B1: Still not feeling good on 2g B1. Dr. C... - Cure Parkinson's

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cshamb profile image
21 Replies

Still not feeling good on 2g B1. Dr. C had me reduce the 4 g to 2g. I e-mailed him and he recommended going off for 5 days and resuming with 1gr. Anyone else had this experience. I also asked about supplements to take but have not heard back yet. I am a very poor eater and have not taken any vits.

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cshamb profile image
cshamb
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21 Replies

About a week ago I was experiencing problems on 2.5 grams. I wrote to Dr C and he recommended a 3 day break then 1 gram per day. The break was awful. One a day isn’t quite enough but better than zero!!

in reply to

Retry but this time 4g a day. ☺

in reply to

Started on 4 it was way too much for me dropped to 3 then 2 on Dr C’s recommendation. Stability seems to be the key and keeping the blood levels up to the precise level for each individual

KERRINGTON profile image
KERRINGTON

I'm having problems with severe fatigue and B1, Started with 2,3, then 4gms in March. Trying now to use with D and magnesium which helps sometimes. I eat well. I cut out all my other daily vitamins as they with b1 made me feel more tired. Going on a break for a few days, only relying on my mucuna puriens,

Wish me luck,,,having overbite guests for the 4th.,,,,,,,,,,,

in reply to KERRINGTON

Don't let your "overbite guests" take more than they can safely chew 😃

KERRINGTON profile image
KERRINGTON in reply to

Ah, ha, ha,ha !

MBAnderson profile image
MBAnderson in reply to

Overbite guest?? That's a good one. What I'm going to start calling my in-laws.

LAJ12345 profile image
LAJ12345 in reply to KERRINGTON

I found this interesting on fatigue. howirecovered.wpengine.com/...

amatista profile image
amatista in reply to KERRINGTON

Hi.

what dose of mucuna it takes and what schedule, and if it takes it alone or with more medications at the time.

Thank you

Amethys

KERRINGTON profile image
KERRINGTON in reply to amatista

I seem to be taking it haphazardly, according to the situation, At home I take 100 mg every 2 - 3 hrs. When meeting friends out, or in their homes, my need soars to approx. 200 mg every hour, or approx 100 every half hour. I take more, or less according to stress level. I'm 'only' on B 1, and tons of supplements.

ion_ion profile image
ion_ion

I did some experimentation starting March and found the best dose for me at this time: 500mg before lunch (9am) and 1g after lunch (2am).

Higher dose is worsening the tremor, lower dose has lower results.

Cshamb

The messages are to stick at it, monitor your response and talk to Dr C . He wants to help

KERRINGTON profile image
KERRINGTON

Yes...I believe Dr C..

ramondo4 profile image
ramondo4

It seems that B1 is not working for everyone, me included, although I am reluctant to take more than 2g each day, I got no encouragement from my GP to take such a high dose. hand tremors feel worse, no energy improvement.

LAJ12345 profile image
LAJ12345 in reply to ramondo4

Read this on fatigue howirecovered.wpengine.com/...

Very complicated but interesting.

Benidorm66 profile image
Benidorm66

I appear to be the same as you. Because I take numerous tablets for other existing health problems, I started B1 dosage gradually and have now built up to 3gms a day.Not showing any results yet apart from stopping my constipation in fact feeling worse re my balance and tremor, I am going to continue. But don’t know wether to increase to 4grms or to try the weeks break. I feel so disappointed !!!

in reply to Benidorm66

Benidorm66,

It sounds like your worsening symptoms may be an indication of thiamine overdose! Have you contacted Dr. Costantini to let him know?

Art

Benidorm66 profile image
Benidorm66 in reply to

No.Do you have his email address please?

in reply to Benidorm66

It is in the title of this post link:

healthunlocked.com/parkinso...

Art

NancyJHP profile image
NancyJHP

I've been taking 1 gram a day in the morning and I'm doing pretty good with it. My weight is around 170. Your weight should affect the amount you take I would think.

in reply to NancyJHP

NancyHP,

Would you please add your thiamine experience to the following thread about people who are taking thiamine for PD?

Thank you!

healthunlocked.com/parkinso...

Art

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