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Old 04-15-2013, 02:28 PM
madamlash madamlash is offline
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Join Date: Feb 2010
Location: Southern California
Posts: 167
10 yr Member
madamlash madamlash is offline
Member
 
Join Date: Feb 2010
Location: Southern California
Posts: 167
10 yr Member
Default Thanks reverett123... I admire your white rat spirit

I always follow your posts with great interest. I would chew on old rat tails if someone could make a reasonable case for their therapeutic value. To be crushingly honest, you hit the nail on the head with your comments regarding my recent illness. It has given me a frighteningly up close and too personal look at how it feels to be really sick. I am going to insist on wearing my bitchy hard to sell hat and take whatever time is needed to do my due diligence. (my nom de plume was not of my choosing but rather was assigned by those who know me well)
Thank you!

Quote:
Originally Posted by reverett123 View Post
Madamlash-
I am sorry that you are having a rough time. While I have not had DBS, there are enough similarities between our conditions that I thought it might help. Like you, I was diagnosed 13 years ago. After trying a number of meds I, too, have cast my lot with carbidopa/levodopa, although at a higher dose than you. I am taking 2 x 200/50 every three hours (6,9,N,3,6 and sometimes 9 PM) and doing pretty well. I have been on this schedule about six months. Had some DK at first but dropped the dosage quickly to a level that gave some stability. For the most part I am functional most of the day with a vulnerable period in mid-afternoon that I am still working on.

I took this route because the requip had been a DK nightmare plus a desire to experiment that would bring in problems of polypharmacy. My neuro approved especially since he doesn't trust the agonists either. And c/l is an old med whose problems are well known.

I particularly relate to the blood pressure issue since my high end has at times reached the same scarey levels. I have been taking a beta blocker and an ACE inhibitor and have recently begun to slowly shift to magnesium and potassium with some success. I watch it closely particularly as I change things around.

I also watch my GI system. Slow action interfers with meds so I take ginger which is a big help. Constipation I address with senna an old herbal laxative.

I take turmeric because anything with that much good press has to have something going for it. It has kept Ron alive so it should help me too.

I am experimenting with creatine at low doses for muscle strength and beginning to exercise for blood sugar problems that come with sinemet. And a multi and a B-complex to round things out.

I have noted improvements in GI function, sleep quality, blood pressure, dependability of PD function, etc.

I take as much c/l as needed to minimize symptoms and I stay in bed until functional. This gives both my wife and myself a psychological boost that is of great value and it is safer as well.

Finally, I group things that conflict with c/l or that make me sleepy at bedtime. I don't eat until coming on and then start with protein (esp eggs) to keep blood sugar stable.

Sorry for so much detail but it seems appropriate.

Some things that stand out with you are the bout of the crud that you just had and are still recovering from. It can take months for healthy folk to get over that and your doc may be rushing things more than he should. And you are vulnerable and just want it to be over. But even if you opt for DBS you want your immune system running smoothly beforehand. Infection is still one of the problems. Do a search for "attenuate microglia" for ideas here if you buy into my rambles as to PD and so on.

Good luck-
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