crashes made me feel and I've broken the vicious cycle of anxiety starting the moment I sense an off period coming, but still makes me shaky and mentally weaker.

Definitely interested in the sublingual Apomorphine, which was delayed end of January by FDA.... Sunovion Receives Complete Response Letter from FDA for Apomorphine Sublingual Film (APL-13277) | Sunovion

Here is a guy who uses the Apomorphine pen in the UK, hat tip to John Morris over at HU. Watch video - FYI - Parkinson'''s Movement | HealthUnlocked

Would be great if a rescue drug could help cut down on some of the crappy off periods you suspect are coming from a meal, first thing in morning or whenever.

To help answer some of the recent questions posed in this thread, you can use an app that I wrote to draw graphs of levodopa equivalent plasma levels during the day due to different drug regimen. This is based on the pharmacokinetic properties of the drugs used and the idea of levodopa equivalent dose (e.g 100mg of levodopa/carbidopa is "worth" approximately 5mg ropinirole).

Parkinson's Disease Measurement: PwP, surveys, trials, analysis

Unfortunately, I've not been able to deal with Rytary within this framework. But, you can approximate one Rytary pill with four suitably timed and sized L/C IR pills. See,

https://www.neurotalk.org/parkinson-...ghlight=Rytary

You're right the smoothing role played by ropinirole CR (Requip XL) is due to its longer half life.

John