In studies of Alzheimer's disease, subjects were treated with 1000 mg of oral thiamine hydrochloride three times a day for 2 to 12 months without any reports of adverse effects [7,25,26]. In a separate experiment, subjects were titrated up to 8000 mg per day over a 1-year period. The only side effects reported were nausea and indigestion in 2 subjects when they reached 7000 and 7500 mg per day [7]. There have been several clinical trials of thiamine derivatives for a variety of disorders that used doses between 300 and 900 mg per day in divided doses for periods up to 3 months. No side effects were reported in these studies [2,27-29].
High Dose Thiamine / B1 / Thiamin - Cure Parkinson's
High Dose Thiamine / B1 / Thiamin
So what can we conclude out of it for PD? Thiamine chloride or sulphide? 100 MG or 1000 MG.
I have asked the same via email from the Italian doctor and waiting for the reply
Thiamine chloride.
..."...Dear Roy,
We don't use benfothiamine because previous trials report it does not enter in the neural cells, that's why it is not used for the diseases which don't affect the Central Nervous System (Bettendorff L.).We administer thiamine cloridrate."
Doc Costantini
Are you taking Magnesium with the Vit B1?
Yes. See my Profile and look up my post reg mag
Okay so the side effects were minimal. Is there any evidence in these studies for efficacy?
Have you ever tried the lipid soluble thiamine derivative benfoitiamine? Next question a have you read anything that is against it as a therapy? Been taking 300 mg along with 4g B 12 for a couple months no negative side effects . Just better mobility than when I forget to take it. Don swear to know if that is b12 or benfotiamine or the combo.
Oh, never mind I just read a previous post of yours about it.
I do not say
This study done in 2017 shows elevated levels of B1 was harmful to humans:
ncbi.nlm.nih.gov/pmc/articl...
I will accept a slight cognitive effect for the greatly reduced PD symptoms.
I didn’t read the entire paper, but of what I did read, stated the opposite.
I read it and it sure didn't sound like B1 had a positive affect. Quite the opposite, which is disappointing. But then you have earlier studies like this one -- ncbi.nlm.nih.gov/pubmed/265... that seem to say just the opposite. What are we to think?
Think! What will happen to those discouraged by intimidation and false words against thiamin HCI. Only the ravages and progression of Parkinsons.
I do not care what the papers say as long as B1 really helps me big time. I hope that will be for long time.
I would really love to hear from someone who has tried the B1 supplementation and had substantial results...
Yes, I'm one of them. I regained my mental and physical power and the arm tremor went down more than 50%. I can say for sure I'm in a much better shape than before starting on March 24, 18. I do not know if this improvement will stay for ever but for now it does help. Also I noticed fast walking is helping, too.
And by the way, I'm a computer programmer and I was at the point to give up but my mental power is back. In addition I can use my right hand again with the mouse.
That's amazing. Were you on meds before starting B1?
Which B1 are you taking?
and how much?
Thanks.
No, I was not on medication. around 1g to 2g /day, Solgar HCL from Amazon, 500mg tablets.
Thanks ion. I guess you don't need meds even now?
How much fast walking do you do?
Thanks.
I have completed year one very satisfied. Stopped the Parkinson's progression and suppressed the symptoms. See my profile.
ion_ion and RoyProp, I'm so happy for you both that you have found relief. Can you tell me how much B1 you currently take and in what form? I am asking for my father who is 88. He has moderate dementia and a very hard time walking. One leg freezing up constantly. No real tremor except some essential tremor when his hands are in use that he inherited from his mother. He is currently taking 50/200 carbidopa/levodopa CR 3x a day. He weighs about 170 lbs. Any suggestions on what I should try him on?
See my profile.
If you take a look at this chart from the study Sunvox cited: ncbi.nlm.nih.gov/pmc/articl...
You will see that random variation is many times larger than the detrimental effect alleged for B1. They claim the result is stat sig, which seems highly unlikely. In any case this chart shows that their result is not clinically significant. Also, they threw out 46 blood level outliers. With such a weak result including them might have changed the outcome.
If you then scroll the image down to part B you will see the error bars touch, which would indicate p = .05, not p <.01 as they claim there.
I'd like to add something else here.
They compared B1 blood levels to FOURTEEN indicators of cognitive function. They found only ONE where there was a negative association between B1 concentration and cognitive performance.
At a p=0.05 level of statistical significance, you would expect a false detection rate to average around 1 in 20.
What this means is that even if there is no relation, if you do 14 tests, it's more likely than not that you will find one false positive at the p =0.05 level.
They CLAIM that one relationship was found to be significant at p<0.01. park_bear's analysis of the error bars does call this into question.
However, even if their statistics are done correctly, when you're doing a bunch of tests (14, or 28 if you include the B6 ones), you still may get one false positive at the p=0.01 level.
I believe sunvox with overstating things said that this paper showed that elevated B1 levels were harmful to humans. Maybe. But there is not very strong evidence of that here.
Read the entire paper before commenting. You are either lying or missed important information.
It is a very involved paper. The conclusions that I drew from it were that higher levels of B1 in the blood were associated with worse cognitive performance, but do you think that it proved that correlation was causation?
It didn't (to me) state that supplementing with B1 had negative effects.
It stated that:
"The cortical atrophy and pronounced functional reorganization associated with B1, contrarily, was more in line with the theory of a disturbed B1 metabolism in older adults, leading to B1 utilization deficits, and thus, an effective B1 deficiency in the brain, despite normal to high-normal blood levels."
It may be that the super large amounts of thiamine that PwP's are taking eradicate the thiamine deficiency in the brain and thus might enhance cognition.
It also may be that those eating diets resulting in high amounts of B1 in the blood may be damaging their brain in other ways.
Diagnosed 2012
My regimen:
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.I
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Join my facebook group:
"parkinson's thiamine hcl"
facebook.com/groups/2322600... …
Parkinson's Relief, Questions and Answers