Vitamin B1 Therapy

[Rafyaz]

Is anyone on the high dosage of vitamin B1 therapy and for those who are, are you also taking any meds for Parkinson's like "Levodopa"?

[jimcaster]

Yes. I began taking a high daily dose of thiamine (B1) in May of 2018, just weeks after being diagnosed. I still take 1000 mg of B1 every day. I have no idea if it helps, but other than the cost of the pills, there's little downside. Despite dutifully taking B1, I developed dystonia in my right foot while walking or jogging approximately 1.5 years after diagnosis. That led me (reluctantly) to begin taking 25/100 carbidopa levodopa. I now take 3 or 4 carbidopa levodopa pills per day and am getting along very well. For the most part, I HOPE B1 helps slow the progression of Parkinson's Disease, but it didn't stop progression for me. I know carbidopa levodopa does not slow progression of Parkinson's, BUT it basically eliminated my symptoms and enabled me to live a very good life, at least for now.

[Rafyaz in reply to jimcaster]

Have you considered increasing the dosage of B1? According to the book by Daphne Bryan

reads that the range of successful dosages is 1,500 mg and 2,500 mg

Thank you for your post

[jimcaster in reply to Rafyaz]

Yes. In the beginning, I took 2000 mg and gradually reduced it to 1000 after consulting directly with Dr. Costantini via email.

[Dap1948 in reply to Rafyaz]

Thank you for referring to my book. There are actually people now, who are on much smaller doses (500mg or less) and still having great success with symptom reduction. The excerpt you quote refers to a survey done on HU some time ago. It wasn’t meant to suggest that they are the only doses. Everyone needs to trial B1 for themselves, looking for the dose which triggers improvements.

[Rafyaz in reply to Dap1948]

Thank you.

I started taking 1200 mg if vitamin B1 three days ago and notice I'm not shuffling my feet as much and my speech has improved a little. Hope I'm in the right path.

[Dap1948 in reply to Rafyaz]

Yes, good signs. However, because you are seeing improvements so quickly, be aware that if you get worsening symptoms it will be a sign that your dose is too high. Then you should take a break of 1-2 weeks to clear the overdose and then restart at a lower dose.

[Rafyaz in reply to Dap1948]

Thank You Daphne and for the book you published

[Dap1948 in reply to jimcaster]

You may not be on the correct dose for you, the dose that triggers improvements. If you are not on the right does, there is a chance B1 won’t slow progression, stop dyskinesia or improve symptoms. My book explains how to find the right dose for you in much more detail than I can explain here.

[jimcaster in reply to Dap1948]

Thanks, Daphne. I appreciate your efforts and your sincerity.

[WinnieThePoo in reply to jimcaster]

Royprop, who is no longer on the forum, was a clear example of someone who was a committed devotee of B1, who regularly repeated the line that it stopped progression, and whose own PD progressed significantly whilst he took B1, by his own accounts, including a 10 point increase in his self-assessed UPDRS score over a 2 year period

So I think there is a strong case for stating that B1 does not reliably stop progression

[Michel0220]

Hi Rafyaz

I was diagnosed in February 2020 but had symptoms at least 18 months before that.

I have been on 2.5g B1 for 18 months and am taking 3x 12.5/50 Sinemet.

I currently have my symptoms under control and I do many things to manage them including exercise, nutrition and meditation.

If you are interested in B1 please consider buying D Bryan’s book. Please see below for my interview of her:

youtu.be/iu1vJ8eN8HM(Not working as expected?)

[Rafyaz in reply to Michel0220]

Hi, Yes I bought the book. Thank you for your comments

[Manypony]

I use B1 no meds

[Slowroast]

I was diagnosed 12/21 but know I had symptoms long before that. Currently I am doing well on NOW Dopa Mucuna (2 at breakfast, 1 at dinner). I have great success in symptom reduction with B1 hcl 500 mg every other day. The fatigue relief has been amazing and other symptoms are greatly reduced. I was not able to tolerate the sublingual b1 and I’m still tweaking the hcl but doing so much better!

[Rafyaz in reply to Slowroast]

Thank you for that info on Dopa Mucuna. Just placed an order through Amazon

[Tommiks]

If taking vitamin B1, is it important to add or take magnesium threonate in addition? Tia

[Gcf51]

I was taking B1 as 1100mg Thiamine HCL and 4 a day C/L with good results. I still take C/L, but I am now taking ALINAMIN F. I have been taking ALINAMIN F for 2 wks, today 17.5mg with much better results (nearly no tremor). healthunlocked.com/cure-par...