I think the main concern for everybody with PD is to know the truth about relationship between long-term use of Levodopa and Dyskinesias and how Thiamine protocol can help.
Dr Costantini has told me that people who are taking Sinemet with Thiamine WILL NOT develop Dyskinesia even in long-term use.
I very much appreciate Dr Marco Colangeli for his professional opinion and other forum members for their inputs.
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Kia17
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I didnot get your question but if from “link” you mean URL then the answer is No but if its referring to a link between improvement of Dyskinesia and Thiamine protocol then the answer ,as far as I know ,is Yes and I have asked Dr Colangeli to share his professional opinion with us.
As someone who has suffered from dyskinesia almost from my first (low) dose of levodopa, I would like to see his actual input. The only way I could understand Thiamine reducing dyskinesia is that if some PWPs are able to reduce their levodopa intake, which is the opposite of what Dr. C has reported. I don't have the exact citations but repeatedly Dr. C has said to continue with and sometimes increase levodopa.
That’s why Dr Costantini believes that even in long-term use of Levodopa, PwPD willnot develope Dyskinesia should they follow his Thiamine protocol. In many cases people who had Dyskinesia for years were treated with Thiamine successfully.Plus because of the positive effects of Thiamine they might also enjoy benefits of reducing their Levodopa intake in general.
Juliegrace, Here's the Link for Dr. Colangeli's opinion (see the latter half of RoyProp's original post.) He appeals here for wider recognition and cooperation in the research; he says nothing about dyskinesia or other therapeutic issues:
My hubby has tried two different meds and not reacted well to either. He was on rasagilline as well for three months but didn’t benefit either. So desperate for any info to help improve his mobility. Wondering if thiamine would benefit him if not on any meds?
I have consulted with Dr Costantini about your query and I do confirm that on the basis of our observations: our patients who do use l-dopa in addition to thiamine have not developed dyskinesia. This is true for patients who are under treatment for 3 to 5 years (we invented this treatment in 2013). However, you should inform Dr Costantini or myself about your current l-dopa regime and he will see if it needs to be adjusted.
We do consider the timeframe above “long term” but further studies are necessary to confirm that patients will be dyskinesia-free lifelong though we are optimistic.
I wrote to Dr C. He said to take 3 g of thiamine a day (I’m doing 1.5g twice. A day) No mention of magnesium or other drugs. He asked me to take a photo at the start . That’s all he said.Do you constantly write to him or does he come back to you.So far, there doesnt seem to be much improvement but it hasn’t gone worse
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