Thiamine hcl update: In December I... - Parkinson's Movement

Parkinson's Movement
17,576 members17,548 posts

Thiamine hcl update

Celtis
Celtis

In December I wrote to tell Dr Costantini that my initial response to the thiamine, which had been so encouraging at first, had sort of gone off. The depression I'd had before had descended on me again, I felt heavy, I was moving with the old slowness again and finding it difficult to get on and exercise. And my tremor was much worse.

He responded the same day, telling me to change from 600/600mg am and pm to 400/400.I did that and at first nothing seemed to change much and I was preparing to ask if he thought I should change again.

And then my husband said, a few times, have you noticed you are not shaking? I still was, however. I thought he was just trying to encourage me. But when we had a visit from friends and they said that they noticed I was not shaking, I began testing myself. I started doing things like putting coffee in a cup and found I could do that without spilling; I could carry two cups in my right hand without spilling;I could eat with strangers without embarrassment. Those were not big things but they were depressing reminders that pd only gets worse. And, most important of all, the depression was gone. I felt energised again and hopeful. I am at last able to exercise more.

I just want to say to everyone, don't give up on Dr Costantini's protocol. It really is worth experimenting with him until you get the right dose.

And I want to thank you all for the encouragement and fellow feeling on this forum. It is so good to be sharing the problems and finding how other people cope.

And Dr Costantini and Marco told me no need to thank them again. But I can't help but say it again. Thank you, thank you for the care and compassion they show to all of us.

13 Replies
oldestnewest

Celtis, thank you for sharing and the encouragement your post offers.

Very interesting that you got improvement with a reduction in dose. Makes me wonder if I am at my optimum.

jimcaster
jimcaster in reply to park_bear

It seems like a common occurrence. I started at 3 grams per day and, at Dr. Costantini's direction, reduced to 1.5, which seems perfect. I'm still only 8 months from diagnosis, but I started B1 within weeks and every symptom except micrographia is much improved, and even the micrographia comes and goes.

hi Celtis, I'm happy for your achievements, and that is that.

Thank you for sharing them.

Gio

youtu.be/SMCsXl9SGgY

Celtis
Celtis in reply to GioCas

Thank you GioCas. You encourage us all so often.

GioCas
GioCas in reply to Celtis

What I say doesn't matter.

Success stories like yours and the results are very valuable for everyone.

Thank you for sharing them. Celtis :-)

Excellent! I share your affection for Dr. Costantini and his staff and for all the information and encouragement which I derive from this site on a daily basis.

Hidden
Hidden

Celtis,

I am glad to hear that you are back in the "good place". It may not seem like it, but many people are having similar results as you where after finding what you think is the optimal dose, you then seem to gradually lose benefit over time and then a downward dose adjustment recommended by Dr. C gets you back on the right course! Initially a lot of people started at 4 grams because they "assumed" that that was the standard starting dose, but this error meant it was going to take a long time to find your optimum dose if your optimum dose turned out to be 700 or 800 mg per day! Some people have found their optimum dose at just 200 mg per day total!

Celtis, almost everyone can appreciate being appreciated, even if they say otherwise! On that note, I would like to ask you a favor. Would you please email Dr. C and just briefly relate your experience as you have with us? Even a copy and paste of your post would suffice. He works many hours so his patients can get to a better place in life and it wouldn't hurt to let him know that you are now one of his success stories, even though he says no thanks are necessary!!!

Thank you very much!

Art

Celtis
Celtis in reply to Hidden

Hi Art,

I have emailed him, have thanked him again and again. That is why he said no need to thank him again. I hoped that he would see my post on hu.

Great results for you....do you take 600 mg 2 times a day...

Celtis
Celtis in reply to Toogood

I take 400mg twice a day. I weigh 49kg. Perhaps a heavier person might need more.

Thanks Celtis for the words of encouragement. I started about 3 weeks ago and still trying to find the right dose.

Thanks for your reply..

You may also like...