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03-02-2016, 09:28 AM | #1 | |||
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I am positing an idea or question to all of you students of the brain and body, who, together have a collective huge brain and storehouse of information that I respect.
Last week I was as sick as I have been in 10 years with what I believe was the flu. I got home after a busy day and started vomiting like I had food poisoning. Everything came out! The next 2 days I was very weak and nauseous and was only able to keep down ginger tea with a little honey and lemon. ( As an aside my son-in-law also was ill at the same time in a different local, but I’m pretty sure with the same thing) Because I was so sick and weak I only lay in bed, just getting up to use the bathroom. I continued to take my normal medication (1 tab of 25/100 tab of (carbidopa/levodopa) 4 x day. As I have been reducing my medication over this year, I ordinarily tremor often throughout the day at sporadic times and for varying lengths, especially at wear-off and an hour after taking it as it hits my system. Surprisingly, while I was in bed for those two days, I had almost NO TREMORS at all. It was a shocking and welcome difference. I also had time to think a little about this. I have experienced a lot of “sleep benefit” through the years which seems a little related. Why is there any variation in symptoms? If we are suffering from our bodies lack of dopamine producing cells…. Why is there such extreme variation? If we were missing our nose, we wouldn’t smell sometimes under certain circumstances. A friend with rheumatoid arthritis was saying that her doc said because RA is auto immune, when she had other bodily crises, including pregnancy, that the immune system was needed elsewhere and the RA symptoms would become of secondary importance for the immune system under duress. That makes sense. But we are operating under the assumption that we are missing something and replacing it with medication. Was my gut cleared out so thoroughly that some dopamine producing cells in my gut were more productive or accessible? Did it do something to the function of my vagus nerve? Do I need unlimited rest? There seems to be an implication that something else is at play than a simple depletion of dopamine in his crazy illness we have been wrestling with for a long time. I am back now almost a week later basically the same as I was before the illness (minus 5 lbs.) regarding the tremor I experience. Any ideas or theories? Has anyone else experienced this? I welcome any theories, there’s nothing to lose in thinking outside the box.
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VictoriaLou . |
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"Thanks for this!" says: | billybiffboffo (03-02-2016) |
03-02-2016, 09:56 AM | #2 | ||
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Magnate
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maybe with so little food intake you had more l-dopa was getting to your brain? less amino acids from your food competing with l-dopa to pass into your blood from the small intestine and into your brain? of course you could see if fasting during a day had the same result.
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"Thanks for this!" says: | billybiffboffo (03-02-2016), VICTORIALOU (03-02-2016) |
03-02-2016, 10:06 AM | #3 | |||
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I do eat eggs almost every morning so that's an excellent possibility. Thanks Soccertese.
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VictoriaLou . |
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03-02-2016, 10:28 AM | #4 | ||
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Junior Member
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I like the gut clearing theory. it seems I never get "really" sick anymore, even when everybody at work does. but I need 10 hours of sleep now, instead of the 6 I used to function well on. maybe I need to think auto-immune function.
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"Thanks for this!" says: | VICTORIALOU (03-03-2016) |
03-02-2016, 10:36 AM | #5 | ||
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Senior Member
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VictoriaLou,
Thanks for raising this topic. It is a set of circumstances that I can relate to. However, I think the key players are indeed levodopa and dopamine. I'm nearly 11 years post diagnosis, but still have a considerable amount of local (endogenous) dopamine being produced. I say this because just recently I went over 36 hours without drugs and could still function fairly well. Also, there are reservoirs (vesicles) of dopamine in surving neurons. When I've done my tap test experiments over the duration of a dose of Stalevo, I've found that the number of taps I can make in a given period when I'm optimally "on" is about twice the number I can do when I'm maximally "off". But, even when I'm off I'm still managing 30 taps (left and right hand combined, 30 seconds for each). For me to be maximally on for 24 hours would require about 1000mg of exogenous levodopa. This suggests that I am still producing about 1000mg levodopa equivalent per day. Or to put it another way, a normal person produces the equivalent of about 2000mg levodopa per day. See, http://neurotalk.psychcentral.com/thread183360.html I'm with soccertese, you were eating very little so weren't digesting much, a circumstance which seems to improve the effectiveness of your drugs (it goes beyond the protein effect). John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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"Thanks for this!" says: | VICTORIALOU (03-03-2016) |
03-02-2016, 11:08 AM | #6 | ||
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Magnate
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you may find this hard to believe but 1 egg eaten even 2 hours before taking my l-dopa negates part of the benefit. your brain doesn't need much dopamine, think about how little agonist one needs to take, in early pd 6mg of MIRAPEX a day will suffice and not all of that gets to the brain, not sure what percentage. so our brains really have to be messed up to not be able to make that tiny amount of dopamine and/or store it. LOL, food for thought. you can eat 2lb of steak with probably 1/4lb of dopamine pecursors and we don't have huge increase of dopamine in the brain. and just the opposite, people on long fasts don't develop pd symptoms as far as i know. what i find interesting is that continuous release systems like duodopa actually deliver more l-dopa than what is given orally and the patient has better symptom control and less dyskinesias than oral drug treatment. and the reduced dyskinisea benefit continues for a few days after the duodopa is discontinued. so when taking l-dopa you might get better symptom control during the day if you don't allow yourself to go off between doses. you might not like taking more l-dopa but if you can excercise more, be active more hours/day maybe you'll be better off overall. Last edited by soccertese; 03-02-2016 at 11:22 AM. Reason: changed "we have huge" to "we don't have huge" |
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"Thanks for this!" says: | eds195 (03-02-2016), VICTORIALOU (03-03-2016) |
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