[QUOTE=reverett123;757274]I had intended to wait another month before posting on this one, but the group could use a little positive push right now, so I'm going ahead.

A month ago, I had a problem. I was losing the use of my legs. It was most noticeable at night. If I tried to get out of bed the muscles went into tetany and would not function. I was pretty maxxed out on meds. 24 mg of requip plus about 1500 mg of sinemet total in both forms. As Laura mentioned, I have been dealing with some unusual problems for a year now and it was taking that much medication to make it through. Taking something every two hours. Having to hit the bed by 8:00 PM just to avoid crawling or, worse, a total lockup. /QUOTE]

Today I did pretty well with the following-
8 AM- 1x Sinemet 10/100 plus 1X Sinemet CR 50/200
10 AM- Repeat above
Noon- 1x Sin 10/100 plus 1/2 of a Sinemet CR 50/200 (or 100 net)
2 PM- Forgot to take anything
3 PM Took 1x Sinemet 10/100
4 PM- 1x Sinimet 10/100 plus 1x Sinemet CR 50/200 plus 1x Qu 400 mg
6 PM - Repeat 4 PM dose

That should do me for today. 1200 mg of sinmet. No requip although I will probably take 4 mg before bed to fend off RLS. Bed around 9 or 10.

Also, spent much of the afternoon working in the garden under sun in the 80s.

More intriguing, the last few days I have been feeling better. More hopeful Also, my GI tract is continuing to do better. And yesterday morning, for the first time in ages, I smelled coffee from the opposite side of the house!

Finally, never one to sit still, yesterday I decided to double the saw palmetto and silymarin that I had already been taking. Not good science, I fear, but my prostate is the boss of the former and my liver the boss of the latter. Scullcap is unchanged.

I had constant DK at 500 mg of levo/carb a day. And total brick mode when off.

Hi Peg,
Yes, I know Stavelo contains levodopa. I take 3 to 4 Stavelo 12.5carbidopa/50mg levodopa and 200mg entacapone. So the total levodopa I am taking per day is 150 to 200mg. The toxin has a very long half life, so it will probably build up in your system.

Rick, How do you know Requip gives you more dyskinesia than levodopa? When you are taking 1200mg levodopa per day, you will always have it in your system. You would have to clear your system for a day or 2 then take only Requip to see if it gave you dyskinesia. To complicate matters, as I mentioned, the toxin which I suspect is causing dyskinesia, builds up in your system, and would take some time to clear.
Ron

Peggy, and all,
Is there some confusion about dystonia and dyskinesia? I am asking those who know, as some medical descriptions do not give a clear picture, and in fact when reading them the descriptions sometimes seem interchangeable, and sometimes describe two clearly distinguishable states.

The reason I am asking is that I have successfully avoided, I thought till recently, the much feared dyskinesia, though I have always had dystonia as a feature of my PD. A few months ago I started to have abnormal movements, especially when doing more or out walking. Among these movements were ones I recognised from other people that I know personally. And it made me very fearful that I was entering a new stage. At the same time I was waking feeling significantly worse, and noticed that I was having a lot more problems turning over in bed, getting out of chairs, and with very significant and increasing lower back pain on wearing off.

Very reluctantly I increased my a.m. dose and added a half sinemet onto my night time regime. I was expecting the abnormal movements to increase, and they didn't, instead they disappeared. Leaving me puzzled...... but feeling somewhat better, with the exception of a return of sleep issues.....

So I hear what Ron says about dyskinesia only being caused by meds, but I am also wondering about what Peggy describes and is raising about it being a part of PD.

I've always been on low dose and always on sinemet only. Never taken agonists. And through the great advice on this forum I've always aimed for a slow steady intake of l-dopa. Which means dividing pills and not increasing overall intake unless absolutely neccessary.

The interesting thing for me was that those movements were new, not something I had before, and that a small increase made them go away.......
And I thought I knew what was dystonia is, and that dyskinesia MUST be this new and different stuff....

I thought I understood this thing, but clearly I don't!

So my question is to all of you who are experiencing dyskinesias, is where from the patient perspective is a way of knowing? At the moment I am veering towards dystonia as an end of dose thing, and dyskinesia as a peak dose thing, rather than looking at the actual quality of the movement and discomfort. And I know I may be very very wrong in my thinking. But I WOULD like to understand this thing. And why some of us get such dramatic and negative results from l-dopa and some of us go a long way on a little.....

This probably needs a new thread, but Peggy's comments made me think....
Apologies, Rick, as it is not quercetin related, but I do want to try that soon, and the fermented papaya too, as they both sound as though they have a potential that I have not seen in some of the other supplements.....

Since my DBS, I have cut meds in half and no DK. Still experimenting while fine tuning my stimulator and if I take 1/2 levo/carb more, the DK start. So I really suspect the levo/carb is causing them.

Lindy, have you ever watched M. J. Fox at his worse, when he is having involuntary movement, that's how I was prior to DBS.

The only other PD meds I take is amantadine.

First, from 10/07/2010 Boston Globe
Scientists report new target for therapy in Parkinson's disease
"...An international consortium of scientists seeking the underpinnings of Parkinson's disease have found that genes involved in energy production go awry in brain cells, suggesting a new target for therapies....The sets of genes the scientists identified led them back to a master regulator gene called PGC-1 alpha. When they made that gene go into overdrive in neurons in a dish, they found it had a protective effect in models of Parkinson's disease. ..."

Second-

1. Med Sci (Paris). 2007 Oct;23(10):840-4.

[SIRT1/PGC-1: a neuroprotective axis?].

[Article in French]

Rasouri S, Lagouge M, Auwerx J.

Institut de Génétique et de Biologie Moléculaire et Cellulaire, CNRS/Inserm/ULP,
1, rue Laurent Fries, 67404 Illkirch, France.

Neurodegenerative diseases are more and more prevalent in our aging societies. A
rapid overview of the etiology of many neurodegenerative diseases like Alzheimer,
Parkinson, Huntington disease and amyotrophic lateral sclerosis suggests a tight
link with mitochondrial dysfunction. Since it has been recently demonstrated that
activation of the SIRT1/PGC-1 pathway, in a metabolic context promotes
mitochondrial function, we performed a detailed literature review on the
implication of this pathway in neurodegeneration. Interestingly, transgenic mice
with impaired PGC-1 expression have neurodegenerative lesions and show
behavioural abnormalities. As evidenced from independent investigations, enhanced
SIRT1 activity has been demonstrated to protect against axonal degeneration and
to decrease the accumulation of amyloid beta peptides, the hallmark of Alzheimer
disease, in cultured murine embryonic neurons. In addition, several studies
suggest that resveratrol, a specific activator of SIRT1, could have protective
effects in animal models of neurodegenerative diseases. Taken together, these
results strongly suggest that the modulation of the SIRT1/PGC-1 pathway, which
has not been well documented in the central nervous system, could become the
cornerstone for new therapeutical approaches to combat neurodegeneration.


PMID: 17937892 [PubMed - indexed for MEDLINE]


Third-
From the American Journal of Physiology, April 2009
Quercetin increases brain and muscle mitochondrial biogenesis and exercise tolerance
"...Quercetin is one of a broad group of natural polyphenolic flavonoid substances that are being investigated for their widespread health benefits. These benefits have generally been ascribed to its combination of antioxidant and anti-inflammatory activity, but recent in vitro evidence suggests that improved mitochondrial biogenesis could play an important role....Quercetin increased mRNA expression of PGC-1α and SIRT1 (P < 0.05), mtDNA (P < 0.05) and cytochrome c concentration (P < 0.05). These changes in markers of mitochondrial biogenesis were associated with an increase in both maximal endurance capacity (P < 0.05) and voluntary wheel-running activity (P < 0.05). These benefits of querectin on fitness without exercise training may have important implications for enhancement of athletic and military performance and may also extend to prevention and/or treatment of chronic diseases. ...Our data indicate that PGC-1α and SIRT1 expression are increased significantly in both skeletal muscle and brain following just 7 days of quercetin feedings. ....The practical importance of this discovery lies in the fact that, unlike other flavonoids, like resveratrol, being studied for their benefits to health and performance, the plant source of quercetin is relatively inexpensive to grow and harvest, and the purification of quercetin is straightforward. It has also been shown to be safe and effective at relatively low dosages (e.g., 500–1000 mg/day) (10, 30). If these results translate clinically, these benefits of querectin may have important implications for enhancement of athletic and military performance. It is also intriguing to consider the possible relevance of these benefits of quercetin on various chronic diseases like cardiovascular, metabolic (e.g., type 2 diabetes), and neurodegenerative diseases in which physical inactivity and mitochondrial dysfunction are hallmarks. "
(Note: This third reference is one hell of an encouraging paper and I urge you to read it.)

Yes it is a tragedy that we have been stuck to dopamine replacement therapy for 50 years in spite of it’s obvious limitations and failures.
Recent research points to alternative routs such as GABA enhancement, curing mitochondria failure and targeting gene expression. Every day of delay in reaching the goal of real medicine means more suffering to PD patients and more multimillions $$$ of undeserved gains by the l-dopa industry.
With so many conspiracy theories dealt with by the media, I will not be surprised to find another one which may be called : The L-dopa scam !

Imad

we are not money makers if they perfect our treatments. we are money makers and guinea pigs if they keep expanding recommendations for dbs and gene therapy. see my new thread will make it now and let me know what you think of this guy. My neuro told me about him and BLIO for book publishing.

Thank you Rick. It has so much to say in a relatively plain way. And as a bonus, it confirms the benifits of exercise.
Imad

Hi,

I read your thread with great interest and was wondering if you can share if the quercetin is still working for you and what dosage are you still taking if it si still effective. Thx!