B1 question

[maryalice]

Has anyone had P D for 20 years or more? Will B1 therapy help me even if i have had .PD for that long? I couldnt find anything that answers this in what I have researched.

I started taking B1about 10 days ago. I started with a low dose of 500mgi n the morningng and then a couple days later I took 500mg in the morning and 500 mg late afternoon, Then a couple days ago I started taking 1000 mg in the morning amd 500 mg .in the afternoon.. I have bee n experiencing some anxiety. It is not too bad, but I am aware of it.

My question is should I go up and take 1000 mg 2Xs a day. Or should,I go down to 500 mg 2X's a day and wait to go back up.

I would appreciate any help that you can share with me.

Thanks.

[Juliegrace]

I am 10 years in and it's helped me. It can cause agitation. I had some initially, but I take injections. My mom also has PD and she takes 50mg of allithiamine daily. It was the best I could get her to do and I think it has helped her.

[maryalice in reply to Juliegrace]

Thank you.

[LAJ12345]

Perhaps try adding some of the other b vitamins too. Try Hardy’s Daily essential nutrients and their inositol. They helped my husband’s anxiety. I think some people are missing other nutrients as well as the B1 especially if it deficient because of gut issues so it makes sense to me to top them up too.

[maryalice in reply to LAJ12345]

Thanks!

[Jennyjenny2]

Hi maryalice

I can only tell you about my husband’s journey.

Being 60 yo and 70 kgs at the time of starting B1 at the end of Jan 2019, Dr Costantini started him on 500mgs before breakfast and 500mgs before lunch. He was to stay on this dose for 2 weeks unless there was a worsening of symptoms, in which case he would stop immediately for a week then resume at half the dose. Watch for any small change (no more constipation etc) as it will assure you that you are a responder.

After several months, we have found his optimal dose is 400mg x twice daily.

Please be aware that it’s not about trying to build up to a higher dose, it’s about finding the dose that is suitable for YOU, and everyone is different! No one size fits all!!

Hope this helps a little.

Jenny

[maryalice in reply to Jennyjenny2]

Thank you so much for your help. Did your husband take shots?

[Jennyjenny2 in reply to maryalice]

He’s been using the powdered Thiamine HCL, but it would be easier to take the capsules/tablets therefore eliminating weighing the correct dose all the time. Also, we chose this option as he was having trouble swallowing tablets and we wanted to use the pure form, no fillers. Bearing that in mind, forum members have been having amazing results with tablets, it was just our personal preference.

The intramuscular injections are administered twice weekly, but orally Dr Costantini recommends twice daily.

It’s really important that you read as much as you can on this forum. Look up ‘HDT DOSING - How much should we take?’

[maryalice in reply to Jennyjenny2]

Thanks again for your help.

[MWLE]

My father was diagnosed 17 years ago. I started him on B1 about a 8 months (?) or so ago and has help out a lot. We have tried other more expensive options (off label) which did work but not sustainable. B1 has done a lot to help him including reducing his medication. We have just started giving him some grapefruit juices. That has also some very positive effects.

He is now on half the medication from about 1-2 years ago and doing better overall. His mental state is the problem now, but hoping that continuing to reduce the medication will improve his mental state.

Best of luck to you and your family!

[maryalice in reply to MWLE]

Thank you for your reply to my question. I really appreciate it. Could you please tell me if your dad take the shots or the capsules, and what is the dosage? Thanks.

[MWLE in reply to maryalice]

He started on 500 mg orally twice a day. After a few months. I was able to source injections. He is now on 50mg twice a week. If I can't give him his injections, he takes the capsules till I can give him his injection.

We swith to injections because he was taking too many pills and have problems swallowing.

He is 146 lbs, 5' 6", Asian male almost 80 years old.

[maryalice]

Thanks again.

[KERRINGTON]

Hi...I've had PD for 10 plus years. When my walking, and balance became a problem I started taking B1... 4 gms daily 18 mos ago adding magnesium theonate every other day. Little by little I reduced my dosage, and now am on just 250 mg ! Usually anxiety, anxiousness is my indicator to take a short break, and recoup. IfI'm off B1 too long I become very wobbly.

[maryalice]

Thanks for your help.