Problems with B1

[JeanieBeanie]

My husband started taking B1 as recommended on this website but had to give it up after three weeks because his health deteriorated. We were abroad on holiday at the time and he fell at least five times, one quite badly busting his nose and lips. When we got home he stopped taking it as Dr Constantini recommends stopping for a while if symptoms get worse. He has had DBS so I don't know if this complicates things.

[aspergerian]

An important anecdote. Thank you for sharing.

[Bridielena in reply to aspergerian]

Is it B1 or just the next stage. I have had 3 falls in 8 days. Black eye, grazes ,bruising. I was told by Neurologist that this is how most of us leave. I’m always thinking of that comment.

[JeanieBeanie in reply to Bridielena]

Are you taking B1?

[Bridielena in reply to JeanieBeanie]

Yes plus B3 , B12 Magnesium

Madopar , Madopar Er , Sifrol Er , and a Probiotic.

I try to take on board everything mentioned in these Posts but it’s too broad. I give up.

[Erniediaz1018 in reply to Bridielena]

Are you willing to give herbs a try?

[Bridielena in reply to Erniediaz1018]

Depends. Probably not.

Just get on day by day. Not looking forward to a flight I have to make this week. Have made it assisted passenger. I know they will look after me. To be adequately mobile I will need to take extra meds but only for that flight and the flight home. Family at the other end will be there....I just want to get out of wheelchair and safely walk to the car.

Thank you for your advice. Swallowing is still fine but the amount, only once daily for me, is difficult. The others spread out and manageable. No more of anything I would be keen to try.

[Erniediaz1018 in reply to Bridielena]

I hear you 😞. Sorry to hear. Have a safe trip home.

[Hidden]

Worsening symptoms on B1 is usually an indication that the dose is too high.

Art

[DianeJ in reply to Hidden]

Do you think it advisable to start on a low dose of B1 and build up? Thinking of starting with 500 mg daily.

[Hidden in reply to DianeJ]

It seems that the people who have done the best using thiamine are the ones who contacted Dr. Costantini and followed his recommendations and kept in contact with him, at least until the proper dose and proper balance were established using the pull test as an indicator for proper balance.

Art

[ConnieD in reply to Hidden]

Just to add I too stopped thiamine for a day or 2 thinking that’s what he would recommend. To my surprise in my case Dr C said I should continue. At this point it’s hard to say how I’m doing because of an unrelated infection that I’m taking antibiotics for. The point is you should keep in contact every case is different

[jeffreyn]

Hi JeanieBeanie,

It is not clear from your wording whether you have actually contacted Dr. Costantini and are following his recommended dosage (as requested by Marco in the comments section of your previous post).

healthunlocked.com/parkinso...

Jeff

[JeanieBeanie in reply to jeffreyn]

We did but we didnt have time to do the video etc because we were going on holiday so he went along with what other people recommended. We are home now so will try it again.

[2bats]

Try KETO - it works for me

[fossygma in reply to 2bats]

how do you do keto with all that dang protein?

[2bats in reply to fossygma]

As it happens I love protein, so the problem for me is not eating too much of it

[fossygma]

Should she take a week break first, then start up on the lesser dose?

[fossygma]

1 week?

[marion11005]

He told me the same thing when I notified him I had to stop and reduce my dose. Have restarted at 2 gm a day and am doing well. Too soon for a complete report.

[KERRINGTON in reply to marion11005]

Hi ! What main problem made you try B1 ? Thanks

[marion11005 in reply to KERRINGTON]

I started thiamine for the same things everyone else did. Tremors, stiffness, gait disturbance, fatigue, cramping, and apathy--all the hallmarks of Parkinson's. I reduced dosage to 2 grams after stopping for a week, because of an increase in tremors which occurred after the 2nd week at 4 grams.

[KERRINGTON in reply to marion11005]

Thanks..except for balance right now I can't seem to get it right.

[Kwinholt in reply to KERRINGTON]

Hi there. I’m all for trying alternative therapies and I started the high dose B1 regimen . Sorry to say that my symptoms are off the hook and had a hard time walking and running with my left leg. I guess it’s not right for me. If things are ok , maybe I shouldn’t mess with it. I’m thankful for everyone that gets relief with the regimen 😊