Parkinson's Disease Tulip


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Old 04-11-2016, 08:46 AM #11
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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!
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Old 04-11-2016, 10:14 AM #12
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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
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Old 04-11-2016, 10:26 PM #13
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Originally Posted by SueC View Post
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!!
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Old 04-15-2016, 11:51 AM #14
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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!!

Last edited by OlliePop; 04-15-2016 at 12:56 PM.
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Old 10-15-2016, 11:25 PM #15
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Default 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 View Post
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
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Old 10-16-2016, 07:47 AM #16
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Originally Posted by Tryguy View Post
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?
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Old 10-16-2016, 11:40 PM #17
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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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Old 10-17-2016, 12:54 AM #18
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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!

Last edited by anon122822; 10-17-2016 at 06:42 AM.
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Old 10-17-2016, 08:38 AM #19
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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
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Old 10-17-2016, 11:14 AM #20
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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.
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