This statement was made by an HU forum member.
I challenge whoever believes this statement, or even any less hyperbolic statement, like "B1 improves my bradykinesia", to provide the tap test results to back it up.
(FYI: for info on tap tests, go here: healthunlocked.com/parkinso... )
No worries if it has no basis in reality... if you really believe it, the placebo effect may pull you through! (BTW, this is snark.)
Note, I don't ask that you do a double blind study, with many participants, but if you're feeling ambitious...
Advice: Be very wary of medical advice you receive anonymously on the internet (yes, ironically/paradoxically, that includes this advice from me!).
What your understanding of Sulbutiamine (B1 Vitamin)?
Does anyone have an opinion on the use of Vitamin B1 for treating PD?
High Dose of B vitamins (B1, B2, B3 and B5) in Parkinson Disease
I don't remember that this quote was made even by Doctor Costantini.
Nor do I... But the "pushers" won't let that stop them...
and who is he / she? where is? When? If I said "Look you're wrong" you would like to have the chance to know what exactly and say your reasons. So please tell the person you're referring to. IMHO is more civil than offending.
I fairly quickly found the quote using Google.
It's in the post, "Your doctor knows everything? Of course he knows about Vitamin B1?" that has been active this morning (just scroll down a little bit). I think it is more offensive to call him out by name, and I really address all B1 advocates to "show the tap test results"...
if you don't agree and believe that what he writes is wrong you should go there and make it known to the person.
the person can do two things:
read agree to have made a mistake and correct it;
Disagree motivating why.
Hi GioCas, I respectfully disagree… I am not interested in debating what has become a “religious holy war” with each member of that religion (and I actually have empathy for this specific person)... I just make a meager effort to offer an alternate view to those newly diagnosed that I think there is not much scientific evidence supporting B1 claims wrt PD… And surely, if no one can offer some tap tests results supporting their view, that says alot… But everyone can/will make up their own mind… And like most "holy wars", this one will continue for a long time...
Levod, you are most certainly entitled to your opinion just as everyone else is. There are people, many of which benefit greatly from B1. I, however, I don’t think I am one of them. Just as some, probably most benefit from exercise and good diet. I think I respond well to this criteria. IMHO, because we are all snowflakes and progression is so varied, I basically think “If it works, that’s great!”
When posters write on a soapbox and take firm opinions that either meds are bad, supplements are good, or visa versa, I don’t pay attention, yet they are most certainly entitled to their opinion and post accordingly even if it appears they are writing for themselves.
Sounds to me like you're not being very respectful, "throw the rock and hide the hand" with this post.
If you want to be a debunker, you have to be prepared on the subject you can't just say you're right.
Logically the truth always precedes the lie that is an alteration of the truth, but you have to know what it is.
The history of levodopa teaches.
nature.com/articles/466S6a
Hi GioCas,
Indeed, I have thrown a "rock", but I am not sure what I am hiding...
Also, I think I am prepared on the subject as I have to be, and I strongly believe think I am right, but if I am wrong, that would actually be one of the greatest medical discoveries in the past 50 years, and make me very happy...
But someone needs to show me the tap test (i.e., the evidence)...
Btw, a smart man sent me a private message, "Once your identity is tied up in being the thiamine guy... it must be difficult to ever acknowledge it wasn't what you hoped or thought it was."
This is so true, and why I admire Jim Caster for coming out a few weeks ago, and saying publicly that he no longer believed B1 halted progression...
I am curious, if you consider yourself a thiamine guy? I wonder since you seem to be hyper-analytical and very critical of my post...
LOL
And who's a thiamine guy? a "pusher" of a dangerous cult that eats children?
From thiamine guy to "communist" or "nigger" the step is short.
Sincerely
Gio
By a "thiamine guy" I meant someone who has advocated the use HDT to others, and therefore might feel some embarrassment in walking that back...
Again, another derogatory definition.
I've always spoken with you with respect and friendship, aware that I'm dealing with a colleague with PD, but you prefer to listen to those who incite you against me and do it in a hidden way and maybe they don't have PD.
My story is all there, in my post and replies even recent ones.
My friend, I reply you and your posts because I consider you a person of value to me, like others, otherwise I would not have written you a comma.
Congratulations on your artistic preferences, Rembrandt is one of my favorites.
Now I have to work in my flower shop, here in Italy with my wife help alone.
Take care to yourself.
With respect and friendship
Gio
Hi GioCas:
Thank you for engaging with me... but I think you accuse me of things, but I don't know the basis for... I fear some things may be lost in translation...
FYI, that Rembrandt is close by, in the National Gallery of Art in Washington DC. I also did a copy of that the same painting ~36 years ago, and it hangs in my dining room, but believe my when I say, I am no Rembrandt... I really like the renaissance painters... Raphael is one on my favorites...
Peace be with you.
Gio, eat some bran flakes already, willya?
I’m a tried and proven HDT person and have no reason to walk it back. I have about 3 lbs of it stored and make my own capsules. So you decide if I’m a thiamine guy 😁. I don’t like it... I love it
And how are you now, 2 years later ?
Still hanging on to B1. I stopped for some time and my freezing became horrible. Back on it and it’s gone. Thank you for asking, hope you are well 🙏🏽
I am also a happy user of B1 and I would say my symptoms are totally stable. No cure but I can live with that! I stop three days a month and no bad side effects. Long May it last!
Thiamine alone will not stop any progression, but you can think of it as being one of the team leaders to help close a nutritional gap or provide an emergency backup light. Since you're interested in the science of it, you may be interested in checking out the below book.
amazon.com/Thiamine-Deficie...
Hi resccuema,
Does that, or any other book that you are aware of, suggest and/or provide any proof that Thiamine can be used to successfully treat any PD symptoms?
I don't know what level of "proof" you need, but if the science of why thiamine along with other B vitamins (with minerals) can be helpful, and Dr. Constantini's 2500+ (in Italy alone) patient experiences along with their before/after videos don't speak to you, I don't know what will help convince you. I certainly avoid proselytizing.
I have said what proof - the results of a tap test, that show your ability to move is better after you take B1...
FYI, I have posted a separate post on tap tests here: healthunlocked.com/parkinso...
Have you watched any of the before/after video of Dr. C's patients? Why would that be any less of a proof than a tap test? Also do you have any affiliation with John Turner who runs the site?
I have watched a lot of those videos (over 6 months ago), and I recall not being too impressed.
As I suggested earlier, if what Dr. Constantini has claimed is true, he would win a Nobel Prize for Science, but he hasn't, so I start from a position of peak skepticism
I would be very impressed, if someone on this forum who suffers from bradykinesia and/or tremors ran a tap test both with and without B1 and published the result to this forum. Especially if they video taped it!!!
But I am confident it will never come...
You're correct and you won't be able to gather the data in the fashion that you require. Thiamine is not a drug, and it does not take effect immediately as in l-dopa or other PD meds to perform the on/off mobility test within hours. As in any nutrient therapy that can affect/modify/halt gene expression, the positive benefits, if any depending on the nutrient status, will be noticed slowly and progressively in terms of months. That is unless someone has been thiamine deficient (many are) to the point they ended up experiencing dysautonomia including those of PD's.
That's interesting. I am curious, is this your personal view or that of Dr Constantini?
Anyway, it it not a problem... I can work with it...
I've only learned of Dr. C from this site very recently. This is my own educated view and observation gathered from myriad anecdotal reports of practitioners and patients.
If you're interested, also check out this book on nutrient therapy.
amazon.com/gp/product/B00J7...
Hi rescuema:
I presume "johntpm" on HU is "John Turner".
I am not "affiliated" with him, but I use his levodopa concentration tool very often...
I have great respect for him...
what is this levodopa concentration tool about?
You plug in the type of med, the dose, and the time... the tool shows you the total levodopa concentration at any moment in time... You can easily see the low high and spots...
Proof, at some point of collection of actual cases by an ethical sober doctor, can be assumed even if the actual mechanism is not known or shown, or even shown to be universal once the sample becomes sufficiently large sufficient to overcome pure subjectivity. . That's what Costansini has done. At some point "res ipsa loquitur" occurs. Gravity was known to work a while before it was fully described, yet exception were still known such as oil floating on water and a fart in the wind (or "hot air" for that matter). Your turn now to go eat some bran flakes. On the other hand, "cure" is not a term a competent doctor uses ever without a mechanism, they have and use a vocabulary different from lay subjective or exaggeration and cure" falls outside the vounds of what he has repeatedly said hdt does. Someone else has simply been using that word as a common homonym, that's all.
Dr Costantini is not the only one.that make this discover, however useful it may be ...
neurores.org/index.php/neur...
What is the tap test?
I am glad you asked! I posted a separate post here: healthunlocked.com/parkinso...