Parkinson's Disease Tulip


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Old 09-23-2015, 07:03 PM #31
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Originally Posted by CTjeff View Post
Day 3 update.

The protocol does give relief of symptoms but only for 1-1.5hr max. Then the off effects seem to be worse than when on stalevo.

After alerting his Dr. She recommended him to up the intake of Mucuna d5 to 8 pills per dose. However still the effectiveness has only increased about half an hour to an hr.

On the second day he started developing dyskinesia in his legs which has been very uncomfortable for him. We left a message with his Dr. About this new condition.

So far this protocol has been very difficult for him but is hoping things will turn around when he gets the regimen dialed in.
The average time for how long it takes for a parkinsons patient to get narrowed in on the levels of the nutrients for symptomatic alleviation, as I have read in their studies/website, is around 3-6 months. So understand that it will take a while and at first while transferring from the meds to the amino acids side effects are rather pronounced while the transfer takes place.

”Novel observations reporting a group of 17 Parkinson’s disease patients led to identification of carbidopa-induced dyskinesias, which had not been documented prior to 2012.1 These patients had been ingesting prescribed concomitant l-dopa/carbidopa preparations for 1–7 years. Their drugs were continued as the core nutrients were started. The mean daily dosing value of l-dopa/carbidopa was 1,000 mg and 250 mg, respectively, at the initiation of the core nutrients. The mean duration of previous drug treatment was 3 years, 7 months. Onset of dyskinesias began within the first week of treatment when the core nutrients were added. Dyskinesias were generally described as facial twitching and head bobbing due to peripheral muscle-control problems within the neck and upper shoulders. When dyskinesias developed, the l-dopa/carbidopa was immediately discontinued and the nutritionally sourced l-dopa increased fivefold to compensate for the loss of the carbidopa effect on the central nervous system by blocking peripheral conversion of l-dopa to dopamine. This conversion to higher-dose l-dopa was monitored using the previously published pill-stop technique.37 Following this protocol, all patients achieved full resolution of dyskinesias within 4 days. This led to the hypothesis that the dyskinesias that resolved after applying the new protocol had been induced by the carbidopa and were not related to the l-dopa. There were no refractory dyskinesias experienced.”

Source - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4238750/
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Old 09-24-2015, 07:53 AM #32
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Some posting on this thread are in the stone ages. Are so close minded that they will never learn. Sometimes makes we wonder if they work for the drug companies.
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Old 09-24-2015, 09:10 AM #33
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Originally Posted by badboy99 View Post
Some posting on this thread are in the stone ages. Are so close minded that they will never learn. Sometimes makes we wonder if they work for the drug companies.
why beat around the bush badboy, your're talking about me. considering i've tried iv. glutathione, low dose naltrexone, chelation therapy, and just about every supplement mentioned on this board including mucana it's pretty ridiculous saying i might work for a drug company, especially since i've been critical of the high costs of new pd drugs on this board and have stated many times i'm only taking C/L, noone is making a fortune on selling generic C/L.

If you want to have a rational discussion about the HINZ protocol and discuss the scientific merits of the papers of the papers presented by those making likely millions from selling their supplements i'll gladly participate. i'll start by saying these papers are written by people with a financial stake in this treatment and no independent researcher has ever duplicated their results. so you expect anyone to accept their findings without some reservations?

Everyone on this board is anonymous, there is noone verifying if a poster is being honest or dishonest, has pd or doesn't have pd, is working for a drug/supplement company or not. What I saw here was a newbie asking for advice on an unproven pd treatment, backed up by studies conducted by those with a vested interest on selling this treatment and none by independent researchers, which at least to me makes this research highly suspicious, a non-pder just by chance shows up on this board and starts hyping this treatment yet doesn't know anyone with pd who has used it much less has benefitted from it. The newbie starts the procedure and gets support from this non-pder who as far as i know knows noone who has pd. And you wonder why i'm just a little skeptical about motives here?

To repeat, if you want to debate each paper mentioned here and all the claims about the HINZ protocol, i'm more than willing. The purpose the this board i hope is not to blindly accept as fact everything posted here, especially when a treatment costs as much and is difficult to follow as the HINZ protocol, as controversial and when other members posts about the HINZ treatment complaining about the significant price increases in 40% MUCANA.
I find it just a little interesting that their treatment requires you buy this MUCANA from them, hey, isn't that something drug companies do? And jack up the prices?

I posted on this thread not because i have a knee jerk reaction against alternative treatments, i have a knee jerk reaction about some poor pd'er possibly getting ripped off and ending up worse.

Last edited by soccertese; 09-24-2015 at 11:06 AM.
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Old 09-24-2015, 09:18 AM #34
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I'll pass.
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Old 09-24-2015, 09:59 AM #35
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Default CTJEFF, i suggest you read this thread on HINZ

http://neurotalk.psychcentral.com/sh...highlight=walk
excerpts

Gerry would you mind giving us an update on how you are doing on the Hinz Protocol. I find it very interesting and wanted to see if your still having the same results as last year and if the supplement routine is able to be followed over a long period of time. Do you ever miss a dose and what happened. Thanks in advance
09-10-2013 badboy99

---------------------

09-11-2013, 09:15 AM GerryW

I still follow the Hinz protocol and I don’t miss doses. In over a year I still haven’t found the combination of doses that moves me into phase 3 (see the recently posted link to http://healthyselfnow.com/parkinsonstx.php for an explanation of this.) Partly this is because the doctor (DC) I work with is a sort of intermediary between Dr. Hinz and myself. He has to contact Dr. Hinz for advice and instructions so there is always a considerable wait for results and dosing changes. Dr. Hinz said this last dosage change should finally move it and the urinary dopamine in phase 1 finally dropped quite a bit so that’s good. I have another consultation today so we shall see.

In the meantime, despite this, it works great with no side effects. I am looking for the dose that stops progression and makes the doses last longer. I have to mix my powders every 3 hours from 9 to 6. That can be a hassle if you are out and about. Also eating seems to delay or prevent it from kicking in sometimes so I get to walk or eat but often not both. I am still trying to figure a way around this.

There are some interesting effects. The regimen seems to stop all motor and many non-motor symptoms when I am on (tremor, anxiety, constipation, etc.) but they return when a dose wears off. When on I am effectively normal and I can easily con myself into believing I am cured! As for how I am different in the off state from when I started. I used to have balance issues, dystonias, bradykinesia, gagging problems, and walking problems. All are now gone except for the walking problems which are worse. My legs never had rigidity, more like the power cord was unplugged. Now when the power is off it’s really off and I need a walker.

I am hoping that when I get to phase 3 that issue will be taken care of.

I still think the Hinz program is marvelous. It’s not for everyone. It is expensive, it is a hassle to use the blender or shake the suspension vigorously (I use almond milk or orange juice) every 3 hours, and it takes time to find the right balance of aminos. On the plus side it does the job without side effects.
------------------------------

TrishaPDX 09-11-2013, 11:29 AM
That's good to know, and I'm glad you are doing well, Gerry.

My friend Jan's two year experience with the Hinz protocol allowed her to go off of Sinemet once the drug stopped working for her, allowed periods of regeneration and cognitive return-to-selfhood.

The Hinz test is expense as any test, so you only test when things aren't working. Then, the lag time between Hinz method of testing and dosage adjustment was frustrating; it could take up to 3 or 4 weeks after the urine sample was taken for results and a new prescription. The scene had shifted on its own by then an the point of reference, e.g. the terrain that had been tested, was different. So, we learned by trial and error to use other methods of adjusting dosage that involve neuro-muscular feedback.

While I am not advising anyone to bushwack against their doctor's orders, please know that we did this with her physician's foreknowledge and permission. Jan would use kinesiology or ART testing or MORA machine feedback to identify how much and when each daily dose should be taken, to optimize uptake and minimize dyskinesia. Remarkably, this helped traverse the 3 or 4 weeks until the lab results and new Hinz opinion came in. Often, we found convergence, same dosage directions. Just sayin'.

The above is not to imply that Hinz or other's properly trained are not essential!!! Only a life story on how tricky it is to balance neurotransmitters this way, that we felt the system is not fully developed to address immediate need for dosage adjustment and we got by as described above.

The part that didn't work is that, in Jan's two year's on the Hinz protocol, she kept seeming to need greater and greater quantities of mucuna for those desired on periods. She took so much that she revved her system up, the adrenaline part, and eventually the dyskinesa problems that drove her off Sinemet manifested and then drove her off mucuna/aminos. Had the cost of the Hinz protocol not been prohibitive and had we gained more confidence that a therapeutic balance could be achieve, Jan would have elected to remain on them. Nourishing the brain still makes sense to us.

So, is there a moral? Find additional ways to read your symptoms. Have unlimited funds to help find your way. Don't take too much of anything. Um...

Gerry, all good wishes! I laud your efforts and am glad to see you doing well. We'll keep learning from you.

Trisha
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Old 02-08-2016, 11:32 AM #36
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The facts on record here- I was curious so looked it up- *new members cannot link*
https://bmp.hlb.state.mn.us/DesktopM...31670&ltype=PY

It looks like he was reinstated 3/2005.
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Old 02-08-2016, 01:21 PM #37
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Thanks, That made some interesting reading. Good to know.
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Old 02-27-2016, 07:06 AM #38
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Default Amino Acid therapy for my father

Hi all ,
My father is 75 years old and have PD for about 17 years , he was using Madopar and paramapixol (Sifrol) always . About 2 years ago he stop walking , talking , eating ....
and he is in bed from that time , he had very bad condition , his last dosing was : Madopar 200/50 x 6 times a day + 3x.36 mg paramapixol . some months ago I read about amino therapy and grab whole of things needed to start the process , I read almost whole papers created by Dr. Hinz and Dr. Alvin Stein .
I am not in USA , so I forced to do all things by myself . I bought L-dopa (mucuna) , tyrosine , cysteine , b6 , folate , selenium and other cofactors from online shops and start the job .
I cant offer test from DBS lab , so I am monitoring him every hours and decide to what to do.
his current dosage of amino acids are :
L-dopa (99% mucuna - source from usa) = 18.6 Gram per day
L-tyrosine = 12 gram per day
L-cysteine= 4.5 gram per day
5-Htp = 100 mg per day
B6= 300 mg per day

I did a pill stop some days ago and it shows that my father need higher dosage of L-dopa .
His main symptoms are = confusion - agitation - delusions and sleep disorders
I don't know when he will reach to balanced dose. I should mention that his overall condition and symptoms are very better from before starting aminos.
I would like to hear if anyone else here is using higher that this dose of L-dopa .
Best Wishes
Babak
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Old 02-27-2016, 11:46 AM #39
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Originally Posted by engsec View Post
Hi all ,
My father is 75 years old and have PD for about 17 years , he was using Madopar and paramapixol (Sifrol) always . About 2 years ago he stop walking , talking , eating ....
and he is in bed from that time , he had very bad condition , his last dosing was : Madopar 200/50 x 6 times a day + 3x.36 mg paramapixol . some months ago I read about amino therapy and grab whole of things needed to start the process , I read almost whole papers created by Dr. Hinz and Dr. Alvin Stein .
I am not in USA , so I forced to do all things by myself . I bought L-dopa (mucuna) , tyrosine , cysteine , b6 , folate , selenium and other cofactors from online shops and start the job .
I cant offer test from DBS lab , so I am monitoring him every hours and decide to what to do.
his current dosage of amino acids are :
L-dopa (99% mucuna - source from usa) = 18.6 Gram per day
L-tyrosine = 12 gram per day
L-cysteine= 4.5 gram per day
5-Htp = 100 mg per day
B6= 300 mg per day

I did a pill stop some days ago and it shows that my father need higher dosage of L-dopa .
His main symptoms are = confusion - agitation - delusions and sleep disorders
I don't know when he will reach to balanced dose. I should mention that his overall condition and symptoms are very better from before starting aminos.
I would like to hear if anyone else here is using higher that this dose of L-dopa .
Best Wishes
Babak
Get in contact with Dr. Stein. I believe he works with patients who are not in the usa. You will not be able to successfully treat your father without doing lab tests to control dopamine fluctuations with tyrosine. Also, you need to be certain the substances you are using are actually what they claim to be. The supplement industry is laden with false labeling which means the tyrosine or 5-htp you are buying may not actually be 100% what they say it is which will make it impossible to treat him correctly.

Dr Steins offices phone # - 954-581-8585 or email him at nobones@aol.com

If you decide to call, do it during the week. They are not open on the weekend.

I repeat do NOT do this on your own. You NEED the lab tests as well as the experience of a trained physician in this approach to be able to do it successfully. Get in contact with Dr. Stein, he does consultations over the phone so you should be able to do it.

I know all this because I am a patient of Dr. Steins for the treatment of TBI related issues.
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Old 02-27-2016, 12:29 PM #40
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Hi billboby21 ,
Thx for your idea , i just sent an email to Dr. Stein . Will be wait for him . Anyway i would like to know the Amino dosage of a patient with an over 15 yrs history of PD. Just for compare . Coz all of cases in this forum have a history of PD below 15 yrs. i am know that the dosage will differ for every case , just for compare.
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