Parkinson's Disease Tulip


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Old 10-01-2017, 11:20 AM #11
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Thanks very much! I will give it a try. Very helpful.
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Old 10-01-2017, 11:53 AM #12
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Quote:
Originally Posted by moondaughter View Post
Hi John , Meandpd and soccertese, Hercules et al,

This is very very interesting to me and I am experimenting too.

I find that if i take too much mucuna in the morning my stomach wont tolerate any food taken within 30 minutes of the first dose...so now my breakfast time is after taking first and/or 2nd dose of med which is probably a good thing as I hear that fat in the liver is metabolized with a fast between 6 pm to 12 noon.

If I wait till tremor and stiffness set in to take next dose sometimes I have to wait quite a while for dose of med to metabolize up to an hour. I have had better luck just dosing according to a 2 to 2 and one half hour schedule...and protein doesn't always seem to bother it (perhaps a blood type issue? I'm O- )......but possibly the half and half (with my fresh nectarines) does? (Please don't let it be the nectarines.....tho I do love whip cream .....
) also I notice taking an effervescent form of vitamin C with small quantity B6 and vitamin E sometimes helps to activate the med...basically i'm struggling with consistency but necessity is becoming more an issue commanding me to pay closer attention and to discipline myself more carefully. Also I notice I do generally better in the Spring time.....making sense of the various cycles requires a lot of attention that seems to come very naturally to you! I notice my appetite changes also with the seasons as well as sleep patterns (which are sensitive to moon cycles!) which also may impact how med dosing goes as it seems I do better (med activates faster and smoother) following a good nights' sleep.

My med regimen is just one half pill of 10/100 sinemet and a 100mg LD capsule of mucuna...several times /day Do you notice you use up the first morning dose faster? and I'm thinking i could possibly experiment with taking just mucuna for 2nd dose though in the past have not been succesful with that. Also, i'd love to find a specific variety of cannabis that could possibly replace the sinemet...tried CBD oil (no THC)...find it great for strains and bumps from falls but not for bradykinesia and proprioception deficit. sigh...

Thanks for your posts and great thread too! any suggestions welcome...
Kind Regards,
Moondaughter
i apologize moondaughter if this reply offends you, just trying to help. i haven't taken the time to read your old posts to see how l-dopa affects you so why the 10/100 pill rather than the 25/100 carbidopa/levodopa? i've read a number of posters who take C/L with mucana mainly to get the carbidopa so the l-dopa from the mucana lasts longer, the carbidopa is just as important as the l-dopa. one other thing which i bring up is if you can't tolerate the 25/100 have you tried a different generic? i loved the TEVA generic which you can't get anymore and switched to the mylan generic, not many choices left. i think this is the same formulation as brand SINEMET, pill looks identical except sinemet isn't scored and the mylan is scored and MYLAN as far as i can tell makes SINEMET.

keep in mind that as far as eating reducing the affect of C/L, you want to have the fastest gastric emptying as possible since L-DOPA is converted by enzymes in the stomach, have to look up the enzyme and the end product, so the longer it stays in your stomach the less gets to your small intestine. so if you take C/L with any food in your stomach, even foods with little protein, it is going to slow down getting C/L out of your stomach. if you eat say more than 4grams of protein then you may not get any affect from the C/L, and you may want to take 50mg sooner, if that doesn't get you on in 45min then take another 50mg, i'm not a doctor but that's what i do if i really need to get going, i also have to check my BP when taking extra C/L.

after 14 years i still just take C/L and .75mg total generic mirapex which is sub-therapeutic but it seems to have no major side affects and my OFF condition is slightly less OFF. I do take 50/200CR and in that case you want to slow gastric emptying so i'll take it with half an apple or something else with low protein and a FISH OIL capsule if i remember since fat slows gastric emptying. so my first dose is 100 to 150mg C/L, after an hour i take 50mg of regular C/L + 50/200CR. it take 90min for the CR to start kicking in so the 50mg of C/L is needed for me at least to keep me ON for 90 more minutes. This is pretty predictable as long as i haven't eaten anything. After 90minutes i'll have a bowl of oatmeal, 1/2cup dry, and some fruit. the CR will give me 2.5-3hrs, and i repeat the pattern, regular C/L followed by CR, i have found that taking CR twice in a row can occasionally result in too much L-DOPA since food actually extends how long it can last so it can be unpredictable. most people would think i'm crazy following this dosage regime, maybe i am. i keep planning on trying mucana, just lazy i guess. so not knocking mucana as an adjunct and just wanted to describe what i do if it might give you some ideas. and suffice it to say i get most of my calories/protein at night.

i will say this about carbidopa, a study was done a few years ago where i think the amount of carbidopa was increased at least 100%, maybe it was 400%, to see if there was a chance high doses could penetrate the BBB, and the result was no, patients tolerated it ok and had tiny improvement in their pd symptoms. and without carbidopa we'd be taking 1gram pills of L-DOPA and we just wouldn't take it due to side affects - extreme nausea - and cost.
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Old 10-02-2017, 08:21 PM #13
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A recent post on the SoPD blog contains a good overview (IMHO) of mucuna pruriens. It seems that there is some evidence to support a possible anti-dyskinetic element.

Plan B: Itchy velvet beans – Mucuna pruriens | The Science of Parkinson's disease
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Old 10-03-2017, 12:24 PM #14
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Default Less can be more!

Quote:
Originally Posted by soccertese View Post
i apologize moondaughter if this reply offends you, just trying to help. i haven't taken the time to read your old posts to see how l-dopa affects you so why the 10/100 pill rather than the 25/100 carbidopa/levodopa? i've read a number of posters who take C/L with mucana mainly to get the carbidopa so the l-dopa from the mucana lasts longer, the carbidopa is just as important as the l-dopa. one other thing which i bring up is if you can't tolerate the 25/100 have you tried a different generic? i loved the TEVA generic which you can't get anymore and switched to the mylan generic, not many choices left. i think this is the same formulation as brand SINEMET, pill looks identical except sinemet isn't scored and the mylan is scored and MYLAN as far as i can tell makes SINEMET.

keep in mind that as far as eating reducing the affect of C/L, you want to have the fastest gastric emptying as possible since L-DOPA is converted by enzymes in the stomach, have to look up the enzyme and the end product, so the longer it stays in your stomach the less gets to your small intestine. so if you take C/L with any food in your stomach, even foods with little protein, it is going to slow down getting C/L out of your stomach. if you eat say more than 4grams of protein then you may not get any affect from the C/L, and you may want to take 50mg sooner, if that doesn't get you on in 45min then take another 50mg, i'm not a doctor but that's what i do if i really need to get going, i also have to check my BP when taking extra C/L.

after 14 years i still just take C/L and .75mg total generic mirapex which is sub-therapeutic but it seems to have no major side affects and my OFF condition is slightly less OFF. I do take 50/200CR and in that case you want to slow gastric emptying so i'll take it with half an apple or something else with low protein and a FISH OIL capsule if i remember since fat slows gastric emptying. so my first dose is 100 to 150mg C/L, after an hour i take 50mg of regular C/L + 50/200CR. it take 90min for the CR to start kicking in so the 50mg of C/L is needed for me at least to keep me ON for 90 more minutes. This is pretty predictable as long as i haven't eaten anything. After 90minutes i'll have a bowl of oatmeal, 1/2cup dry, and some fruit. the CR will give me 2.5-3hrs, and i repeat the pattern, regular C/L followed by CR, i have found that taking CR twice in a row can occasionally result in too much L-DOPA since food actually extends how long it can last so it can be unpredictable. most people would think i'm crazy following this dosage regime, maybe i am. i keep planning on trying mucana, just lazy i guess. so not knocking mucana as an adjunct and just wanted to describe what i do if it might give you some ideas. and suffice it to say i get most of my calories/protein at night.

i will say this about carbidopa, a study was done a few years ago where i think the amount of carbidopa was increased at least 100%, maybe it was 400%, to see if there was a chance high doses could penetrate the BBB, and the result was no, patients tolerated it ok and had tiny improvement in their pd symptoms. and without carbidopa we'd be taking 1gram pills of L-DOPA and we just wouldn't take it due to side affects - extreme nausea - and cost.

Thanks so much for your thoughtful reply Soccertese.....Managing C/L in/up take with gastric emptying speed is a juggling effort for me too.... I'm so glad you have found some consistency from your regimen....I find my dietary needs/responses seem to change with the seasons....and who knows what else....Why is it that food and supplements can provide a positive effect for awhile.. then lose their effectiveness?

I used to take 6 doses of 25/100 generic sinemet but reached a point where it was becoming less and less effective so I revisited mucuna. I had tried mucuna years earlier (w and w/o straight carbidopa) and didn't like it but for whatever reason my body does really well with it now . If I take mucuna with just carbidopa I don't feel it..so it seems there is something about the LD in the sinemet that catalyzes the LD in mucuna ?

I am always looking for opportunity to decrease sinemet and when I found that I could get a positive response with 10/100 I was really happy...no need to take more .

Recently in the news there has been talk of microdosing cannabis/marijuana .....that very small doses increase focus and energy and overall have an antiaging effect in older people where as large doses cqn have the opposite in younger people... Why Microdosing Is Taking Over Medical Marijuana - Rolling Stone

I think the same could apply to parkinsons med intake..that less can be more...but I think in order to achieve this one has to be very judicious and take only what is needed...(and, at the risk of what might appear as a contradiction )which, at times, IS more ... otherwise you become addicted ( which scrambles the messages in a negative feedback loop) ... I take this approach in an effort to listen to my bodys' intelligent signalling.

will note your observation of generic brands...

With Kind Regards,
MD
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Last edited by moondaughter; 10-03-2017 at 12:51 PM.
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Old 10-03-2017, 07:39 PM #15
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moondaughter, i assume eventually we lose the ability to convert l-dopa to dopamine in our brains but the success of intravenous l-dopa via a patch pump and duodopa delivered l-dopa sows that this is a much more complicated situation. if inhaled l-dopa ever gets approved it will be interesting to see if bypassing the gastric system can give a consistent ON and can be a tool in investigating if you have digestive system problems, remember the heliobacter bacteria claims. ON'S seem be more consistant in advanced pd'ers with IV and intestinal (duodopa) delivery. the patch pump product hasn't reached the market yet, i think.
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Old 10-14-2017, 09:27 PM #16
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Default tap test good indicator for testing effects of various foods and supplement for PWP?

Quote:
Originally Posted by johnt View Post
MeAndPD,

You may be interested in an app that I've written:

Parkinson's Disease Measurement: PwP, surveys, trials, analysis

You input details (time, size, drug) of each dose that you take in a day, and using pharmacokinetic parameters it draws a graph showing how your levodopa equivalent levels change minute by minute during the day. (Unfortunately it doesn't, as yet, deal with the Neupro patch.)

You can reduce the spikes by:
- taking more, but smaller doses;
- taking meds with a longer half-life;
- using meds with continuous delivery, e.g. the patch;
- timing your doses;
- basing your dosing on need, not time.
- combining with food, but not protein.

Regarding my own daily regimen, I have strong foundations of drugs which have limited variability (8mg ropinirole CR, 1mg rasagiline). Then I have five 75mg Stalevo to take as required. Often I take fewer, rarely I take more. The trick is to read your body so that you take the medication before it's needed, but in time to come on stream when it's required. For me, basing this on tremor and stiffness seems to work. (I'm trying to develop an automated decision making system, but progress is slow.)

I'm no doctor, but the limitations on the QOL that you describe seem to me to make a good case for increasing your daily dose.

John

Dear JohnT,

Have you experimented with tap testing combinations of food and supplements ( taken
WITH/or before or after) the meds such as circumin , magnesium etc etc? Seems to me this could be helpful for testing increased dopamine levels resulting from these in combination with med regimen, depending how subtle of a signal that would be picked up - timing too. Sort of like biokinesiology (commonly referred to as "muscle testing") but specific to dopamine levels instead of an overall strengthening/weakening response.

MD
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Last edited by moondaughter; 10-15-2017 at 07:55 AM.
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