Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 11-14-2008, 09:42 PM #1
reverett123's Avatar
reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default slowly and carefully

This is a tough one, but I will offer some suggestions. First, be aware that MP is a real drug. It can have both negative and positive effects. Start out very low and increase dosage slowly.

There's been a lot of discussion, so use the search box and read it all. There have been some problems to be aware of.

For me, dyskinesia was one. Just a little too much will set you jumping.

Another was a strengthened "off" phenomenon.

I still experiment with it but not nearly as much as I did. If I were earlier along the curve I might do more, but maybe not. In India, it is used as part of a finite program, but not indefinitely. So we don't have long term data.

Don't expect your Doc to have much to say positive about it. Too many unknowns.


Quote:
Originally Posted by sept08 View Post
I'm taking LEVOCARB 100/25 every three hours. I was taking 200/25 every 4 hours but it built itself in my body and I had bad reaction to it. I started the lower dose about a month ago tajen it every 4 hours as my doctor suggested but there was to much down time between pills, so I started taking it every 3 hours and it's a little better, but it's not right yet.

I also purchased some Zandopa from India and I'm anxious to hear what my doctor says about it. From what I've been reading in this forum, it's the pure form of the PD drug we are taking, therefore less side effects and better effectiveness all around.

I'd like to hear from other posters that are taking this suppliment how they are doing. Even if my doctor suggest that I don't take this, I'm going to try it, (stubborn streak) and if you guys are interested, I could keep a daily diary of such on this board.

I would like to start it sooner but I have no Idea on how much to start with, can someone advise me. I guess I could start with 1/4 teaspoon and go from there. As matter of fact I'm going to try it first thing in the morning and keep a record of how long it takes to take effect and how long it last. I'll let you know how it goes.
__________________
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.
reverett123 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ariela (11-14-2008)
Old 11-15-2008, 12:44 PM #2
sept08 sept08 is offline
Junior Member
 
Join Date: Sep 2006
Posts: 41
15 yr Member
sept08 sept08 is offline
Junior Member
 
Join Date: Sep 2006
Posts: 41
15 yr Member
Default

Quote:
Originally Posted by reverett123 View Post
This is a tough one, but I will offer some suggestions. First, be aware that MP is a real drug. It can have both negative and positive effects. Start out very low and increase dosage slowly.

There's been a lot of discussion, so use the search box and read it all. There have been some problems to be aware of.

For me, dyskinesia was one. Just a little too much will set you jumping.

Another was a strengthened "off" phenomenon.

I still experiment with it but not nearly as much as I did. If I were earlier along the curve I might do more, but maybe not. In India, it is used as part of a finite program, but not indefinitely. So we don't have long term data.

Don't expect your Doc to have much to say positive about it. Too many unknowns.
Thanks for your response and I did start this morning on a low dose of 2.5 ml.

I'll wait till just about bed time to give a full report of my experiences.
sept08 is offline   Reply With QuoteReply With Quote
Old 11-15-2008, 09:08 PM #3
sept08 sept08 is offline
Junior Member
 
Join Date: Sep 2006
Posts: 41
15 yr Member
sept08 sept08 is offline
Junior Member
 
Join Date: Sep 2006
Posts: 41
15 yr Member
Default A little information

Good night sleep last night, first all week.

Up at 9:00 am, took 2.5 ml of Mucuna and waited for an hour and had breakfast.
Mucuna did not work and I waited 4 hours before taking another dose. 1:45 pm upped the dose to 5 ml. By the way, my right arm tells me if the PD drugs are working or not. If it's loose and I then my body isn't stiff and I can perform pretty well. I'm sure a lot of you have the same problem. By to my report, about 45 minutes after my 5.o dose i could feel my body getting more fluid. things looking good. 4:00 pm body is getting rigid again. Toughed it out till 5:45 pm and took a 7.5 ml dose. Things started happening right away. I felt sick in stomach and I got a little dizzy but things evened out after a while. The rigidity left my boy and till around 9:00 pm I felt pretty good.

I just took a 100/25 cardoba to finish out the day.

Now here's how I see it.

At the moment I'm typing with 2 hands, not well but it's working.

I found that 2.5 ml does nothing.

5.0 I could definitely feel the rigidity leaving my body to some extant.

The 7.5 ml dose made a lot of difference, I had an almost immediate response from the drug and it lasted a long time.

Tomorrow, I'm going to start with a 7.5 dose and see if it has the same effect as today. I hope it does and I want to see how long I can go without taking another one.

night everyone
sleep well, I'm off to bed as soon as my Habs loose again...sheeh!!!!!
sept08 is offline   Reply With QuoteReply With Quote
Old 10-15-2008, 04:17 PM #4
leonore leonore is offline
Junior Member
 
Join Date: Apr 2008
Location: Brooklyn, NY
Posts: 57
15 yr Member
leonore leonore is offline
Junior Member
 
Join Date: Apr 2008
Location: Brooklyn, NY
Posts: 57
15 yr Member
Default mucuna and titrating to each person's needs

Quote:
Originally Posted by LING View Post
Any one still takes this stuff or zadopa? In the old forum, some who took this stuff reported great experience after taking this stuff and curious to know if it can be a complete replacement of sinemet. Does it bring long term benefits (say neuron protective effect) or it bring the same evil (say dyskinesa) as sinemet? appreciate your sharing.

LING

The Mucuna red velvet bean plant does not have the carbidopa which extends our western medicine synthetic levadopa, (Sinemet and Stalevo), so it shouldn't be a replacement for the synthetic levadopa, but it can help us to reduce it. That said, it has to be titrated for each person, or you will have side effects, like dyskinesias, or nausea, and each person has to figure that for themselves.
As for method, I actually pop Zandopa powder right into my mouth with a little spoon. For me, 1/4 teaspoon twice daily with my Stalevo works, but it absolutely can give me dyskinesias if I take more. I'm certain the serotonin in it also works, and makes me more even in my moods, and the levadopa in it it helps me to go "on" more quickly when I take Stalevo. I used it for a few months and took a break lately-not sure why-I think I was trying to sort out what was working since Azilect started helping me to feel better. Now I'm reminded to try Zandopa again, to help with the "off-balance" stretches.
Good luck! Leonore
__________________
“WHEN I DARE TO BE POWERFUL, TO USE MY STRENGTH IN THE SERVICE OF MY VISION, THEN IT BECOMES LESS AND LESS IMPORTANT WHETHER OR NOT I AM AFRAID.”
Audre Lorde: (1934-1992) African American, lesbian-writer/poet/warrior, who gave us the gift of her courage, before cancer stole her away
leonore is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
imark3000 (10-18-2008)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Mucuna pruiens olsen Parkinson's Disease 5 01-17-2007 07:31 PM
Zandopa, Mucuna? sunflower4u Parkinson's Disease 0 12-12-2006 12:04 PM


All times are GMT -5. The time now is 07:23 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.