B1 Dose Adjustment

October 2020

I’m 9 days into B1 “vacation” and symptoms hit with vengeance.

October 2021

I’m 5 days into another vacation and no constipation all week.

Previous week solid constipation.

[reedboat2]

Maybe you stayed on vacay a little too long.

[Leslim]

R u back to B1 now?

[Hidden in reply to Leslim]

M - F, 4g daily

[MissRita in reply to Hidden]

How many mg is 4g?

[Hidden in reply to MissRita]

4,000mg

Best taken w capsules, not tablets

[MissRita in reply to Hidden]

Thx!

[mannp]

I hope starting the HDT again has stopped or slowed your symptoms. Take care Roy. I will pray for relief for you. 🙏🙏🙏

[Ramondo]

Why did you take s break from B1 Roy

[Hidden in reply to Ramondo]

I am in the process of adjusting my dose. Brought on by worse symptoms developing. I could not rise from a heavy cushioned recliner. That all changed after week into the adjustments . Adjustment effort continues. Now if I only don’t mess up.

Reference:

“ Why Are Forum Members Who are Using HDT/B-1 Starting To Have Symptom Increases After 6 ~ 18 Months Of Being Stable With B-1/HDT ?

chartist

chartist

7 months ago•48 Replies

I've been answering questions about this more and more on this forum as members start to exceed 6 months of HDT use. I decided to make a post about this problem so members can search/reference this post as needed.

According to Dr. Costantini, his theory is that thiamine/B-1 at higher dosing is reducing neuroinflammation, neurodegeneration, free radicals and oxidative stress which are feeding off of each other in a vicious cycle. Thiamine is possibly reducing or breaking this vicious cycle that is damaging dopamine producing neurons and other cells in the brain or possibly reactivating neurons that have become inactive. This combination of events is allowing increased cellular repair and the increased cellular repair, over time, can possibly reduce the bodies and brains demand for B-1 resulting in slightly more B-1 than is currently needed. More B-1 than is needed, results in increased PD symptoms. It takes months to see this type of cellular repair and based on the increased incidence of reports of a worsening of symptoms after months of HDT use, this is a real phenomenon.

Dr. Costantini's solutions to this problem is to stop B-1 for a week or so [ edit - Vitamin B1 is water soluble and is stored in your body for only 14 days. ] and then restart HDT at the same dose, but take a day off from B-1 per week or possibly two days off per week in order to create a fairly small dose reduction that should resolve the symptom increase. His other solution was to take a mini vacation from HDT every 3 months for three days to a week or more depending on how you respond. After the initial stop of B-1, the increased symptoms should decline fairly quickly such as forum member, 38yroldmale just reported after stopping B-1 for two days, his increased symptoms declined.This fits with the whole idea that there is now slightly more B-1 available than the body needs and this is creating a mild B-1 overdose condition. The fact that 38yroldmale responded in just two days of stopping B-1 suggests that the current dose is close, but a bit on the high side.

If Dr. Costantini's theory is correct about cellular repair, this scenario could potentially happen again some where down the road if the cellular repair process continues indefinitely.

Your continued reports about this are helpful for other members who are seeing this increase in symptoms after months of being fairly stable on HDT/B-1 and thinking that B-1 is failing them and the disease is again continuing to progress, when all that is likely needed is a small dose adjustment or mini B-1 vacation, base.........”

Here is a link to the original post so members can read the replies which also have useful information in them :

[Ramondo in reply to Hidden]

Thanks Roy

[PixelPaul]

Roy, I'm curious as to why you feel your symptoms have worsened? I recall from your previous posts your claims that B1 halts progression. Is it due to incorrect dosing?

[Hidden in reply to PixelPaul]

“This fits with the whole idea that there is now slightly more B-1 available than the body needs and this is creating a mild B-1 overdose condition. ”

[Hidden in reply to PixelPaul]

healthunlocked.com/parkinso...

[alaynedellow]

Good luck Roy. I am now on B1, 5 days a week with 2 off. Seems to sort out over dosing.

[Hidden in reply to alaynedellow]

Four grams daily?

[alaynedellow in reply to Hidden]

No Roy, my dose is quite low. I started at 1500mg twice a day - way too much for me. I'm settled on 1000mg over the week so 200mg a day. Huge difference but it works briliantly.

[ForViolet]

Hi Roy,

After he'd used high dose thiamine for a while, don't at the moment remember how long, my husband began to get a return of his slurred speech. So, I took him off it thinking to go without for 3-5 days, and then lower the dose according to how quickly he worsened... He complained of not feeling well and asked to go back on the thiamine.

But his speech was clear.

I waited another day and decided to put him back on about 3/4 of his dose. His symptoms improved again. However, within a couple of days, the slurred speech returned.

He says that since he functions much better, he'll take the blurry speech. Says nothings perfect. It looks like he still needs to reduce the dose, but not right now.

I think we'll wait a couple of weeks and reduce the dose rather than taking the vacation first. He is now on 1500mg plus the 50 mg of lipothiamine which he was using before we started the HDT.

Thank you for bringing up thiamine treatment.

Violet

[Hidden in reply to ForViolet]

My mother’s name, Violet.

Right, nothing is perfect. I am now trying 4g daily and skipping Saturday and Sunday.

Trying to resolve the new symptoms that now have been only partially removed.

[ForViolet in reply to Hidden]

I must re-read your reply to Ramondo when I am rested up.

[chartist]

That's perfect Roy! That gives you an idea of how long to make your B1 vacations in the future and now is the time to get back on it at the dose you choose. It sounds like you are now back very close to your native level.

Art

[Redginger]

Thinking of you, Roy.

[Godiv]

Roy, I wish you well and hope it all gets resolved. I've learned so much from you and appreciate your kindness in sharing. Feel better soon.