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Jon M. Pirikal 01-07-2016 01:06 AM

Hinz Protocol - Actual Experiences
 
This is intended to be a thread where those of us who have actual experience with the Hinz protocol, or are considering trying it, can talk among ourselves without having to defend the protocol. We can talk about good experiences and bad, discuss symptoms, provide regular status updates, offer tips and lessons learned, build up an empirical database basically.

This isn't the place to defend or criticize the Hinz protocol, in other words. If you want to debate the protocol, please post to this thread: “Hinz Protocol - Pros & Cons".

Thanks!
Jon

curem 03-22-2016 03:19 AM

I'd like to bump this thread. My father has tremor dominant Parkinson's and he has remained medication free for five years and still plays tennis, but I would like to find something that might offer some relief from the tremors. Has anyone found relief with tremors using the Hinz protocol?

Thanks!

Quote:

Originally Posted by Jon M. Pirikal (Post 1191853)
This is intended to be a thread where those of us who have actual experience with the Hinz protocol, or are considering trying it, can talk among ourselves without having to defend the protocol. We can talk about good experiences and bad, discuss symptoms, provide regular status updates, offer tips and lessons learned, build up an empirical database basically.

This isn't the place to defend or criticize the Hinz protocol, in other words. If you want to debate the protocol, please post to this thread: “Hinz Protocol - Pros & Cons".

Thanks!
Jon


GerryW 03-22-2016 07:43 AM

Quote:

Originally Posted by curem (Post 1205416)
I'd like to bump this thread. My father has tremor dominant Parkinson's and he has remained medication free for five years and still plays tennis, but I would like to find something that might offer some relief from the tremors. Has anyone found relief with tremors using the Hinz protocol?

Thanks!

My tremors disappeared while I was on the protocol. They're back again now that I am no longer on it.

curem 03-23-2016 05:40 AM

Quote:

Originally Posted by GerryW (Post 1205444)
My tremors disappeared while I was on the protocol. They're back again now that I am no longer on it.

Wow that's pretty amazing! How long were you on it for, and were there any side effects? Why did you stop taking it?

I have read that it can cause nausea, which is a concern for my dad, since he suffers terribly with chronic nausea.

Thanks for sharing your info!

GerryW 03-23-2016 07:52 AM

Quote:

Originally Posted by curem (Post 1205586)
Wow that's pretty amazing! How long were you on it for, and were there any side effects? Why did you stop taking it?

I have read that it can cause nausea, which is a concern for my dad, since he suffers terribly with chronic nausea.

Thanks for sharing your info!

Look for the thread of 3/21/16 titled "I quit the Hinz protocol for more info. One of the benefits it confers is that it doesn't cause nausea. It is prevented by the right dose of 5-HTP. Best of luck to your dad.

TryingMyBest 03-24-2016 05:56 AM

Quote:

Originally Posted by curem (Post 1205416)
I'd like to bump this thread. My father has tremor dominant Parkinson's and he has remained medication free for five years and still plays tennis, but I would like to find something that might offer some relief from the tremors. Has anyone found relief with tremors using the Hinz protocol?

Thanks!

I too have tremor dominant PD and have gone med free for 5 years. Then due to worsening tremors tried carbidopa for 4 months for no relief so I quit.... only got nauseated. Thought about the Hinz P but the idea of large amounts of the stuff to take in the beginning with only more and more to take in your future turned me off. Tried Requip (bad stuff) and Cogentin (nope) and Amantadine (ok). Now in the middle of DBS looking for tremor relief.

soccertese 03-24-2016 08:25 AM

Quote:

Originally Posted by TryingMyBest (Post 1205740)
I too have tremor dominant PD and have gone med free for 5 years. Then due to worsening tremors tried carbidopa for 4 months for no relief so I quit.... only got nauseated. Thought about the Hinz P but the idea of large amounts of the stuff to take in the beginning with only more and more to take in your future turned me off. Tried Requip (bad stuff) and Cogentin (nope) and Amantadine (ok). Now in the middle of DBS looking for tremor relief.

TRYINGYOURBEST,
just curious, i'm signed up for DBS evaluation and it looks like a very rigorous series of tests in 1 day, especially being non-medicated for 12 hours. would you mind summarizing your testing experience? it seems like besides gathering info necessary to present to an insurance company that you need DBS they also want to make sure you can withstand a day of stress that won't be nearly as bad as what the DBS operation will be like plus see what support you bring with you? Did you wonder about this, cuz it seems like they could easily schedule multiple appts for the URDS(?) unmedicated eval, depression, dementia and final neuo exam. sorry about being so nosy.

TryingMyBest 03-24-2016 12:33 PM

Quote:

Originally Posted by soccertese (Post 1205755)
TRYINGYOURBEST,
just curious, i'm signed up for DBS evaluation and it looks like a very rigorous series of tests in 1 day, especially being non-medicated for 12 hours. would you mind summarizing your testing experience? it seems like besides gathering info necessary to present to an insurance company that you need DBS they also want to make sure you can withstand a day of stress that won't be nearly as bad as what the DBS operation will be like plus see what support you bring with you? Did you wonder about this, cuz it seems like they could easily schedule multiple appts for the URDS(?) unmedicated eval, depression, dementia and final neuo exam. sorry about being so nosy.

Hi,
I answered you on Blackfeather's last post thread. If you don't see it then it may have not been cleared yet.

SueC 04-10-2016 11:47 PM

Quote:

Originally Posted by TryingMyBest (Post 1205740)
I too have tremor dominant PD and have gone med free for 5 years. Then due to worsening tremors tried carbidopa for 4 months for no relief so I quit.... only got nauseated. Thought about the Hinz P but the idea of large amounts of the stuff to take in the beginning with only more and more to take in your future turned me off. Tried Requip (bad stuff) and Cogentin (nope) and Amantadine (ok). Now in the middle of DBS looking for tremor relief.

Hello,

I wanted to chime in on your concerns about the Hinz protocol. My sister is on it and it has been nothing short of miraculous for her. With our experience, she began on very low doses of the supplements. Over months, those amounts have been increased. She is still working with her doctor to fine-tune her dosages (which is definitely an exercise in patience!) but, once that dosage is determined, there should be no need for taking more and more in the future. (This process for her has been over the course of the last 10 months. She went from only walking for short distances, having a constant tremor along with rigidity, and needing help for all activities of daily living to walking with almost a normal gate and being independent for all activities of daily living! Her tremor is mostly gone; when it does appear, it is minor compared to what it was in the beginning.)

The protocol is expensive and does not come without challenges - but it has given my sister her quality of life back.

Wishing you well,
SueC

RooJr 04-11-2016 12:14 AM

Hinz protocol
 
Can someone provide info on how to start the protocol.
Thanks

TryingMyBest 04-11-2016 08:46 AM

Quote:

Originally Posted by SueC (Post 1207557)
Hello,

I wanted to chime in on your concerns about the Hinz protocol. My sister is on it and it has been nothing short of miraculous for her. With our experience, she began on very low doses of the supplements. Over months, those amounts have been increased. She is still working with her doctor to fine-tune her dosages (which is definitely an exercise in patience!) but, once that dosage is determined, there should be no need for taking more and more in the future. (This process for her has been over the course of the last 10 months. She went from only walking for short distances, having a constant tremor along with rigidity, and needing help for all activities of daily living to walking with almost a normal gate and being independent for all activities of daily living! Her tremor is mostly gone; when it does appear, it is minor compared to what it was in the beginning.)

The protocol is expensive and does not come without challenges - but it has given my sister her quality of life back.

Wishing you well,
SueC

That is great for your sis. We must each find our path to QOL!

SueC 04-11-2016 10:14 AM

Quote:

Originally Posted by RooJr (Post 1207559)
Can someone provide info on how to start the protocol.
Thanks

Hello RooJr,

From what I understand, there are ~100 health care providers trained in this approach. Many are doing consults remotely, via telephone or Skype. I think the best way to find a physician is to call the company that makes the supplements used in the protocol, CHK Nutrition: 877-538-8388.

I will mention 2 providers: Dr. Alvin Stein in Florida (954-581-8585) and Dr. Chad Oler in Wisconsin (608-274-7044). If you Google those names, you will find more information about Amino Acid Therapy.

Hope this helps!
SueC

RooJr 04-11-2016 10:26 PM

Quote:

Originally Posted by SueC (Post 1207596)
Hello RooJr,

From what I understand, there are ~100 health care providers trained in this approach. Many are doing consults remotely, via telephone or Skype. I think the best way to find a physician is to call the company that makes the supplements used in the protocol, CHK Nutrition: 877-538-8388.

I will mention 2 providers: Dr. Alvin Stein in Florida (954-581-8585) and Dr. Chad Oler in Wisconsin (608-274-7044). If you Google those names, you will find more information about Amino Acid Therapy.

Hope this helps!
SueC

Thanks so much for the info!!

OlliePop 04-15-2016 11:51 AM

Quote:

Originally Posted by RooJr (Post 1207559)
Can someone provide info on how to start the protocol.
Thanks

Roo - I am working with a functional medicine doctor out of Jacksonville. His name is Dr. Serle. You can work with most functional medicine doctors as well as others that will work with Dr. Alvin Stein or Dr. Hinz. I actually presented this protocol to Dr. Serle who said that it made sense and we gave it a go. I will see my neurologist later this month to actually see what his views are. I can tell you this, most neurologist won't support you with the protocol. In fact, if anyone knows a Neurologist that supports this protocol, please let me know.

Although my symptoms were on the milder side, I couldn't get over how crappy I felt over the last two years since this diagnosis and my treatment of sinemet.... apathy, depression, rigidity and pain. Once I started this protocol, I had a dramatic effect in feeling more connected with life in general. Feeling connected is my biggest achievement since starting, along with an increase in energy and no more depression. I still feel at times some pain and rigidity but nothing near like what I was experiencing. I actually went snowmobiling (mountain riding) last week in Alaska. Twelve hours in airports/airplanes didn't effect me. I tried snowmobiling last year and on the last day, I was physically and emotionally drained to the point I was crying... for no particular reason. I had a hesitation on my right (PD dominant) side and thought I wouldn't be able to ride again but this year, I felt great the whole time, with no hesitation. In fact, typing this long response and I am not double stroking/missing keys!! I have some dexterity back, lots more!!

On day one, you no longer take Sinemet and begin taking mucuna/5-Htp/L-tyrosine/L-cysteine. I do not recommend doing this on your own. You will ultimately have dopamine and serotonin levels tested through urine. Everyone's dose is different. I take 5.4 grams of munuca a day, along with the others. Seems like a lot to me but compared to what others are taking, it's not that much.

Admittedly, I was fearful of stopping Sinemet but the protocol still calls for the gold standard treatment, which is L-dopa but from a different source, munuca pruriens. Most get their amino acids from CHK Nutrition. That is where I get mine. Some on this forum are skeptical that CHK is in it for the $ and that Hinz/Stein are just out to get your $ through CHK. Well, it's either them or pharmaceuticals. I can tell you this for sure, I am glad to not be taking pharma meds any longer and gladly pay a few dollars extra for the way I feel today. Sinemet made me feel like absolute crap. The carbidopa depletes vitamin B6 and l-dopa depletes serotonin. I think I found out why I was so energy deficient and depressed!! This protocol addresses both. Neurologists won't address those issues except to give you prescriptions to combat symptoms that crop up.

A few other things that I have tried that may have helped or seem to be helping:

Cannabis - I have been a big advocate for cannabis for all of the symptoms that I have encountered. It has helped for pain/rigidity/depression/etc. I was micro-dosing with a tincture that I made with both CBD rich and THC strains. The day I switched to this amino acid protocol, was the day I stopped using the tinctures! I just feel that much better!! I still take CBD since it is neuro-protective.

Exercise - I bike 15-20 miles 3-4 times a week. However, I have always been athletic but biking for my main exercise was new.

Food/Detox - Prior to starting this protocol, I did a full detox. I now eat only organic foods. We all have our suspicions on how we developed PD. My best guess is that we are slowly being poisoned through our food and water supply.

Summary - All of the above has likely helped me get better but there was definitely a light switch after stopping sinemet. Oh, by the way, I tried Rytary too just before the switch. I felt so awful for the four days I tried Rytary that that was the final straw to try this 'radical' approach. Now, it doesn't seem so radical. It proved to me that carbidopa was something that my body was telling me to stop!!

Tryguy 10-15-2016 11:25 PM

Hinz protocol
 
Hi, How should the protocol be admistered? in 6 mos and 3 urines with nothing
To show for it but pill stops and frustration. It is not easy to tell if the D5 does anything during the day. It has basically become a great sleep aid-that's it. Any tips or insight would be much appreciated.

Thank you,

Arlon Bennett
Diag. 2010




Quote:

Originally Posted by SueC (Post 1207557)
Hello,

I wanted to chime in on your concerns about the Hinz protocol. My sister is on it and it has been nothing short of miraculous for her. With our experience, she began on very low doses of the supplements. Over months, those amounts have been increased. She is still working with her doctor to fine-tune her dosages (which is definitely an exercise in patience!) but, once that dosage is determined, there should be no need for taking more and more in the future. (This process for her has been over the course of the last 10 months. She went from only walking for short distances, having a constant tremor along with rigidity, and needing help for all activities of daily living to walking with almost a normal gate and being independent for all activities of daily living! Her tremor is mostly gone; when it does appear, it is minor compared to what it was in the beginning.)

The protocol is expensive and does not come without challenges - but it has given my sister her quality of life back.

Wishing you well,
SueC


anon122822 10-16-2016 07:47 AM

Quote:

Originally Posted by Tryguy (Post 1226489)
Hi, How should the protocol be admistered? in 6 mos and 3 urines with nothing
To show for it but pill stops and frustration. It is not easy to tell if the D5 does anything during the day. It has basically become a great sleep aid-that's it. Any tips or insight would be much appreciated.

Thank you,

Arlon Bennett
Diag. 2010

What is the highest amount of Mucuna that you have been on so far?

Tryguy 10-16-2016 11:40 PM

Hey Billbobby, Thanks for your response! 30g/day (with 15g tyrosine) was the highest with 11g used to get a decent night's sleep. The rest was taken in 3/4 divided doses throughout the day that pretty much put me on my back. There have rarely been "on' times including once when I found the holy grail over the Summer only to have it fade after about 1 1/2 hours not to return. Took nothing today, and am going to give it a try without the 11g night dose.. It is a pill stop, but well see.. most recently (which led to the current pill stop) I was at 24.5g mucuna D5.. with the tyrosine, neuroreplete, b6, and cysrepletes.. Any insight? Thinking about another practitioner.. it has been 6 months. Thanks so much...


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anon122822 10-17-2016 12:54 AM

Quote:

Originally Posted by Tryguy (Post 1226530)
Hey Billbobby, Thanks for your response! 30g/day (with 15g tyrosine) was the highest with 11g used to get a decent night's sleep. The rest was taken in 3/4 divided doses throughout the day that pretty much put me on my back. There have rarely been "on' times including once when I found the holy grail over the Summer only to have it fade after about 1 1/2 hours not to return. Took nothing today, and am going to give it a try without the 11g night dose.. It is a pill stop, but well see.. most recently (which led to the current pill stop) I was at 24.5g mucuna D5.. with the tyrosine, neuroreplete, b6, and cysrepletes.. Any insight? Thinking about another practitioner.. it has been 6 months. Thanks so much...


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What doctor are you working with? When you say you found the "holy grail" was this during a pill stop? If so, what dosage were you on that you did the pill stop that gave you this period of symptomatic relief? Also, when you are doing these pill stops are you making sure to take Zero Mucuna for at least 2 days? It is a complete halt of taking any Mucuna. Also, do you have any side effects like nausea from taking the Mucuna? The highest amount of Mucuna a person has been on is 52.5 g according to this: Parkinson’s disease managing reversible neurodegeneration . So in my opinion based on that sensation you had of symptomatic relief likely means you are overdosed with the Mucuna. But if lets say that is not the case, there is still quite a bit of raising of the Mucuna to be done to reach the highest amount seen before.

The fact that you said you found the holy grail of symptomatic relief at one point for a short period of time gives me the indication that you did a pill stop which is to identify a pill over dosage. So for instance the pills are normally increased in the form of 6, 12, 18, 24, 32, 40, 48, 56, etc. So on each of these dosing values you do a 2 day pill stop which decreases the systematic concentrations throughout the jumped range. For instance if do a pill stop on 48 pills you are trying to make sure that you didn't over jump from 40 to 48. So if you feel significantly better on the pill stop you identify that the dosage needed for symptomatic control is between 40 and 48 pills for example.

With the doctor situation, it would not surprise me if the doctor you are working with is not fully educated in how to treat a parkinsons patient. I have been looking into this protocol and researching as well as having personal experiences with doctors to know that there are very few who truly know what they are doing. I think it gives this protocol a bad name in a sense because patients will get hooked up with doctors who have little education in how to use this, get no results, then think that the entirety of it is a scam. In my opinion there are probably less than maybe 20 doctors in the world who really know what they are doing. There could be more that just don't have a internet presence so I just am not aware them, too. But the point i'm trying to make is this protocol in general will not work if you don't have a doctor that knows how to properly do it. Like i'm not even a doctor trained in this, have only read everything i can find online and I identified the clinical implications of that period of symptomatic relief quite quickly because someone who knows what they are doing would easily recognize it too. Ok sorry for the rambling haha.

Also, remember that just because you have had all this time of no symptomatic relief does not mean it will not come. There are 2 kinds of patients. One kind gradually improves as the amino acid dosage changes are being made. Think of them like a dimmer light switch slowly getting turned on. The other kind gets an abrupt symptomatic relief only when the correct dosage of amino acids and in parkinsons mainly L-dopa is achieved. For instance in this paper of theirs they document a patient that on 90 pills a day had all symptoms of Parkinsons disease present. When this patient decreased the dosage by just 1 pill to 89, virtually all symptoms were relieved. So just a 120 mg change in L-dopa either too high or too low can cause the exact same clinical symptoms for some people. His website is down for maintenance right now it seems so I can't provide a source. Here is source to their Parkinsons Unifcation paper that goes into more detail on everything though: Parkinson’s disease managing reversible neurodegeneration

If you have any questions about anything let me know!

engsec 10-17-2016 08:38 AM

Hi Tryguy , Billbobby21

As I understand , at this moment , you have problem of unbalancing serotonin and dopamine . When you are sleepy many times of day , so it means your serotonin (5htp) is high .
you will face some different conditions :

1- 5htp is High , so you should decrease it (by doctor) one pill per 4 days and see what will be happen. (you should get ride of sleepy day)
2- when you decrease 5-htp you will face below condition :

2-1 - Symptoms get worse like nausea , or other . so it means that your L-dopa is high too , and you should decrease L-dopa dosage too. hint: the best and balanced dosage of 5htp means that the symptoms should be under control and you should not be sleepy most time of the day !
2-1- Symptoms get under control or lighter and you feel ON times more. so you may need to decrease 5-htp again to reach the best feel.
3- another condition is that you feel ON just 1-1.5 hrs after taking L-dopa , but you are OFF most before starting next dose so :
3-1 - you need to increase Tyrosine to have enough dopamine level at the end of each period. (please be aware , when you make change in tyrosine dosage , you may need to change 5-htp and L-dopa dosage too)
3-2 - when tyrosine dosage is increased , you may need lower L-dopa and higher 5-htp too .
4- You feel bad after taking amino acids but feel good before taking next dose , it means that L-dopa is high , but tyrosine and 5-htp are enough at this day.
There are many other and complicated conditions which should be considered and its just manageable by a good doctor .
But there is a fact that I reached to it and like to share :
We all have a free test lab at our home and its Blood Pressure measuring !
Normal BP = Balanced catecholamine at that time
High BP = High/unbalanced Catecholamine at that time
Low BP = unbalanced or low Catecholamine at that time
** the Desired BP is differ from a person to another one ., so the desired amount of L-dopa and serotonin is differ too. **
Goal is to have a Normal BP whole of day and at start/middle/end of every dosage period .
I am not a doctor ,Don't try to change in doses on yourself , (need doctor permission ) , its my personal experience, hope to help someone .

Trust GOD

anon122822 10-17-2016 11:14 AM

Engsec, as I remember from talking to you previously on here, you were self-treating your father who suffers from PD yourself correct? I think based on what Tryguy has stated so far is that he doesn't suffer from being fatigued or sleepy rather that he has not received or felt any relief of parkinsons symptoms other than sleep assistance if he takes it before bed. Regardless, even if he has fatigue or sleepiness, there is nothing that I have read based on everything produced by Dr. Hinz on the internet to suggest that decreasing the 5-htp is the proper way to manage this either. If the patient is having nausea then that means there is either too high or too low of administration of 5-htp, but 5-htp itself is not adjusted based on sleepiness.

I think all the things you are suggesting are probably based on your personal experience with your father. From what I remember when we talked you were unable to work with a doctor trained in how to properly do this because you live in Iran and already purchased the amino acids. If these things like changing the 5-htp in this fashion, changing the Tyrosine based on patient observation, and judging catecholamine balance or optimization based on blood pressure status work for you that is great. But it needs to be clear that none of these things are discussed or recommended by Dr. Hinz or in any of his papers so I just want to make sure this is understood by others. If these things are working for you that is awesome and I wish you the best. I can't imagine how hard this must be to do on your own, so i'm glad you have found something that works. But to others, I just want to stress that all of these things of making decisions based of this information is not recommended to achieve optimal results. If you don't have access to a doctor though it is probably worth thought.

To expand a little more on how the 5-htp dosage is determined for each patient as well as Tyrosine and overall optimization of symptoms. For 5-htp the dosage for a parkinsons or "dopamine dominant" patient is determined based initially on observing the side effect of nausea. If nausea is present then the 5-htp dosing value needs to be changed. Too high or too low of 5-htp administration will cause nausea. Dr. Hinz's recommendation is to go from 2 to 1 to 3 to 4 to 8 of NeuroReplete which contains 37.5 mg of 5-htp per capsule. I think it is around 40% have no nausea on 2 and then another 30% don't have nausea on 1 then smaller percentages on the other values. There is a small percentage of patients who still will not achieve nausea relief and will either need 5, 6, or 7 NeuroReplete or they will need to start adding RepleteExtra which basically contains 75 mg of 5 htp on top of the NeuroReplete to achieve higher 5-htp dosage values. There are three levels of L-dopa induced side effects. The initial stage is nausea which is controlled based on what I just stated. The 2nd stage is having other side effects most predominantly headaches and anxiety. When the 2nd stage of side effects present often the patient will already have control of the nausea. The current recommendation based on what I have read is to increase the 5-htp value by 37.5 mg a day and that usually takes care of the 2nd stage side effects while keeping stage 1 at bay as well. 3rd stage is psychosis and depression. 3rd stage very rarely happens but if it does it usually signifies mass serotonin depletion since the patient is usually on very high amounts of L-dopa. By increasing the 5-htp value usually into the 300-900 mg a day range these side effects also are eliminated. As you can see, this research project seems to still be fluid with its protocols. Eventually I see them having a way to be able to initially prevent any of the increase in side effects from occurring at all. But for right now just staying aware of their presence and implications and how to get rid of them is the best course of action.

For the Tyrosine they state this quite clearly in that they absolutely do not suggest adding Tyrosine without getting a lab test. The lab test is used to identify dopamine fluctuations where the L-Tyrosine and L-dopa are being preferentially turned into dopaquinone and then to melanin. You can see this here: KEGG PATHWAY: Tyrosine metabolism - Reference pathway . With this stealing of the precursors you get inconsistent Dopamine production leading to fluctuations in the synapse leading to fluctuating symptoms. By giving ample Tyrosine based on lab results (anything over 40,000 ug p/g creatinine is considered a fluctuation) you are able to have enough Tyrosine in the system for when this preferential siphoning occurs it won't affect the production of L-Dopa. L-Tyrosine is rate-limited so increased amounts past a certain point does not increase dopamine production either. It basically protects the L-dopa from being converted into dopaquinone->Melanin which would fluctuate the dopamine production

So I just want to state one last time that if you have access to a doctor who knows what they are doing and work with Dr. Hinz then I would highly suggest doing so. I commend Engsec for making do with what he has but it needs to be clear that making decisions based on these things if you don't have too is not wise.

Tryguy 10-17-2016 09:47 PM

Working (?) with Dr. Enescu in NJ. I have never been on a real pill stop because I have been unwilling to forgo my 11g D5 mucuna at night that gets me to sleep. Without it is complete insomnia, and I cannot function which is to say take care of my kids - especially in the morning. The holy Grail happened when I was on 10 g mucuna/day (with the 15g tyrosine etc) and after I drank A lot of water. Same thing happened a few weeks ago. I get no nausea from Mucuna, though there used to be early on. I get no guidance from this doctor. I have to beg him for the urine reports and it didn't even seem like he used them for dosage adjustments. Also, I do not use pills of mucuna D5 - only powder. Every morning I mix the dosage into 12oz of water as my delivery system and drink two oz every two hours. SO when you do the math on a 12 g per day mix, I intake 2 g every two hours. In this concoction is also the 15 g tyrosine - and I take vitamin B6 (100g 3x/day), the cysrepletes (6 caps/day) and 2 neurorepletes/day. I came across this "juice" idea from Dr. Stein's website. Otherwise I was measuring powder, putting in my mouth and chasing it down with water.. I just did not know better, especially since the D5 mucuna oxidizes easily. Thanks so much for your help and the links! I will check them out. I should not feel so alone in this process, but I do. Looking for another practitioner! I must see this through..


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Tryguy 10-17-2016 10:09 PM

By the way, I was at 13.5 g mucuna / day level most recently what I felt crappy (Poor balance and gait) And he ordered a pill stop. Keep in mind that the 13.5 g does not include the 11g i take at night to sleep.. right now I am taking NO D5 mucuna or tyrosine and only feel slightly worse (maybe!). Uh-oh here comes my 11pm RLS! Thankfully the D5 mucuna takes care of that too. It's more that than insomnia..sheeesh! And how are you billybobby21?


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engsec 10-18-2016 02:20 AM

Blood pressure
 
Hi billbobby21 ,
Yes, you are right and I am agree with all and I am happy you are here . coz it seems that you read all of papers by dr. hinz . I did too . and sorry about my suggestion for "Tryguy" . I misunderstand and though he feeling sleepy . but the concept of my reply are tested by me on my father .
The story of the idea of measuring BP , instead of OCT2 test (for me that have not access to DBS lab) was started about 6 months ago when I wrote an email to Dr. Alvin Stein and told him about this idea .
He wrote me back, that my idea is correct on the paper but I will face some problems :
1- the purity of powders (Mucuna,5HTP,Tyrosine)
2- The BP measuring idea is not stand up statistically
Finally after 3 or 4 months working of this idea on my father by try and error , I decided to calculate the level of the products of each amino acid (dopamine, serotonin) per hour for my father .
I make a catecholamine level calculator by Microsoft excel and tested the results by checking blood pressure of my father per hour . after 26 times changing of formulas finally I think that this calculator is showing correct levels and I could predict my father symptoms in next hours !
for example if I see when he is ON , then I will try to re arrange amino dosages to have more ON times in my calculator .
the success which I reach in past 30~40 days :
- full night sleep
- normal blood pressure before staring next dose.
(his BP was mostly 7/4 at this time , now is 9/6 ~ 10/7)
- his appetite is back after 3 years
The problems :
- He have light dyskinesia and the top level of dopamine , I am trying to fix it by 5-HTP (he is on 1200 mg b6 about 3 months and I am waiting yet for results)
and .....
the topic name is actual experiences , so its mine .

Best wishes

anon122822 10-18-2016 05:31 AM

Quote:

Originally Posted by Tryguy (Post 1226601)
Working (?) with Dr. Enescu in NJ. I have never been on a real pill stop because I have been unwilling to forgo my 11g D5 mucuna at night that gets me to sleep. Without it is complete insomnia, and I cannot function which is to say take care of my kids - especially in the morning. The holy Grail happened when I was on 10 g mucuna/day (with the 15g tyrosine etc) and after I drank A lot of water. Same thing happened a few weeks ago. I get no nausea from Mucuna, though there used to be early on. I get no guidance from this doctor. I have to beg him for the urine reports and it didn't even seem like he used them for dosage adjustments. Also, I do not use pills of mucuna D5 - only powder. Every morning I mix the dosage into 12oz of water as my delivery system and drink two oz every two hours. SO when you do the math on a 12 g per day mix, I intake 2 g every two hours. In this concoction is also the 15 g tyrosine - and I take vitamin B6 (100g 3x/day), the cysrepletes (6 caps/day) and 2 neurorepletes/day. I came across this "juice" idea from Dr. Stein's website. Otherwise I was measuring powder, putting in my mouth and chasing it down with water.. I just did not know better, especially since the D5 mucuna oxidizes easily. Thanks so much for your help and the links! I will check them out. I should not feel so alone in this process, but I do. Looking for another practitioner! I must see this through..


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Based on what you are saying with having to beg your doctor just to get the results from the urine tests as well as his lack of general guidance indicates to me it is essential for you to switch doctors if you want to have success with this. I personally work with Dr. Chad Oler who does over the phone or over skype consults to anyone in the United States. Based on my personal experience with him I can vouch for him knowing what he is doing and is in regular contact with Dr. Hinz. He is very thorough and listens to what I say and is receptive to my thoughts on what is going on. You can contact him at Contact Us | Natural Path Health Center . If you are interested in further pursuing this.

With the pill stops, I am sorry to say that a big factor for why this hasn't worked for you is likely your unwillingness to do a real pill stop where you do not take any Mucuna at all for 2 days. When you say you were on the 10 g of Mucuna and had the period of symptomatic relief, were you only on 10 g or is this not including the 11 g before bed? Unfortunately if you want to have success with doing this, you will really need to commit to doing the complete pill stops for 2 days. If you are unwilling to do this, I understand, but you very likely will not find success with this treatment method. The way I think of it is this: Those 2 days where maybe you can't sleep will definitely suck, BUT you have to think about why you are doing it. In the short term it might suck but to get yourself through it just think about the long term benefit. A few months of having a few nights a week of little sleep I would think is worth the long term prospect of symptomatic elimination and stabilization. Also with this protocol if you get fully stabilized it can halt any further progression or greatly reduce it. So this will just be something you have to decide for yourself I guess!

A thought I just had is in the short term, if you really can not sleep while not taking any Mucuna, it could be beneficial to take a mild sleep medication for help on the nights of the pill stop. I am almost entirely against sleep medications, but in your case you would only be using it short term once or twice a week if the insomnia is really severe and only for a few months until you are stabilized. It might be worth looking into.

Tryguy 10-18-2016 10:31 AM

What you say about my unwillingness to do complete pill stops may be true, but I did mention this to the doctor and we moved along like it was nothing. I would bite the bullet however if he said it was necessary to move forward. It has been a frustrating six months. I had hoped to be "there" by now.. BUT something drives me with this and I am not ready to give up yet. I have checked out Chad's videos, but I made a consult with Dr. Dan Kalish for next week. These guys may be not be neurologists but it seems they have miles of experience (Also P.A. David Overton in WA). Then of course there is Dr. Hinz...;-) If I may ask how has the process been for you? Have you gotten "there" yet? Gradual or light switch? Thanks again for being such a big help! Do you know of any other forums that discuss Hinz et al?


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Tryguy 10-18-2016 10:37 AM

Thanks too to Engsec! I appreciate you sharing your experience. I can only hope my kids take of me like you have taken care of your father.


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anon122822 10-18-2016 11:20 AM

Quote:

Originally Posted by Tryguy (Post 1226648)
What you say about my unwillingness to do complete pill stops may be true, but I did mention this to the doctor and we moved along like it was nothing. I would bite the bullet however if he said it was necessary to move forward. It has been a frustrating six months. I had hoped to be "there" by now.. BUT something drives me with this and I am not ready to give up yet. I have checked out Chad's videos, but I made a consult with Dr. Dan Kalish for next week. These guys may be not be neurologists but it seems they have miles of experience (Also P.A. David Overton in WA). Then of course there is Dr. Hinz...;-) If I may ask how has the process been for you? Have you gotten "there" yet? Gradual or light switch? Thanks again for being such a big help! Do you know of any other forums that discuss Hinz et al?


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I have worked with 3 doctors. Dr. Kalish, Dr. Stein, and Dr. Oler. Out of all 3, Dr. Oler is the best in my opinion. The issue I had with Dr. Kalish is it takes forever to be able to get a consult and the prices for consults are quite high being at $400 a hour. I also am not even sure if he still works with Dr. Hinz as based on a previous post by GerryW it seemed as if Dr. Kalish was discontinuing working with him for some reason. Dr. Stein retired, from my experience with him, he was quite educated on everything, but he was not at all good about working with patients. He didn't keep records of what we had done so far and seemed to have too many things on his plate since whenever there was a problem he would almost give the impression of wanting to give up. With my experience with Dr. Oler, it is easy to get a consult set-up, he responds to e-mails everyday, keeps good records, is open to my opinion/ideas, and the consult prices are half of what Dr. Kalish's are. I would make sure that Dr. Kalish still treats parkinsons patients based on Dr. Hinz's researched protocol before doing a consult with him.

With my personal case, I do not have Parkinsons disease rather different symptoms resulting from multiple concussions a few years ago. The main symptoms being cognitive/thinking issues/brain fog, depression, extreme fatigue, OCD, Tinnitus, and headaches. The research on the monamine system done by Dr. Hinz indicates that treatment of all of these diseases (full list found here: http://new.neurosciencemyths.com/wp-...lticolored.jpg) is caused by the same dysfunction, thus the same form of restoration of electrical flow byway of providing adequate serotonin and dopamine precursors aka 5-htp, L-Tyrosine, and L-dopa along with a Sulfur amino acid like L-Cysteine will relieve all of these symptoms of disease. For each patient depending on the area and amount of the brain damaged or the amount of depletion of neurotransmitters or genetic anomaly will be the deciding factor as to the amounts of pre-cursors needed to alleviate symptoms.

So with my case, within the first month of starting the protocol I was on the dosage of 8 NR, 6 Cys, and 2 D5 Mucuna. On this dosage I had a vast improvement in symptoms. I would say I was 70% better. I stayed on this dosage for a month as I was dumbfounded by the fact that my symptoms had improved so much as I thought I was never going to get better. Over time the beneficial effects of the dosage slowly started to fade away until I was only a little better from when I started. It has been quite a long road from then until where I am now, going on 2 years now, and the reason being that my case is not of that which is typically seen. Most patients who are not Parkinsons or RLS fall into two categories. Either Three Phase or Dopamine Dominant. Over 90% are three phase which basically means the Three phase response that is observed by doing lab tests is how dosage determination is made. These patients typically need small amounts of dopamine precursors and medium to higher amounts of serotonin. I've expanded on this more in previous posts. Around 8-9% are dopamine dominant patients where the treatment method is basically the same as Parkinsons patients, but typically these patients do not need nearly as much L-dopa to control symptoms. There is a 3rd kind of patient known as Straddle or Mixed Dominant that is very rare, these patients need large amounts of both L-dopa and 5-htp, less than one percent of patients fall into this category. Unfortunately for me, I am one of them. There is not much data on Mixed Dominant patients, as well as me not being identified as one until 6 months ago, so it has been a hard journey so far.

After that period where I had 70% relief of symptoms for a month, I instantly started researching all of this stuff immensely as I was blown away by the fact that it was able to improve my condition so much. After the beneficial effects went away, I started working with Dr. Stein, because I knew based on the fact that I got quite a bit better and based on what I read that this was legit, and we did a dopamine challenge. The dopamine challenge is basically a test where you give someone 6 D5 Mucuna pills and if they do not have negative effects from it like terrible brain fog, memory problems, etc. then they are deemed to be dopamine dominant. Looking back now it makes sense because I do need higher amounts of L-dopa BUT I also need high amounts of 5-htp. So for quite a few months I was only taking large amounts of L-dopa as we increased the values and did pill stops. Honestly my entire experience on this protocol so far would take a few pages to fully write out and explain and I don't want to bore you so I will just leave it at that.

Coming back to your personal situation, I believe that if you go back down to 7.2 g of Mucuna a day which is equivalent to 24 pills, do a pill stop for 2 days, see if there is symptomatic relief at any moment during the pill stop, if not then increase to 9 g, repeat process, increase to 10.8 g, repeat process, etc. Until you do a pill stop on a dosage and get a period of symptomatic relief which would identify the dosage range needed to fine tune on.

Also, you did not answer my question earlier about if on the 'holy grail' period were you only on 10 g of Mucuna a day or were you taking 10 g plus the 11 g at bedtime so 21 g in total?

engsec 10-19-2016 12:31 AM

calculator
 
I thank you Tryguy and billbobby21 so much , we all are in a boat. anyway , if you want , I could enter your amino acids in my calculator and tell you what will happened to you during the day and night by a diagram . I should mention that this calculator is not made just for a specific patient . the formulas are research based, not my father based . I only checked the accuracy of the calculation by my father and the only value may differ from a patient to other one is the percent of conversation of dopamine from l-tyrosine.
Info which I need , is amount and time of your amino acids . I need exact time of intake of them all. and I need to know the exact best and worst time of the day of you.
after calculation I could tell you dopamine and serotonin level of you during the day/night .

Tryguy 10-19-2016 05:19 PM

Hey BillBobby21, just got the two day orders from the doctor on the pill stop. Going to give it a shot tonight and tomorrow which is my birthday… Yeehaw! To answer your question it was the 10 g plus the 11 g at night totaling 21 g for the day. I hate to try the cold medicine for sleep but may have to…



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anon122822 10-19-2016 05:58 PM

Quote:

Originally Posted by Tryguy (Post 1226815)
Hey BillBobby21, just got the two day orders from the doctor on the pill stop. Going to give it a shot tonight and tomorrow which is my birthday… Yeehaw! To answer your question it was the 10 g plus the 11 g at night totaling 21 g for the day. I hate to try the cold medicine for sleep but may have to…



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What dosage were you on leading into this pill stop? Also, before doing a pill stop you need to be on the dosage for at least 5 days to allow it to properly stabilize and equilibrate, so have you been on it for at least 5 days before doing the pill stop? If you already took the normal Mucuna dosing during the day today, then take it again tonight like you normally would, then start the pill stop tomorrow otherwise you would be getting a half dose today which might mess things up. Also, when doing the pill stop it is important to make sure you do it for 2 full days. So lets say you take the pills Monday-Friday, so 5 days in a row. You would take all the powder on Friday like you did on the other 4 days, then on Saturday and Sunday you would take Zero Mucuna. If during this pill stop you experience a few hour period of symptomatic relief then that means you are overdosed. Read more here: http://new.neurosciencemyths.com/wp-...topOnePage.pdf

Tryguy 10-20-2016 02:30 PM

Hinz Protocol - Actual Experiences
 
Hey Billbobby, just an FYI that I could not make it more than three hours into the pill stop. The restless leg syndrome kicks in and will not let me sleep. It also will not let me stand without moving. So you see there is an issue there different from yours. Going to see what can be done if anything… Keep you posted. And thank you again!


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anon122822 10-20-2016 05:01 PM

Quote:

Originally Posted by Tryguy (Post 1226879)
Hey Billbobby, just an FYI that I could not make it more than three hours into the pill stop. The restless leg syndrome kicks in and will not let me sleep. It also will not let me stand without moving. So you see there is an issue there different from yours. Going to see what can be done if anything… Keep you posted. And thank you again!


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That is unfortunate to hear. Well I hope you can get things figured out. If you start working with Dr. Kalish as you said, hopefully he will be able to sort things out for you. Anyways, if you ever have anything that you want help on or have a question that you think I could answer, just message me and I will be sure to help in anyway I can!

Tryguy 10-20-2016 06:44 PM

Hey Billbobby, is there a central source for the documentation of this protocol? For example the link you sent me for the pill stop Was invaluable. I've come across quite a few of these kind of things that help me understand the protocol, but are not generally available on the surface anyway. I Find them from various site Links usually connecting to/from Dr. Stein site etc.


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anon122822 10-21-2016 03:27 PM

Quote:

Originally Posted by Tryguy (Post 1226885)
Hey Billbobby, is there a central source for the documentation of this protocol? For example the link you sent me for the pill stop Was invaluable. I've come across quite a few of these kind of things that help me understand the protocol, but are not generally available on the surface anyway. I Find them from various site Links usually connecting to/from Dr. Stein site etc.


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Neurosupport.com is usually the best site and is the site owned and run by Dr. Hinz, but right now it is down for maintenance/updates it seems as stated on the website. Another good site is new.neurosciencemyths.com which is run by Dr. Stein. If that link doesn't work let me know, for some reason the link sometimes goes to a server website. The password for the password protected content is: 555. Another decent website is: Balancing Neurotransmitters for Better Health– urinary serotonin and dopamine with OCT-2 functional status interpretation. You can also go to Internet Archive Wayback Machine to look at past screenshots of the neurosupport website. In a few weeks i'm assuming the website will be back up. All their papers can be found here: Peer-reviewed papers | Management of the most far reaching and newly defined set of relative nutritional deficiencies.

Here is a good link for information on Parkinsons: Parkinson’s disease | Management of the most far reaching and newly defined set of relative nutritional deficiencies Password is 555

Tryguy 11-02-2016 11:32 AM

Hey BillBobby, such great info thank you so much! Those passwords be fuddled me more than I can tell you… Is there a site other than this one or health unlocked where amino acids therapy is discussed? The Hinz protocol community shouldn't be this small.


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Marty Hinz, MD 02-11-2018 09:27 PM

Hinz protocol does not include self treatment
 
Quote:

Originally Posted by Jon M. Pirikal (Post 1191853)
This is intended to be a thread where those of us who have actual experience with the Hinz protocol, or are considering trying it, can talk among ourselves without having to defend the protocol. We can talk about good experiences and bad, discuss symptoms, provide regular status updates, offer tips and lessons learned, build up an empirical database basically.

This isn't the place to defend or criticize the Hinz protocol, in other words. If you want to debate the protocol, please post to this thread: “Hinz Protocol - Pros & Cons".

Thanks!
Jon

The Hinz protocol does not include self treatment of the brain damage results that are at the heart of Parkinson's disease. Many doctors who try and master the protocol come up short.

martimoran 11-08-2018 08:28 AM

On Amino Acid therapy 1 yr now
 
My husband was diagnosed a year ago with PD. We researched side effects of pharm drugs and decided not to go that route. We were blessed to find the Hinz protocol and found a clinic in WI to administer and monitor the amino acid therapy. He is on a very low dose and is doing amazing! It took a few months to find the right dosage, but now has his humor back, facial expressions, smoother movements, and more energy mentally and physically. So I definitely would say that this therapy is working for him.

soccertese 11-09-2018 06:39 PM

Quote:

Originally Posted by martimoran (Post 1269455)
My husband was diagnosed a year ago with PD. We researched side effects of pharm drugs and decided not to go that route. We were blessed to find the Hinz protocol and found a clinic in WI to administer and monitor the amino acid therapy. He is on a very low dose and is doing amazing! It took a few months to find the right dosage, but now has his humor back, facial expressions, smoother movements, and more energy mentally and physically. So I definitely would say that this therapy is working for him.

Just curious, what is the name of the clinic you are going too, what are you taking and could you give a list of what you have been charged for and the costs and what you expect the costs will be on an annual basis. cost is just as important as the treatment.

I had similar results just taking 1 tiny carbidopa/levodopa pill 3 times a day starting 2 years after my diagnosis. just curious, did you meet anyone with parkinson's who has been on the HINZ protocol for 5 years or more? Don't know how anyone could prove how long they have been on the protocol. Posters on this board tried it and eventually stopped when it couldn't reduce their symptoms enough. I waited maybe 2 years before taking any meds after diagnosis and like you shied away from conventional drugs, just taking macuna purien capsules and also buying it in bulk plus a myriad of supplements. In year 3 i switched to conventional drugs., i didn't need to spend hundreds of dollars a month for food supplements that i had to buy from a HINZ related doctor. your're not likely going to have any side affects from a low dose HINZ protocol but you will when the dose gets high enough.

you really have no idea what is in the supplements you take in this protocol, for all you know they could grind up some carbidopa/levodopa pills and add it in to one of the common supplements they have you buy. just pure speculation on my part but why do they require you to buy all their supplements from them when they could be bought much more cheaply from a natural foods store? ever wonder why doctors are not allowed to dispense drugs except when there is no pharmacy nearby? to keep them from writing RX's just for the money. just food for thought. i think you'll find as time goes on you'll pay more and more for testing and blood work to find just the right combination of supplements and will have to take ridiculous amounts of mucana. and then will switch to C/L.


fyi
A Skeptical Look at Dr. Marty Hinz and His Views of "Neurotranmitter-Related Diseases"

lurkingforacure 11-11-2018 11:10 AM

any long-termers on Hinz?
 
I would love to hear from someone who has had PD for more than 5 years on the Hinz protocol. From what I have read, lots of things "work" very early in the disease but as things progress, it seems like everyone ends up on the conventional meds.

My question would be mainly:

1. if you are newly dx'd and start on Hinz and stick with it, did it keep you from progressing? Were you able to keep taking the same amount of product or did you need to increase/tweak it? If the protocol was really addressing the root cause, some kind of imbalance, then it would seem that you would not progress any further or develop any additional symptoms, nor would you need to increase dosages.

I guess the same thing could be said if you had had PD for several years-if the protocol re-balanced everything, your progression would stop once you achieved that balance. But I can't find anyone who ever has been able to do that on this protocol-it's a constant adjustment and testing and further adjustment, and everyone does seem to progress (or gives up and starts the PD meds) from what I can find.

I don't mean to knock this therapy-if it works for you, awesome. But the PD drugs are amazing too...in the beginning. I'd like to know how people do long-term on this protocol, other than having to resort to the meds when money runs out or it's not working as well anymore.

Please share!

Tryguy 11-17-2019 10:30 PM

Hi, I tried the Hinz protocol with two providers and it was let’s say, a learning experience.. failure’s both times. I still believe there is some merit to the science, but the support infrastructure was shaky (->2016). I never seem to see many long-term successes with though there may be. I march on seeking ways to heal myself and help others than to spend any more time and money in what is still only a symptom reliever in my estimation.


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