Does anyone have an opinion on the use of... - Cure Parkinson's

Cure Parkinson's

20,843 members22,242 posts

Does anyone have an opinion on the use of Vitamin B1 for treating PD?

Nemesia profile image

I've been recommended to try vitamin B1 by a fellow PD patient and with the dosage of 500mg x 4 per day. Is it okay to start on this dosage? The Hospital under whose care I fall does not want to get involved and says that vitamin B1 has not been proven to assist with allaying the symptoms of PD. Can anyone give me any more information? I've had PD for at least 16 years.

13 Replies

Basic (B) - (1) 1nstructions. B1 in the form of thiamine hcl is required for HDT (high dose thiamine) therapy.

Regarding thiamine hcl, it is not a cure. It is at its best supporting carbidopa levodopa. Solgar tablets are choke hazard. Find capsules as they are easy swallow.

Doctor Costantini directed:

Early or mild symptoms - 2 grams daily.

Moderate symptoms - 4 grams daily.

Severe symptoms - 6 grams daily.

Divide into two equal doses. Take first dose at breakfast. Take second before lunch.

I

Before starting with full dose take a small amount and watch for any allergic reaction.

Continue to the GUIDE - click on See All .

JayPwP profile image
JayPwP in reply to

Roy, do you mean that b1 30 mins before breakfast and 30 mins before lunch?

I fast till 2.30pm and have B1 morning at 9 and around 1pm. Havent seen any improvement yet.

I am not on C/L or other meds because I don't get any benefit from it.

in reply to JayPwP

No

"Parkinson's disease" Vitamin B1 use instructions : Join my Facebook group Parkinson’s thiamine hcl m.facebook.com/groups/23226...

Well! I am fairly new to B1 and I take a much lower dose than you mention as I get back pain if I go above 500 mgs x 3 daily but that is just me. The advantage is that I can smile and am much more animated than before and I do not seem to be sliding downhill. When I tell someone new I have PD as happened a good while back at the GP surgery and was asked by the new lady doctor why I was telling her this - after all I had gone there for an infected cat bite - I said I don't want you to think I am pissed! I find since the B1 I am more in control and increasingly people say you'd never know! I know! But most of the time I am reasonably good company with a GSH and nobody is avoiding being with me which I can understand. So keep up with the B1 and the Curcumin and the vit D and the CoQ10 and make sure it is not all about YOU! It is all about US. We walk we fall. For goodness' sake one of the side effects of CL is wind! I have had some hysterical moments when mid conversation a huge f**t has taken me completely by surprise. Too much information? No B1 - constipation - constipation - wind. If I have nothing else to share it is that I don't need help with my disposal system. Make sure that some responsible person is aware that you have not had a bowel movement and that you might need a little push to get things moving along. So stick with the B1. The nurse taking my blood sample the other day took away with her that her head tremor might be helped by B1. I only wish I had asked her name! But you see it was all about ME!

It’s been great for me (4g) per day. Eliminated a number of non-motor symptoms.

Marimar70 profile image
Marimar70 in reply to jocelyng

That is wonderful. ♥️

Nemesia profile image
Nemesia in reply to jocelyng

Thank you

I believe this is the best information about thiamine (B1):

healthunlocked.com/cure-par...

Nemesia profile image
Nemesia in reply to jimcaster

Thank you

There are two forms of B1 water-soluble Thiamine and fat-soluble Benfotiamine.

The Beneficial Role of Thiamine in Parkinson Disease

ncbi.nlm.nih.gov/pmc/articl...

P.S.

I always look for ways to reduce alpha-synuclein.

you may also want to look at B3 & B12 & D

B3

clinicaltrials.gov/ct2/show...

alliedacademies.org/article...

B12

michaeljfox.org/grant/relat...

parkinson.fit/mayo-clinic-r...

D

pubmed.ncbi.nlm.nih.gov/229...

Regarding B1

What did you do?

You may also like...