Parkinson's Disease Tulip


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Old 06-23-2008, 07:51 PM #21
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Default Before I join you there

I started reducing my Sinemet/L-dopa before I started taking Zandopa. I was taking 1500 mgs daily (500mg RR and 1000 mgs CR). I eliminated my last dose (one 100/25 RR Sinemet/L-dopa and two CR 100/25) and started taking L-Tyrosine instead. I continued reducing the remaining 400 mgs of RR and noticed an improvement in my side effects, less calf pain and toe dystonia. This was interesting indeed.

I was down to 800 mgs of CR when I started Zandopa. I am now on my third week of taking Zandopa and continuing to reduce my CR Sinemet. Yesterday I was down to 500 mgs daily and today I have reduced that to 400 mgs.

The difference is so obvious that everyone comments on how much better I look and are doing. Most are astounded. The reduction of my pd meds is being accomplished so fast even I find it hard to comprehend. The side effects are so minimal to non-existent. Gone are the on/offs, freezing and pain.

Why I have been so fortunate is a mystery. Is it because I don't believe I have pd? What about the theory that you continue to have side effects after you stop taking dopamine if you can even accomplish that goal. These are things I can not answer.

I started reading books on the brain and realized I was on my way down. I started getting interested in the brain re-circuiting itself and knew I had to change and re-think everything. I was depressed knowing the meds I had to chose from were not the answer and the cure they told me that was coming in 5 years was not coming where it would do me any good.

I felt alone until I found this forum. All of you are so knowledgeable and open.
I got info here that I wasn't getting from the neurologists. I feel I have turned the corner. I had a much more thorough post but lost it.

Bonnie
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Old 06-24-2008, 05:01 AM #22
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Default Just when you are saying how good your child is

the principal phones and tells you that the very child you were speaking about just rode a motorcycle through the gymnasium. After my glowing, everything is wonderful post..........I am up because I can't relax enough to sleep. I just took 1/2 a tab of RR 100/25.

Still not sleeping. I had such a good day I thought what the heck..........and I have some distance to travel by car on a painful lumbar to get my MRI's done tomorrow so sleep would be good.........and so I took one more 1/2. My legs started vibrating so I sat on the floor, then I had to pee (does that not always happen, urinary retention) while I was thinking about that, I froze. I can usually manage to stop the freezing pretty quickly now. I was a little unsteady as I shuffled to the bathroom. Now I have to wait it out, relax (no negative thinking like 'damn you idiot, now you've sabotaged yourself') until I can sleep. Fear and meds. Old habits don't die easy.
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Old 06-24-2008, 01:49 PM #23
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Bonnie, I am so happy for your progress - but don't go too fast, girl. Otherwise you could hit an unexpected bump at some point that could be upsetting.
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Old 06-24-2008, 02:35 PM #24
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Hi Fiona,

That's me a bumpy road. Because I believe the brain can re-circuit and heal itself helps with the bumps. I think we will hear more about this theory in the near future. Thanks for encouragement and advice.

Bonnie
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Old 06-24-2008, 07:54 PM #25
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Default Tincture???

No one mentioned mucuna tincture? I ordered a bottle from a supplier in the UK but I have no idea how to use it. Mostly I have no idea of how the dosages are equal counterparts of the sinemet. it came with a teeny tiny measuring cup.

with medications 5mg of this med IS NOT equal to 5mg of that med. So how does anyone really know what's appropriate.

Rick, you may be able to boil the powder in a bit of water...rather than baking it. You could then use that for a smoothie. The amount of mucuna in a single dose is so small that I can't imagine there would be enough toxin to make a diff. Let me talk to my bean guru about the toxins in beans. When you soak beans your softening them up for cooking and ,the excess water is poured off as water leaches out the toxins. But thats not true for all beans. For example we eat Pork and Beans canned with no ill effects, but canned beans like red kidney we are told to rinse thoroughly.

Lots of questions...but we have all the time in the world
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Old 06-24-2008, 09:02 PM #26
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Default tincture?

That'll take some trial and error Rosebud. 'Course, time you work it out, the little bottle will be used up and you wiil start over...

Well, if it was easy then everybody would be doing it.

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No one mentioned mucuna tincture? I ordered a bottle from a supplier in the UK but I have no idea how to use it. Mostly I have no idea of how the dosages are equal counterparts of the sinemet. it came with a teeny tiny measuring cup.

with medications 5mg of this med IS NOT equal to 5mg of that med. So how does anyone really know what's appropriate.

Rick, you may be able to boil the powder in a bit of water...rather than baking it. You could then use that for a smoothie. The amount of mucuna in a single dose is so small that I can't imagine there would be enough toxin to make a diff. Let me talk to my bean guru about the toxins in beans. When you soak beans your softening them up for cooking and ,the excess water is poured off as water leaches out the toxins. But thats not true for all beans. For example we eat Pork and Beans canned with no ill effects, but canned beans like red kidney we are told to rinse thoroughly.

Lots of questions...but we have all the time in the world
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 06-25-2008, 07:50 AM #27
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Default blood sugar

One thing to keep in mind- Mucuna lowers blood sugar which is a good thing overall. But if you start the day with mucuna and forget to load up on protein and complex carbs you may find the rug jerked from under you about the two hour mark as I did this morning. Just now coming out of the fog.

Another time to be aware of this is when you are taking large doses or when you have been taking all day.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 06-25-2008, 10:42 AM #28
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Default Tincture again...

I was on the net this am looking for info on the tincture apparently it comes in a variety of strengths and is much more potent than the powder. Its suspended in an alcohol base (25%). you can rid yourself of the alcohol by dropping a bit (now there's a precise measurement!) in water and bringing it to a boil.. So how shall I start this...

oh yes, the website I got the info from was www.raysahelian.com
He talked a bit about other disorders and is sure dopamine depletion is at the root of fibromyalgia. Many similar symptoms. Hmmmm

May the Force be with us!
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Old 06-25-2008, 08:35 PM #29
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Rick, I can emphasize with you today, after my 2pm dose of Mucuna (1 tsp to 1 CR 100/25) I was in a tizz for 2 hours. The legs just beating away. I am not even going to second guess what is going on. I start to feel foolish, like some kind of zealot.

Trying to stay relaxed (not depressed), exercise (yeah right), eat properly, figure out what pd meds and which supplements are working, balancing my diminishing bank account.........need I go on.............it is a lot of work.
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Old 06-25-2008, 09:24 PM #30
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Default sinemet and mucuna

I have about decided that there is more than a simple additive effect with these two. A little of both goes a long way it seems. And speaking of bank accounts, mucuna is a big help there. One thing to be figured out is how to stretch the effect to last longer. Mine is about two hours on an empty stomach but that lets the blood sugar drop. I want to try it with protein, fat, carbs, etc to see the effect.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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