Parkinson's Disease Tulip


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Old 02-27-2007, 12:03 AM #1
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Default

Quote:
Originally Posted by caya View Post
Steve:

Excuse my ignorance but I have been out-of-pocket for a while. What is it that you are doing to have such a great improvement in symptoms???? Are you taking the DM that the folks have been discussing? If so, how much are you taking each day. Congratulations on your good feeling these days.

Caya
A half teaspoon of CVS brand maximum strength tussin cough syrup (15 mg per teaspoon) dextromethorphan every night before bed
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Old 02-26-2007, 11:54 PM #2
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Default Stress question

Quote:
Originally Posted by Thelma View Post
Everstt

Are you thinkilng the setative effect contains the stress they seem to indicate is relaxed a bit.

Thanks Thelma
Thelma-

Stress is a major player (perhaps THE major player) in PD deriving from our imbalanced neuroendocrine system and our screwed up cortisol levels. They are typically high for PWP. More importantly, where a normal production cycle peaks in the morning to help us wake up and drops as much as 90% over the course of the day, PWP have a steady rate of production without the morning peak. Bottom line is we have chronically elevated levels.

And that isn't good. One of the obvious things is that hypercortisolism sets us up for systemic inflammation which, among other things, opens the BBB and lets in toxins such as the bacterial LPS i have mentioned earlier. The reaction of the microglia then leads to the destruction of the substantia nigra and so on.

We have never received a good answer from our docs as to just why we are so sensitive to stress. Shake at the drop of a hat. Why? The answer lies here and it may be a clue as to part of the action of the dextromethorphan. As RLSmi pointed out, femtomolar concentrations are pretty darned tiny. Not what one would expect as effective sedation for something as "weak" as DM. Something more is at work and this may be close to it.

Notice that Steve felt calm, not groggy or sedated or similar feelings. And he woke up feeling good, not hung over or anything.

Getting more interesting by the day. -Rick
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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 03-03-2007, 12:08 PM #3
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Default steve

You brought up a good point about the psychological risks of habituation for those of us with the right personalities. The taste and the fact that it is a liquid, etc. When I was at CVS yesterday I also picked up the gel cap form as well for portability. You would lose the dose control (they're 15 mg) but it is a possibility to remember. Thank gawd you can't smoke it. ...can you?
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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 03-03-2007, 05:38 PM #4
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Default Opioid antagonists (DM) vs Mirapex?

Over the past week, all this discussion on DM has caused me to search the web for more info after I learned that DM and LDN are dopamine agonists as well as opioid agonists. According to the people who have done the research on DM and LDN (Dr's Bihari, Zagon, Hong), these drugs are neuro protective at very low doses, to use them at high doses negates their effectivness or worse.

My question is, would Mirapex at it's normal dosage override or defeat the low dose protection of DM or LDN since it is also a dopamine agonist? I did a search on "Pramipexole (mirapex) opioid antagonists" and did not come up with a match (that's good?) since I think DM and LDN work thru the opioid receptors for neuro protection. Since I take Mirapex, I wonder if it effects or negates the LDN I also take. If anyone works in this area, your comment would be appreciated.

As far as DM being addictive at only a half or one teaspoon a day, I'd be very surprised. I wouldn't think you'd feel a thing. In this case, a small dose is better then a big one.
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Old 03-03-2007, 06:06 PM #5
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Default A possible factor

I mentioned this question about DM and PD to Anne Frobert, the French MD and PWP who posted a few times on banding. She pointed out that levodopa has at least two effects. One is short term and helps us move. The other longterm one is dangerous and leaves us damaged.

It is possible that a similar dual action (thought hopefully with a better outcome) is at work here. What I mean is that the benefits that Steve is experiencing may be totally unrelated to what Robert is observing and I suppose that Dr. Hong could be looking at a third process. Short term symptom relief is something we can readily observe. Longterm effects, both good and bad, are beyond our capabilities to evaluate.

Something just wafted across my brain as I was thinking about the possibility of the higher dosage required for one negating the the other. There was something, and I think it was curcumin, that was effective at lower doses but lost some of its benefits as dosage increased. It might be acting on the same systems.
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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 03-04-2007, 01:36 AM #6
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Default Reverett

Hi Reverett,
Do you have a certain time when the one legged thingy is done?
The fluctuations in a PWP are many.... off, dyskinesic and of course on, a nice on.
What I'm getting at is how can you know its not the prescribed levodopa doing its job when you can stay on one leg longer but the cough syrup?
Regards,
Lee
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Old 03-04-2007, 08:21 AM #7
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Default one leg dancing

why, it's almost a zen koan

i do it in mid-afternoon when i am at my best. my goal is to detect change so the most important thing is consistency.

rick
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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 03-16-2007, 08:40 PM #8
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Default A word of caution

I'm still doing pretty well with the DM but had a rough day. Turned "off" three times. I blame it on having had a bad night's sleep but in casting about for other explanations I came across the fact that green tea is a weak MAO inhibitor. I don't think it is anything to be worried about but just be aware.
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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 03-16-2007, 09:16 PM #9
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Default Rick

As I mentioned I had slid backward a few paces this week..So last night I purposely didnt take my daily dose of DM, and today was the worse day Ive had since prior to taking DM..I had some trouble with movement, felt out of sorts like I did before taking DM..and when I have trouble with a task my body wants to try to compensate with body language, something that was new in the past few months, but disappeared when I started DM over 3 weeks ago..There are some disabilities that I revisited today that were gone while I took DM..So it seems to me when I have a bad day it would have been worse without DM..That is my judgement call for now

I wont go to bed without taking it tonight..thats for sure!
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Old 03-16-2007, 10:24 PM #10
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Default Good days, bad days.

Yesterday I had a not so good day. I was tired and my back hurt. Today I felt almost 'normal' all day, until dinner time, when the usual evening fatigue set in. Today I got up at 6, showered, dressed, and spent some time on the computer before I took my pills, and that not because I was off, but because I always take them with breakfast. The difference between yesterday and today is huge, and that is the nature of PD, with or without DM. We have good days and bad days, sometimes for no reason it seems. I think that no matter how much DM helps, we are still going to have days when PD gets the upper hand.

Courage, white rats, we're not giving in.

birte
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