To Be or Not To Be: Very long video on... - Cure Parkinson's

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To Be or Not To Be

CaseyInsights profile image
15 Replies

Very long video on Thiamine (Vitamin B1), focused on ‘Thiamine Biochemistry, Deficiency & Gut Dysfunction’.

Quite a far ranging piece. And if you are new to this like me you may need to go it over a couple of times. That’s just how it is 🥺

But I am quite happy I found this as I could not quite understand the linkage between the self reported benefits of Thiamine (Vitamin B1) supplementation: ‘increased hand swing’, ‘improved balance’ and ‘constipation relief’. But now I do.

And if you are one of those still on the fence about the value of B1 supplementation, take a look 🌺✌🏾🌺

youtu.be/Pi0O_fzczYA

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CaseyInsights
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15 Replies
Fed1000 profile image
Fed1000

Thank you very much for sharing, a few days ago I started using B1.

parkie13 profile image
parkie13

Thank you for posting. Most interesting. It's always amazing how things are inter woven and dependent upon each other.

faridaro profile image
faridaro

Fascinating information on vagal tone and thiamine deficiency connection which is good to be aware about. Just wish he would provide more detailed explanation about pharmacology of different forms of thiamine and the reason for preferring benfo- and allithiamine over thiamine hcl.

CaseyInsights profile image
CaseyInsights in reply tofaridaro

Forms of Thiamine

hormonesmatter.com/navigati...

CaseyInsights profile image
CaseyInsights in reply tofaridaro

Forms of Thiamine - second reference

bmcpharma.biomedcentral.com...

danfitz profile image
danfitz in reply tofaridaro

The reason thiamine hcl is preferred is that it is water soluble rather than oil soluble. Because of this it is excreted much more rapidly and doesn’t accumulate in the body.

M1tz1 profile image
M1tz1

Thank you so much for sharing this, Casey. It's going to be a great help.

Coling profile image
Coling

many thanks Casey, fascinating I am taking 500 gms a day, can you tell me what qualifications the presenter has?

CaseyInsights profile image
CaseyInsights in reply toColing

Can’t quite say.

But if you cannot sniff-out bullshit from valuable information without knowing someone’s credentials you are going to be hamstrung evaluating information on the world wide web. 😥✌🏾😥

Coling profile image
Coling in reply toCaseyInsights

Thanks Casey, from hamstrung Col.

Smittybear7 profile image
Smittybear7

How about B1 for dyskinesia? I just had blood work done my be one is within the normal range. How do you determine how much you need? My nutritionist who muscle test me for vitamin deficiency thanks I need 500 mg twice a day. I have the blood work done after he prescribed that amount. I tried taking B1 before and was getting a lot of jitteriness appreciate your thoughts on this. I'm also taking 1 Carbidopa levodopa 25 mg to 100 mg every 8 hours, 1 Baclofen 5 mg every 12 hours was quite a few supplements. Appreciate your input. Thank you very much

CaseyInsights profile image
CaseyInsights in reply toSmittybear7

Dyskinesia is problematic to fix, even for trained professionals. Is it levodopa induced or part and parcel of your unique Parkinson burden. If you are adjusting your levodopa levels and cannot quite get control of it you need professional help. And the first port of call might be Amantadine - a prescription drug. See your neurologist.

As for the B1 - which seem to have so many different outcomes - I would not hang my hat on it as the solution to the dyskinesia. You may need to take it as your nutritionist recommends it. But I would be weary of 500mg twice a day as you got the jitters having done so already.

My solution to my spouse jitters, which I noticed when she took 500mg of Thiamine HCl was to use Benfotiamine - another form of B1. Product here

amazon.com/Doctors-Best-Ben...

Also in use by my spouse is a sublingual B1 as Thiamine Mononitrate. A recommendation of one of our prolific contributors. Product here

amazon.com/dp/B004X4WM8W?re...

To sum up:

[1] Get professional help for the dyskinesia

[2] Take a form of B1 that your body can handle. If you insist on Thiamine HCL (the standard) start at 100mg once a day, then 100mg twice a day and increase dosage slowly upward.

[3] Do take a B-Complex. In terms of a mix of affordablity and bio-avilability I would suggest

amazon.com/Doctors-Best-Com...

Take care.

🌺

Smittybear7 profile image
Smittybear7 in reply toCaseyInsights

Their suggestion for treating the dyskinesia is to cut my present dosage 1 pill every 8 hours two 1/2 pill every 4 hours. What are your thoughts and do I do all three at half those or do I start with one at a time and which one wood I start with. Thank you so much for your help and patience. I really appreciate it.

Smittybear7 profile image
Smittybear7 in reply toCaseyInsights

I'm concerned about the side effects of amantadine. How dangerous is it? Can you still drive if you're taking it? That was the second recommendation . Possibly adding that drug 2 what I'm taking now. Thanks for your help and patience.

CaseyInsights profile image
CaseyInsights in reply toSmittybear7

Will message you about your concerns

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