I am 5'5" and weigh 120 lbs. Diagnosed 2 years I take Azilect:
Here is Dr. C's Response
"For now, do not change your treatment. Start taking 2 grams a day of thiamine hcl (1 for breakfast and 1 for lunch). Read the instructions carefully. In particular we will need the pull test now. If there is a need we will see for levodopa. It is now well established that it is not the duration of treatment that gives late complications, but the fact that neurodegeneration progresses. Thiamine restores cells and stops the progression of the disease when you (like our patients) will never have these problems. It will be easy to bring you zero symptoms and forever. Give me news in a month or when you need it.
AC"
(Read carefully)
The dose of thiamine in the future can be increased or even decreased depending on the result obtained.
First of all you have to take a short videotape of your face while you speak, of your walk, and of the pull test made by a relative or friend. To determine the right dose in future we will follow thi criteria.
First of all we need to say that, if the dose of thiamine used is excessive for that patient, it can determine, after an initial improvement, a worsening of his symptoms previously improved (rarely a worsening already at the first dose can happen)...
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Well now I understand your interest in thiamine Can you tell us what else you are doing right now, and please do keep us informed of changes you feel! Thanks for sharing.
Hi - I am intensely interested in recent info I've learned on B vitamins. I plan to follow Dr C's instructions. I plan to start next week and will definitely keep everyone posted. I also began Niagen several weeks ago, 250 mg daily and don't notice any improvement but it seems worth it. I began that based on your post. What do you think of Niacin vs Niagen?
LOL, happy to share what I take and I welcome your feedback:
Azilect.
NAC 600 mg 2x day mirroring a trial
Niagen 250mg day (as you posted)
1 Ropinole at night (RLS)
Victoza injection: I work with my GP on a study mirroring Cedars Sinai on Victoza / Liraglutide for several months and I see positives in my response. clinicaltrials.gov/ct2/show...
Isradipine: Also working with my Dr on slowly beginning Isradipine mirroring that well known trial.
Thiamine: Beginning next week
I am considering Amantadine for cramping (foot) which prohibits exercise a little but only if the Thiamine doesn't fix it. My main symptom is tremor in right hand which is worsening.
I will look through your posts to see what you are taking though I know you are fighting something more severe but a similar variety if I understand correctly.
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