*** I ended up with High Blood Pressure taking TTFD. I no longer take TTFD. Based on my experience, I would not recommend TTFD. ***
On TTFD, I experience complete elimination of all my PD symptoms - was that Placebo. Should I expect elimination of Tremor? My Tremor is at an acceptable level, but not eliminated.
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Gcf51
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There is disagreement on this forum as to whether not benefits from B1 therapy might be due to the placebo effect. Daphne points out that the process of trying several different dosages does not lend itself to the placebo effect. Perhaps not. However, there are some PWP who do not go through a lot of trial and error to find the right dosage, but instead experience benefit from their 1st try. I believe some of the benefit experienced by some of those people is due to the placebo effect and since the placebo effect occurs in every drug trial, it is only reasonable to assume it occurs with B1, too.
When I first saw the information about Dr. Constantini giving B1 injections to people with tremor I thought that they had essential tremor. Maybe if a person was deficient in B1 and that was contributing to tremor they might have improvement but if a person has improvement that is a placebo effect I guess that would be helpful as well for that person
I always thought Placebo Effect was something that would not last long term. But on the other hand, Placebo Effect is supposedly strong in PD because feeling "good" produces dopamine and lack of dopamine is the reason for PD.
What a placebo or nocebo effect is a very controversial issue. It is measured in trials context in controlled environment as a comparison between two cohorts with the same basic conditions and that cannot be transferred into context of everyday life where conditions change every hour.
So in my opinion no one can know about placebo and it makes no difference , but the non-motor symptoms of PD are poorly affected by levodopa, that's enough for self valutation about b1.
Look I think it is too early to jumping to conclusions.. With many people B1 eliminated most of the symptoms, even all of them except the tremor..yet with most of the users it was a temporary relief. Either placebo or not, I would say it is worth to try. The main problem with B1 is to identify the dose, which is individual and not constant. You have to chase it, which is not easy and people sooner or later quit this game. I played it almost 2 years and finally dumped it all. Now I am curious with your results. We have to try everything which may help to get rid of this shi.. disease.. No other choice...
My husband with Parkinsons is taking B1 but he takes other things as well. Some of what he is taking is decreasing his tremor to a point where he can do some tasks that were very difficult. If he does not get adequate sleep or something stressful happens the tremors tend to be more pronounced.
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