I have read so much information on this theme that I should know the subject, but I do not , and the more I read the more I appreciate those professionals that study and research it .
My general understanding is that in the past a diet resulting from a complete lack of a particular vitamin would cause a particular decease . A long ocean voyage without vitamin C would cause scurvy and if left untreated would cause death. The addition of iodine to table salt and thiamine and riboflavin to breakfast cereal are examples of effort to eradicate terrible decease with mandatory additions. However it was noted that it is not necessary when treating scurvy for the patient to eat a barrel of apples. One quarter of an apple or a cup of warm birch bark tea every few days did the job.as long as it was before irreversible damage occurred. The timing of the intake is more important than the amount. The body needs and uses only trace amounts but it must have those trace amounts but has little storage capability and flushes itself very effectively.
Many people tell us that PD symptom severity can be reduced by taking massive doses of a particular vitamin . It is often stated that massive dosage of a vitamin will not do any harm as long as it is not taken for an extended length of time. Both the size of the dosage and the length of time of taking it are not well defined but It is also stated that there are almost zero record of injury or problems caused by the massive doss. I know of no tests having been done to investigate the safety of massive doses and still do not understand the mechanism how mass dose accomplishes the desired results. The people suggesting mass dosage are not doing this for personal gain and are no doubt being truthful and they have experienced real improvements . I trust them, however I believe I have seen patterns over the years ( I have been here much longer than my name) It goes like this.
According to the presenter this substance has changed his life and he feels much better and is without symptoms or discomfort and sometimes has weaned off the formal PD medication and it is probably true. Others write in some confirming a similar experience , others in extreme need of relief. After long discussions a large group is taking the substance but no controls are done. Many patients write in to say it does not work for them and start discussions about what they are doing wrong. This experiment ends with the consensus that it will not work for all and the first presenter admits that things are no longer that great.
I have two suggestions:
(1)- take a Multi - Vitamin with trace minerals every day
(2)- Because this was an un- controlled test with-out professional supervision it is not recognized or followed up, leaving the questions that really need answers.
Why did it work for a short time?
Why did it receive initial support from others experiencing the same improvements?
Has anybody experienced success with slightly different methods?
Was improvement the result of reaction between this vitamin and another and producing a third substance ?
many questions but there is no answers
We need an organized approach over seen by a professional who knows the criteria and methods.
Together we might accomplish something. We have several thousand people with PD ready to act as lab rats if need be. What will it take to do the study correctly?
I have some money in my sock drawer, where should I send it?
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Ahem. The NIH has funded multi-million $$ exercise trials. It is not a patent issue. Individual testimonials about amazing efficacy of B1 or anything else are meaningless scientifically. If you don't know the story of mannitol, in which there were similarly tons of positive testimonials and even multiple successful animal trials, look it up. An eventual human controlled clinical trial of mannitol for PwP showed lack of efficacy.
Ì agree that pharma wouldn't be interested in a profitless study. But I suspect mj fox would have personal motivation ,beyond profit, to fund if he believed in it.
You're better than this. Many many trials have been conducted in regards non-patentable interventions (both re PD and not) and that information is readily available to the general public. Furthermore, whilst the lack of a prospective commercial partner may have discouraged MJFF from investing in the trial, they did offer a number of other fairly reasonable reasons also.
First of all, my admiration for your efforts, a combination of experience, realism, urge to research and above all perseverance. A similar hesitation about for example high-dose B1 supplementation, I encountered with Laurie Mischley. Despite the many positive as well as lesser experiences, she makes no further statement about it than, ‘interesting’. Her methodologies with PRO-PD, especially the “Relative impact on PRO-PD scores with 95% confidence intervals by linear regression adjusted for age, gender, income and years since diagnosis”, maps out what we collectively experience as effective supplements. If anyone could extend this methodology to include the interaction of different supplements, it would be her. A kind of PRO-PD+.
I myself also raised this theme in "Stay vigilant for PD cures." In my opinion, there is no way to tell right now what ultimately provides the improvement because almost no one is limited to one drug or supplement. It does not seem to me to be a sinecure because, after all, there are also people who take multivitamins with 55 different nutrients or as many as 100 different pills a day. But such a methodology must certainly be realized in combination with AI. So maybe send the contents of that sock to Laurie Mischley? Unfortunately, the mine is empty.
Esparanto and MBAnderson thank you for taking the time to respond . I suppose it was more a regret or a rant than rambling. I think it started with U23andMe my first experience with Internet forums . We were convinced that all we had to do was complete some questionnaires with thousands of questions giving our personal detailed profile such as ear wax ,wet or dry , and taste salty or sour and immediately all the common genetic code of people with PD would be known. Or not.
Yes we found the LARK gene , but I doubt if we understand yet how it works . AI , maybe will be a good step but for all its benefits I fear it most of all. It is time to set protocals and take this seriously. You think hackers are a problem , wait untill your own App has evaluated your services and worthiness and turned against you and eventually all humanity.
Every cause, every rights effort, every achievement that we incurred from gay life styles to war, from race to political methods that our generation was so rightly proud of we passed the torch. Only to look back and see it extinguished in the mud and used to prop up extreme WOKE demands that infuriate the other side to action. Now we may never change the direction of human endeavor.
Love and respect to all and thanks to those that tried, but this generation Boomer / Zoomer is almost done and as we take a quick peek back we realize too late that a generation that has not experienced Global war, Great Depressions, Stock market collapse and civil disobedeance can not be ready to stop it from happening again.
If groups are equated at baseline for other supplements, a randomized, blinded controlled clinical trial can be done. To get funding for any trial, evidence of mechanism (not theory but reference to animal studies are okay) An open label study of IM thiamine can't separate placebo effects but effects are perhaps strong enough to argue for a controlled clinical trial (pubmed.ncbi.nlm.nih.gov/265...
Marco Colangeli is organising this fundraising appeal on behalf of HDT Foundation.
£31.303 raised so far for Parkinson’s b1 go fund me.
Daphne Bryan writer of the Parkinson’s and b1 therapy book from Amazon is giving every penny of her book to this fund. Check her weekly/monthly donations. We are doing everything we possibly can to raise money for these trials. There are 7000 success stories on our fb group and more looking for their sweet spot on a daily basis
B1 does not need extrely high dosage. I currently take 50mg twice a week and enjoy all the original improvements I received when I first began my journey..
There is no target. B1 therapy is an individual dose based on many factors. Read Daphne Bryans book from Amazon and watch her utube videos. If you go blindly into it you will fail
Apologies I wasn’t thinking money. The target is €1 million so we have a long way to go but we have volunteers targeting possible funding sources. We just need some big donors because we can’t compete with the pharmaceuticals.
Enter go fund me Parkinson’s B1 therapy to view progress
The target stated is 1 million euros. It's an odd business, this B1 obsession. There are absolutely no restrictions anywhere in the world on using B1 now if you want to. Unlike a new drug, which can only be used if a successful trial leads to authorisation, B1 can be used right here right now.
It's need for "adjustment", "tailoring", or a "sweet spot" does not lend itself to a normal pharmaceutical style double-blind, placebo-controlled clinical trial.
And, such a trial, on a multi-centre phase 3 basis, with maybe 300 participants typically costs 20 million euros (or more) - not 1 million euros
Nearly all the money raised is from Daphne's book. You have to respect and admire the lady for her determination and generosity, but after 2 years, that total is miles away from the target, never mind a realistic sum
And for what? The therapy is "Licensed for use" right here , right now, and there is a large amount of information and support published if anybody wants to try it.
That's true Winnie.Because of its trial and error approach and "adjustment", "tailoring", or a "sweet spot" as well as variations in consumptioñ methods, from one person to another, it does make you wonder what a trial design would look like..
Also what a successful outcome would look like. Would it be a list of participant demographics; the various drugs they are on; and what quantity/source of b1 they took to find improvements or non improvements ?
Then publish so newbies can look up a particular scenario that best reflects themselves
Might be cheaper to set up a web page for experimentors to enter their circumstances and doses that worked.
Suppose that relies on trust due to lack of validation
I'm not discouraging anybody. Far from it. I'm pointing out that if they want to try it, they don't need to wait for a trial to be carried out, never mind authorisation obtained, they can perfectly legally try it right now, and there is plenty of information and support online to help them.The message is don't wait for this trial. Get stuck in now if you want to.
I think the first thing to do is permanently modify diet and exercise regime. If this isn’t done nothing has a chance to work.
I just watched a podcast by an evolutionary biologist who said if trout in a lake all began to die would you set up trials, give them operations and pharmaceuticals. Set up hospitals to treat them? No, people would think you were nuts. You would look at their environment and see how it differs from their ancestral environment and try and get their lake back to a pristine condition with abundant traditional food sources, removing any toxins including unnatural foods in the process.
Humans are biologically animals. So do the same with them.
Reminds me of an old joke: I approached a man who was obviously looking for something on the ground under a street light . I asked him what he searched for and he replied he had lost his keys across the street , but he was looking here because the light was much better.
What you suggest would be a lot of work , we would have to cross the street
Honestly, I feel efforts and monies would be better spent on funding a larger study of FMT over B1. B1 has shown very good benefit in many people and we have seen many responses of zero up to improvements in multiple symptoms, as discussed in the link below, but FMT has shown more potential and it too has a very good safety profile in humans and animals and is already used successfully in humans who have clostridia difficile or very severe IBS.
It has been experimented in many other diseases also with very good results as discussed here :
Going back to FMT and PD, in the few available preliminary studies in humans with PD, FMT has shown benefit that appears to be better than any adjunctive therapy currently available or on the near horizon. The FDA seems to confine use of FMT to C. diff and IBS despite having shown a very good safety profile in humans with recent advances in donor screening and transplant treating and testing using washed fecal transplantation (WFT). Newer FMT studies are moving toward this method.
On a related note, an FMT/PD/human study has possibly completed (scheduled completion in June 2023), but results have not been released yet. I wrote to the contact for that study the other day (August 9, 2023) to inquire about when those results might be available, but the reply was just a message saying that the contact person (Filip Scheperjans) would be away on vacation until October 8, 2023 .
The study is being done at Helsinki University Central hospital and is using the largest FMT/PD study done to date with 51 participants which should offer more useful data than the three previous studies.
So if MJFF realizes the potential value of FMT to significantly improve the quality of life of PwP now, as they should, for the people that it represents and supports, perhaps it will fund a larger FMT/PD study in the US that could help add to the upcoming results from the Helsinki trial. Given the known safety profile of FMT, why would they not fund such a study as this is what they are supposed to be doing with the monies they take in. Here is a link describing the basics of the Helsinki trial :
Note the listed estimated primary completion date of December 22, 2022 and the estimated study completion date of June 22, 2023.
So I feel that B1 is already available with information on how to utilize it for PD, but FMT has shown the potential to do more and is already safely in use in humans with C. diff or severe IBS. It has also been tested in at least 85 diseases and has shown significant benefit in human and animal studies and case reports. Something else that FMT has shown is the ability to correct small intestinal bacterial overgrowth (SIBO) that is seen in approximately 50% of PwP as well as resolve constipation which affects 50 to 80% of PwP.
If the contact from the Helsinki trial ( Filip Scheperjans) contacts me when he gets back, as his message said he would, I will post that information on the forum.
I suggest that we may be well past the time for arguing between cynics and believers of a very large experiment that has concluded with results we do not understand .
I stated above the possibility that everyone is being factual and honest , and it likely may be that it worked for some and did not for others , but that is not reason to form stronger battle lines during the discussion . Opinions are already strong and feelings have been hurt unknowingly and we have already lost people in frustration.
My first sentence in this post was " I have read so much information on this theme that I should know the subject, but I do not , " I suggest that you type in Vitamin B into the Health Unlocked search engine . Thousands of posts, perhaps the most discussed subject we have had.
I have come to the same conclusion over and over .
That I should direct my hope and effort towards Vitamin B Complex as an add on to the Daily multi-vitamin I now take and I will start by taking complex B once every two days
What is the "large experiment that has concluded " that you are referring to?
I'm not arguing, just relating what has transpired on this forum since B1 was first discussed here.
I am well aware of much that is known about PD and B1 as well as other aspects of B1 as I have been writing about it on this forum since I joined this forum many years ago. If you are expecting a trial of B1 for PD, you can wait for it, but the information that has been discussed on this forum regarding B1/PD over years is likely to be much more useful than any single study could ever be. If MJFF determined that they are not going to fund such a study, who will fund such a study and that's just the way it is.
People on this forum and elsewhere have reported significant benefit from B1 and have also reported no benefit from B1.
For now what it comes down to with B1 and PD given the safety profile of B1, try it and if it helps, great and if it doesn't after a reasonable trial period, it is time to look elsewhere because not everyone has responded to B1.
For the many people that B1 is helping , if a study came out tomorrow saying that B1 does nothing for PD, those people are not going to stop using it as long as it helps them.
FMT appears to do more than B1 and other adjunctive treatments based on the preliminary studies.
I can understand that you would like to declare the results of trials by our members using B1 a success . It is not. Your positive and supporting approach has been almost heroic and no one is saying that anyone who finds it helps them should stop taking it. It remains that by my counts more people have reported no improvement than have reported success and we see many changing their reports negatively. It has helped you and others but there may be potential to help a much larger percentage by a more diversified approach because something is clearly wrong , and we are on the edge of something very real because many people have been helped out. You are ready to walk away from it and investigate FMT , and that is fine you are satisfied with the results but I think it is time to build on it is now by stepping back for a second look and asking what did we miss.
It is also worth noting that Dr. Costantini also found that clearly the majority of his patient's in Italy benefited than not. Also Daphne's effort seems it is also showing more benefit than not.
I have a question for you Jim. What are you actually hoping to happen regarding B1 from here?
Yes that is an excellent report by ParkBear , I have read it several times . I hate to point this out but maybe you should read it again, especially your responses.
We need a survey like the ones we completed in U23&me.
This forum like every other has a few members who post often and are very vocal and many that lay quiet. A survey gives you one vote . We need a consensus from anyone who will contribute to the survey that this supplement has a more than some % chance of being beneficial in treating PD and that it is recommended by this membership for treatment of PD. I want the PD associations , neurologists and the world's news sources to acknowledge this.
In my view the good doctor deserved better and we need to remember his name in every post or release of information to the outside world.
The Constantini Parkinson's Treatment ( TCPT )
The world will look after FMT, it is a interesting and novel news filler , first we need to wrap this up
It would be nice to have more input from forum members re B1 considering that there are over 20,000 of them, but that hasn't happened. Assuming that it is as you think and more people do not respond to B1 than do respond to B1, what difference will that actually make? Do you then skip testing of B1 to see if it helps or not because many people do not respond or do you still test it anyway? Obviously a lot of people have responded positively to B1. Given its very good safety profile, it seems like it is worth testing it to see if you can also get a positive response to B1 as many others already have.
I think in the end, many people will continue to test B1 no matter what such a survey might show, for the simple reason that it might work and you haven't lost much of anything if it doesn't.
B1 has lasted the test of time on this forum and beyond while so many others initially have great excitement and have come and gone. B1 is not the new flavor of the month and is still a daily topic on this forum after many years. How many other supplements can make that same claim ?
If you wait for the desired study, poll, questionnaire or survey, you could miss out on improved quality of life , especially if any of those events never happens to take place. From what I have seen as regards PD, there are no cures on the horizon so that leaves improving the quality of life as much as safely possible through things like B1, red light therapy, mucuna pruriens, Restore Gold, specific probiotics, citicoline , riboflavin, melatonin, vibrating gloves, B12, D3, early morning and late afternoon sun exposure, berberine, l-tyrosine, ginkgo biloba, FMT etc.
"It would be nice to have more input from forum members re B1 considering that there are over 20,000 of them, but that hasn't happened. "
I suppose that is the essence of the problem.
" B1, red light therapy, mucuna pruriens, Restore Gold, specific probiotics, citicoline , riboflavin, melatonin, vibrating gloves, B12, D3, early morning and late afternoon sun exposure, berberine, l-tyrosine, ginkgo biloba, FMT etc. "
I don't know what that means, but the things I mentioned have limited studies to show various benefits in PD. You can choose to ignore them, but people with PD have reported benefit from them. You didn't answer my question and instead just repeated what I said.
I get the feeling that no matter what a survey might find about B1, you will never think it is enough. It's pretty simple and doesn't require a lot of thought, test B1 to see if it helps with PD symptoms as thousands have already done and benefited or don't. Trying to make more out of it than that is just a waste of time.
"B1 has lasted the test of time on this forum and beyond while so many others initially have great excitement and have come and gone. B1 is not the new flavor of the month and is still a daily topic on this forum after many years. How many other supplements can make that same claim ?"
Sort of. But sort of not. Firstly, nearly all the many posts are of the "I'm new, how do I go about it?" or "its not working for me, what do I need to change" variety. Which is fair enough, but not a ringing endorsement
Secondly, with the possible exception of the idiosyncratic Royprop, I can't think of anybody reporting benefits equivalent to Dr C's initial "trial" results - never mind posting before and after videos in support. Mostly, after 4 months, "other symptoms" are much improved. It's very subjective - very much "soft" data
It's a bit like brocolli tea. Albert is excited because, even though this therapy which claims to have identified the cause of this disease, and targetted its mechanism, has no effect at all on any of the 4 cardinal symptoms that form the basis of a clinical diagnosis, it's fixed his urinary urgency. Don't get me wrong. I don't doubt Alberts word that he used to have desperate urinary urgency and now, after over a year or so it is completely gone. It's just that exactly the same applies to me - with not so much as a sniff of brocolli tea involved. When I met my Irish friend Jim the other day, the 2 wives were swapping tales of us leaping out of the car at service stations and leaving our wives to park as we run to the toilets. But no more.
The real point being that the anecdotal B1 benefits don't match the original presentation by Dr C and his team. It's much more woolly. And yet it is often presented as though the cure for PD has been discovered and Big Pharma are blocking it. I'm glad a lot of people feel a bit better as a result of taking B1 - but it's not the silver bullet it is often made out to be.
I used to think that might be a way forward because I knew that was what Dr. Costantini wanted in order to help make B1 a mainstream accepted adjunctive treatment for PD, but once I saw that MJFF wouldn't even touch B1, I realized that if the organization that purports to be looking for a cure for PD won't touch it or dedicate funding to test it for PD, I realized that it was highly unlikely that anyone else would.
The problem with a b1 study is the wooliness of the subject. The outcome would give no further information than already out there ie try varying doses and get varying outcomes.An anecdotal summary of current trialists stories might aid/guide people better on how to try it.
Impressive work Art. Both in the initial thread and the subsequent summary. If a graph of the number of responders and the optimal dosage responding to (Just to see the common optimum ranges) were there then id say that's the bones of a 1 million study.
Unfortunately that was all of the information that the forum gave at that time, but it is useful all the same because it shows how B1 benefitted PwP.
Here is one way that B1 can help many people with inflammatory conditions where the inflammatory mediator IL-17 is at elevated levels as is the case with PD and many other diseases :
I have not said what if anything I have been taking besides my prescribed medication and I did that to kinda stay neutral in the discussions .
First , I have found real improvement in my overall condition , cognitivity and attitude / well being and more energy by taking a large chewable multi-vitamin with minerals every day that is for people over 55. This contains (14 ) vitamins , and (10 ) minerals .
Second , I take (3 ) vitamin D3 each day in the spring and summer and (6 to 8) D3 in the winter depending on how often I get out side and the amount of winter tan I get. and more when COVID is around.
Third. I was taking ( 1) B1 a day because the B1 did not seem to do anything when I took (3 ) and I now have to admit that I guess I was taking the wrong B1. I missed that part of the conversations. I will switch from Thiamine Mononitrate to Thiamine HCL and try again.
Fourth. I have found a Complex B that contains
B1 Thiamine HCL
B2 Riboflavin
B3 Niacin
B5 Pantotheic acid
B6 Pyridoxine
Biotin
Folic Acid
B12 Cobalamais
and if I can actually find it or similar in a store I will take it.
There is much discussion on the forums and papers that it may be very important to take trace amounts of all the vitamins and many minerals that act in unison and that the complete B family works together which sounds reasonable to me so I think I should start over as above:
A very small amount of everything (multi)
followed by a larger amount of all B ( complex )
followed by a large amount of B1
which is not a very scientific approach changing more than one thing at a time but unless MJFox wants to be involved who cares.
If anyone is still reading this post I thank you. Sorry it took so long to say nothing much that had not been said before. Think of it as a summery. I will be quiet now.
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