Hi Brian,

Just wondering if anyone has replied to your note. I am 44 years old and was diagnosed with PD almost 15 years ago. I'm pretty sure that I do have Parkinson's (but still not 100% convinced), but the question no one has been able to answer over the years is why allergies (both seasonal and food) affect my symptoms so drastically. The Sinemet works well when for the most part, but if I happen to eat the wrong thing - fresh boiled corn-on-the-cob for example, I go immediately off.

Hope to hear from you,
Richard in Toronto

No, I haven't gotten a good reply to this. However, as you noted, I believe diet does effect the ability of Synemet to work in the system. You might have noticed in my letter I suggested that maybe I could be alergic to milk fat. This was not a random consideration selected specific for the example. I have noticed that (though I have rarely ever done this) when I took my synemet with a glass of milk, that it (the milk) would seem to cancel out the synemet almost completely, until I took another dose. Obviously, I don't take it with milk anymore, but I still drink milk. I'm back to square one on this. Sorry I couldnt be more helpful.

Hello again Brian,

Besides milk is there anything else you react to? To give you some insight into what I've been going through (and why your note piqued my interest) here is some info that I posted on another forum:
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Posted on Wed Nov 07, 2007....

Why is it that I experience stretches where my symptoms are so bad and so unbearable for weeks at a time? And during these stretches I can't seem to eat anything without reacting with extreme and uncontrollable tremors which can last several hours at a time. This occurs anywhere from one to three hours after I've eaten. No amount of medication can control these tremors. It's as if I have an allergic reaction to the food, but without typical type food allergy reactions of hives, shortness of breath, rashes, etc., but rather heightened/enhanced Parkinson's symptoms. And then all of a sudden - literally overnight - I am cured again: I can eat anything and any amount - high in protein or not, and have no reaction whatsoever. In fact the interval of my Sinemet doses all of a sudden becomes too short and I begin to suffer dyskinesias until I increase the duration between doses. Is this related to my digestive system and or stomach emptying? Are there exercises I can do to prevent the bad cycles? Laxatives? Unfortunately though the cure is short-lived as I return to the normal cyclical bad pattern again before too long. Is this type of pattern/cycle normal? Do other Parkinson's sufferers experience the same phenomenon?

Thank you,
Richard

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You have an interesting set of symptoms.

One thing you can do is speak to your doc about dosing meds one hour prior to meals.

Another thing I do in this situation is get a GI emptying study as often it is a gatric motility issue.
_________________
Michael S. Okun, M.D.

Posted: Mon Nov 12, 2007 4:09 pm Post subject:
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Thank you, I will suggest this... But if it was a gastric motility issue wouldn't my problems be more consistent, i.e. the same with all foods (or at least worse with those that take longer to digest)? These are the foods that cause the worst reaction (wild and uncontrollable tremors in the legs and feet): baking powder, banana, carrot, coconut, corn starch, glutens (ALL), MSG (MSG causes the worst and longest reaction of all), orange juice , parsley (common curly leaf, not flat leaf), peanuts, pecans, rice , salmon (in excess of 75 g), salt, soya sauce ... Calcium is also a big problem. Sometimes as little as 3 spoonfuls of yogurt (25% calcium) will trigger me (my legs and feet) to shake violently, wildly and uncontrollably for hours at a time. It begins 1-2 hours after ingestion. It is much, much worse than regular Parkinson’s tremors. No amount of Sinemet can control these seizures - I would describe it as ataxia (or what I interpret this word to mean). Whenever I ingest any of the above it's like my Sinemet all of a sudden stops working. The tremors in my feet and legs become so unbearable and it can last for several hours at a time. It's all I can do but hold my breath until it stops. It is so uncomfortable I just want to die (during these episodes). Is this a known problem with other Parkinson's sufferers? - the world renowned PD specialists at Toronto Western don't have an answer for me.

As far as the timing goes I take 1 200/50 mg Sinemet CR every 2 1/2 hours. I used to be on Requip too, but it didn't improve matters.

Thank you,
Richard

The upper part of my stomach, I call it mid-drift area shakes uncontrollably? This began about 6 weeks ago. I have been on 1 mg. Requip for 1 yr. for slight parkinsons steming from a tumor(small & non Cancerous) on my brain. Beside this I shake all over when I do anything, housework, and any and all activity?

I am taking Sinemet every 2 1/2 hours in conjunction with Tasmar (3 times per day). I have become more stable but still have stomach problem and loss of strength. It would seem that I go thru ups and downs with each cycle. Provided I do not anything which interpheres with the required delivery of the effects of the Sinemet, my stomach settles after the first 1/2 hour and I shift into high gear, until the last 1/2 hour when I need another dose. This fluxuation causes me a loss of continuous strength.

My new nuero specialist has prescribed Requip, but I had dropped Requip when I first started the new regiment some three months ago. I don't miss the side effects.

So, in my case, it all boils down to maintaining strength.

BTW, I never used "Dystonia" in connection to my problem before this post.