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noah

protein and absorption

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I am really struggling here.   I am very sensitive to the effect of protein and medicine. I try to take my meds 1 hr before eating, for the most part it is doable. Supper and erly evening is a huge problem .  I am suppose to take some meds @  5 and then again @7. I have been eating dinner @ 5:45 ( I am 45 min away from when I took the meds and 1 hr before I have to take my next dose)

No matter how hard I try it doesnt work i end up off and then i am off for the rest of the night eventho i take sinemt @ 7

Does any one have any suggestions. I have to eat as it is I have lost 10 lb in the past few months.

I am at my wits end!!

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Can you maybe protein load earlier in the day and then eat something very low protein between 5 and 7?

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Unfortunately I think any of the controlled/extended release will be worse for you as they need as much or more separation.

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From what you wrote, it appears you are taking C/L every two hours throughout the day.  That is hard on meals.  Not sure if my alternatives will work for you but here are a few that quickly come to mind that have helped me: 

(1)  Probiotic supplements.  They seem to allow my body to digest and absorb more of my C/L throughout the day.  It's as if the C/L starts quicker, comes on stronger and lasts longer throughout the day (and night) without the bad side effects of actually taking larger doses.  Takes my body a few days to notice the change after I start the probiotic routine.  This was not the reason I started experimenting with probiotics, just a "side effect" I notice and can't really explain.  My MDS can't fully explain it either other than to say it is possibly the result of the as-of-yet unexplored connections between the digestive system and the brain; or the probiotics are somehow helping with the digestive problems that seem inherent in Parkinson's.  Either way, he wants the credit for helping me.

(2)  Read once where the FDA suggested that people only need 6 ounces of protein each day--probably less for people with Parkinson's whose bodies don't tolerate protein well, so like Stump suggested, (a) either load up on protein earlier in the day when there is a sufficient gap between medication cycles;  or (b) eat smaller, more frequent amounts of protein throughout the day.  (Five small fast meals instead of three large meals.) 

(3)  Delay taking your 7:00 p.m. dose of C/L until 7:30 p.m. so you can eat between 6:00 and 6:30 p.m.; also, drink orange juice when you do take that post-meal dose.  Even though some pharmacist came up with the name "Immediate Release," it always seems to take between 45 and 90-minutes for my doses to ramp up.  Not my definition of "Immediate."  Drinking orange juice with C/L seems to help me when I need "Immediate" relief by getting the pill dissolved, digested and into my system faster.  With orange juice, I can usually feel my body coming back "on" in about 15-minutes.  By combining orange juice with C/L, I can delay a dose by an hour, and yet get the same benefits faster than had I taken it earlier.  Yes, the body still continues the "off" slide, but it would anyway during those magical 45 to 90-minutes, so I figure "no great loss."

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Almost forgot the prescription drugs:

(4)  Entacapone helps extend the life of my C/L doses.  The C/L still wears off after about three-hours, but it's more like a slow turning rheostat knob dimming a light bulb rather than getting pushed off of a cliff.  It allows me to tolerate a 3.5-hour gap between doses.  The extended life makes finding a meal time that is one-hour before and one-hour after a dose of C/L easier for me.  Most of the time, the extension from Entacapone is also enough to get me through the night without having to sneak a middle of the night C/L pill. 

(5)  Amantadine also helps extend the C/L a bit, though it wasn't prescribed for that feature.

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I had a bad reaction, but most have better experiences with the MAO-B Inhibitors.  Have you tried any of them (e.g. Azilect)?  They are supposed to prolong the time the dopamine stays in your brain.  If you can tolerate them well that might give you the extra time between C/L doses to get the chance to eat normally.

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Noah:

I take one probiotic supplement tablet with 10 acidophilus strains and 25 billion active organisms, each day.

There’s little information about probiotics other than from the supplement manufacturers themselves, so read up on them first and ask your healthcare professionals about which is best for you.

Here are some links I found with useful information on what to look for in a supplement:

https://www.drdavidwilliams.com/how-to-choose-the-best-probiotic-supplement/

http://consumeradvisorguide.org/probiotics-supplement-review/index4.html

https://www.webmd.com/digestive-disorders/tc/probiotics-topic-overview

http://consumershealthreport.com/probiotic-supplements/bestprobiotics/

 

No, my MDS has no problems with me taking probiotics or other supplements that help.  In fact, he's one of the first to recognize the limitations and inherent ignorance of "western medicine" in healthcare, and takes a sort of whole-world-healthcare approach.

I took Azilect for a while.  Prescribed by a general neurologist before I saw my MDS.  When I met with my MDS he asked whether the Azilect helped. 

I said, "I can't tell if does anything."

My MDS said, "that pretty common among all of my Parkinson's patients.  You can stop taking it." 

I stopped and never noticed a change.

As for orange juice, I don't take C/L with it all of the time, just in emergencies.  Instead, because I need to drink lots of water each day, I drink one or two cups of water with my pills.  Helps me ensure that I get my minimum required 12-to-14 cups of water each day.

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