[jslim180]

Can someone please share an some experience?

We had a recent set-back trying to transition from a Rx prescription form of l-dopa to a Natural form...

My relative, under the guidence of a doctor, tried to transition off of Sinemet by introducing D5 Mucuna. There diagnosis is Ataxia and there symptoms are very much like Parkinson's. Both medications are forms of l-dopa. It was less than 8 hours (2 doses at 4 pill each of D5 Mucuna) until the Dyskinesia got so bad they required sedation at a hospital. Dyskinesia has occurred prior to this without the use of any amino acids. This was the worst attack.

CysReplete and Vitamin D5 were used for 5 days prior to introducing D5 Mucuan. Nausea was the only side-effect.


What happened? Should this be done one pill at a time and keep careful watch for side-effects and making adjustments in dosing? What about daily urine tests - something .. gees...

Dyskinesia and its tendency to become perminate is there natrual doctor's major concern. The doctor's opinion is that the second ingredient in Sinemet, Carbidopa, is causing the Dyskinesia - "Carbidopa (Lodosyn) drug given to inhibit peripheral metabolism of levodopa."

I'm haunted now, the natural doctor has told us that the Carbidopa (in Sinemet) is the cause and instructed them to stop taking it entirely and to keep taking the D5 Mucuna w/supplementation mentioned above. Sure, Dyskinesia has lots of causes and this is a theory; but I have read the research and I believe it.

Here is how it turned out. Please forgive me, I'm venting - this event took place yesterday.... I got all the research together and sent it to their appointment with the Neurologist. At that time, the neurologist acknowledged that the D5 Mucuna can work and had heard of this treatment. I did not meet or speak with the neurologist. Forgive me, I'm going to stereo-type a little here to get a point across. I think this represents a dangerous view that needs to be corrected.

This is my imagination, the meeting went like this : """yea, my stuff sucks and that other stuff works ok; I will offer nothing to discredit it nor do I have any words of caution. However, I know more about my crappy stuff so keep taking Sinemet. I'll read about the amino acids and I'll try to discredit your natural doctor, but I will not change my mind. I will not offer any medical assistance in support of using amino. Ok, I have to go now."""

Ok, I'm stereotyping but, seriously, this is a common view. If I had someone's life in my hands I would do a lot better than that. At what point are you going to forget about the risk and do something better? If some well-adopted treatment sucks this bad and there is a better experiment going on, it is your duty to humanity to participate and freely share the results with the rest of us. There is no doubt in my mind which pills I would take as my primary treatment.

Anyways (feeling better)... The decision makers are good people. In there shoes, I may have decided to continue a lower dose of Sinemet too even though this came from the (admittedly) ill advised neurologist. I wonder if it Sinemet were not the quickest way to relieve the Dyskinesia and perhaps the best way to avoid more damage. Please offer in-site here, we really need to know this stuff.

I'll wrap it up. This is important, the Dyskinesia has long-term permanent risks; there is no going back. The dose of Sinemet has been reduced by half. You know by now, I'm not letting this "natural" thing go.

Would you expect that the Dyskinesia would show its self at 1/2 a dose? Would you seek the natural doctors approval to introduce the natural l-dopa drug (D5 Mucuna) again at a pace 1 pill at a time, etc...?

please help ..

thank you,
Jimmy

[Darlene]

Jimmy,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

[azoyizes]

Welcome to NT. We're so glad you found us!

Feel free to look around at the different forums. Read posts, and join in anywhere.

The people here are great.

[alt1268]

Welcome, to neurotalk. This is a hard situation to be in. Unfortunatetly, we are not Dr.'s. I can only speculate that maybe this person may not be able to come off their medications. Going all natural is great, but does not have the same composition as a RX.

Good luck!

[Rrae]

Welcome to NT!

You've certainly come to a great place for support and understanding!
You'll find the folks here to be very helpful and friendly.

Make yourself right at home!

It's great to have you with us.

Rae