Thiamine and the placebo effect.

[Tfrk]

Does anyone have any information on clinical studies on high dose thiamine hcl and the placebo effect? I am thinking seriously about starting the thiamine protocol and am just curious. Perhaps the answer is that there is no or little downside to taking thiamine - but I have no information on that either. Would appreciate replies with info on either question. Thanks.

[wifeofparky]

although B vitamins are water soluble and easily excreted I also would like to see valid clinical studies as opposed to testimonials

[Hidden in reply to wifeofparky]

You may have a very long wait for such studies at the dosing being used by Dr. Costantini. If you search the internet for thiamine toxicity, you are going to have a hard time finding much data on the subject. There are some side effects as already mentioned on this forum, but side effects reported for standard PD meds seem to be more frequent and more significant.

Art

[wifeofparky in reply to Hidden]

without double blind placebo studies we will never know what really works and at what dosage. Dr C is merely dosing at what he thinks is correct with no real validation or reporting of side effects or toxicity.

We all want that 'silver bullet' and I am skeptical

[Hidden in reply to wifeofparky]

I understand the skepticism! Who will pay for those studies though? They will cost millions of dollars. Dr. Costantini is merely going forward based on the currently known safety of B-1. He is now treating over 3,500 patients with high dose B-1 and has been doing so for over five years with very minimal side effects in over five years of experience. Nobody is making anyone take high dose B-1 and if you want to wait for those placebo controlled double blind studies, you should, for your own peace of mind. I'm just saying it may be a very long wait! Btw, Dr. Costantini's results have been very good and quite a few HU members who have followed his protocol as he recommends in his free email consults, would agree!

Art

[Hidden in reply to Hidden]

What the lady is saying is how on earth one can begin to think thiamine would be any good for anything. I took a few years ago. It wasn't cheap.

[Hidden in reply to Hidden]

I don't know what you paid for the thiamine that you bought a few years ago, but thiamine is inexpensive as witnessed by many forum members who have purchased it this year and reported their results on this forum!

Art

[Hidden in reply to Hidden]

I will give another try then. It was in pure powder, no additives.

[nellie58 in reply to Hidden]

I purchased a years worth of vials and it was 250euro.

[nellie58 in reply to wifeofparky]

If there is enough desperation and if you have come to the end of the road with conventional medication like my husband did, then B1 is a lifesaver. We were staring into a bleak future after our visit with a leading Neurologist. He had not answers at all. Just more drugs with different side effects and the promise of a downward decline. My hubby has improved since our journey started with B1 and I want so badly to go back and show that Dr but no way would we waste the money to pay for the appointment. If hubby was doing ok on regular meds we would possibly not have had this adventure. I am so grateful to this forum and all the brave people that tried this treatment and showed us the way. My wish is that every new patient is put straight onto this protocol. Imagine a world where Parkinsons is stopped in its tracks?

[KLDA in reply to wifeofparky]

When I first purchased B-1, I purchased Nutricost B-1 with mononitrate. the added mononitrate makes it fat soluble. When I discovered this I switched to Solgar.

[Hidden in reply to KLDA]

Solgar monohydrate or thiamine hcl?

Better choice would be easy swallow capsules, 500mg, 300 count. You might choke on Solgar tablets.

[KLDA in reply to Hidden]

I agree RoyProp Solgar are large and difficult to swallow. I purchased these because someone recommended them. Are you willing to recommend a brand? I just checked on Amazon and there appears to be a plethora of choices.

[KLDA in reply to KLDA]

OOPS I just noticed that you said Solgar monohydrate. I'll check this brand out.

[Hidden in reply to KLDA]

no! Nutricost B-1 with mononitrate (should be thiamin hcl)

Vitacost vitamin B1 (as thiamin HCI) 500mg, easy swallow capsules

29$ for 300 capsules.

Vitacost.com out of stock until October;

Last time I checked, 42$ through Amazon but listing may no longer be active on Amazon.

[KLDA in reply to Hidden]

Thank You - I found it (vitacost.com/vitacost-vitam..., good price. I'll be ordering after their new supply comes in in October.

[KERRINGTON in reply to Hidden]

I take 1 at a time, crunch twice, make a face, take 2 gulps of water..swallow... repeat. It's worth it.

[KLDA in reply to KERRINGTON]

I'll try it, can't wait

[Kia17]

I don’t think Double blind placebo trial for Thiamin ever happens.It’s like to say If ever the production of Tobacco or liqueur stop,casinos are closed,corn farms stop producing, big pharma gets well regulated then we can be hopeful for such studies.

[Hidden in reply to Kia17]

It looks like you can get vit B1 on the FDA approved script. Having said that wouldn't you be getting enough from food?

[Lbi1608]

It’s always good to question. Given that there is no cure or perfect treatment plan for all the variations of PD symptoms, I seek progress not perfection. So if there is little to none side effects I give it a try. Even if it is placebo the fact that the body is showing less symptoms is enough progress. Once again it’s personal choice and quality of life that guides my choices

Best of luck

[Tfrk]

Ok - thanks for all the responses. The more perspectives you get, the better informed you are. I appreciate the willingness to share information. I have consulted with my normal neurologist to get one last perspective and double check on drug interactions but I expect I am going to go ahead with Dr. Costantini’s protocol and will post the results periodically on HU. Thanks to all.

[Puneetforjosh]

Start thaimine for one week.then you will never stop.you are engaged in useless thinking,which is giving more pain to the patient.