What is the percent of people with PD that B1 has helped?

[parkie13]

Would any one know of a study or anecdotal evidence of people with PD that B1 has helped?

If it has not helped how many times was it tried and for how long and what dosage?

Thank you

[Gcf51]

"TTFD, could significantly improve physical activities" I question the dose recommended.

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

[RedJY5]

Started taking vitamin B1 about 6 weeks ago gradually increasing dose to 500gm and 500gm x 2 alternate days, my writing has just returned to its larger cursive nature and I’m told by my husband that I appear to be more myself and that I am now lifting my feet when I walk instead of the Parkinson’s shuffle! It’s early days but things are moving in the right direction. I recommend reading Daphne Bryan’s book on this subject.

[parkie13 in reply to RedJY5]

Definitely, if it wasn't for vitamin B1,I would be bed-bound.

[Gcf51 in reply to parkie13]

Most B1ers use high dose B1 as hcl, but how about the under researched B1 in TTFD, I feel results at 16.65mg B1 as in TTFD.

[Dap1948]

In my book “Parkinson’s and the B1 therapy” available from all amazons, I include 30 stories from people having success on B1. On the Facebook group there are many morefacebook.com/groups/parkins...

Often if people report they haven’t been helped, it’s because of some rectifiable reason. I’ve addressed this in my book.

I know this doesn’t exactly answer your question but I hope it helps.

[Gcf51 in reply to Dap1948]

Most B1ers use high dose B1 as hcl, but how about the under researched B1 in TTFD, I feel results at 16.65mg B1 as in TTFD.

[kevowpd]

Multiple estimates put the success rate (and by success i mean some perceived benefit) at 10 to 20%. This would include people who are enjoying a non-placebo therapeutic benefit and those enjoying a placebo benefit. My completely finger in the air assessment is that this range (10 to 20) seems about right.

[Gioc in reply to kevowpd]

I didn't know that the same substance could give a placebo effect for some and a therapeutic effect for others. LoL. Here we are really at the top.

[Kia17 in reply to kevowpd]

Do you mind to tell us where you have found these numbers?

[HekateMoon]

There is a fb group with about 6000 members. Im sure you can have responses there...

[ForViolet]

It helped with my husband's ability to swallow pills almost immediately after his first 500mg dose of thiamine. Happy to hear of the many numbers on the fb group.

[Springbreak in reply to ForViolet]

hello good to know that his swallowing improved. How often does he take the 500mg of b1

[Hikoi]

parkie13

I find questions like this can't and don't prove anything because you do not ask about other drugs specifically levadopa, mucuna and agonists. All will improve symptoms so if you don't know if they have been adjusted or started you have an incomplete picture of the effects of thiamine. Also helpful would be disease duration so you can at least measure reported success against one marker.

[parkie13 in reply to Hikoi]

I was and am taking sinemet c/r

[Hikoi in reply to parkie13]

Parkie have you adjusted your pill regime since starting thiamine, increased or decreased? Are you only taking sinemet CR, no other drugs? Your bio says you have been diagnosed 3 years, correct?

[Juliegrace]

I have written about this in the past but I don’t have the energy to go through my history to find it. I was one of the early ones to use B1 and I was in touch with Dr. C. I took injections for almost a year, adjusting doses and timing with no discernible response. I also tried oral HCL and the sublingual version with no success. Initially I had some jitteriness so I know I was having some response to it. Long term I believe it exacerbated my dyskinesia. It certainly did nothing to alleviate it. I went into it with high hopes and an open mind. However, I recall many people here who reported no response or improvement, but it seems that that is glossed over regularly. I have become quite skeptical (and cynical) about it. I have never been comfortable with the claim that it “stops progression.” Maybe for some people it slows progression, especially if it is taken early on. I have no patience with claims that it is a panacea and that it will work if ‘you just get the dosage right.’ I believe that there are more people who don’t respond than people who do.

[parkie13 in reply to Juliegrace]

I am so very sorry that it is not working for you. My PA wrote to doctor C. and got an email reply. My question was how come my blood pressure was going high? After a while it's stopped and my blood pressure is still not low but it did go down. My blood pressure was always higher. Then my other concern was that injectable B1 h a d aluminum added to it as a preservative. It even had a warning on the leaflet saying that if you are taking a lot you might want to look into it. Dr. C said that in Italy their injectable B1 did not have aluminum in it. So I started on the capsule form of vitamin B1 and another capsule of magnesium. Almost right away I noticed things where better. My balance was so bad I would have to take a step back so I would not fall. I also had the droopy Parkinson's face, my writing was starting to get small, I could not pull my pants up. Once I got into bed I would not be able to move. Vitamin B1 for for me was like a miracle. Thank you to all of you for your shared knowledge. Mary

[ssrs in reply to parkie13]

So do the injections in the US still have the aluminum in them? If so, that can’t be good, at least I don’t think it would.

[Turnipbarrow in reply to ssrs]

The b1 injectable from Canada does not have aluminum in it

[ForViolet in reply to Turnipbarrow]

Thanks. Good to know this. Do you know the brand on that? I'm buying capsules but would like to note that in case we switch to injections. Maybe it's all the brands in Canada. Will note. thanks

[parkie13 in reply to ssrs]

I'm using Vitacost capsules, however I'm sure they still have it.

[Gcf51 in reply to Juliegrace]

Have you tried B1 as in TTDF?

[Juliegrace in reply to Gcf51]

TTFD, yes.

[Gcf51 in reply to Juliegrace]

How did it work for you? Did you pop a few thinking it was B1 as in hcl?

[ion_ion]

75%!?

[Gcf51 in reply to ion_ion]

75%!? in reference to what.....

[Juliegrace]

I’m glad it helped you. There was no aluminum in the B1 i was injecting. I had a prescription from my naturopath to a reputable compounding pharmacy.

[parkie13 in reply to Juliegrace]

I went to my Pharmacy and supposedly they did research and could not find one with no aluminum. I don't think that they are a compounding pharmacy.

[HekateMoon]

I started b1 Hcl with the solgar 500mg. At the time my balance was terrible. My kitchen is small an i was stumbling from side to side. I also had lost rotation of my left foot that was dragging and my left shoulder was in pain. I couldnt turn without taking a few steps. I was depressed. It was the beginning of the pandemia and the neuro had sent me home saying it was nothing.. I knew it was Pd. My mother had it. Within a couple of weeks of taking B1 Hcl my balance was restored i kept increasing. At 2000mg i was able to turn, balance was improved with some exercises my shoulder got better and my brain fog was clearing. My foot started to rotate. It was unsustainable for me to continue with the solgar as i would have had to take 5 enormous pills a day and it was expensive on welfare. I found powder. The taste is bitter. I kept at it for as long as i could. Tremor and central pain were still there. Im still exploring. At the moment taking TTFD but not sure it is the same. Have to find a financially sustainable source or continue with the powder...but defo i got better.

[parkie13 in reply to HekateMoon]

Vitacost has a fairly inexpensive thiamine hcl. You can get a big bottle of capsules. The bottle contains 300 capsules of 500 mg B1. I think this last time I paid something like $29. I hope that helps. This inflation is awful. Mary

[HekateMoon in reply to parkie13]

Thank you Mary. I tried. They didnt send to Ireland. And most of the time they were out of it.

[Turnipbarrow in reply to HekateMoon]

Have you tried dr Clark store to see if they send to Ireland.?

[HekateMoon in reply to Turnipbarrow]

Hi Turnip. Finally i got through to vitacost!!! Happy i got my supply sorted. Thanks

[Turnipbarrow in reply to HekateMoon]

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