Question for (B1)ers: Does B1 eliminate T... - Cure Parkinson's

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Question for (B1)ers: Does B1 eliminate Tremor?

Gcf51 profile image
12 Replies

*** 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 profile image
Gcf51
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12 Replies
MBAnderson profile image
MBAnderson

Perhaps.

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.

Boscoejean profile image
Boscoejean in reply to MBAnderson

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

Gcf51 profile image
Gcf51 in reply to MBAnderson

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.

Gioc profile image
Gioc in reply to MBAnderson

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.

MBAnderson profile image
MBAnderson in reply to Gioc

Agree.

dadcor profile image
dadcor

In my opinion No it does not! Even Dr C never stated it does. May be some reduction, but not elimination. That is why L/C is needed.

Gcf51 profile image
Gcf51 in reply to dadcor

A little disappointing that I may not get back to elimination of all my PD symptoms (day 3).

dadcor profile image
dadcor

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...

PDWarrior1900 profile image
PDWarrior1900 in reply to dadcor

when you say that you 'dumped it all'... were you referring to durmping 'just'... B1?thanks and STAY STRONG!

dadcor profile image
dadcor in reply to PDWarrior1900

Actually I meant: Thiamine mononitrate, Thiamine hydrochloride and Benfotiamine. I tried with them...

Boscoejean profile image
Boscoejean

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.

Fumaniron profile image
Fumaniron

B1 WITH sinemet eliminates my tremors. This is better for me than sinemet alone

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