Today September 12th 2018 is the one-year anniversary of my left hand tremor. I diagnosed myself as having Parkinson's disease. Six months later I was diagnosed buy a Veterans Administration neurologist that I had Parkinson's disease and I was given a prescription of 5 /50cl and was told to take it as needed.
Well, so far I have needed it but not taken it ever not even one pill. In May of this year I heard the radio broadcast from Parkinson's recovery with dr. constantini and without his input, I started myself on a dose of 1000 mg of thiamine mononitrate once a day. I had to stop taking this medication because it caused me to break out with a severe rash. Early this month , I heard a rebroadcast of the radio program and learned that thiamine HCL was the proper vitamin that I needed to take for the constantini protocol. I emailed dr. constantini, describing my age weight and symptoms, and he wrote back to me recommending that I start on program of 2 grams of thiamine HCL per day, taken 1000 mg in the early morning and 1000 mg at noon.
Today is my 5th day of that regimen, and so far I have noticed no change in my condition. dr. constantini requested that I contact him after about 2 weeks with a progress report. I intend to do that and I also intend to post on this site any change in dr. Constantine's recommendation and any change in my condition.
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I was dx 2012. This year, 2018, Doc Costantini prescribed 2g morning and 2g afternoon. Today, No more slow movements since adopting thiamine hcl. The positives: 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...still have mild tremor.
thanks for the reply sir. and for keeping it simple. today i tried my first 5/50 cl tablet, but it had no positive or negative effect on any of my symptoms. I took the pill because the fingers of my right hand are now starting a very slight tremor. will get in contact with my neuro to hear what she recommends. undecided as to whether to tell her about the b1 protocol but my gut says "mute"
Dr. C's protocol has no evidence other than people on this forum and his own claims. Not one other forum, research facility, doctor, or medical entity has any proof that thiamine is helpful. On this very forum one poster claimed he was associated with a medical facility in Italy and at that facility they discovered that only a fifth of the patients who tried thiamine felt any benefit.
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On the other hand there is an enormous amount of research showing that the latest form of vitamin B3 called Niagen actually acts on a persons body to increase NAD+ which is crucial to cellular life, and furthermore this form of B3 worked in animal models and fly models to reduce symptoms in numerous neurological disorders INCLUDING PARKINSON's, and most importantly the vitamin has proven safe in HUMAN CLINICAL TRIALSs at levels up to 1000 mg daily.
The exact same is true of Theracurmin which actually was studied by the MJFox Foundation and found worthy of further research for Parkinson's.
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The point is if you are looking for effective treatment for Parkinson's in the form of natural supplements thiamine is low on the list of supplements with real scientific proof of acting on the underlying root cause of most cases of Parkinson's. This is fundamental to all my posts. According to one developing Grand Theory of Parkinson's mis-folding mutant alpha-synuclein is the one common cause in the large majority of Parkinson's cases. What this means is that any molecule that acts to clear out mis-folded proteins will help the disease, and THAT underlies all my posts.
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Everything I am saying here is backed up with extensive scientific research, but I am far too tired of this conversation to take the time to post them all here. If you want to explore a combination of supplements that actually have scientific evidence that they might help then click on my name or avatar and start reading the links I have posted. The short version of all the links is this: I recommend you talk to your doctor about mannitol, niagen, and theracurmin. I do believe thiamine should be included as well, BUT I do not believe thiamine alone will do anything but slow progression just a little.
Thanks for your remarks sir. I certainly cannot refute anything you had to say except for the fact that RoyProp, who responded to my original post, seems to have benefited greatly from the Constantini b1 protocol. I seriously doubt that it will harm me and maybe, just maybe, I'll be one of the 20% who do get some relief from their pd symptoms. I will give it 60 days and then reevaluate whether I should continue or move on to other possibilities including niagen and mannitol, both of which I came across several months ago.
There are, indeed, many supplements that may help PwP. Mannitol, niagen, theracurmin and others are on a long list. I personally take niagen, theracurmin, fisetin and a few more. But I have also begun taking thiamine at the direction of Dr Constantini, because I came across a post by easilly into which he has copied the stories of many PwP benefiting from Dr C's protocol.
The 1 in 5 (or 20%) figure is based on an individual who says he is associated with a medical facility not associated with Dr C. Did this facility find the correct dose, or did they guess - badly - as many do? We really have no idea.
Working without Dr C's input, it's very likely that I would have guessed a much higher initial dose for myself, experienced negative effects, and might well have given up before seeing any benefit. With his input, I'm on the 3rd day of discovering more and more benefits. Everyone trying this should consult with Dr C. If you don't and it doesn't work for you, then you can't really say that you've given it a chance.
"On this very forum one poster claimed he was associated with a medical facility in Italy and at that facility they discovered that only a fifth of the patients who tried thiamine felt any benefit."
I would like to see that post. Do you have a link?
As to high-dose thiamine efficacy, it only took two weeks to restore normal bowel peristalsis for myself and Royprop, and this treatment has caused no serious adverse effects as far as I know. Well worth a try in my opinion.
Here is the actual exchange with the poster in question. It is at the half way point on the "who is taking thiamine thread" if you want to look it up. Please let me know when you have read it so I can delete it from this thread so I don't clog this thread up or I could just leave it....what do you think. It's more of an opinion than scientific research.
I understand the interest in B1 and a person with 10 years of Parkinson's, I would love to believe it is a magic bullet. I cannot find the evidence to back this up unless somebody is deficient in B1 because of Diet. Somebody quoted "weareparky" research. I met them in Rome and told them that their resaerch was having a big impact. They were surprised as they themselves stated it was only usefull in certain circumstances and their "research" was not scientific. So I spoke to the leading authority on this in Rome Fabrizio Stocchi - Again he said that there was no concrete reason or research. I then checked with Dr. Anna Zecchinelli (MIlan working with Prof Pezzoli and got the same answer). I am sure that my less than enthusiastic response will be greeated with a hail of dismay. I work everyday with Neurologists and people with Parkinson's (also with Parkinson UK). I will translate what DR Zecchinelli said. She is a Nuerologist I hold in high esteme. If it works for you, great, take it and carry on but it should be added that Diet and CORRECT excercise are far more Fundamental.
Alex
European Parkinson
2 likesReply
Despe
Despein reply to Quintin
2 months ago
I bet the neurologists you hold in high esteem prescribe a lot of conventional meds. . . Dr. Costantini is also a NEUROLOGIST whose only concern is his patients' well-being, not $$$. Would your neurologists offer their services for free???
Reply
kalyan48
kalyan48in reply to Quintin
2 months ago
Hi Quintin can you please expand a bit on what would be CORRECT exercise for PWPs some baseline guideline will be really helpful thanks for your support
' She is a Nuerologist I hold in high esteme. If it works for you, great, take it and carry on but it should be added that Diet and CORRECT excercise are far more Fundamental.'
I don't think many people would argue that point at all!
People who want to wait for the concrete evidence should. Nobody is telling them otherwise.
Art
2 likesReply
Quintin
Quintin
2 months ago
Well put.....indeed I would add try anything logical and if it makes you feel better. Why wait for research!!!
1 likeReply
easilly
easilly
2 months ago
What is the downside to trying a vitamin with a very good safety profile if somebody wants to take that risk?
Art
4 likesReply
Quintin
Quintin
2 months ago
Indeed, I am agreeing with you. As long as you do not ignore all the things research has already proven. We estimate that about 18% of people get some or good benefit from B1, not exactly scientific but worth a punt but Excercise, diet and lifestyle must come first.
1 likeReply
AmyLindy
AmyLindyin reply to Quintin
2 months ago
I’d like to know who “we” are? Quintin, you seem to be an educator or perhaps researcher? If it’s handy,
Can you enlighten me/us on the reference for 18% please?
2 likesReply
GioCas
GioCasin reply to Quintin
2 months ago
if you come back to Italy come to see me, I iive near Milano so you can see with your eyes because B1 collects interest in Italy as you see from this question to dr Pezzoli. I use b1 (injections 100 mg 2 time at week) about 3 years and change my life after one hours Gio
forum.corriere.it/parkinson...
1 likeReply
Quintin
Quintin
2 months ago
Hi Amy... as I said 18% is not a scientificely valid figure. As a Director of a major clinic (in Italy) and as a Parky we always ask about B1. We have about 2000 guests per year. Our research is done with Oxford Brookes University but we have never reearched this (control group and sample size). But of our guests, about 23% take B1 and 18% report a benefit. It is strange as GioCas correctly points out. Some people have a major benefit and most none at all. Horses for courses!
Gianni Pezzoli is not a big fan of B1 though forum.corriere.it/parkinson...
Reply
GioCas
GioCasin reply to Quintin
2 months ago
I never said that Pezzoli was a fan of b1, besides Costantini and a few others, that's for sure ,no neurologist promotes b1, I said that there is interest and patients ask for a response to the scientific community. I can only give my personal experience, the scientific community could give a more thorough look does not believe? Congratulations for the volume of patients also I although I hope I never need yours services, for now I have good reason to think so, I think that as PwP will understand me. Unless you have a better b1 based protocol, then could I think about it ?! Cordiali Saluti GioCas
Reply
GioCas
GioCasin reply to Quintin
2 months ago
a nice nick name Quintin if it is in honor of Quintino Sella you will be a lover of the mountain, I think.
I say leave it up because it is relevant to the discussion.
>"But of our guests, about 23% take B1 and 18% report a benefit."
Not clear if this is supposed to be 18% of the 23% or 18% of the total. In any case this is just an informal comment and hardly qualifies as scientific evidence. It is hearsay, really.
What I didn't understand is if these were actual patients of Dr. Costantini in Italy, why would they be going to another neurologist? If they weren't his patients, we don't know if they were following his protocol or just taking thiamine on their own with no guidance. On this forum, that some times doesn't work out very well because at the first sign of a worsening of symptoms with no guidance, people will often just stop taking B-1 and assume that it doesn't work.
I never saw any more posts by Quintin / Alex to ask him to clarify.
I took these as *not* being patients of Doctor Costantini. As you point out - why would they be seeing a different neurologist. I also agree we have no way of knowing whether they were actually following the protocol, or how long they persisted. Improvements other than peristalsis take three months or more.
As it takes so little to upset the 'parki' applecart it may be the case that some folk may need other supplementation or perhaps it's more effective for certain as yet undiscovered pd subtypes,. The phrase "everybody's different' whilst largely true doesn't tell the whole picture, most pwps can be grouped by symptoms which are most problematic.
Niagen, a form of b3, thiamine b1, Dr C suggests to some adding a b-complex, as the b1 dosage can affect the levels of the other b-vits. So my point is there is an interaction between b-vits, Quintin takes a negative view of b1 but a positive view of niagen b3. The two camps are, to me, mutually supportive. Although they have different roles, it would seem they both help pd and may well have some common ground.
It is no different, as well we know, from agonists and l.dopa, for some agonists are as much use as a chocolate fire-guard.
One final point, Quintin makes a big point stating the obvious, EXERCISE! I agree of course but would politely point out you need to be able to get out of the 'effin' chair first !
Allow me to pick apart Quincy's very questionable (intentionally misleading?) post:
"As a Director of a major clinic (in Italy) and as a Parky we always ask about B1. We ... have never researched this... But of our guests, about 23% take B1 and 18% report a benefit."
In his own words, his "major clinic" simply asks their "guests" if they happen to take B1. He doesn't seem to care if they're taking it in normal or high dose. He doesn't have any idea if they're just taking a simple B-complex vitamin that happens to have 25mg of B1 in it. He doesn't care or know if they've been guided to the correct dose.
Therefore, if a guest says that they're taking B1 in any amount, according to his logic that qualifies them as someone who has tried Dr C's protocol? That's exactly what he's implying when he uses the "18%" value to argue against Dr C's protocol. He seems to be misleading us on purpose, as is anyone who uses this as a valid data point in their argument. It's not.
Bottom line: He actually has no idea what the real percentage of PwP following Dr C's guidance is successful. It tells us absolutely nothing.
Why would he post intentionally misleading comments? I don't see what incentive he has for that. He didn't say enough for me to form a judgment about what he is doing precisely, what he knows, much less whether or not he cares. His clinic's mission might be such that it is not relevant to them the status of Dr. C's patients.
Quincy is the director of a medical facility in Italy. Dr Constantiti runs a clinic in Italy and has drawn thousands to see him. If all it takes is a few sessions to find the correct dose, thousands of long-term, highly profitable patients would suddenly need nothing more than B1 injections - actually not even that. He certainly must understand the difference between simply taking B1 and taking a high dose of B1 as prescribed by Dr C, because he claims to be in touch with several very influential neurosurgeons. I suppose it's possible that they don't understand, but it's very doubtful:
"I spoke to the leading authority on this in Rome Fabrizio Stocchi - Again he said that there was no concrete reason or research. I then checked with Dr. Anna Zecchinelli (Milan working with Prof Pezzoli and got the same answer)... I work everyday with Neurologists..."
Yet he (Quincy) then gave a very misleading statement which nearly everyone on both sides of the issue misunderstood.
As far as the other comment goes, that's just frustration; this isn't the first, second, or even third time that someone has tried to use this Quincy exchange as an argument against high-dose B1 treatment. It's been pointed out several times and it keeps coming up.
I agree completelly with your point of view, I think most of the people trying B1 Protocoll are also trying other things. At least this is what I do. In Italy we say , never put all the eggs in only one basket....
I am not seeing that you made the case that, according to the science, the compounds you name are preferable choices because (all you said was) they were proven to slow progression in petri dishes, bugs, and animals and safe in humans when, as you know, what is proven effective in animals and flies is more often than not, and by huge margin, proven ineffective in humans.
True enough, reports about Dr. C’s results are hearsay and, true enough, there is no evidence supporting thiamine, but the reports on this forum are first-hand and reports that it reverses symptoms in around 20% of a population is, to my way of thinking, more compelling than compounds that slow progression in animals and flies, especially since everything I take slows the progression in animals and flies and all of it together hasn’t reversed my symptoms.
Reversing symptoms is big deal. I suspect that a compound that reverses symptoms in 20% of a cohort is more potent and slows the progression more (than do compounds that have been shown only to slow progression.)
Lastly, when we are referring to Dr. C's results, should we confine ourselves to intra-muscular injections, because isn't that his preference?
This discussion feels like we have to choose between them, which we don’t -- and I haven’t.
In the videos, you can see that his patients are at varying degrees of disease progression and some are in the "severe range" and still show dramatic improvement by just adding thiamine/thiamin/vitamin B-1 to their standard PD prescriptions meds
Roy, when I use the word "evidence" above, I mean it in the way sunvox means it, i.e., peer-reviewed, double-blind, placebo-controlled, multiple location trials.
Because of the unwillingness of any major funders or institutions to fund such trials in collaboration with Dr. C, I believe we have all the information we need for every PWP to get in touch with Dr. C and try this thiamine protocol.
Again, this discussion feels to me like it's been set up as a choice between thiamine and other things, such as diet and exercise, when no one in their right mind would think they can forsake everything else because they are taking thiamine.
And again, I know of no pharmaceutical, amino acid, enzyme, supplement, diet, or any part of any regiment except exercise that has the potential to reverse symptoms except thiamine. So, I question the prudence of comments that have the effect of discouraging PWP from trying thiamine unless they can offer an alternative where we have more to go on than what it does to fruit flies.
Thank you really very much Joe !! It really helps me to summarize all the things I've
red...... Question : were can you buy, order niagen ?? Or is it suffisant to take it
with a Multi-Vitamin Supplement ?
What does Mannitol mainly helps for ?? Constipation ?
And what about Inosine (just ordered some boxes) ?
And D-Ribose ?
A lot of greetings !
Jan
Interesting thread. One thing came to my mind when reading it - if levodopa is having *no* effect then there is a possibility that the diagnosis of PD is incorrect.
Eh yes, it better have a datscan, in north Italy datscan is routine for PD diagnosis. Not is easy exam, I have one positive date 15/9/2015, that means PD sick at 98%, I think.
I've had PD for about 10plus yrs, diagnosed 2 yrs ago, on light dose mucuna puriens, and 1500 mg B1 HCL since March 18. Still tweaking dose, but helps tremendously, esp with balance.
Sorry for the delay..I take Mucuna tablets from Banyan Botanicals. Each tablet is 500 mg pure mucuna bean, with 5 to 7 % natural dopa. I take 2 to 3, 3 or 4 times a day depending on how stressed I feel. For real stress I've taken 6-8 over an hour...helps take the edge off. I'm sensitive to meds and never had a problem with this. I've tried the powders, and Solaray, but they didn't seem to help. I chew the tablet for quick results..within a half hr.
I have a disease. I have no symptoms. I have a protocol. Those that are following my protocol are seeing benefit. The end. It's a forum for open discussion, and happily the moderators are lenient. You can agree with me or not, but I believe I have an answer for mutant protein related neurological disorders and people that are not yet symptomatic. I do not believe thiamine alone is an answer, and I want to work my hardest to dispel that belief because I believe in time Dr. C will be shown to be a quack.
Hi there, while there are so many different alternative supplements out there, not all work for everyone but you might be the one that it does. Sadly the Thiamine B1 didnt work for me , it actually made my symptoms worse. I was diagnosed in 2013 and am on cd/ld . I am very active and always have been and believe exercise has been my biggest supplement to help me. I am always excited to hear when something has made a difference in someone’s life with PD , but I also get upset with our friends that suggest that when something didn’t work for us (B1) , that we didn’t try hard enough and that we are just excepting our PD symptoms to get worse. Everyone’s journey with this disease is different and I think you should try it and I hope it works wonders for you. I will think positive thoughts for you. Good luck my friend . Karen
I absolutely do not intend to imply that you haven't tried hard enough. I am writing this with one simple goal in mind: I need as much input - based on actual experience - as possible.
I am currently where you might have been, so would you please read my very brief summary of my experience with B1 so far, and let me know if you have any advice based on your experience?
I sent email to Dr Constantini with my weight, age, and a brief history of my condition.
He advised me to stop taking all supplements and to take 2.5 grams of B1 a day.
I began to, and after 2 days I noticed a better mood, slightly easier gate.
But after the 3rd day, I felt jittery and the benefits were gone. It felt terrible and couldn't exercise as I had been. It felt as though I had taken a big step backwards.
I emailed Dr C and he advised me to suspend the B1, wait a few days, and restart B1 at 1 gram a day. I'm to take this dose for a week and let him know the result.
I've been on 1 g/day for 3 days and the jitters are gone, but I feel no benefit at all.
I suspect that after a few more days I will have to report no results. If so, he'll probably increase my dose to 1.5 or even 2 grams. That makes me nervous because I don't really want to experience those jitters again, but I want to see this through.
Does this sound at all familiar? Thanks for any input you might have.
Hi . Are you taking any other meds for your PD like cd/ld or azilect ect. ? I tried the B1 for a month and the first week I felt good and felt strong and energetic but noticed more of a tremor then I normally have . And kept that in mind. I was hoping for less fatigue with the B1. The second and 3rd week my symptoms become much worse and by the end I could barely walk or run. My PD did not start from tremors , it started with not being able to walk and I am a runner. I will not let that happen again. As soon as I stopped the B1 things slowly came back to ‘normal ‘. Well my normal . I by no means are against alternative supplements but I could not stop taking my normal meds . I also use cbd/THC spray tincture under my tongue for pain. I hope the B1 is amazing for you as it seems to be for some . Take care , Karen
You have had the same reaction as so many others, an initial improvement in the first week or so, followed by a worsening of symptoms. According to Dr. C and many others on this forum, it only means the dose needs to be adjusted. The fact that you saw initial improvement means that it works for you, but your dose is likely too high so it will exacerbate many symptoms or even create new symptoms! This is why you see many have to suspend usage for 5 days to a week to allow the thiamine level to drop in the system and then they start again at a lower dose and report their results each week to Dr. C. This is his process of how he adjusts the dose. In his office in Italy, they average 3 months to get the dose correct. It can be a little longer via email or some hit it dead on at the first dose that Dr. C recommends, but those are the lucky ones. If you have time, take a look at this link and see what you think. I'm not trying to hound you, but I would like to see you get the benefits that others have gotten, now that you have gotten a small glimpse of what the correct dose of B-1 can do for you in those first days!
Dr. C does not charge for these email consults and he has said that during this critical period of dose adjusting, he wants you to stay in constant contact so he can fine tune your dose in as short a period as possible!
Thank you Art for your support and information . I did talk to my neurologist about the B1 , I think I have the best specialist in California and he suggested me not to use the B1. I told him about Dr C and his regimen , he advised me to not . Take care . Karen
Art, I appreciate you and your support. Just know I am one of those women that never gives up or gives in . I am very demanding when it comes to my life and my health . 😊 Karen
I have a sister who is a lot like you and in fact, her daughter's name is Karen! Perhaps that is why I responded when you had not asked....a kind of subconscious thing!
Yes, I take Rytary, which is a time released LD/CD med. It's covered up most of my symptoms for the last 2+ years. I take nothing else besides some supplements. I've suspended all supplements other than D3 on days that I can't get outside into the sun. I have some mild tremors, but the jitter I felt when I was taking 2.5g/day was different from any symptom I'd felt before.
As I said, after he cut my dose in half, I got back to my 'normal', but I think it's too low now, so I expect him to increase it to 1.5g. I'll probably go along with that, but if he increases it to 2g/day I'm going to have to think about it.
The physical symptoms I had at 2.5g were not as bad as those that I had before I started taking Rytary. However, the feeling of hopelessness that came with it was not something I want to repeat. I'm not usually a negative person, but it felt as though I'd slipped so far down the rope I'd been climbing that I wasn't sure that I'd ever get back again. 1.5g seems safe, but 2g? That seems too close to 2.5g for me!
Hi, I understand what you mean by not allowing yourself to slip back down , that is how I feel . I will not allow myself to get where I can no longer run or walk . The fatigue with this disease is what I’m trying fix. I know some is the disease and some is the meds. My dr has me take my blood pressure when I have bad bouts of fatigue and it is very low at those times so that is part of it too. I hope you have relief with the B1 . I will be thinking positive thoughts for you. 😊
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Cordiali Saluti GioCas
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