It is difficult to set up a High Dose Thiamine (HDT—B1) Clinical Trail because dose is variable, unique and the protocol can take more than six months (added cost)—So how about a trial where People with Parkinson (PwP) who are successful on a HDT dose, be split into groups. One group taking their successful dose and a second taking only a placebo. Ok, introduces problems with researchers and subjects not knowing which group is which, but that should be still a doable.
To me, should be done with oral Thiamine HCL to reduce cost. I feel most will have Return of Symptoms within a month.
Their is little question in my mind that HDT works and all should try. I recommend Dap1948 's book and her Facebook Group.
1) I do not recommend TTFD. I think most of the gains that I felt were placebo. I had to quit because my blood pressure went through the roof. My opinions 1) It is not ready available anywhere except Japan in small enough doses to be useful for me. Best I can tell, I would need 5/8ths of a 50mg capsule a day. In Japan, prescription drug ALINAMIN F is available in 5mg, 25mg, and 50mg tablets that should be easily divided in half. (can be ordered if paid for via wire transfer) mimaki-family-japan.com/ite...
2) I also question if it is possible to obtain steady state—I had to keep lowering my dose because of return of symptoms (overdosing on yet another lower dose).
Update for 1/26/23: I have been at steady state on oral Thiamine HCL (1200mg) for 99 days. I did manage to lower my dose of C/L back to 5 a day (I had increased by 2 to help control my Blood Pressure). I did quit taking for a few days; a) my fatigue starting returning within 2 days, b) I never eliminated my tremor, but tremor was less (it started getting worst again within 2 days), c) On the 3rd day, I notice I was what I refer to as “walking drunk” (a tendency to walk toward the right, over correcting and walking back and fore to left to the right.), d) On 4th day, I had to take more fiber.
I realize some of my statement does not speak highly of taking every third day or a couple times a week, which is kind of a common practice of those taking sublingual.
Have you considered a n=1 trial? That is, a trial in which the results of each participant are treated seperately from other subjects. For instance, on joining the trial, and before any intervention has been started, each person could be tested each day over a period of, say, a month. This provides a baseline. After this, the intervention begins, and the person continues to take the test daily for another month. The before and after scores for that individual are then compared.
An advantage of this approach in the PD-world, at least, is that there are probably a number of different sub-types of the disease, some of which the intervention works well, and some which it works badly. Then, at the end, one score dilutes the other.
Also, I think I would have more confidence on whether the intervention worked for me if I had many test results for a single person, myself, rather than if I had a single result from many people. Crudely speaking, whether the intervention works for me is what matters to me. Whether it works for anyone else counts little to me.
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New website to share information about high dose thiamine(B1) therapy: www.B14PD.com
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