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.

Thanks for answering, Gerry.

Did you ever try going back on the dosage that was working for you before working with Dr. Stein?

I feel that given it works to some capacity indicates what they are doing is not quackery, but they may still be in the process of working through different complications associated with it given it is still ongoing research.

Newbie to the group and very pleased to read the wealth of information here. I was diagnosed in Apr 2013 and waited stubbornly for one yr before taking sinemet. It helped a lot but after only one yr dyskinesia started. the prospect of the ever increasing dyskinesia depressed me. I found the Amino Acid protocol information and accepted the premise that carbidopa causes dyskinesia. I switched to the protocol 3 months ago and within one week dyskinesia was almost completely removed. It has been a rough ride finding the dosage that works for me but I think we have it close. I am only taking 13.5g/d along with 1 Neuroreplete and 6 Cysreplete and 300 mg B6. I am very happy with the results so far.

Just wondering how anyone feels about the premise that carbidopa causes dyskinesia as suggested by the Hinz people? I have mixed some mucuna into my routine so as to not overdo carbidopa in the c/l regimen. Any thouights are welcome as usual....

Eric

one benefit for some patients receiving continuous delivery of l-dopa via infusion -dupdopa, in which i assume carbidopa is delivered in the same amounts as oral delivery, is reduced dyskinesias. there was a study done in the last few years where carbidopa was increased to i think 400mg and there was a small benefit.

keep in mind not every advanced pd'er receiving C/L get dyskinesias. i've read that dyskinesias have been reported by people receiving apomorphine. so i wouldn't say this theory is a slam dunk.

this anonymous first time poster poster didn't mention how much C/L he was taking, other meds andf supplements he/she was taking when the dyskinesias started and what efforts were made to moderate them.

If anonymous refers to me, I was taking 5 x 100/25 sinemet and 2 x 5 mg selegiline. I did not try any additional meds to control dyskinesia, I am happier subtracting meds. I took carbidopa out of the equation and it worked as advertised.

Hercules957,

Can you tell us exactly when you experienced the dyskinesia? That is, how soon after you took a Sinemet tablet did it begin, and how long did it last?

I'm thinking of the possibility that it was peak-dose dyskinesia, and that it disappeared because your peak dose might now be lower.

That is what happened to me about a year ago. I changed from taking one Madopar 100/25 tablet 3 times per day to taking half a tablet six times per day, and the peak-dose (dystonic) dyskinesia disappeared.

Jeff

You did not have erratic results you had an erratic caregiver.