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
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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.
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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