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Ataxia UK
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Thiamine for SCA. Anyone tried it?

So over on the Parkinson's forum there is an enormous amount of discussion surrounding high dose thiamine. It mostly stems from papers and claims made by one Italian doctor: Dr. Antonio Constantini He has published several papers and claims to have a high level of success in ameliorating symptoms in SCA2, Parkinson's, FA, fibromyalgia, MS and many many other ailments. His underlying thesis is that what all these illnesses have in common is cell death due to thiamine deficiency and increasing thiamine levels in the blood therefore restores cell survival. Now mind you I am VERY skeptical as these claims are only coming from him, but there is considerable research on the benefits of thiamine for other illnesses so I don't think it's out of the realm of possibility. I should also mention that a second troubling aspect of Dr Constantini's work is that he continues to use thiamine hcl injections even though extensive current research has shown benfotiamine is vastly more bioavailable.

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Pharmacokinetic study of benfotiamine and the bioavailability assessment compared to thiamine hydrochloride.

ncbi.nlm.nih.gov/pubmed/243...

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Question: Has anyone here tried high dose thiamine for a substantial length of time?

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I actually tried about a week, but I stopped yesterday because I found my blood pressure had increased from 110/70 to 130/90, BUT today I'm noticing I'm feeling more tired than I have recently, and I have a slight "heavy" feeling in my legs.

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Anyways, just wondering if others had any experiences with thiamine to share :D

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Joe

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and what would a Joe post be without reams of research:

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Thiamine and spinocerebellar ataxia type 2

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

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Role of thiamine in Huntington’s disease pathogenesis: In vitro studies

advances.umed.wroc.pl/pdf/2...

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Long-Term Cognitive Improvement After Benfotiamine Administration in Patients with Alzheimer's Disease.

ncbi.nlm.nih.gov/pubmed/276...

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Thiamine and benfotiamine prevent stress-induced suppression of hippocampal neurogenesis in mice exposed to predation without affecting brain thiamine diphosphate levels.

ncbi.nlm.nih.gov/pubmed/285...

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Thiamine and benfotiamine improve cognition and ameliorate GSK-3β-associated stress-induced behaviours in mice.

ncbi.nlm.nih.gov/pubmed/278...

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Double-blind, randomized placebo-controlled clinical trial of benfotiamine for severe alcohol dependence

sciencedirect.com/science/a...

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Benfotiamine in Alzheimer's Disease: A Pilot Study (Benfotiamine)

clinicaltrials.gov/ct2/show...

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6 Replies
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Hi Joe

I have been giving my son 14 ,he has FA,thiamine for a number of months.It has helped immensely the tremor's have reduced a lot and he is a lot steadier when standing,writing improved, easier to hold a cup without spilling .

I am on a parents group for kids with fa and a lot has got good results by using thiamine

I give it orally 200mg ×2 .Family has purchased large amounts for me when on holiday in spain ,as it has to be prescribed in uk.We get the brand BENERVA

I cannot recommend enough as we have had such positive results

Hope this helps

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Wow, thank you Simon, we are going to Spain soon and I might as well buy some.

I think there is a logic in it, thiamine being one of the vit Bs as deficiency of B vitamins is also linked with neurological symptoms.

I have been giving my son B vits on and off as I believe you need a varied concerted approach. I wish it wasn't so hard to get a comprehensive blood test from the Dr rather than just the standard blood counts etc, no one seems to be interested in vitamin status.

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fafysio.wordpress.com/

Not very good at pasting links hope this works

Read thru this blog and in some of the replys from a number of months ago positive feedback on thiamine

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Wow! Thanks for sharing the information!! I really need to learn and understand why the preferred use is thiamine hcl and not benfotiamine. No matter what I am happy to hear it is helping! Joe

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Found this MAY help - seem to use very low dose? x

oatext.com/Thiamine-and-dys...

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I been taking it as part of the vitamin B complex (100 mg), haven't really found much of an impact/change in my symptoms.

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