I'm about ready to give up on this protocol. I would appreciate suggestions from those of you who have had success. I was able to speak with Doctor C shortly before he was taken ill. He suggested I start at 1.5 G for one month, then if no effect move to 2 G which I did. Then I had no more contact with the doctor. I was on two grams for 10 days. Then I update to two and a half grams for 5 days. I think it was causing headaches and worsening of my gait freezing but to be perfectly honest I'm not sure if I was just having bad days or if it was the thiamine. So I stopped for 5 days completely and started back up with 500 mg for two weeks. Then up to to 1 gram for 10 days. That takes me up to today.
In all that time I never noticed any Improvement and was not really sure about the bad effects. Any thoughts would be appreciated.
Bottom line: What I'm asking is, judging by my adjustments so far, would you suggest I increase or decrease or give one of the previous dosages more time?
Thank you.
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Natlp2
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I understand you, the PD is just ugly it would seem to always win in the long run, but maybe we have a little hope here with the B1. From your posts I see that you are a person who does not give up easily, so apathy does not spiritually belong to you. IMHO don't let b1 go away, you've tried various doses and intuitively you know which is the best dose for you. Don't forget to feed yourself well, that is a well balanced diet with fresh vegetables, carbohydrates and proteins, but not excessive. You can suspend b1 for a week or more if you think it is excessive or unbalanced. The goal is to stabilize the slow progression and have a win over PD (use Thiamine HCL) and maybe this takes a while how you can se here.
It’s starange he asks you to start with a lower dosage and increase it. Normally he would start with a dosage according to your weight and then decrease it. Frankly my husband started with 3 g and I found he was getting slower . Then we stopped for 2 weeks and lowered it to 1.5g. The way to test it was the pull test I don’t see much difference but he could walk a little longer distance than when he did not take it . When he did the pull test he could step back 1-2 steps. That’s when dr c said it was the right dosage
thanks, but i have always done well on the pull test so i don't think it's a good indicator for me. yeah, that's how Dr C told me to start. wish i hadn't lost contact with him.
I have found it generally takes few weeks at each dose of B1 to have effect good or bad. 8 months in and still tweaking doseage! Perseverence. Keep a journal of effeects as hard to remember what improved etc so you can rationally read over them. Take mannitol to knock apathy out of touch i use syncolein.com- i swear by it.
My husband is on levodopa. He does not have tremors. Did have freezing gait. Now freezing gait sneaks out when he doesn't take meds in a timely fashion. What did STOP the freezing gate was Full Spectrum Hemp Oil.
Does the CBD oil helps in anyway with your PD symptoms, besides energy? I just started it this week, I am hoping for good results, also what brand are you taking? Thanks 🙏🏽
I say give it more time as Roy recommends. Like Gio said I would keep an eye on my greatest symptom which is apathy as well and keep going on the peak dose like park bear until that symptom is relived. I've been on b1 for about eight months and apathy is not there for me anymore,
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