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.
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.
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"...
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.
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...
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.
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...
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
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.
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.
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!!!
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.
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.
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.
Sad. We'll leave sceptics with their progressive Parkinson's. If that gives them comfort.
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Does HDT stop PD progression or symptomatic relief?
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After starting B1. The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 8th year post diagnosis. See my profile.
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All that you have demonstrated is symptomatic relief and not the stopping of progression.
Well, anything that is helpful and gives symptomatic relief and stops the progression for 8 years is probably better than any other remedy. Why would someone not try it? The proof is in the pudding. What have you got to lose?
Roy Prop many thanks, thank you so much for sharing. What kind of B1 do you take, brand, dossage, injected or oral - etc. Is it provided by your neurologist, do you buy online?
According to Dr. C , THAT is EXACTLY THE WORD that HE has used. STOPS. Not universal or in all cases or degree of disease advancement, but generally. With exceptions or side effects I would presume he means. After all, individuals systems and mutations differ. Not his fault or doing someone else attaches "cure" or "closest thing" to the conversation.
People should not feel obligated to provide proof to you because you’re a cynic. I don’t know if your belief is due to a no response to B1 or if you won’t even try it, but please avoid alluding that people experiencing good/amazing results must all be deluded even if they’re more enthusiastic than others to share the good news.
Nutrient therapy is very real and the current science, esp epigenetics, has proven that vitamins/minerals have tremendous impact on health and brain functions.
The bottom line is that no one here is trying to sell anything and it does not hurt for anyone try the very affordable option to see if they’re one of the responders. Because of the differences in the disease state and genetic makeup, the results will not be consistent, just as there’s no one perfect diet that works for everyone.
It works for some people, it does not work for other people. Don't know why. Wish it would work for everybody. If this works for you , you know how much better you are and how much less severe your symptoms are. For me I am taking way less than I was to begin with. It gives me high blood pressure when I take it with no break for long time. About three different times I stopped it and I started it again when my symptoms got to prior B1 level.
Right now I am taking 500 milligrams of Vitacost thiamine HCL. I skip some days in between when I start feeling like I have had too much.
Hi parkie13, if it "works" for you, please consider running a tap test both with and without B1 and publish the results to this forum, and video of the tests would really be great!
It took four months for most B-1 benefits in my case, which as I understand it is fairly typical. The theory is this is due to improvement in the underlying condition. Going "off of" B-1 for a short period of time is not likely to change this, and you are unlikely to find many who are benefiting who are willing to go off of B-1 for a lengthy duration.
You need to find a different way to measure B-1 results. One possible measure would be how much daily levodopa has been required, before and after. In my case this has dropped slightly since I started taking B-1 two years ago. (This may or may not be due to B-1.)
Thanks park_bear... I got similar feedback from rescuema below...
It meant to me you would get "one chance" to run comparative tests: right before initiation of therapy and after your optimum dose is found... (i.e., assuming you never suspended B1 for a long time therefter, which could possible be an opportunity to repeat it).
I’ve been on B1 for about two years now got off it for about two months recently and had a negative experience all my symptoms came back With a vengeance especially dyskinesia B1 is not a cure But it enhances the effect of levodopa for me that is. By the way I have tremor dominant Parkinson’s (uncontrollable tremors on my right side).
Well, let me see.......improved symptoms, and others have seemingly stopped the progression of PD, what is the issue with B1? Maybe the whole medical paradigm, with non-nutritional approaches is totally out of whack
Maybe, maybe not. I would think most people would want to give it a go. What do you have to lose? Right now, we're struggling with the dose. As long as my husband does not get worse on a dose, we will continue with that dose. When he gets worse, we will drop the dosage down by 50mg.
I disagree with you, from everything I have read. When HDT dose seems to make the symptoms worse, you cut the dose. You keep playing with the dose until the symptoms don't get worse. I believe that 3500 patients can't all be wrong. Sometimes the dose can be accomplished immediately, and other times, it can take up to a year.
I have not said that it, by some mechanism, does not make some symptoms of PD better. I am talking about whether that is actually curative/modifying. There is a difference between symptomatic relief and a halting of progression/cure.
Hi Osidge, sadly I wish it were true. As a type 2 diabetic for over 20 years, I am slowly getting my mind wrapped around the fact that decades of research is coming to a consensus on the link between diabetes and Parkinson's.
I did a datscan 5 years ago and have been on HDT since then, maybe I'll do another one, but I should pay for it all out of my pocket because it is conceived as a diagnostic tool and the IMO accuracy is not so high as to allow a comparison. Frankly I don't feel the need since I already have my positive certainties.
I leave you this problem. since you have also been doing very well for many years. I'd like to know your opinion on the comparison of two datscans after some time.
I do not need any further DatScan as symptoms have not changed since my first DatScan. Where that situation to change then I would have a DatScan then.
perhaps I have explained myself wrongly: according to your experience, the datscan has the necessary precision to be able to compare after 5years two of them made with the unavoidable different operators and perhaps with different machines? thank you if you want to answer.
I was skeptical like you because I'm a science guy and do not believe in miracles and prayers or Gods. But even science results are not all the time perfect because of limitations. Some discoveries were done by mistake. Three years ago I was at the point to quit my job and jump in front of the train. I was like that for almost an year. The tremor bothered me but the non-motor symptoms were killing me. I started B1 and after a month I saw improvements and after another three I was normal except the tremor. I did not take c/l at that time. I started it an year later after starting B1 to control the tremor and it is helping a little (2 or 3x100/25 day).
I made an experiment to see if the placebo effect was involved. I stopped B1 for three months. Gradually the bad non-motor symptoms came back and c/l did nothing to stop them. I resumed B1 and , again, except the RH tremor, I'm OK and still working full time like a software engineer (lately 7 days a week, 10-12 hours/day , proving my brain power is back).
I do not care if the science did not prove the B1 is working as long as it is helping me. I was more concerned if B1 hurt me and the science says it is safe.
I do not know if B1 stops the progression but certainly, in my case, did slow down the PD. Now, entering the fourth year, I fill better than during the first year.
Everyone should have the freedom of expression here and the right to believe in what they want. But no one has the right to minimize someone's else opinion because he/she considers his/hers is better.
"Everyone should have the freedom of expression here and the right to believe in what they want. But no one has the right to minimize someone's else opinion because he/she considers his/hers is better."
I started 1g two times a day - 8 am and 2pm; one time I also took a B complex pill with the second dose and I got BP and never took B complex again and no more BP issues; after 6 months I went to 1g /day at about 1pm. I adjusted the dose based on how I felt , to keep my system stable. Too much make you jerky, not enough you start feeling weak with no energy. For me 1g now looks to be the optimum dose.
Roy, did you stop it for 2-3 days? When I was on 2g I noticed if I stopped for few days everything was going better. So I decided to go to 1g. If that's the case it is possible you take too much.
In my case, when tremor was bad and stopped B1 it was calming down in the following days. It's up to you but in your place I'll give it few more days. If your tremor do not improve that means your are not overdosed. In my case the B1 action against tremor is "very narrow" but any other symptoms are gone. I mean I should hit the perfect dose to minimize the tremor and I'm very close to it with 1g/day.
Yes, it is possible to take too much. Yesterday I was considering stopping my test of temporarily stopping B1. The first day that I stopped, bedtime tremor more troublesome. Each night after the tremor seemed to be less. This morning I have no tremor. I expect it will return as is normal. But the relief from tremor convinced me to go further without thiamine hcl. I worry that other symptoms will raise their ugly head if I go without B1 for too many days. I will risk it in order to further test the issue. When I restart B1 it will be half my normal dose.
People suffer and know from there experience that something helps them and tell other people to try it is this wrong? All the studies show how the prescribed medications make things worse this is proven so why is this done? I suggest all the advocates of studies check who sponsors the study and ask why studies are not made on possible cures that are not mainstream.
Dr Costantini accepts that the problems usually attributed to levodopa are actually problems of progression. He mentions this in one of his papers. This is the current consensus.
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Progression is the answ Doc. Fahn have in his YouTube video Myths and Mistakes in Treatment
I haven't had time to read all the posts but if I dare to lift my head above the parapet waving my B1 flag can I just say that those of us who have been helped by B1 merely want to share our good fortune so that others may enjoy improvements in symptoms. My state - ten years since diagnosis and I have lost all rigidity, have lots of energy, full sense of smell, walk normally... Last night while conducting my choir, one of the singer said "your face is so expressive now"! People don't 'see' Parkinson's when they meet me. I give thanks every day for B1!
I have pictures of myself from few years back, and the difference from before and today is amazing. I do not have quote Parkinson unquote face. But the old pictures show it.
If B1 intake benefits were purely placebo, people would not experience dosage related reactions. See this recent thread where I provide some explanation.
It’s odd to see your statement if you have actually read and understood the 90+ replies. There’s absolutely nothing wrong with people trying potentially beneficial more natural route than doing nothing but depend on pharma meds to help manage PD. An analogy would be “hey, I want you to eat junk diet and give me the tap test result to prove your diet is worth a bother.”
"There’s absolutely nothing wrong with people trying potentially beneficial more natural route ..."I totally agree. There is also nothing wrong with asking for an objective measurement of benefit I would have thought.
My neuro recently did a study on ketogenic diet and pd. The tap test could be a part of assessment for diet and would be interesting.
"There is also nothing wrong with asking for an objective measurement of benefit I would have thought." - I agree.
However, the test is not easily applicable for the B1 therapy because of the length of time required to observe the slow positive benefits that often take months. Same with stopping the B1 treatment - patients eventually report worsening/returning baseline PD symptoms, not just limited to mobility, after being fine for up to several months. An applicable scientifically known comparison would be SAMe vs. pharma SSRI drugs such as Prozac, Paxil, Zoloft, etc. The drugs take effect immediately to inhibit serotonin reuptake but they come with terrible side effects, but SAMe can work just as well for some albeit it takes up to several months to take effect by actually normalizing the brain through epigenetic intervention with virtually no side effects.
The tap test could be applicable for the keto diet for comparing the state of ketosis vs not, which can be within matter of hours or less. For example, state of ketosis allows less utilization of oxygen to dramatically increase the covert underwater dive time by the Navy Seals and prevent oxygen seizures.
Hi ion_ion, I did not challenge you back since my challenge was for motor symptoms (i.e., which could conceivably be tested with a tap test), and not for non-motor symptoms, which is where you benefited from the B1.
And I note, you said, "In my case, when tremor was bad and stopped B1 it was calming down in the following days.". Which, if I understand what you mean, B1 made your motor symptoms worse...
Yes, when PD symptoms get worse even after a long period of positive benefits, it is recommended to stop for a short period because it's a sign of B1 overdose (because you now need less), so a rebalancing act is needed to find the proper/lower dosage.
Not quite true. My tremor got worse if the dose was too high and calmed down after stopping the dose for few days. That was a sign my dose was too big. When I stopped completely all my symptoms came back and the tremor worsened. I found for 1g /day I keep my tremor at minimum.
I’m a bit confused now... as your latest explanation doesn’t seem to match what I thought you said in your original post….
Anyway, I will try to restate things in the simplest of terms...
I start by personally asserting that c/l removes my PD bradykinesia and tremor motor symptoms completely.
And I boldly say it does this same thing for millions of Pwp, every day,...
What do you assert about B1 and your PD motor symptoms? Does it eliminate them totally as c/l does for me? Or does it improve them such that the severity of them is reduced by some amount (eg, 50%). Or???
If you read the FAQ link I shared earlier you’ll have the answer. The benefits are often so subtle and slow to the point it requires the before/after videos comparisons, pull tests, or someone noticing the loss of PD mask, etc. However, for the lucky ones, almost immediate benefits can be noticed, starting with lifting of brain fog, energy level, and improvements in various PD symptoms. Continued progress requires nutritional support.
Hi rescuema: I understood from your earlier responses that it may be a slow change, and take months before things reach a "sort of" equilibrium... but I suggest that if this therapy substantially improves PD motor symptoms, it should be clearly seen by comparing the tap test results before/at initiation of the B1 therapy with the taps test results once you reach a "sort of" equilibrium...
I suppose if you could run a very extended clinical trial and initiate the therapy for new PD volunteers, you will see the symptomatic improvement in some people with bradykinesia just as in RoyProp, but the timeline would differ too much and the only chance you would have for a direct comparison would be the before the clean slate start, at optimal benefit up to a year, and several months after the complete stop when people are back to their own PD baseline that differ per individual. Due to the significant variables and limited applicable sample size, it would be tough if not impossible to draw a solid scientific conclusion based on tap test results. No one would fund such a study status quo and the people experiencing benefits would not likely chance worsen their devastating PD progression to perform as guinea pigs on their own.
As park_bear suggested earlier, a better indicator would be the difference in the amount of PD meds required for the people experiencing various benefits, or monitor the long-term lack of the need to increase the l-dopa or C/L dosage that deduces to lack/stop of further PD progression as many have observed. One must keep in mind that B1 is not a miracle worker on its own - it is simply an enabler (after getting it to cross the BBB) given that one's nutrient/methylation status is adequate to support the benefits while fighting the environmental/age related oxidative stress while keeping keen on the probable nutrient shortage such as the essential B6 while on C/L meds.
Thank you for your insights... But I don't speak of running extended clinical trials, but just a simple way to convince poor souls that Vitamin B1 is not the miracle cure that some people on this site have suggested it is (i.e., "stop the insanity!")...
And I refine my earlier suggestion... I think the simplest way to do this, is to get a few people who won't (for whatever reason) take c/l, but suffer from bradykinesia and tremor, and who would like to see if B1 therapy eliminates these symptoms, and have them start B1 therapy and see if it does anything to alleviate their bradykinesia and tremor (by using a tap test). Note, it would be more interesting if they ran the test periodically (e.g., once a day) until they find their supposed "sweet spot" or they give up...
You need to understand that B1 could easily be the missing link for those who have been suffering deficiency, which is unfortunately common. Anyone who drinks alcohol, high sugar/carb addicts, taking diuretics, diabetics, abuse substance, suffer IBS/dysbiosis, etc., are probably deficient of B1 in their brain (regardless of the blood serum level), which gets exhausted out very easily. If you do not have sufficient catalyst needed for ATP, you can easily lead to a diseased state or simply expire.
For those people, B1 will indeed have miraculous results if you manage to get it past the BBB, just as in many people who suffer subclinical symptoms of Beriberi without ever getting diagnosed. As I've suggested, if you want proof of many case studies why B1 is so important, read the book by Dr. Lonsdale and Dr. Marrs.
For everyone else, the simplest and expedient route is to give it a try and see it for yourself with the very inexpensive remedy.
2. struggled for an year with non-motor symptoms and being at the edge of retiring; I had balance, sleep, concentration, anxiety, depression, constipation, urinary issues; I became quiet with low energy so people could not recognize me (I used to be full of energy and a lot of sense of humor); the RH tremor changed from intermittent to permanent
3. March 2018 I started Thiamine 2g / day - after a week I felt some energy coming back; after a month I felt huge improvement and after two month all non-motor symptoms were gone; tremor stayed but mild.
4. August 2018 I felt more tremor than before - I doubled the dose to 4g / day - in a week I started to jerk bad but I had a lot of energy; one day I took a pill of B complex with the second thiamine dose (2g) and I had a blood pressure episode.
5. I stopped B1 completely after a week of 4g/day - after another week I felt much better; then I made the experiment by stopping the B1 for three months - slowly all the non-motor symptoms came back plus the tremor intensified
6. I resumed B1 but 1g/day in two 500mg doses - after a while I started to take 1g at once at 1pm; everything improved again; I felt a little less energy than 2g period but less tremor; that meant I was close to the right dose; I'm happy the way I feel now.
7. March 2019 I started C/L after a neuro told me it may stop the tremor completely ; he did not buy the B1 theory even if his nurse confirmed that other people reported positive results; sometimes C/L partially helps with the tremor but sometimes does nothing.
8. I never tried coconut oil and I did not believed in B1 either; but if the oil did not make any sense for me I taught to give B1 a try and I do not regret; I plan to work more 5 years from now; nobody at my work place is aware of my condition; but before B1 I looked strange for them as everyone was asking if it was something wrong with me.
9. I also noticed PD is also a psychological disorder - a positive attitude helps a lot; I was doing some stress exercising - I went to a job interview or started arguing with people; I try to control my stress as much as I can and I noticed that 30 minutes after such an episode the tremor stops
"There have been many preclinical studies and one open-label clinical trials that have been done to test its efficacy in Parkinson’s disease which showed positive results. However, we should be careful in our interpretation of the results of that particular study. A lack of treatment and hope for a cure among other reasons lead to huge placebo effects in PD patients. Without a placebo-controlled group to compare against, it is very difficult to conclude whether the improving effects observed in motor scores are indeed significant (real)."
I noticed you deleted a lot of your posts which I think it was not necessary. You have the right of your opinion and some of us have the right to contradict you. And everybody was civilized. I know we ,people with PD, are very sensitive (I was not before) and that's why we need to use a more friendly language. For example I hear people saying they feel better because they preyed to God. Myself I do not believe that but I would not tell someone he/she is wrong or does not have PD. As this disease has a psychological component, too, it is very possible that prayers may help some people.
I taught you left and I felt guilty because I was one of the people who contradicted you. Stay here and feel free to express your opinions!
God Almighty is the living God. He is not a fancy or a fig of imagination. He accepts the sincere prayers and shows signs to them and through them. Using therapies is highly important and recognizing, believing God and praying to God is equally important. May God grant healing to all those who suffer.
Thanks Sir! I respect your beliefs but I believe in science till God proves me I'm wrong. For example, one proof would be by fixing everybody here of this nasty disease. I won't believe in something based on the fear I'll be punished later.
In this seemingly open and shut case, the simple scientific objection to the raised question, not termed as such by Dr Costantini, is that of the time needed for metabolism to switch from catabolism to anabolism. Hence, "Refeeding, Paradoxical Reactions, and Side Effects". That's all there is to it, Levod. See what Dr Londsdale says about it:
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Supplement Cocktail is working (Massive B1 OD) or is it the Fatty15
Life is the cure
Is there a PD personality type?
This is a frivolous post, but for me it's important.
