Parkinson's Disease Tulip


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Old 02-23-2015, 09:08 PM #1
lurkingforacure lurkingforacure is offline
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Default experience with benfotiamine so far

Having found no one yet who will help us with the daily injections of thiamine referenced in another thread (http://neurotalk.psychcentral.com/sh...light=thiamine) we bought some benfotiamine and have been taking it fairly regularly for about a week and a half (1 pill am and 1 pill pm).

Observations (granted, they are subjective)
more mental alertness/clarity/sharpness
more interest in everything
more brain energy, for lack of a better way to explain it
more physical energy as well

This translates into less brain fog, less apathy, better mood. If we miss a dose, we can tell. It is subtle, but there.

The downside is that we aren't sure if it interferes with sinemet I know B6 does, but am not sure about B1. And I know we are absorbing only a fraction of what we are taking orally, so I am continuing to look for someone who can help us with the injectable form of thiamine.

Has anyone else tried this?
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Old 02-23-2015, 11:49 PM #2
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Originally Posted by lurkingforacure View Post
Having found no one yet who will help us with the daily injections of thiamine referenced in another thread (http://neurotalk.psychcentral.com/sh...light=thiamine) we bought some benfotiamine and have been taking it fairly regularly for about a week and a half (1 pill am and 1 pill pm).

Observations (granted, they are subjective)
more mental alertness/clarity/sharpness
more interest in everything
more brain energy, for lack of a better way to explain it
more physical energy as well

This translates into less brain fog, less apathy, better mood. If we miss a dose, we can tell. It is subtle, but there.

The downside is that we aren't sure if it interferes with sinemet I know B6 does, but am not sure about B1. And I know we are absorbing only a fraction of what we are taking orally, so I am continuing to look for someone who can help us with the injectable form of thiamine.

Has anyone else tried this?
I have been taking Benfotiamine for about 3 weeks now. The main thing I noticed was that my voice strength is back. It used to get softer when my dopamine levels were lower. Now it's strong everyday, which my wife has mentioned to me a number of times the last 3 weeks. Tremor is still about the same to slightly diminished, but I've noticed I seem to have more muscle strength when I do pushups, bench press weights, jog etc. I do 4 sets of 10 at a particular weight and have been able to increase that twice now to a higher weight (from 83 to 93 pounds) and am ready to up that again another 5 pounds this Friday I think. Also, my restless leg has diminished about 80% and seems to flare up when I eat sugar or bread. Sugar depletes thiamine so that makes sense to me. So far so good and can't wait to see what happens in the weeks ahead.

Lurking, I hope this helps and hope Benfotiamine continues to help your situation as well!
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Old 02-24-2015, 03:56 AM #3
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Originally Posted by zanpar321 View Post
I have been taking Benfotiamine for about 3 weeks now. The main thing I noticed was that my voice strength is back. It used to get softer when my dopamine levels were lower. Now it's strong everyday, which my wife has mentioned to me a number of times the last 3 weeks. Tremor is still about the same to slightly diminished, but I've noticed I seem to have more muscle strength when I do pushups, bench press weights, jog etc. I do 4 sets of 10 at a particular weight and have been able to increase that twice now to a higher weight (from 83 to 93 pounds) and am ready to up that again another 5 pounds this Friday I think. Also, my restless leg has diminished about 80% and seems to flare up when I eat sugar or bread. Sugar depletes thiamine so that makes sense to me. So far so good and can't wait to see what happens in the weeks ahead.

Lurking, I hope this helps and hope Benfotiamine continues to help your situation as well!
What is your dose of benfotiamine and how many times a day? Do you take it in the pm or am? Do you take Sinemet?
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Old 02-24-2015, 08:28 AM #4
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What is your dose of benfotiamine and how many times a day? Do you take it in the pm or am? Do you take Sinemet?
I take 500mg in the am and 500mg in the pm but I started slow with 250mg first. I also take Sinemet 3 times a day 25/100.
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Old 02-24-2015, 02:25 PM #5
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I take 500mg in the am and 500mg in the pm but I started slow with 250mg first. I also take Sinemet 3 times a day 25/100.
Wow, these are some positive results. Zanpar and lurking, thank you for taking the time to share with the community.

My mom started benfotiamine about two weeks ago and hasn't noticed any good effects yet (no bad effects either, though). She takes 300mg in the morning and 300mg in the afternoon. Maybe we'll take up her dose a little bit...

Thanks again for the updates.
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Old 02-24-2015, 04:15 AM #6
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Quote:
Originally Posted by zanpar321 View Post
I have been taking Benfotiamine for about 3 weeks now. The main thing I noticed was that my voice strength is back. It used to get softer when my dopamine levels were lower. Now it's strong everyday, which my wife has mentioned to me a number of times the last 3 weeks. Tremor is still about the same to slightly diminished, but I've noticed I seem to have more muscle strength when I do pushups, bench press weights, jog etc. I do 4 sets of 10 at a particular weight and have been able to increase that twice now to a higher weight (from 83 to 93 pounds) and am ready to up that again another 5 pounds this Friday I think. Also, my restless leg has diminished about 80% and seems to flare up when I eat sugar or bread. Sugar depletes thiamine so that makes sense to me. So far so good and can't wait to see what happens in the weeks ahead.

Lurking, I hope this helps and hope Benfotiamine continues to help your situation as well!
A 2012 US study, available at http://www.biomedcentral.com/1472-6904/12/4, and perhaps valid also in the benfotiamine context, confirms the bioavailability of oral thiamine without saturable limit up to 1500 mg.
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Old 02-24-2015, 06:30 PM #7
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Originally Posted by lurkingforacure View Post
Having found no one yet who will help us with the daily injections of thiamine referenced in another thread (http://neurotalk.psychcentral.com/sh...light=thiamine) we bought some benfotiamine and have been taking it fairly regularly for about a week and a half (1 pill am and 1 pill pm).

Observations (granted, they are subjective)
more mental alertness/clarity/sharpness
more interest in everything
more brain energy, for lack of a better way to explain it
more physical energy as well

This translates into less brain fog, less apathy, better mood. If we miss a dose, we can tell. It is subtle, but there.

The downside is that we aren't sure if it interferes with sinemet I know B6 does, but am not sure about B1. And I know we are absorbing only a fraction of what we are taking orally, so I am continuing to look for someone who can help us with the injectable form of thiamine.

Has anyone else tried this?
Dear brothers, after an initial moment of euphoria, followed almost immediately by strong skepticism about the actual effectiveness of this therapy, last night I decided to write an e-mail to the first author of the paper.
Shortly after, he responded, telling me to go to his clinic, and to try its protocol because not only improve the symptoms (motor and non-motor) and improve the response to drugs, but even (here I was about to cry) stop disease progression.
Tomorrow morning I'll call him immediately on the phone for an appointment
Lurking sorry for the delay in response. I will keep you updated.as soon as possible.
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Old 02-24-2015, 09:17 PM #8
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Originally Posted by sim00 View Post
Dear brothers, after an initial moment of euphoria, followed almost immediately by strong skepticism about the actual effectiveness of this therapy, last night I decided to write an e-mail to the first author of the paper.
Shortly after, he responded, telling me to go to his clinic, and to try its protocol because not only improve the symptoms (motor and non-motor) and improve the response to drugs, but even (here I was about to cry) stop disease progression.
Tomorrow morning I'll call him immediately on the phone for an appointment
Lurking sorry for the delay in response. I will keep you updated.as soon as possible.
I hope you get some relief with this, please keep us posted on what you experience
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Old 02-25-2015, 08:15 AM #9
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Quote:
Originally Posted by sim00 View Post
Dear brothers, after an initial moment of euphoria, followed almost immediately by strong skepticism about the actual effectiveness of this therapy, last night I decided to write an e-mail to the first author of the paper.
Shortly after, he responded, telling me to go to his clinic, and to try its protocol because not only improve the symptoms (motor and non-motor) and improve the response to drugs, but even (here I was about to cry) stop disease progression.
Tomorrow morning I'll call him immediately on the phone for an appointment
Lurking sorry for the delay in response. I will keep you updated.as soon as possible.
i am of course skeptical about anyone who claims an otc supplement can slow progression, anyone can say that. let us know what his fees are.
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Old 02-25-2015, 09:10 AM #10
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i am of course skeptical about anyone who claims an otc supplement can slow progression, anyone can say that. let us know what his fees are.
What we are looking at/for is not OTC. The amount of thiamine we are looking at taking would be almost impossible to take via pills, it would be the equivalent of something like tens of thousands of milligrams with all of that filler and capsules to have to contend with on top of the chore of swallowing everything.....several times a day, no less.

Add to this the fact that around 70% of PWP don't have the same (or any- Fox Foundation's study abstract wasn't clear to me on this) of the Prevatella bacteria in their gut which relate to thiamine, and I don't think it's too far of a stretch to say that perhaps taking oral thiamine might not be as beneficial (if at all) as taking it another way where it can bypass the compromised guts in the large majority of PWP.

Plus, I am not aware that we can get injectable thiamin in the US without a script

I know you mean well, ST, and appreciate your skepticism
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