Quote:
Originally Posted by OlliePop
I'd like to chime in here.
I have Parkinson's (2 years diagnosed). I had taken Sinemet for most of that period (3 x 25/100, went up to 7 1/2 pills total then back down). Improved my tremor and some rigidity. In addition to pain/rigidity, I was quite fatigued and depressed.
After an unsuccessful Rytary trial, I switched to the Hinz/Stein protocol.
I take 1.2 grams of Mucuna 3 times a day. The biggest difference that I feel is no more depression, no more fatigue!! Yay!! My mood is so much better.
I still struggle with pain/dexterity on my starboard side but mostly only in the evenings. If I increase the mucuna any more, I start to feel like I have too much and feel flush/heat/discomfort/pain on both sides (same with Rytary). I think I could take 10 grams of L-dopa and I still will not fully regain the right side dexterity.
Dr. Hinz said, I am not the norm in the amount of Mucuna. Most take much more. My take on things is that people with Parkinson's are like snowflakes, we are all different. Full disclosure, I take Cannabis as well. I have taken much less since the switch but believe that it's helped with everything (it is neuro-protective) however, the change in the way I felt the day of the switch to mucuna was profound.
Socc - You have an issue with the cost of the program.. Yes, it is more expensive, but I will gladly pay to feel this much better. I am a believer in the relative nutritional deficiency of carbidopa.
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thanks for that post, it is informative.
i would like to point out a recent study where very large amounts of cabidopa were given to pd patients and most felt a little better.
"Are High Doses of Carbidopa a Concern? A Randomized,
Clinical Trial in Parkinson’s Disease
Lissa S. Brod, MD,1,2 Jason L. Aldred, MD,1,2 and John G. Nutt, MD1,2*"
ABSTRACT: Recommended doses of carbidopa
are 75-200 mg/day. Higher doses could inhibit brain aromatic
amino-acid decarboxylase and reduce clinical
effects. We compared 4-week outpatient treatments with
carbidopa (75 and 450 mg/day) administered with L-dopa
on the subjects’ normal schedule. After each treatment
phase, subjects had two 2-hour L-dopa infusions. The
first infusion examined the effects of carbidopa doses
administered the preceding 4 weeks, and the second
infusion determined the acute effects of the two dosages
of carbidopa. The antiparkinsonian effects and L-dopa
and carbidopa plasma concentrations were monitored
during the infusions. Twelve subjects completed the
study. Carbidopa concentrations were eight times higher
after the high-carbidopa phase. Area under the curve
(AUC) for clinical ratings did not differ for the four L-dopa
infusions, although AUC for plasma L-dopa was modestly
increased with 450 mg of carbidopa. Nine subjects
reported that the high-carbidopa outpatient phase was
associated with greater response to L-dopa. Doses of 450
mg/day of carbidopa did not reduce the responses to
L-dopa infusion, extending the safe range of carbidopa to
450 mg/day. VC 2012 Movement Disorder Society
another trial addressing higher doses of C/L is "Carbidopa/levodopa dose elevation and
safety concerns in Parkinson’s patients:
a cross-sectional and cohort design"
the conclusion was "Results: There was no significant difference in motor,
mood and quality-of-life scores in patients consuming
below and above the 800 mg carbidopa/levodopa
threshold, though a mild worsening in dyskinesia duration
was noted without worsening in dyskinesia pain and
disability. In PD patients who crossed the 800 mg
threshold between two consecutive clinic visits, a
significant improvement in depressive symptoms and
quality-of-life measures was demonstrated, and in these
patients there was no worsening of motor fluctuations or
dyskinesia.
Conclusions: The data suggest that PD patients have the
potential for enhanced clinical benefits when eclipsing the
800 mg carbidopa/levodopa threshold. Many patients will
likely need to eclipse the 800 mg threshold and
pharmacies and insurance companies should be aware of
the requirements that may extend beyond approval limits"
Carbidopa/levodopa dose elevation and safety concerns in Parkinson's patients: a cross-sectional and cohort design. - PubMed - NCBI
i agree, everyone is different. i agree the cost of the hinz treatment is high, especially since the cost of the supplements can't be that high, and i always think there is a conflict of interest when a healthcare provider sells you supplements, that's why pharmacies dispense drugs, not doctors. just my opinion. i suggest you keep a little C/L on hand in case you can't get your HINZ supps or there is a major price increase.