Sorry Roy I'm sure I'm supposed to post this on Facebook I just don't use it. I'm very happy to report that the use of B1 has been very good for me I only wish I started earlier. I'm in my 11th year 7 years since diagnosis. Dr.C recommended one gram a day for two weeks and increase if all is well. Yesterday I doubled up one gram in the morning with my l-dopa (mucuna) and one gram before lunch with my l-dopa. Some of the benefits for me have been:
1. Mucuna has been lasting a little longer.
2. A lot less shaking in my jaw and grinding of my teeth which made sleeping very difficult it's much better now almost gone.
3. No more brain fog between doses
4. A lot more energy during the day and a lot more desire to do things. If only I can quit my job! LOL
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Stevenmast
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Hi Stevenmast. It’s great to hear how you’re going! My husband has also just started on HDT (from Dr Costantini’s recommendation of one gram a day) but has only been taking it for 5 days and has already noticed no more constipation! So we’re really excited about the future 😊. He is using the NutriVita powder.
We’ve been wondering how you’re going after doubling up on the B1 a week ago?
My husband says he hasn’t had the same results as you, but I feel he isn’t as anxious as he has been, and he’s also not shrugging his right shoulder as much (opposite side to his affected side). We’ll wait another couple of days before doubling the dose here. (He’s just walked in the door after playing 3 sets of tennis - exhausted, but happy-something’s working!)
Hello! so far so good! as you probably know I only use the bean Mucuna. I take the b1 with my first two doses 9 o'clock in the morning and 1 p.m. So far the benefits have been:
1. the on and off feeling you get between doses as it wears off has gone away. Not any brain fog.
2. My core is better allowing me easier movement in bed. Less shaking of my core when I do sit-ups.
3. The hand and finger movement that a lot of pwp's have has gone away.
That is very good news and I am happy to hear that your increased dose has helped even more!
If possible and you haven't already done so, could you add your HDT experience so far to the following thread where forum members have been posting their results with HDT? The thread has gotten long and can take up to 20 seconds to load, so just give it a moment to load. That thread has a lot of people following it, so by adding your experience to it will maximize exposure of your post. Here is a link to that thread :
We’re planning on cutting back on the madopar even further (at present he takes 3 half tablets 25/100 daily, plus mucuna) but not at the moment while building up on the B1, as per Dr Costantini.
Benefits so far have been:
1. No more constipation.
2. Anxiety not as bad.
3. Slightly more energy.
4. Shoulder not shrugging anywhere near as often (could be put down to less anxiety though, which is great anyway!)
Too funny! I forgot to mention I don't have constipation anymore. LOL good luck keep us posted. Steven
Stevenmast,
Great to hear that you are off to a very good start with HDT! Since Dr. C is currently unavailable and you have just doubled your dose, it might be prudent to pay attention to any deterioration in your symptoms in the coming days and weeks as that could indicate that the new dose may be too much for you. If it happens , don't panic.
Some forum members have reported additive improvements up to and beyond a year so there may be more good things to come, but the really big thing is that, as a clear responder to HDT, there is a very good chance that you have significantly slowed or halted the disease progression!
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