Has anyone gotten worse after trying the thiamine\B1 Protocol?

[eemove]

what are the risks of vitamin B1? if you stop, do symptoms go back to what they were, or are changes (like standing straighter) permanent? Again, thanks. for any replies and forgive the newbie questions.

[38yroldmale]

No risk except a worsening of symptoms usually after an improvement. This means you have too high of dose. I am very early in progression, wanted to see if it worked. The worse the symptoms, the higher the dose. When I started I started with 4 grams a day. Way too much. Within about a week I had an improvement followed by a worsening of symptoms. Take a week or so off and start again with 1/2 the dose. Keep doing that till you find the right dose.

[eemove in reply to 38yroldmale]

Thanks 38 yroldmale. I think 2,100 mg is my dose. At2,200 mg, I was falling and am now fine back to 2,000. mg.

[grandmama16 in reply to 38yroldmale]

Jumping in here for my hubby. He has had PD since 2013 or before....hard to tell. What symptoms does B 1 help? His tremors have pretty much stayed the same, left side, but he has balance problems, hallucinations usually in the eve. He takes his C L at night, Resigiline or Seligilan once during the day. Don't know which or mil. But he doesn't take a lot. He has trouble getting to the bathroom quick enough. Has gained a lot of weight since diagnosed but has tried PD exercise classes and boxing tho unless that's kept up it's no use. No energy for us both so it's hard to give him a will to do anything. Before Covid we went to PD support group once a mo. I have Fibro. We are in our mid 70's. We have a very hard time getting things done around the house or yard. We have some help but not much. Might get B1. We take a multi, B12, D . He falls asleep easily at any time. Would B1 help that? M.A.

[eemove in reply to grandmama16]

I found that, if you decide to try b1, you are on your own. American doctors don't have experience and therefore will not recommend dosing. Personally, I figure, what do I have to lose?

When I started the b1 program, I started low (300mg ) and spent 3 days at each new dose. At 2,000 mg, I began to stand straighter, had less shuffling and freezing, and in general felt sturdier.

I jumped to 4,300 (an error)and wrote "miraculous!" The tremor in my right leg, that I didn't know I had, was gone. I slept a full night, where before I woke every 2 hours to pee.

Unfortunately, that was way too high on thiamine, and I immediately started falling again. I felt very off-balance and dizzy.. Following Dr. c's advice, I took about 3 days off and restarted at half the dose, or 2,000 mg; 1,000 before lunch and 1,000 after. I only deviated once, to 2,200 mg and once again, immediately began falling. I am back to 2,000 mg.and assume this is "my" dose. Things are stable now, I'm 3 months in.

Vitamin D should help with both more energy and sleep.

Best of luck!

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[chartist]

eemove,

Any worsening of symptoms when using B1 is generally related to B1 overdose and only lasts while the dose is too high. Stopping the dose for several days to a week resolves the issue and then you can restart at a lower dose. Dr. Costantini was very clear that any worsening of symptoms after starting HDT/B1 at too high of a dose is temporary.

Here is some information that may be useful for you and at the bottom of the page, there is a link to all of the information that Dr. Costantini left with this forum while he was able to.

If you have any questions, please post them to that thread so the information is available to all in that single thread to be used as a reference page by other members. Thank you!

healthunlocked.com/parkinso...

Art

[eemove]

Thank you Art! I didn't think so but wanted to make sure.

[kaypeeoh]

I see a referral doctor in three days. I saw her last month. She mentioned the Hartford hospital is doing a study on vitamin B1 as treatment for PD. I've got several questions with B1 at the top of the list.

[Despe in reply to kaypeeoh]

Wow! That's great Kaypeeoh! Please keep us posted on Vitamin B1 study.