Nilo,
I have several suggestions: 1. Don't worry about the B6. The carbidopa in the
Sinemet will take care of it unless it is an extremely large amount. 2. You
probably don't need a dose at bedtime. 3. I would suggest one tablet when you
first get up in the morning, the one about a half hour before lunch, and the third
one about a half hour before dinner. You will soon know if it works. Believe me,
you will know. The diary is an excellent idea. I've recommended it to many, Make
sure you show it to your doctor. It will help. I wish you the best of health.
Dave Purdy
Nilo Sarmiento wrote:
> To all contributors to the listserv, thank you for the valuable
> service/support you have provided.
>
> On Tuesday, Feb. 27, 2001, I was "formally diagnosed" as having the
> symptons of PD. I say "formally," because I have had some symptoms for some
> time, but whenever I saw my neurologist, he was not sufficiently convinced
> that the symptoms were those of PD. Being 64 years old, going on 65, he
> felt that the symptoms could be those of old age (as brain cells die due to
> age, the resulting deterioration shows itself in the symptoms that could
> be associated with Parkinson's).
>
> Finally, my wife came with me, and told my doctor all her observations (she
> has done a lot of reading on PD, much more than I have!!).
>
> To make a long story short, the doctor prescribed sinemet the 25/100
> combination. His only directions were: take one tablet before a meal, three
> times a day. This was not the first time I had taken a prescription with
> such general directions. And it was not until I began to actually follow
> those directions that I found them to be too general. If there would be so
> many variations in the times of my meals, how could I measure the duration
> of their effect.
>
> From the literature that came with them. I learned that:
> 1. Sinemet works best when taken on an empty stomach;
> 2. Vitamin B6 interferes with the effectiveness of levodopa, when taken
> alone, but not when taken with carbidopa; and that some food have a good
> measure of B6 (bananas, egg yolk, meat, peanuts were specifically mentioned.)
>
> Re "three times daily before a meal," absent any prohibition to the
> contrary, and in light of the specific note that sinemet works best when
> taken on an empty stomach, I decided to divide the 24 hours into 3 segments
> of 8 hours each , and I figured that at least for now, 7 am, 3 pm, and 11
> pm were my pill time.
>
> Re food, I am a banana nut and a peanuts nut... but I decided to give
> sinimet (and me!) the benefit of the doubt,and give it every chance to
> work: From here on, no bananas and peanuts, even though they might be OK,
> because of carbidopa. No multi-vitamin which has much as 300% DR of B6.
> This is part of my effort to eliminate any element considered a potential
> levodopa interferent.
>
> I decided to start a diary, in an Excel spreadsheet format; and I am doing
> all this as part of my own research. The reason for the 3 segments of 8
> hours, is to find out how long the effect of each pill lasts, or if it even
> has any effect, positive or negative on any of the symptoms. I do not
> expect to see any noticeable improvement until at least a month on this
> regimen. But the only way to determine improvement is for me to make some
> detailed observations.
>
> As for my attitude, I have fully accepted the fact that I could have PD,
> and that I will need to work around it. As the Roman poet Horace would say:
> Fit patientia quicquid est corrigere nefas
> This is echoed by the Serenity Prayer, which I am sure most of us know by
> heart:
> God grant me:
> Serenity to accept the things I cannot change;
> Courage to change the things that I can; and
> Wisdom to know the difference.
>
> Here then are the hi-hlights of the first few days..
>
> February 27. Tuesday, I took the first pill just before lunch, and the
> second just before dinner around 7 pm.
>
> February 28, Wednesday, I had my first pill around 6:30 am, and realized
> that I did not have a pill for almost 12 hours. I was not satisfied with
> that imprecision and disparity in the length of time between the
> pills. That's when I decided to divide the 24 hours into 3 segments, each
> 8 hours long, and the times.
>
> March 1, Thursday, second day, took the pills within two minutes before or
> after my pill-time, and I wait for around half an hour before I take any
> food...to give the pill the chance to dissolve and be absorbed into my system.
>
> It is too soon to say, but I have not felt this good in the past month or
> so; so far, I have had none of the side effects, except what could be a
> "false sense of wellbeing" like what I just said. My urine is still "clear"
> or not as discolored as I had anticipated.
>
> Note to members of listserv..
>
> I do not know if any of you are keeping a similar diary; how are you
> keeping it , and if it has served your purpose. I had thought of keeping
> such diary, just for my own use; when I finally got diagnosed, I wanted to
> find out in what way i could make a contribution to the group. It occurred
> to me that sharing the highlights with all of you might help.
>
> And so, before I continue to share my own findings, on a day to day basis,
> I would appreciate any feedback, from you. If, for instance, you want to
> know what I mean by my keeping a diary in Excel format, let me know, and I
> shall attach a copy by next installment.
>
> Thanks.
>
> Nilo
