Parkinson's Disease Tulip


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Old 03-08-2009, 08:03 PM #11
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Default timing

Ron-
Approximately how long has it been since you made the change and how long a taper off the sinemet did you use?
-Rick


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Originally Posted by Ronhutton View Post
Hi lurking,
Yes, I have reduced from a max of around 600 to 700mg levodopa per day to 150 to 200mg now. I have increased my curcumin to 4,000 mg per day, since it has been shown to be safe at 12,000mg. I also am now very careful to avoid constipation, by taking fybogel and All Bran high fibre cereal. I take citicoline 250mg, and Manuka honey to kill infections. I believe the curcumin high level has done the most good. Yesterday, I dug a tree stump out and worked 4 hours in the garden, so I am not just sitting around.
One problem is dyskinesia, even 50 mg is enough to set me flailing around. I seem very sensitive to sinemet now. When I go to the dentist, I have to go unmedicated, at least no sinemet, I do take 1mg of Mirapex per day.
I would be interested to hear if anyone else has tried such high levels of curcumin. I should warn it is not an instant fix, it seems to take many weeks before it takes effect. My PD is still progressing, I am not good on my feet now, but not bad for 17 years since diagnosis.
Ron
Just editing to add another paper on curcumin.
http://www.emaxhealth.com/1020/19/29...-turmeric.html
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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 03-09-2009, 03:01 AM #12
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Default Sinemet

Rick,
As you know, I started experimenting with reduced levels of sinemet over a year ago, but even then I was on 2000mg curcumin. What difference doubling up to 4,000mg will make will take time to find out, its effect is not instantaneous, but seems to build up over time.
Ron
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Old 03-10-2009, 05:42 PM #13
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Default Found that on HP-200 dose

The natural occurrence of antiparkinsonian drugs in plants--anticholinergics in Datura stramonium, levodopa in Mucuna pruriens and Vicia faba, dopamine agonist activity in Claviceps purpura, and MAO inhibitor activity in Banisteria caapi-are known. Our study examined the efficacy and tolerability of HP-200, derived from Mucuna prurient, in patients with Parkinson's disease. Sixty patients with Parkinson's disease (46 male and 14 female) with a mean (+/- SD) age of 59 +/- 9 years were treated in an open study for 12 weeks. Of these, 26 patients were taking synthetic levodopa/carbidopa formulations before treatment with HP-200, and the remaining 34 were levodopa naive. HP-200, a powder (supplied as a 7.5 g sachet), was mixed with water and given orally. The Unified Parkinson's Disease Rating Scale (UPDRS) was used at baseline and periodically during the 12-week evaluation. Statistically significant reductions in Hoehn and Yahr stage and UPDRS scores were seen from baseline to the end of the 12-week treatment (p < 0.0001, t-test). The group mean (+/- SD) dose for optimal control of symptoms was 6 +/- 3 sachets. Adverse effects were mild and were mainly gastrointestinal in nature. No adverse effects were seen in clinical laboratory reports. HP-200, developed from an alternative medicine source, Ayurveda, was found to be an effective treatment for patients with Parkinson's disease ncbi.nlm.nih.gov/pubmed/15022157 .
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Old 03-10-2009, 06:14 PM #14
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Default Dopatone

Have any of you tried a dietary supplement called DOPATONE from Apex Energetics? This formula has
Vit B6,
Selenium,
phenylalanine
phenylethylamine
N-acetyl tyrosine
N acetyl cysterine
Blueberry extract
alpha lipoic acid
ANd
MUCUNA PRURIENS extract 300mg!

I am wondering what would be the equivalent of MP extract of 300mg in terms of 25/100 Percopa? A lot of you have experimented with MP and have posted it in here. I could look it up, but thought I would get the latest info from the PRos! also any experiences with dopatone or similar supplements?
Thanks!
Girija
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Old 03-10-2009, 06:55 PM #15
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Default Girija

The term "extract" makes it impossible to even try to equate with raw mucuna. Of the latter, I found that even 5 gr was too much. The studies using 30 gr are suspect.

There is something about MP that is highly promising but there is something a little scarey too. Comes on quicker than sinemet but when it goes the crash comes fast, less than five minutes, and deep.



Quote:
Originally Posted by girija View Post
Have any of you tried a dietary supplement called DOPATONE from Apex Energetics? This formula has
Vit B6,
Selenium,
phenylalanine
phenylethylamine
N-acetyl tyrosine
N acetyl cysterine
Blueberry extract
alpha lipoic acid
ANd
MUCUNA PRURIENS extract 300mg!

I am wondering what would be the equivalent of MP extract of 300mg in terms of 25/100 Percopa? A lot of you have experimented with MP and have posted it in here. I could look it up, but thought I would get the latest info from the PRos! also any experiences with dopatone or similar supplements?
Thanks!
Girija
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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 03-10-2009, 07:08 PM #16
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Default

Thanks Rick,
Its good know what MP can do before I try.
So, when you did your MP experiments you tried upto 5mg? What was your optimal dose and how long did it work?

This supplement is not anything special or specific for PWPs. Just a general thing anyone can buy from a health store. I cannot believe people without PD needing it and using it!

Girija









QUOTE=reverett123;478986]The term "extract" makes it impossible to even try to equate with raw mucuna. Of the latter, I found that even 5 gr was too much. The studies using 30 gr are suspect.

There is something about MP that is highly promising but there is something a little scarey too. Comes on quicker than sinemet but when it goes the crash comes fast, less than five minutes, and deep.[/QUOTE]
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Old 03-10-2009, 09:58 PM #17
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Default not exactly

No, going by the published studies, I started out about 30 gr and was OK the first day or so, but, as I recall, titrated back pretty quickly. I'm a little foggy on the details so you might want to retrace the thread. One thing I do remember was that I developed a suspicion that my regular meds were losing their efficacy and, combined with MP's sudden offs, it seemed too chancey. However, it is very useful as a "rescue" tool and I would try it if I were not already on sinemet.

Some questions I have about MP-
The assumption is that it is supplying extra dopamine to the brain, but I'm not so sure. For one thing, this has been a matter of faith and has no research that I know of behind it. Agreed that MP contains ldopa, but so does sinemet and their actions are quite different. Also, I know of no evidence that MP contains a decarboxilayse(sp?) inhibitor and if not how does it get into the brain?

My suspicions are that something else in its complex chemistry is working by way of the receptors rather than by increasing the dopamine. That is just instinct but it might explain why the other medications seemed in jeopardy if the receptors used were the same. It might also explain the speed and depth of the "off" if some sort of threshold was crossed suddenly.

The supplement you mentioned does have some good ingredients for PD, but I would be tempted to take the individual ingredients so they could be adjusted independently. And anyone taking an MAOI should be doubly careful. Those are nasty critters anyway and seem to interact badly with a lot of other drugs.


Quote:
Originally Posted by girija View Post
Thanks Rick,
Its good know what MP can do before I try.
So, when you did your MP experiments you tried upto 5mg? What was your optimal dose and how long did it work?

This supplement is not anything special or specific for PWPs. Just a general thing anyone can buy from a health store. I cannot believe people without PD needing it and using it!

Girija









QUOTE=reverett123;478986]The term "extract" makes it impossible to even try to equate with raw mucuna. Of the latter, I found that even 5 gr was too much. The studies using 30 gr are suspect.

There is something about MP that is highly promising but there is something a little scarey too. Comes on quicker than sinemet but when it goes the crash comes fast, less than five minutes, and deep.
[/QUOTE]
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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 03-12-2009, 03:14 PM #18
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Default Try out

Suffering symptoms from 2 years only and against regular medication (as much as I'll be able to stand it

I started taking mucuna last Sunday and the effect is quite amazing.

I take 1 doses of 7.5g HP-200 every 3h30 allowing me to get over the working day.

The first dose at 8:30/9:00 is good, improving my stamina, clearing my head and helping motor wise. The tremors are lessened, but don't fully disappear.
The second dose is around 11:30 and it is even better, all the effect mentioned before but stronger.
The afternoon take at 4pm might be a bit late, I start to go down before that and I had some strange headache (but that could be due to my recently hurting back) + some heat rush in my face and some facial rigidity.
The evening is without anything, just one or two glasses of wines, but on the overall, for now (it's been only 4 days) even in the evening the improvement is noticeable.
I have to say that around 7pm, I have a little feeling of stress for a second, but I can get over it for now.

I tried to find a neuro willing to go along that road with me for supervision, but strangely enough they are not keen on changing their weapon kit. I'll stick to my gastro friend and will monitor all blood signals as much as possible.

Rick, when you say you got down to 5g, was it per take or per day? Was it HP 200 or some other provider?

Thanks for sharing
Wishing you the best

Damsee
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Old 03-12-2009, 03:39 PM #19
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Default Damsee

Thank you very much for the feedback. I was meaning per dose but I was trying to replace a lot of sinemet and requip. It will be very interesting to share your journey as you are the first I have known "de novo". Levodopa is a two edged sword and best avoided if possible. No one knows if MP is or not. Keep good records for yourself.


Quote:
Originally Posted by Damsee View Post
Suffering symptoms from 2 years only and against regular medication (as much as I'll be able to stand it

I started taking mucuna last Sunday and the effect is quite amazing.

I take 1 doses of 7.5g HP-200 every 3h30 allowing me to get over the working day.

The first dose at 8:30/9:00 is good, improving my stamina, clearing my head and helping motor wise. The tremors are lessened, but don't fully disappear.
The second dose is around 11:30 and it is even better, all the effect mentioned before but stronger.
The afternoon take at 4pm might be a bit late, I start to go down before that and I had some strange headache (but that could be due to my recently hurting back) + some heat rush in my face and some facial rigidity.
The evening is without anything, just one or two glasses of wines, but on the overall, for now (it's been only 4 days) even in the evening the improvement is noticeable.
I have to say that around 7pm, I have a little feeling of stress for a second, but I can get over it for now.

I tried to find a neuro willing to go along that road with me for supervision, but strangely enough they are not keen on changing their weapon kit. I'll stick to my gastro friend and will monitor all blood signals as much as possible.

Rick, when you say you got down to 5g, was it per take or per day? Was it HP 200 or some other provider?

Thanks for sharing
Wishing you the best

Damsee
__________________
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 03-12-2009, 03:56 PM #20
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Default :)

I'll keep good records for me and for the other's

What do you mean "de novo"? From the start?

In your experience, would you rather go to Mirapex or Requip (the former being the one supposed to go better along with tremors which is my main concern for now) before strating to go for Mucuna?

One thing I posted recently and that disappeared strangely enough is the need to have some global web place for personal effect/counter-effects of all experiments we make on ourselves.
i'm thinking about a web site that would collect all the stats/records of each one's experiments with plants/vitamins/medicines/molecules and allow us to better decide based on other's experiences and global stats.
What would you thing about that?

I'll keep you posted
Cheers

Damsee
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