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06-18-2007, 02:46 PM | #11 | |||
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In Remembrance
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Still positive and becoming ever-so-slightly hopeful. I still go "off" at mid-day and at bedtime and usually freeze during these times. However, and it may well be my imagination, the last four have been a bit easier in respect to the freezing. And thus far today it is nearly 4:00 PM and I have not been off at all yet. First time in weeks.
I find that pairing ginseng with levodopa works well and the same with royal jelly and requip.
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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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06-19-2007, 06:52 PM | #12 | |||
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In Remembrance
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Today and yesterday I experienced no "Offs" until bedtme. That is the first instance in a month or more. During those times when I AM off, I continue to freeze less.
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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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07-07-2007, 08:09 AM | #13 | |||
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In Remembrance
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To quote Pink Floyd, "I do believe it's working! Good."
The "offs" and freezing are becoming almost rare. Turning in bed has become noticeably easier. Even when "off", freezing is less and walking easier. Bladder control almost a non-issue as well. This week I have begun the first cautious cutting back on my meds. I take the ginseng along with my meds but take my other supplements as a separate event. The more often I forget is a pretty good indicator of how I am doing. I have been "forgetting" quite a lot the last couple of weeks. Muscle tone is still improved. Fatigue almost non-existent. All this despite both heat and heavy stress. The Rev ain't going to preach.
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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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07-08-2007, 11:02 AM | #14 | |||
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In Remembrance
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I have realized that I have a pretty good comparison with my condition a year ago in the form of my memories of an extended visit with Ron Hutton almost a year to the day of starting this trial. Plus my journal gives me a med baseline as well.
Compared to a year ago I am taking slightly less medication and I am substantially better in symptomology. I'll give a more detailed report in a couple of weeks but I am more than encouraged.
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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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07-09-2007, 02:22 PM | #15 | |||
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In Remembrance
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Finally having a litle time I have been experimenting some and have discovered something interesting.
My current drug routine has been as follows: 7 AM- (2) Requip 4 mg ea // (1) Sinemet CR 25/200 // (1) Selegeline 5 mg 10 AM- (2) Requip 4 mg ea // (1) Sinemet CR 25/200 1 PM Same as 10 AM 4 PM Same again This usually does me until bedtime although the last couple of hours can be tough. However, I have been feeling over-medicated so thought I'd cut back a little yesterday (1st rat rule- Experiment on the weekends.) So I cut the Sinemet in half at the 1o AM and 1 PM feedings. I wasn't too surprised to find myself going off at 7 PM. Rather than take more meds that late, I instead tried another ginseng capsule < I had one at 7 AM and at 10 AM > to see what would happen. Much to my surprise, less than an hour later I was fully back on and stayed on until 11 PM or so. Now, today, I stuck to schedule with the 7 AM and 10 AM meds, but at 1 PM I took only one ginseng <again the third today>. It is now almost 3:30 and I am doing fine! I am going to see how long before I start to feel symptomatic but I should have been off two hours ago under previous conditions. So what is going on? More dopamine? More efficient receptors? Magic? I confess to being pleasantly perplexed.
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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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07-09-2007, 07:27 PM | #16 | ||
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Member
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Hi Rick,
Just wanted to say how pleased I am for you! Congratulations on the benefits of the fruits of your research! Well earned, Great White One! Truly, it's wonderful.... Ibby |
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07-10-2007, 08:49 AM | #17 | ||
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Junior Member
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Thank you for your persistence. I'm one more person who follows your efforts and believes their is much to be gained by them. I have little hope in new drug discoveries being a solution. There has to be a way to help our bodies cure themselves. Keep up the good work!
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07-11-2007, 09:24 PM | #18 | |||
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In Remembrance
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Ginseng definitely prolongs the action of my Sinemet - Requip meds. Doubles it in fact!
I discovered that if I don't take the meds and take one ginseng capsule instead, I am "off" about the six to seven hour mark. When I started this it was the two to three hour one. But I also found that the next day (yesteday) was more like old times and had a little "off" time at mid-day. and again today a lesser one. This leads me to think that I had built up a store of dopamine or a similar chemical that I drew down two days ago and which is now building back up. Another possibility is that I had managed to reduce the level of something and that it increased, but those are essentially the same thing. I am going to continue trying to reduce my meds. I am having some mild dyskinesias when I take my former doses but they seem to go away with lesser doses. Muscle tone remains much improved and even the two "Off" periods yesterday and today were milder than before with little freezing. Some links that explain this wonder drug: 1: J. Pharmacol. Sci. 2006 Mar;100(3):175-86. Epub 2006 Mar 4. Use of ginseng in medicine with emphasis on neurodegenerative disorders. Radad K, Gille G, Liu L, Rausch WD. Department of Pathology and Clinical Pathology, Faculty of Veterinary Medicine, Assiut University, Egypt. khaledradad@hotmail.com Ginseng, the root of Panax species, is a well-known herbal medicine. It has been used as a traditional medicine in China, Korea, and Japan for thousands of years and is now a popular and worldwide used natural medicine. The active ingredients of ginseng are ginsenosides which are also called ginseng saponins. Recently, there is increasing evidence in the literature on the pharmacological and physiological actions of ginseng. However, ginseng has been used primarily as a tonic to invigorate weak bodies and help the restoration of homeostasis. Current in vivo and in vitro studies have shown its beneficial effects in a wide range of pathological conditions such as cardiovascular diseases, cancer, immune deficiency, and hepatotoxicity. Moreover, recent research has suggested that some of ginseng's active ingredients also exert beneficial effects on aging, central nervous system (CNS) disorders, and neurodegenerative diseases. In general, antioxidant, anti-inflammatory, anti-apoptotic, and immune-stimulatory activities are mostly underlying the possible ginseng-mediated protective mechanisms. Next to animal studies, data from neural cell cultures contribute to the understanding of these mechanisms that involve decreasing nitric oxide (NO), scavenging of free radicals, and counteracting excitotoxicity. In this review, we focus on recently reported medicinal effects of ginseng and summarize the current knowledge of its effects on CNS disorders and neurodegenerative diseases. Publication Types: Review PMID: 16518078 [PubMed - indexed for MEDLINE] This one is available in full text and should be required reading.
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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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07-12-2007, 10:25 AM | #19 | ||
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Member
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Delighted to hear of your experiments and am reminded of some of the great scientists who experimented on themselves.I think the reason and cause of pellagra was found in this way and also the reason for low heart attack rates among the Inuit was found in this way.
I have one query:I notice you do not have Q10 among your supplements .Is there a reason for this?If you have mentioned in previous posts apologise in advance. |
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07-12-2007, 05:23 PM | #20 | |||
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In Remembrance
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Short answer- Too expensive and I think the a-lipoic acid and acetyl-l-carnitine have similar effect.
Put in 12 hours today, some in the heat, and still "on". The only drawback thus far is that I have to get a handle on dose schedules so that I skip the dyskinesias (never have got the spelling on that). Easy to take too much meds.
__________________
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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