Thank you for reaching out to the Davis Phinney Foundation. We'd love to have you submit your story to possibly be featured in our monthly Moment of Victory davisphinneyfoundation.org/.... This is the platform in which our community can share their successes and victories in living with Parkinson's. Please let me know if you have any questions. Have a great day!
Alex Reinhardt
Community Outreach Manager, Davis Phinney Foundation
4730 Table Mesa Dr. • Suite J-200 • Boulder, CO 80305
720-399-1998
Hello, RoyProp. I was wondering if your tremor got better with thiamin treatment. My dad gave up taking it after a few weeks. Want to start him on it again. Thanks.
It saddens my heart when I hear such news. Trading thiamine hcl for the progression and ravages of Parkinsons. One cannot judge B1 effects on tremor turnaround.
Dr Antonio Costantini, carapetata@libero.it
My husband took 3 months to improve and then seemed to improve over night
Any updates with your husband and thiamine? How is he doing?
Thanks!
That wouldbe a great way to spread the thiamine protocol. Well done
hi roy---perhaps you know the answer to this, as its sunday, and i dont think ill get an answer right away from dr c. i started taking thiamine about 2 months ago, and noticed improvements within 3 weeks. (see my profile for details). my early morning dystonia was eliminated with the thiamine, but it returned during the night last night, and i had to take a half dose of c/l.
so, now im wondering if i need a higher dose of thiamine or a lower dose. i know if the dose is too high, it can worsen your symptoms. but, in my case, i showed improvement for the past 4 - 5 weeks, and then a return of one of the symptoms.
I upped my dose to six capsules from four. My symptoms started to return. I moved to two. No improvement. I returned to four capsules with success.
"We observed that the right dose of thiamine can lead to an improvement of the symptoms between 50 and 80-90%, but in order to push towards the complete regression of the symptoms the correct dose of l-dopa should be coupled to power the dopaminergic motor circuits. L-dopa then shall no longer lead to dyskinesia if used together with the high dose thiamine."
" When the high dose thiamine is suspended after a cycle of treatments of three months, the beneficial effects do not cease right away but start to diminish within the next two months. We believe that this happens because the mechanisms of action of the disease have a certain buffer effect which in turn requires a couple of months before getting back to the status of the symptoms before the use of high dose thiamine. "
jujulini,
Do you drink alcohol or smoke? Have you started taking a new med recently? I ask because these have shown potential to deplete thiamine. White sugar, bleached flour, caffeine from multiple sources such as coffee, tea, energy drinks & soda, stress and certain medications can all contribute to depletion of thiamine. If you happen to take a couple of these close together, you may have temporarily used up available thiamine or used up enough to cause a problem. I mention this so you can add this information as it pertains to you in your email to Dr. Costantini.
Btw, I would contact Dr. Costantini today because he has answered me on Sundays, so it won't hurt to try.
Art
thanks. i will email him. no new meds. i dont drink or smoke, no soda, no coffee or tea. diet remains unchanged.
i emailed dr c. yesterday afternoon (on sunday) and he emailed me back within 4 hrs! he is definitely one of a kind! anyway, he said that maybe it was an isolated incident, and do to poor absorption of a c/l dose, possibly due to diet. and to continue with the thiamine dose that i have been taking.
i had no dystonia this morning, and when i thought about it, i remembered that i ate a donut that day. and i never eat dontuts. i guess it was too much sugar......
Someone started a thread some time ago to keep a running update on B1 results and I haven't been able to find it since.
After three months my right hand tremor returned and I contacted Dr. Constantini. Sent him the videos he needed. He told me to stop HCL B1 for a week and then resume at the same 4 gram daily dose as before. I have done so and the hand tremor has subsided once again. It would seem that the tremor is more to do with the correct Sinemet levels than anything . His statement to me is that the B1 shields me from any long term adversity from the Sinemet side effects so not to fear the dosage within reason.
I have now corresponded with the Doctor three times in Italy and he has responded each time within 2 to 3 hours. I don't know when he sleeps.
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