Dr. Marty Hinz discussing his research on Amino Acids & Parkinsons (Video)
 

https://blab.im/brainbodywellness-br...rt-brainbody-1

Interested in what anyones thoughts are on the video and what he says. I am undergoing the treatment for TBI, but thought since he discusses Parkinsons extensively in this video, that it could be of value to some of you.

Thanks for posting this! It is all good information and helpful for those who want some contact information. (There are website links and a phone number on the bottom right corner of the screen.) Like Dr. Hinz says, there are a lot of published papers about Amino Acid Therapy. He has been working on this for 18 years. It has changed my sister's life - so I am thankful for anything that gets the word out to others. For all of the naysayers - you need to look at all of the published data that is available.

as far as i can tell, all the published data you refer to originated from people who have a financial interest in the company. this is a very expensive, very complicated treatment that has not been independently tested. videos, anonymous patients are not at all convincing to me.

just my opinion.

Soccertese,

You are right. This is expensive - although I would not say all that complicated. My understanding, however, is that without insurance, PD meds run ~$1000/month. At least that is what someone I met who has to pay for his meds pays. The supplements for Amino Acid Therapy are not nearly that much.

Dr. Hinz publishes the knowledge he has gathered. Traditional medical practices will never embrace this treatment; it is too time-consuming and most people just want the quickest fix, which this is not. And Big Pharma can't make money selling supplements so, of course, they are not interested in doing any research into this treatment. (If you look at published drug studies, by the way, you usually don't have to look too far to find significant conflicts of interest.)

It has been encouraging for me to read of others ("anonymous patients," as you call them) who have been helped by this approach. No treatment is perfect for everyone. In the case of my sister, however, Amino Acid Therapy has been nothing short of miraculous! (This after trying every other option we could find and actually being harmed by prescription meds.) It has given her quality of life again! I will continue to tell everyone I meet about it in hopes that it might help someone else.

Best regards,
Sue
(the sister of a REAL patient who has TRULY been helped in a marvelous way using Amino Acid Therapy)

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 think we will just need to agree to disagree on this. No number of studies one way or the other will change the fact that this treatment has helped my sister and many others. (For the record, I am a health care professional - so I am not ignorant of these things.) Everyone needs to decide for himself/herself what treatment to use. My family and I will always be thankful for Dr. Hinz and Dr. Stein and the work they have done. It has truly given my sister her life back!
Blessings to you and yours,
Sue

They are doing another podcast with Dr. Hinz today at 4 pm CST if anyone is interested in watching. I think the main topic of discussion is going to be parkinsons again. I will post the link to the video in this thread after it is over, so you will be able to watch it even if you arent able to watch it live.

Link to the podcast(it will be live at 4 pm CST) - https://blab.im/brainbodywellness-br...hinz-brainbody

Thanks for posting this, billbobby21. Do post the link if you have it, please. I didn't find it on a quick search.
Blessings,
Sue

Sue, do you mind telling us exactly what your sister takes and how much?? Just curious.
thanks!

Hello TryingMyBest,

No, I don't mind at all. I just want to give this disclaimer: Dosages will be different for different individuals. Unfortunately, adding to the expense of this protocol, it is essential to work with a doctor who is trained by Dr. Hinz.

Her current dosages are: 28.8 g mucuna, 8 NeuroReplete, 6 CysReplete, 1 RepleteExtra, 800 mg B6 and 52.5 g tyrosine.

It has been a process getting to this dosage and my sister is still fine-tuning her dosages to find the "sweet spot," as she calls it. It took ~2 months to see changes initially (although the anxiety that she suffered as a result of a toxic reaction to the antibiotic Cipro resolved within weeks!) and another 2 or 3 months for her to get to the point of independence. I would imagine with lesser symptoms that the dosages would be much less and, perhaps, the time for the switch to flip would be shorter - but I am not sure of these things. I do know that my sister's doctor, Dr. Stein, had said that he wished he had heard from her sooner.

I hope this helps. As I have said in other posts, the cost is high and it is not convenient all the time, (my sister takes her mucuna mixed with water in 6 separate doses throughout the day,) but it has given my sister her life back.

Blessings to you and yours,
Sue

Hi Sue,
I understand the balancing concept and that it is individualized. But I can't seem to get past the idea that these are still at toxic levels. My concern is what are the effects of high amounts long term? Will it hurt your sister long term like I believe l-dopa does. Just wondering.

Hello Again,

I certainly don't claim to have all of the answers on this. Here is a quote by Dr. Hinz: “The hypothesis is that the majority of side effects and problems observed during treatment of Parkinson’s disease with L-dopa are caused by mismanagement of the amino acid precursors and systems affected by L-dopa.” Here is a link to a document with a lot of information: http://healthyselfnow.com/parkinsonstx.php. Dr. Hinz proposes that those side effects are really from the Carbidopa and the imbalance in neurotransmitters - not the L-dopa itself.

While there is certainly a risk in taking large quantities of these supplements, each of us must weigh the pros and cons. For my sister, her parkinsonism had progressed to the point that she was having trouble eating and truly was not long for this world if she continued heading in the direction she was going. It was her last resort and, praise God, it is working for her!

The bottom line is that you could always try amino acid therapy to see if it works for you. You would have to be fully committed for probably 6 months, as it takes that long for some people to find the right doses - and then even longer to fine-tune. From my understanding, the earlier in the disease progression you try it the better.

I wish you well,
SueC

Hi Sue --

Was your sister on Sinemet before starting the Hinz protocol, and if so, did she titrate off Sinemet.

Many thanks for sharing your experiences.

Rainbow,

There is no need to titrate off since you are replacing l-dopa (sinemet) with l-dopa (mucuna). L-dopa is still the gold standard. You no longer take carbidopa but instead take 5-HTP for nausea. It will take a bit to find the correct dose of mucuna. I felt better on day one but it took a few weeks to dial it in. I've heard of others taking months. I talked about it on the other thread on the Hinz protocol.


http://neurotalk.psychcentral.com/thread230756.html

I apologize for being slow to reply. No, she was not on Sinemet prior to beginning the Hinz protocol.

Parkinson Tremor
 

Did your sister have parkinsons ?

Hello Dottee,

I'm afraid I can't give you a simple answer on this. My sister's actual diagnosis was originally dystonia. (You may or may not know that dystonia can be its own entity or be a symptom of Parkinson's.) Things progressed slowly for her over time. Her symptoms (tremor, rigidity, slow movement, etc.) were made worse by Cogentin, an acetylcholine uptake inhibitor. All of her neurological symptoms were exacerbated by a toxic reaction to Cipro, a fluoroquinolone antibiotic. Prior to Amino Acid Therapy, the last neurologist that my sister saw labeled her as having parkinsonism. (Her symptoms looked like late PD, with minimal ability to do anything for herself - but walking for short distances with a lot of freezing.)

Dr. Stein, the doctor with whom we have worked for the AAT/Hinz protocol, said that she would be "uncharted territory" for him - as she didn't have a diagnosis of pure PD. Evidently, in her case, as in with PD, the root cause of her symptoms was a relative nutritional deficiency with a resulting imbalance in the neurotransmitters.

Sorry if this is more than you asked for, Dottee. I just wanted to be clear that, while my sister presented as someone with PD, that was not her actual diagnosis.

Blessings,
Sue

Hi Sue,
Apologies for chiming in so late on this topic.
I have the patience of a 2 yr old so correct me if I'm wrong here and your sister has taken this but has a neurologist or movement disorder specialist given her what we call here a Sinemet challenge test?
It fairly swiftly gives an answer when there's a question mark on a diagnosis of P.D.
By Sinemet challenge it can mean Madopar or any other generic tablet which consists of approx. 50 to 100mg Levodopa.
The relief of PD symptoms can be remarkable with this test and if it does bring relief you at least know then and have a firmer though still not 100% accurate diagnosis.
Best wishes

No problem! My sister had been offered Sinemet. Because of her history with meds and what we have read about the evils of Carbidopa, she opted not to take the Sinemet - not even for a challenge test. (Here's an article by Dr. Hinz: The Parkinson’s disease death rate: carbidopa and vitamin B6.) Given the truly remarkable turn around she has had using mucuna, (as part of the Amino Acid Therapy protocol,) no doubt a dopamine deficiency/imbalance was at the root of her problems. Like you said, there is no 100% accurate diagnosis.

I hope this answers your question.

Blessings to you and yours,
Sue

i think hinz is cherry picking his numbers about the increased death rate of pd'ers with the intro of sinemet. i believe that the cause of death from pd was way under reported and death was attributed to other causes, i assume there is better reporting of cause of death of pd which is why there is an increase, not the introduction of sinemet. i quote ""Mortality studies may not be suitable when investigating neurodegenerative diseases, among which PD. Data on death certificate reporting neurologic disorders are of variable quality and population-based reference rates for these specific diseases are limited (Checkoway and Eisen, 1998). There may be a considerable under-reporting of PD diagnosis on death certificates as the underlying cause of death (Phillips et al., 1999). On the other hand, as it is widely regarded that most patients with PD die of complications and not of the disease itself, the limited information available suggests that PD is nevertheless mentioned on the death certificate as a secondary cause of death (Tomenson and Campbell, 2011). "
Validity of mortality data for Parkinson’s disease

i think one has to be very skeptical of hinz's conclusions. and without carbidopa, one had to take grams of l-dopa, not milligrams, which must have made a l-dopa rx very expensive.
just my opinion.

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.

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.

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.

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.

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.