Parkinson's Disease Tulip


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Old 05-24-2016, 09:49 AM #21
OlliePop OlliePop is offline
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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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Bogusia (05-24-2016), eds195 (05-24-2016), GerryW (05-24-2016), SueC (05-24-2016)

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Old 05-24-2016, 10:22 AM #22
soccertese soccertese is offline
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Quote:
Originally Posted by OlliePop View Post
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.
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.
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Old 05-24-2016, 11:37 AM #23
OlliePop OlliePop is offline
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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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Old 05-24-2016, 12:47 PM #24
soccertese soccertese is offline
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Quote:
Originally Posted by OlliePop View Post
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.
thanks for the offer but i can't accept prescription drugs from you, read the fine print on the RX label. I used to write software for pharmacies and had to design a program to print everything needed on a blank label in case the pharmacy ran out of their regular labels, it happens more often than you would expect so i just had to reply to your offer. kind of silly with pd drugs, people often try a drug, find they can't tolerate it and have extra sitting around. the real waste is in nursing homes, orders are changed all the time and drugs thrown away.

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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Old 05-28-2017, 07:02 AM #25
RockslideReed RockslideReed is offline
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Default Amino Acid Therapy

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:
Originally Posted by OlliePop View Post
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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Old 06-04-2017, 01:12 PM #26
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Default Dr. Marty Hinz

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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Old 02-11-2018, 08:04 PM #27
Marty Hinz, MD Marty Hinz, MD is offline
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Quote:
Originally Posted by soccertese View Post
i'm always a skeptic, can't help it. i agree that big pharma wouldn't want to investigate a similar protocol but it's not impossible to raise funds and find a researcher who would test this procedure or at the minimum interview patients who are taking these supplements and do case histories and possibly interview their neuros and write up a report. i participated in a small clinical trial conducted at a university to test forced exercise, their budget was below $$50,000. It wouldn't cost a fortune to hire an independent investigator to follow 10 verified pd patients who were on conventional meds and have the investigator observe how they do on the HINZ protocol and write up a report. they would need a neuro involved to test the patients and permission to see their medical records. ain't going to happen.

i think there is a huge conflict of interest when a doctor sells proprietary supplements to a patient, especially when the patient has to buy those supplement forever. in most cases, doctors don't sell drugs to patients, there is a conflict of interest plus for most drugs the reimbursement by insurance is so lo'w it wouldn't make sense. you have indicated you buy your mucuna from someone else but i assume you are the exception

you state your sister was harmed by conventional meds, may i ask what they were, the dosages and the harmful affects? all pd drugs have potential side affects and i'm not going to defend any of them except carbidopa/levodopa.

the monthly cost for pd drugs could be $1000/month if you are taking non-generics such as azilect and rytary. if you are just taking generic carbidopa/levodopa i think the private monthly cost would be less than $300, maybe even $200, this is a very cheap drug.

for me at least, with all the pd support groups out there and the internet making it easy to compare notes and find info, with the MJFF, other pd organizations and individuals funding research on alternative pd treatments - exercise for example, dancing, boxing - you can't patent that - there's no good reason why the HINZ protocol hasn't been independently tested.

if you study the history of treating parkinson's, there has been research on taking vitamin c, vitamin e, coq-10 and amino acids. maybe noone has done exactly what HINZ has done but everything under the sun was tried to treat pd, patients had a very bleak future.
I disagree, the FDA looks at two things in evaluating a new treatment, efficacy and safety. At the heart of things our approach is L-dopa, there have been hundreds of L-dopa studies since 1960. How many L-dopa studies do you need. We are not claiming we have improved efficacy, L-dopa efficacy is proven. We do claim we control side effects which in the past caused patients to not get enough L-dopa in for optimal relief.
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