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Old 02-11-2018, 07:21 PM
Marty Hinz, MD Marty Hinz, MD is offline
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Join Date: Feb 2018
Posts: 11
5 yr Member
Marty Hinz, MD Marty Hinz, MD is offline
New Member
 
Join Date: Feb 2018
Posts: 11
5 yr Member
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Quote:
Originally Posted by GerryW View Post
Hi Billbobby21,

I didn't have much trouble with on/off's until I changed doctors. I was looking for a longer on time (and who isn't?) but my doctor was quitting the AA Hinz therapy business so he wasn't able to help me any longer. He had lots of urine tests ordered but the results always came back with ever higher amounts of dopamine in the urine. At some point it is supposed to stop doing that and start going lower. Mine didn't so I was dosed instead by the empirical results he got from the recommendations of Dr. Hinz. That worked for a long time.

The new doctor (who is apparently retired now) had me take tests, too, but got too frustrated by the erratic results. So he started changing the doses of mucuna and tyrosine seemingly off the top of his head. He didn't keep a medical record so he would sometimes go back to doses he had tried before. I kept telling myself that his vast experience was good enough. When the side effects became what I considered life threatening and he wanted to increase the dose even more, I decided to jump ship and try the conventional route.

The tyrosine is supposed to prevent the on/off phenomenon, but it has to be dosed carefully at the right amount. Along with mucuna a dose that is a fraction of a gram under or even over the ideal will not get positive results. Like Goldilock's three bears, it has to be just right and that means carefully weighing out each dose.

My "experimental" doses resulted in some on/off phenomena plus erratic blood pressure problems including fainting as well as anxiety and feelings like I was about to explode. Those have gone away now since changing to conventional generic Sinemet and Comtan. But now my tremors are back, though not dystonia. Constipation is now a daily struggle. So is daytime sleepiness and I am losing my voice so the disease has decided to start progressing, something it didn't do with the Hinz protocol. That might be because I don't take the big daily dose of the glutathione precursor, l-cysteine anymore.

As is typical for levdopa therapy whether mucuna or c/l therapy, food didn't bother it for the first few years, but then it did. It has become a problem with conventional therapy and protein and eating too much interferes with my doses.

I might not be a typical Hinz protocol patient. The doctor said he had no other patients like me. Results, as they say, may vary. The protocol was expensive and weighing and mixing the powders numerous times a day, inconvenient, but it seemed to stop a lot of problems that my current drugstore regimen doesn't. If you try this method find a doctor you can work closely with and who doesn't start swearing when he gets frustrated with his results.
You did not have erratic results you had an erratic caregiver.
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