Has anyone tried to stop Sinemet (Carbidopa-Levodopa)? I'd be curious.

The following warning appears on the web:
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WARNING!
Do not stop taking Sinemet suddenly, as a serious group of side effects, known as neuroleptic malignant syndrome (NMS), may occur. Symptoms of NMS include:


•A high fever
•Stiff muscles
•Confusion
•Irregular pulse or blood pressure
•A fast heart rate (tachycardia)
•Sweating
•Irregular heart rhythms (arrhythmias)
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I stopped cold turkey 3 weeks ago and have had little negative reaction but absolutely no muscle stiffness. I can do little things now that were either impossible or very difficult: shaving, showering, driving, writing, getting out of a chair, typing, rolling over in bed.

Just wondering if others have had experiences they could share.

Jim

My patient/ friend stopped taking sinemet over approximately 12 months time. Using the method of making liquid version (dissolving the sinemet pill in water and adding ascorbic acid and shaking) Decreasing the amount taken ever so slightly every week. But, during this time, she was also taking fava bean supplements to replace the l-dopa that she was getting from sinemet. I think it would be VERY hard to quit taking l-dopa..it is what makes me functional. I am only 60 and still have life in me and things I'd like to do. There is alot to consider when you have a physically disabling condition and taking prescribed meds. We all have to make choices in Life...weighing pros and cons...personally, going natural was the only option I considered after reading and seeing the side effects of synthetic l-dopa . But, if I hadn't started my research before my condition became worse...I never could have started it afterward. Looking back, I had a very small window. God placed the right people in my path and right experiences to prepare me for what I needed to accomplish before the worsening symptoms hit. If the fava tincture that I depend on had not been started exactly when the first one was...it may never have been made. God has a perfect plan and perfect timing for all things.

Four years ago (five?) I was taking 32 mgs of requip daily. DK was becoming a problem and I quit overnight in favor of ldopa. The warnings about doing things like that had just began to appear and I was not aware of the risks but I sailed through with no problem.

Aunt Bean,

Below is the Oswald Chambers for June 25:

I hope this doesn't violate any rules...

Jim

That is a beautiful devotional ,,,I had one of his books several years ago that I read daily. It is true. If you have not suffered, you are not as much value to those who are suffering. And yes, I feel that for this purpose I am here and pray that my work shall be accomplished and will be a help to future generations. Blessings..........Aunt Bean

Where can I find this Fava bean extract?

My friend Jan replaced Sinemet with an amino acid with Mucuna Pruriens combo; this was an extremely difficult but rewarding change once she got through crisis of change. She had no other choice at the time, given how badly Sinemet was going for her. After two years, she cycled back onto Sinemet because of cost of the amino/mucuna regime and had a very brief honeymoon with it, but then again, she didn't do very well on Sinemet for long, especially at the doses she seemed to need. Dyskinesa galore.

A few months into this, she added an amino acid-rich vegetable complex, the Neurogenic Extracts, and was able to reduce too much (for her) Sinemet to a single tablet of 10/100. That was a year ago. Since then, without support from the vegetable extracts, she's reduced from a high of 4.5 tablets / day and is now at 3 tablets. She seems to do better on the Merck brand, still taking the 10 / 100 formulation.

Any drug change takes lots of support. We found that the minimum timeframe a dose change to settle in is about 10 days an, from there, to allow about 3 weeks to a month or so for stabilization before the next reduction. Not to push until there's stabilization.

Now, she's looking like Amantadine is going to need to be eliminated from her regime. Here we go again.


Best wishes!
Trisha

Where did you get the extracts? I can't seem to find them on the internet anywhere...

We sourced these nutritional extracts with the help of Dr. John Grinstein. We cannot recommend them, however, unless money is no object. Also, supply can be a truly significant problem. More to say about them at another point. Grinstein's neurogenic extracts did show how nutrition can be managed to optimize the body. Through their use, Jan was able to dramatically decrease dependence on a drug that was messing her up and in the process she made a major commitment to finding a diet that enhances her well-being.

So, back to this thread, what we've found as a mainstay of reducing or stopping Sinemet: fresh, organic vegetable juices; the Ketogenic diet that clears the way for better brain; detoxing the liver, etc. through every way practical, like using chlorella or cleansing herbs; increasing amounts of exercise; asleep by 9 or 10 PM.

Some things that are making an obvious difference for Jan, who wishes for but does not respond to carbadopa/levadopa without bundles of side effects.

just curious, how much do they cost?