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05-24-2016, 09:49 AM | #21 | ||
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Junior Member
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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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05-24-2016, 10:22 AM | #22 | ||
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Magnate
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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. |
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"Thanks for this!" says: | eds195 (05-24-2016) |
05-24-2016, 11:37 AM | #23 | ||
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Junior Member
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That study compares those that take carbidopa/L-dopa in smaller amounts and greater amounts but does not make a comparison with those not taking carbidopa.
My test was not all that controlled. One day I stopped sinemet and started the protocol. The results were that I felt better, instantly, the very first day. Not perfect but drastically better. That's all that I need for proof. Some people out there might like to hear about things we try. It's anecdotal. Many people don't like anecdotal, I get that. I'm sorry that the protocol rubs you the wrong way. Pharmacies can't bottle up mucuna... it's not a drug, they can't monetize it or else they would. If CHK Nutrition gets out of hand on their prices, that would be a great time for someone else to enter the market and sell the same exact thing. They can do that since no drugs or drug patents are involved. Unfortunately there is no magic treatment yet in the treatment of Parkinson's. This was a baby step in the right direction for me. It might not work for everyone but it did for me. Send me your address and I'll mail you the rest of my unused Sinemet. I'll throw in a big bottle of Rytary too. I won't be taking carbidopa. |
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"Thanks for this!" says: | SueC (05-24-2016) |
05-24-2016, 12:47 PM | #24 | ||
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Magnate
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that said, i'm not knocking anecdotes, most of what gets posted here involves personal experiences. i responded mainly to the other poster's unequivocal acceptance of HINZ's claim that carbidopa increased the death rate of pd'ers. i'm really not trying to convince you to stop the HINZ protocol, it's not worth my time and i know i couldn't. as far as pharmacies selling the supps, i don't think that is necessary but HINZ probably could give you equivalent brands of his supps that you could buy much more cheaply from other sources if he wanted to. |
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05-28-2017, 07:02 AM | #25 | ||
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Newly Joined
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Dear Ollie,
thank you for your post and the hope it offers. I am a newly diagnosed PD person, 41 yo, stage 1. I am considering amino acid therapy. I would like to ask you three questions please 1. Do you still use amino acid therapy (Dr Hinz protocol) and is it still as useful and works as well as it did when you wrote this post three years ago? 2. Have you been using amino acid therapy by itself or did you have to add conventional stuff (dopamine agonists, l-dopa tablets)? 3. Can you recommend a doctor (I will travel wherever for a good one)? Are you happy with your doctor? Thank you very much again, Ollie, and have a Sunday that fully lives up to its name Marat. Quote:
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06-04-2017, 01:12 PM | #26 | ||
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Junior Member
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How was she harmed by prescription meds? I have always assumed that when you stop taking a drug the side effects stop. I guess I am naive. I started Sinemet a couple of years after developing PD. Other than that a doctor had me try prameprexole (please excuse spelling). It made me into a sleep zombie so it only lasted a couple of days and I quit. Here I am with only the Sinemet.
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02-11-2018, 08:04 PM | #27 | ||
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