Using Mucuna and Carbidopa?
 

Hi, I spent a year attempting the Hinz protocol to no avail, and eventually surrendered to the C/L (Sinamet) treatment. However, 3-4 pills of 25/100 per day did little. SO.. I added some left over Mucuna from Hinz with each C/L where I have reached at least a functional state and can play my guitar again after 2-3 years. I still supplement with B6 to help keep the Dyskinesia monster at bay. (I have never had any)

I am still fine tuning and looking to eliminate the C/L and go straight Carbidopa + Mucuna only. Are there are any other PD Warrior renegades out there trying anything like this?

Btw, I am an exerciser, attitude maven, curb walker, and 58 yr old dad of two. More gait dominant, no resting tremor, diagnosed 7 years now.

Thanks in advance!

AB aka Tryguy


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hey, how much b6 are you taking ,never heard before about B6 TO CONTROL DYSKIS , WHERE COULD I FIND THIS INFO ?

CONCERNING MUCUNA PRURIENS, DO NOT TAKE ZANDOPA ,IT'S NOT MUCUNA BUT THE ONE FROM BANYAN BOTANICALS IS GENUINE ONE

what happens if you take more than 400mg C/L? keep in mind when l-dopa is delivered directly to the small intestine (duodopa) more l-dopa is given than when delivered orally and those patients have less dyskinesias, and it was observed that when duodopa is stopped, that benefit lasts for a few weeks. so that supports the theory that dyskinesias are increased by fluctuating concentrations of l-dopa, not by increasing l-dopa.
sounds like you are doing well on your regime. just posting my opinion that you shouldn't fear going over 400mg. and how do you know if there is a possible downside to taking mucana for years?
trying different C/L generics to see if one works better for you might be worth it and have as much benefit as using mucana, or not :)
you also might want to investigate natural mao-b and comt inhibitors, azilect/selegilene are mao-b inhibitors and entacapone is a comt inhibitor.

i will post links, can't find them right now.

Tryguy,

What are you trying to achieve?

You mention "looking to eliminate the C/L and go straight Carbidopa + Mucuna only", but mucuna contains levodopa.
Sinemet ~ C/L ~ levodopa + carbidopa ~ mucuna + carbidopa
(I am not claiming dose equivalence in the above "approximations".)

As I see it, reasons for looking at mucuna are:
- there may be other active ingredients in mucuna not found in C/L which help you;
- the longterm taking of carbidopa is claimed by some people to be harmful, and mucuna offers a route to get levodopa without carbidopa;
- mucuna offers an alternative source of levodopa, which is handy in the event of any supply problems;
- using mucuna to help understand the effect of different drug regimens on you, in the hope that you can fine tune them;
- pure intellectual curiosity.

It would be nice to have separate and divisible sources of:
- levodopa;
- carbidopa;
- entacapone.
If these were readily available, you could "walk the state space", and find what is optimal for you.

John

Why mucona?
 

i know what i have to say may not ne that popular but I can't see any reason mucona would br superior to l-dopa pharma preps. Mucona- the velvet bean- is a "natural" source of many compounds, including l-dopa. Arsenic, lead and cyanide are also "natural". In fact approximately 50% of FDAa approved pharmaceuticals are derived from natural sources. I tried mucona and like many others found the dosing and predictability to be too variable. In my mind the only way mucona can be superior is if one or more of the other compounds in the bean--e.g various alkaloids, coQ, etc. are providing the synergy or if you are experiencing the placebo effect. i am a firm believer that :

1- we know our bodies best
2- if you are getting worse on conventional therapy and want to try a non-FDA approved compound that makes physiologic sense and has a decent risk-benefit ratio- i would support you
3- PD is a disease that is so unpredictable and so many variables contribute to your specific phenotype- pragmatic "experimentation" with diet-meds-etc. is often superior to following a rigid schedule provided by a "specialist". I am a patient and an MD.
4- the placebo effect is quite real and powerful in PD patients
5- the FDA is often slow and too conservative

No matter what- if it ain't broke-don't fix it!---dave

Dave,

Welcome to the forum.

I agree with your comment 'pragmatic "experimentation" with diet-meds-etc. is often superior to following a rigid schedule provided by a "specialist"'.

Much to the annoyance of my medics, who want me to follow a 3 hour dosing schedule, I prefer to take my meds when I feel that I need them, or more precisely so that they will kick-in in time to stop me going "off".

We could get more out of our experimentation if we had hard data, e.g."off" duration, tap test, levodopa content etc..

John

Thankyou- and I agree

A disaster waiting to happen in the future. When you have brain damage (Parkinson's) you should not experiment on yourself.

Marty,

Welcome to the forum.

You write: "When you have brain damage (Parkinson's) you should not experiment on yourself."

What is it about brain damaged people that brings you to that conclusion?

What other activities do you think brain damaged people should not do?

John

Hi TryGuy,
Perhaps a slight increase with Sinemet instead?
The dyskinesia when it becomes a problem can be fixed with DBS.
Do you see a movement disorder specialist?
If not they're the type of neurologist i've found deliver mostly sound advice.
Unless they've done human drug trials and carried out double blind placebo studies in large reputable teaching hospitals and labs I'd be dubious.
Best wishes