i wish that i had not tried to delay sinemet by taking a dopamine agonist, mirapex. i had serious problems with obsessive compulsive behavior and i also lost the ability to handwrite. i have taken sinemet for about six years during which time i went off it twice because i believed i didn't have parkinson's disease; i believed i was somaticizing parkinson's disease. i was crazy, but that's another story. i became almost immobile, and was hospitalized because there was concern about my nutrition and the possibility of my choking. when i went back on sinemet i regained the function that i had previously. i get dystonia, cramping of my feet and calves, almost every day, ten minutes to two hours, more often in the afternoon or evening. i can't walk on dystonic feet; i'm planning on asking if amantadine would help at my next neuro appt.


barb

QUOTE=imark3000;684821]Dear Trixiedee
I was almost at same place as you are 2 months back: 4 years since diagnosis without medics (but I am 67). I take loads of supplements, exercise 2 hours a day diligently. I have energy and no movement complains except tremor, memory and speech problems.

However, I decided to start sinemet for the following reasons (This is purely my opinion):

1) I always believed that sinemet is toxic and may cause speeding of the progress of disease but lack of dopamine seems to lead to even worse deterioration. I was specially influenced by the research that claimed and presented the many roles of dopamine in our functioning including movement memory (or muscle memory). In other words: without dopamine we seem to forget how to move.

2) Overall experience of doctors (as they claim), indicates generally better performance of patients who started earlier on sinemet.

3) It is vital to be at best TODAY, because this will enable you to exercise body and brain. 'Use it or loose it' is the point in mind.

I encourage you to watch the discussions in following link which summarises the point of view of the medical establishment today regarding PD medics:

http://www.neuroconnection.net/

I also encourage you to follow in parallel to medics (if any) a rigorous regime of exercise, yoga, taichi, music, dance , etc.. and learn to find joy in life, as many of the PD veterans on this forum do.

Best of luck
Imad[/QUOTE]

Dear Trixidee,

Am wondering what's your current status? It sounds to me like you still have a viable route to go with amino acids/mucuna neurotransmitter balancing. From my friend Jan's success, she's far better now than when Sinemet started to fail her, she's far better now that when Sinemet was working okay, it's worth a solid try. Mucuna will not work by itself. We see the essential role of tyrosine and 5HTP. With neurotransmitter balance, the depression lifts and there's physical recovery possible.

Best of courage and striving!
Trisha

Hi Trixidee
Like you,I am on Ayurvedic herbs (And Azilect )
Since 4 days,I've added Kyo green (1 tbspoon in the morning ) and Chlorella (5 with every meal) to my daily herbs intake
this combination is giving me an incredible energy
it seems to boost the herbs,in a very good way !!
I found this idea in the Annetta freeman's protocol
http://www.ceri.com/annett4.htm

i think it's worth a try

kind regards

please explain the science and evidence supporting neurotransmitter balancing, any references? unless your friend is a strict vegetarian, how could there be a tyrosine deficiency? what was her sinemet regime if i may ask? i've tried 5HTP and couldn't tolerate it.

http://en.wikipedia.org/wiki/5-Hydroxytryptophan
http://www.umm.edu/altmed/articles/tyrosine-000329.htm
"Levodopa(L-dopa) -- No one should take tyrosine at the same time as levodopa, a medication used to treat Parkinson's disease because levodopa may interfere with the absorption of tyrosine."

since mucuna has l-dopa, wouldn't taking tyrosine logically reduce it's effectiveness? i imagine also l-dopa inhibits the enzyme that converts tyrosine to l-dopa?

Biosynthesis of dopamine

L-DOPA is produced from the amino acid L-tyrosine by the enzyme tyrosine hydroxylase (TH). It is also the precursor for the monoamine or catecholamine
http://webcache.googleusercontent.co...&ct=clnk&gl=us

Within the last year or so, Ron Hutton was supplementing his usual meds, primarily sinemet, I think, with l-tyrosine. He found that when he went "off" while on this regimen, it was much worse than before he began tyrosine. I suggested that the l-tyrosine was actually interfering with the absorption of l-dopa by competing with it for the brain cell membrane uptake system that they share. If I remember correctly, the problem was solved when he discontinued the l-tyrosine.

l-Tyrosine is the precursor of dopamine. Two enzymatic steps inside the brain cell convert tyrosine into dopamine. If one is low on the appropriate healthy brain cells, as we PDers are, there is just not enough "machinery" to provide adequate conversion of tyrosine to dopamine. Starting out with l-dopa, the remaining cells only have to do a single step to make dopamine. I will see if I can find that thread with that exchange.
Robert

ps I went back and found the thread mentioned above. It was actually in Nov and Dec of 08.

For your reference: http://www.neuroassist.com/Parkinson's_Disease.htm

Best regards,
Trisha

Interesting website Trisha. What is your experience with this philosophy? PM me if you prefer.

thx,
md

are you using their protocol? they seem to sell products and lab testing.
http://www.drcordas.com/education/ne...SIVE%20~0b.pdf
the link is a business imho, not research.
http://www.casewatch.org/fdawarning/...research.shtml
http://www.dr-bob.org/cgi-bin/pb/mge...gs/959928.html
http://www.addforums.com/forums/showthread.php?t=75049


do you have a relationship with neuroassist?
your previous posting:
My friend Jan has been using Mucunas since mid-September and is now transitioned off of Sinemet completely. It still is a tough transition due to detoxing, but it's fabulous to see her doing far better than when on that drug. On mucunas: I patched together a lot of information for Jan but eventually found our way to the NeuroAssist website, because they support neurotransmitter function with mucunas AND protect the brain with amino acids. Jan's on that protocol now and the jury is still out, but it looks really viable for her.

We'd prefer an open system with possibilities of different brands of products, since Jan's reactive and often needs to switch sources of herbs, etc., but decided to try this company's packaged approach because of the body of research behind it and support they offer their practitioners. They also test dopamine/seratonin/norepinephrine/epinephrine levels (how cool is that!). But note, I'm NOT making an endorsement here, it's way too early to know how she's going to do. Months more are needed. I just want to stress the synergistic role that amino acids play in any L-dopa supplementation.

Your father is fortunate that you are on the trail of alternatives for him! Jan regrets starting Sinemet when she did. I hope your father will be able to find something that supports him without doing harm. I wish you all great luck and that your efforts are soon rewarded!

Best regards,
TrishaPDX

I have no idea whether the neuroassist programme is genuine or not, but I am concerned that someone might see these posts and decide to try and come off sinemet without guidance, or think that it can be stopped easily.

It must be stressed that no-one should do this without taking appropriate medical advice, as it could give rise to a life-threatening condition called neuroleptic malignant syndrome. This warning is usually in with your medication and is there for a reason......

Coming off ldopa is a little bit more than detoxing........

Hi folks,

Don't worry, Jan and I have absolutely no relationship with NeuroAssist, other than she has been buying their products since September 2009. I keep mentioning them because we haven't found another such mucuna/amino acid protocol that's researched and geared to Parkinson's. We have loads of complaints about NeuroAssist, but it's still the protocol of choice. Believe me, we've looked for alternatives and are still looking!

Jan began switching over from Sinemet to the NA regime when, after 3 years, Sinemet started to fail her big time. In her experience, the NA protocol was extremely difficult to transition to, post-Sinemet dependency, but she's made it to the other side and is doing very well. Dyskinesia is the thing to beat now.

Jan's ready to start engaging in posting here herself, which I hope she'll do soon. She wants others to know there are alternatives, like a mucuna/amino acid program, that are far less toxic than pharmaceuticals and allow for healing. There are a few others we know of now who have braved this transition and are also using the same protocol, but there's not much dialogue about it. We welcome that!

PLEASE NOTE: It would not have been possible for her to switch from a drug like Sinemet to this other approach had she not had 24 hour care for more than six months. It was a huge big deal and ABSOLUTELY NOT should anyone go off drugs without having a strategy and medical/personal care team in place to help with drug withdrawal, detoxing, readjusting, etc.

Sorry that I don't visit this site more often. I learn so much from you all and cherish your courage and commitment to shared learning. As I said, I'm hoping that Jan will join on soon herself.

Best regards,
Trisha