High dose b1? : I hear a lot about high... - Cure Parkinson's

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High dose b1?

Kt088 profile image

I hear a lot about high dose b 1. How many mgs does that mean a day? Thanks

50 Replies

Today I got Diarrhea from high dose B1. I guess it was toooo high 🤣🤣🤣🤣

MissRita profile image
MissRita in reply to nedim

Lmt How much did you take?

nedim profile image
nedim in reply to MissRita

4-5 g with 1 liter of water....maybe too much but I like how it makes me feel, full of energy and kinda positive....

MissRita profile image
MissRita in reply to nedim

Lmaoooo I can take that in any given day and it doesn’t do anything to me LOL but I wish it did!!

MarionP profile image
MarionP in reply to nedim

This was your starter dose? Any other effects, hoped for or otherwise?

highdosethiamine.org/

b14pd.com/

medium.com/eds-perspectives...

facebook.com/groups/2322600...

healthunlocked.com/cure-par...

B1

.

We have 6,000 worldwide members. No fee.

"Parkinson's disease relief”

Parkinson’s thiamine hcl m.facebook.com/groups/23226...

Here is a link about everything you need to know about dosing and the use of B1 along with all the information that Dr. Costantini left with our forum:

healthunlocked.com/cure-par...

It may be helpful for you to know that the effective dosing range reported on this forum is :

25 mg ~ 4000 mg of B1 per day.

Art

Hanger112 profile image
Hanger112 in reply to chartist

25 - 4000? In what reality can a doctor prescribe some people 160 times the dose that others are taking? Patient 1: Here, take one of these a day with water. Patient 2: Here, take one hundred and sixty of these a day with water.

It's nonsense.

chartist profile image
chartist in reply to Hanger112

What is nonsense is that neurologists rarely if ever even consider B1 for their PD patients, assuming they are even aware of it, which they usually are not, as mentioned regularly on this forum. The B1 conversation has been on this forum for years with a lot posts from 100's of forum members who are either testing or using B1. It is easily the most discussed supplement on this forum. B1 has an excellent safety profile, even at high dose. Clearly it does not work for everyone, but the same can be said about Sinemet, the gold standard for PD for over 50 years. Sinemet or B1, for those who they work for, they will never be without them. They both have shown the ability to improve quality of life for PwP on this forum and given that there is currently no cure, improving quality of life is very important.

Art

Hanger112 profile image
Hanger112 in reply to chartist

Why should neurologists take B1 seriously, when there is no rational dosing regime and when almost all the evidence to support it is anecdotal? Furthermore, people who take B1 can't even agree on which type to take, never mind the dose. Dr Consantini said take HCL because it breaches the blood brain barrier, but he also said it's okay to take Bentofiamine if you can't get HCL. Bentothiamine doesn't cross the BBB. So his logic collapsed on the basis of availability rather than efficacy. He also said it works best with drugs like levadopa, which makes me question the videos he produced. Were those people's symptoms really diminished by B1, or was it most, if not all down to drugs that have been around for decades? The only type of thiamine proven to enter the brain is Allithiamine, but that in itself doesn't prove it helps with PD. And some 'scientists' and storytellers here say don't take it because it is potentially toxic over time. Dr C. said it might be which was partly why he prescribed HCL, but he didn't really know how much HCL you can take per day until it kills you; others say Allithiamine isn't toxic in 'large doses', whereas the truth is there hasn't been any peer reviewed studies either way. This leads me to question comments like this:' B1 has an excellent safety profile, even at high dose.' You say this as if it's a fact founded on singular parameters, but what is a 'high dose?'. And are you referring to doses of Bentothiamine, HCL or Allithiamine? Given the latter enters the brain, Bento doesn't and HCL might only transport 10% of the dose to the brain, then your dosing range becomes even more absurd. 25mg of Bento versus 4000mg of Allithiamine? Which is 'safe' or effective? Is 8,000 mg of HCL safe? Dr C. died before anything was proven about safety. I posit nothing has be proven about efficacy either, when some people claim benefits at 25mg, and others feel nothing at 4000mg, What if the person taking 25mg took 4,000mg? Would it constitute a potentially dangerous massive overdose, or would they safely shit out the 3,975mg they don't use? If the person getting no benefit from 4000mg of HCL took 10,000mg, or 50,000mg of Allithiamine, would that be a 'safe' large dose? Do you actually KNOW anything, or has your long term addiction to this forum made you a slave to contradiction, misinformation, anecdote and supposition?

GioCas profile image
GioCas in reply to Hanger112

I do not know where you get all this information on what Dr. Costantini said, but I have never heard of him using benfothiamine or allithiamine, what he prescribed for me are two intramuscular injections of thiamine hcl per week. I have been following this protocol for six years, it helps me a lot and no subsequent neurologist has changed it for me.

Everything else is a conflict of interest and does not help the Pwps.

There is the truth and also the way of transmitting the truth that cannot prescind the intentions of person , those who do not help are not friends with PWPS.

bullet65 profile image
bullet65 in reply to GioCas

Nice to hear from a patient of Dr. C, I am in Canada and have to use oral B1. My neurologist is not a fan of any new unproven therapy but I hope it helps.

GioCas profile image
GioCas in reply to bullet65

Former patient 😢, but there are others here.

For me it worked (i.e. it improves symptoms and delays progression even if the super precise of the web will have to complain 😀 ), otherwise I would not be here writing about it .

I use 2 injections a week of thiamine hcl / 100mg. It's pretty simple, my wife makes them for me and it's inexpensive, but it takes a prescription. I also tried the pills, they work but in my humble opinion you have to take the dose every 4/6 hours to cause a peak in the dose you need (see graph).

researchgate.net/figure/Ora...

I cannot vouch for others because I don't know what else they do or don't do, rightfully at their choice and judgment.

A warm greeting from Italy.

Gio

in the photo, written in anamorphic art. en.m.wikipedia.org/wiki/Ana...

Como lake italy
Hanger112 profile image
Hanger112 in reply to GioCas

The information of what Dr C said is easily found. I'm surprised you haven't done the research given you were a patient of his.

GioCas profile image
GioCas in reply to Hanger112

I'm sorry to disappoint you, I'm Italian, I know well what he said in my language but it may be that what you are saying has escaped me. You can help me find them if you want, like others could help you, no one is perfect.

I am sorry that you have recently been diagnosed, the diagnosis was the most difficult moment for me, unfortunately confirmed by a DAT SCAN.

Have you been confirmed by a DAT SCAN? What symptoms have you been diagnosed with and how many years have you had them? Usually neurologists are cautious about diagnosing PD because it's not an easy diagnosis, I suppose he used C / L.

Kia17 profile image
Kia17 in reply to Hanger112

The same way we don’t know how PD and many of other chronic diseases initiated we donot know how HDT is effective but IT IS with no doubt. we have hundreds of testimonies from people around the world that they benefited from HDT.Not everything should fit to our logic to accept because we donot know even how the PD is developed and if does not fit we cannot simply deny it.

The same way Ldopa doesn’t work for everyone the HDT might not work for every PWPD but as far as I can see more people benefiting than those claim they aren’t.

kevowpd profile image
kevowpd in reply to chartist

Fortunately, neurologists require more evidence than ted-from-bangkok might.

You say it's nonsense that neurologists won't "consider" B1 yet the primary source of "evidence" you lean on are the observations of Dr Constantini, which he (not me) summarised as such:

Summarizing, out of the 2,500+ patients we have treated we found:

Relevant improvement of motor and non-motor symptoms;

The disease does not seem to progress;

Absence of insurgence of complications due to long-term use of L-dopa;

No collateral effects or alterations of the results of blood tests.

It cannot possibly have escaped your observation that these supposed results have not been replicated in the broader community of people that have trialled B1 in any meaningful way. In other words, they are not reliably replicable. Add on the fact that he claimed it was effective in 100% of his patients and things start looking particularly bleak.

If a "pharma" company drew and published these very same conclusions (prevents both Motor Complications and disease progression) for a new drug that then delivered as inconsistent results as B1 does, you would be amongst the first to give them a good lynching, to question their ethics or accuse them of putting profit over people. But because, i guess, you have an idealogical preference for the "natural" (as an aside, I don't accept that taking 4 grams of thiamine is particularly "natural" since it would be impossible to do so using plants or meat, but that is another topic), you are willing to ignore the rather obvious and valid questions people may have about the observations that form much of the evidence you put forth.

Kia17 profile image
Kia17 in reply to chartist

👍👍

MarionP profile image
MarionP in reply to Hanger112

Boy you ever late to the party. Why don't you do a little reading, starting with the bits about Costantini. Or not, nothing says you have to benefit from anything. You can just suffer in pride. You may value your symptoms that much. Fine.

By the way, you purchase it over the counter, thiamine HCL, unless you want to have it done by injection, in which case you have to convince a doctor to prescribe it, and the doctor won't prescribe in the first place if/she doesn't think it's appropriate.

Hanger112 profile image
Hanger112 in reply to MarionP

'late to the party'? I apologise for only having been diagnosed with PD a couple of months ago. Getting a recent PD diagnosis is very hard to cope with; I have done far more than 'a little' reading on Consantini and B1. It is precisely because I DO NOT 'value' my symptoms and am desperate for relief, that I did the research, but discovered it to be littered with so many vague terms and contradictions, that I feel worse for knowing. Your comment clearly implies that if I take high dose HCL I WILL feel better, but elsewhere you say/acknowledge it doesn't work for everyone..... No reasons why, nor indication of success versus failure percentages; just vague assertions I would love for B1 to work for me, but I do not have unlimited funds to spend on supplements, so am not going to invest. Indeed, because of my symptoms, my income has dropped to near subsistence. I do not have the luxury of tinkering with types and doses of B1 when the evidence for its efficacy is so substantially undermined by the contradictions presented on this forum and out in the real world. You now present the word 'appropriate', based on the subjective opinion of individual doctors, without stating why any doctor would deem B1 inappropriate if I'm to believe the notion of DR C and his congregation, that 'high dose' HCL is harmless. As 'kevowpd' said, Dr C.'s claims have not been anywhere near replicated, even here on this forum. If it really did work for 100% of 2,500+ people, I'd spend my last penny on B1 HCL, but all you really have is something you obviously put a lot of value on. Your party!

ForViolet profile image
ForViolet in reply to Hanger112

That's not how it's prescribed. That's silly.

Hanger112 profile image
Hanger112 in reply to ForViolet

What do you mean by prescribed? And what do you mean by 'it'? If by 'prescribed' you refer to Dr C's prescription, why don't you explain his contradictions? If by 'it', you mean B1, why don't you read my post again? You might learn something; principally, there are at least three types of 'it'!

For those members that have skeptics:

“[34]. Only minor side effects, such as nausea and indigestion were reported in patients given doses as high as 7.5 g/day [35]. Thus high dose thiamine supplementation may be a safer and more tolerated treatment option.”

High Dose Vitamin B1 Reduces Proliferation in Cancer Cell Lines Analogous to Dichloroacetate

Bradley S. Hanberry, Ryan Berger, and Jason A. Zastre

Department of Pharmaceutical and Biomedical Sciences,

College of Pharmacy,

University of Georgia,

R.C. Wilson Pharmacy Building, Athens, GA, 30602 USA

*To whom correspondence should be addressed. (Phone: 706-583-0290 Fax: 706-542-5358 ude.agu.xr@ertsazj)

“The dichotomous effect of thiamine supplementation on cancer cell growth is characterized by growth stimulation at low doses and growth suppression at high doses.”

ncbi.nlm.nih.gov/labs/pmc/a...

Hanger112 profile image
Hanger112 in reply to

If B1 kills cancer, but can't kill my tremors and fatigue, it's bad news as I'd rather die of cancer soon than put up with PD for 20 years or more!

Read the info here that charterist alludes and ignore those that cannot see the light unlike Dr. Costantini some of the critics here have their own agenda

It works for me. Gd luck

'cannot see the light'.... Jeez, this B1 party is a religious cult!

I do not write with "religious overtones'. Unlike you i was trying to support someone seeking help and advice.

Unlike you, I was offering helpful advice i.e. There are several types of B1. It's important to know the differences in order not to be misled as to what constitutes a high dose. AND just because my rational conclusions disagree with the faith based conjecture and misinformation of others, doesn't make that advice unhelpful. In fact, what is very unhelpful is people you like telling others to 'ignore' criticism, even when it is valid! Now go back to your pulpit, vicar!

Well done you are by far the rudest person i hv met on here. You must be so proud!!

You confuse rudeness with frankness. But that's your problem not mine. Anyway, you must have a big ego to expect me to be nice to you after reading your initial comment. You told everyone to ignore me and listen instead to someone whose main claim I had rationally and factually debunked. This is not only rude of you (which I can put up with), but wilfully ignorant (which I can't put up with), for it must also be noted that no one has challenged the actual points I made. Not you, not chartist, not anyone. All you collectively have, are attacks on my manner, and lies about my motivation, so I'm disinclined to turn on the charm in the face of such responses.

I am not writing any comment here, Beyond saying, my book “Parkinson’s and the B1 therapy” is nearing completion and I hope to have it published in February. It is well researched. I have been working with Marco, Dr Costantini’s colleague. It discusses at one point, why oral doses are so wide-ranging. Sublingual and injections are not.

MarionP profile image
MarionP in reply to Dap1948

That will prove most interesting, please let us know, or at least me, when it's ready.

Dap1948 profile image
Dap1948 in reply to MarionP

I will post on here when it’s out. It’s aimed at people with Parkinson’s but also their health professionals. The challenge has been to make it scientific enough to satisfy the latter without losing some of the former. Marco thinks I’ve got it just right! We so need funding for a double blind placebo controlled study, which is planned by the group in Italy. I hope the book will help spread the word and hopefully answer some questions.

Hanger112 profile image
Hanger112 in reply to Dap1948

That does indeed sound interesting. I look forward to reading it.

WinnieThePoo profile image
WinnieThePoo in reply to Dap1948

A double blind placebo controlled study is never going to happen until a dosage formula has been established. You need the phase 1 before you can move onto the phase 2And nobody seems to be capable of determining a standard dose.

Core to the B1 success is determining the right dose by observing reaction to the supplement. You can't do that blind. Never mind double blind.

GioCas profile image
GioCas in reply to WinnieThePoo

I think they will use intramuscular injections as per Dr. Costantini's standard protocol.

Dap1948 profile image
Dap1948 in reply to WinnieThePoo

They are also considering using sublingual because, like injection, the right dose is not as variable as oral thiamine as it’s not at the mercy of people’s unpredictable digestive system.Btw I’ve got two chickens called Winnie and Pooh!

What about sub lingual? How much do you take?

Dap1948 profile image
Dap1948 in reply to MagsRo

My advice is to start on 1 x 100mg a day. For many people, this dose is it. It must be taken correctly though. Have you my instructions?

MagsRo profile image
MagsRo in reply to Dap1948

No

Dap1948 profile image
Dap1948 in reply to MagsRo

Taking sublingual tablets...

1. Drink a glass of water first thing. Before eating, drinking or cleaning teeth.2. Wait ten minutes

3. Place tablet under tongue. It will dissolve quickly. Try not to swallow it.

4. Do not eat or drink anything for 30-45 minutes. Allow the dissolved tablet to pass through the skin and enter the bloodstream.

JeanieBeanie profile image
JeanieBeanie in reply to Dap1948

Where do we buy it in UK?

Dap1948 profile image
Dap1948 in reply to JeanieBeanie

I’m in U.K. and I buy from pureformulas.com/no-shot-b-...

Kt088 as you can see there are opinions and knowledge across the board on this. I started out taking 2000mg a day and "thought" I was having off time in the morning as my resting tremor in my right hand would be worse, so I increased my lunch dose from 1000mg to 1500mg. It was suggested to me that maybe I was actually taking too much, so I stopped taking it for a week and started back this week on 1000mg a day. I'm only on day 3, so still in the waiting phase.Bottom line is it think it helps once you find the right amount that YOUR body needs, but you'll have to be patient while figuring out the dosage as everyone is different.

Hanger112 profile image
Hanger112 in reply to SAGoodman

I would be interested to know what improvements you get, when and if you get any. Bottom line, your results so far give no reason to think it helps. Seems like you're angling for a placebo effect. But of course, if that changes, then it is of interest to sceptics as well as the faithful.

I just wish that there were people in this PD group, or any group, who had taken high-dose thiamine for 15, 20 or 30 years and could tell us about their experiences. In fact, I wish there were dozens of people in that position, but there aren't. The most I can find is someone who started taking HDT about six years ago. That isn't long enough for a person to determine the long-term consequences of HDT --- and several hundred people's experiences would be much better than just one. Even if the absence of trials, a few hundred people who had been taking HDT for 20-plus years successfully and without side effects would be much more reassuring than those currently online who have been taking it for only the past couple of years.

If only we could talk the Fox Foundation into studying HDT, but they have declined to do so.

If you start now, then in 15 years time, someone will look at your case and be reassured.

Have they said why they won't?

kevowpd profile image
kevowpd in reply to Hanger112

Some aspects of the proposal were considered unrealistic and the proposed team had limited to no experience running trials of the proposed size. There were a couple of other things mentioned that I don't recall. It did get through the first level of review, so it wasn't dismissed out of hand.

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