Quote:
Originally Posted by Tryguy
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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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