Parkinson's Disease Tulip


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Old 04-11-2016, 05:58 PM #11
TryingMyBest TryingMyBest is offline
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Originally Posted by SueC View Post
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.
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Old 04-11-2016, 06:35 PM #12
SueC SueC is offline
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Originally Posted by TryingMyBest View Post
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
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Old 04-12-2016, 05:06 PM #13
rainbow676 rainbow676 is offline
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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.
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Looking for different options for my mom, born 1946 and dX with PD in 2010.
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Old 04-15-2016, 12:32 PM #14
OlliePop OlliePop is offline
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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
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Old 05-02-2016, 09:15 PM #15
SueC SueC is offline
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Originally Posted by rainbow676 View Post
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.
I apologize for being slow to reply. No, she was not on Sinemet prior to beginning the Hinz protocol.
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Old 05-19-2016, 03:07 AM #16
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Did your sister have parkinsons ?


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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)
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Old 05-23-2016, 06:50 PM #17
SueC SueC is offline
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Originally Posted by Dottee View Post
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
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Old 05-23-2016, 07:39 PM #18
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Quote:
Originally Posted by SueC View Post
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
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Old 05-23-2016, 09:35 PM #19
SueC SueC is offline
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Originally Posted by made it up View Post
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
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Old 05-24-2016, 01:03 AM #20
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Quote:
Originally Posted by SueC View Post
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.
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