Eighteen months ago, having been sent an article about Dr C, I began to take B1 as a 1x 100mg sublingual tablet daily. Naturally, like most of us here, I was doing many things to keep well, and when ALL my rigidity vanished over a six month period, I didn't connect the B1. Having failed to find any other explanation I'm now feeling that it could well have been the introduction of 100mg B1. It was a very low dose compared to the level that most people take. Could the fact that it was sublingual have meant that a smaller dose was more potent? Any comments from people with knowledge of sublingual tablets or similar experiences would be appreciated.
LOW dose thiamine.: Eighteen months ago... - Cure Parkinson's
LOW dose thiamine.
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Dap1948
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This is a further contribution to knowledge about the use of b1, which I believe is relevant. You could make a gradual scale of quantities starting from those who use 50mg injections per week, going through the 100mg sublingual , up to the high oral doses. This could tell us something besides even being very useful. Thank you Dap1948
Could you pls share your source of B1 100mg sublingual tablets... I take recently 250 mg daily yet not sublingual, with similar effect on rigidity. Started months ago by 4g and reduced gradually under the guidance of Dr C ..
Hi dadcor did you have reaction on the 4g so you reduced to 250mg?
How did you reduce gradually? Thanks
Hi, yes I was having different signs of not being able tolerate the higher doses. Dr C guided me to reduce. Usually in halves till I reach the level of tolerance suitable for me. In the meanwhile, I was feeling different improvements in my status. Micrographia totally disappeared, no balance problems any more, almost no rigidity, no constipation. Just the tremor persists, yet no so strong as before and easily manageable by Ldopa. Reduced by half Madopar. I even have days without Ldopa at all. Started working again and when I take Ldopa to suppress the tremor, people around cannot guess that I still have PD..
Thanks DAP for sharing. I am going to contact Dr. C to determine if this is the path I should try. I know the higher doses didn’t help, but perhaps this is the solution.
Natasha
• in reply tonldr18
A group member reports that Doc. Costantini is temporarily out of service.
jujulini• in reply to
royprop- what does that mean? is he not answering emails, or does he say hes "out of service"?
• in reply tojujulini
Copy "I received an email overnight from Marco with Dr Constantini that he cannot follow his patients for awhile due to unforeseen circumstances. He said to suspend B1 until he is able to be back at work. I had a reaction to 500 mg. I am hoping he is okay as he helps so many people."
Annieartist• in reply to
Hope he is OK
Where is the best place to write up our individual B1 stories? Seems important to do so
• in reply toAnnieartist
Post your B1 testimony, join my facebook group:
"parkinson's thiamine hcl"
facebook.com/groups/2322600... …
Parkinson's Relief, Questions and Answers
Guide:
1. Read page, About, open links.,
2. On Files page, open B1 FAQ document.
3. On Files page, download First Appointment document, answer and submit.
Sounds great! so you are only on 250mg now and it's working well?
How long did it take to work?
Thanks.
To all those asking for source details... I threw the last tub away a year ago when I stopped taking them. I've done a google search and no one is currently selling B1 100mg sublingual. I've phoned a friend who might still have a tub. I'll post again if I get anymore information. Sorry
You have stopped taking it a year ago? The effect is still lasting?...
I purchased the sublingual 100mg B1 from superiorsourcevitamins.com However, they don't seem to stock them now. I've emailed them
What made you decide to stop taking them, was it that at that time you hadn't made the possible connection ?
I hadn't made the connection. Dah!
I'm sure that is happening more than we realize since many of us are on a variety of things. It's tricky figuring out what's working.
Have you been on B1 at all since you stopped the sublingual ?
After I stopped the sublingual B1, I continued with a B-complex, then began working with Dr C in November. I've tried 3g, 2g, 1.5g, and 1g. I've not felt so good on any dose tried so far as I did prior to working with Dr C. When I recover from the latest reaction I plan to try 500mg. Perhaps I should return to the sublingual....
Definitely try experimenting with the sublingual at some time in the future. It would be interesting to see what happens. To be accurate though you'll have to mirror everything else you were taking at that time too.
Dap1948,
Since there are at least two members that I am aware of who have found 200 mg/day to be effective, it does not seem too far of a stretch to think that 100 mg could potentially be effective or partially effective for some people. I do not think the sublingual pathway was all that important and the fact that other manufacturers of B-1 in general are not falling all over themselves to make that form suggests that it is not a proven positive for B-1. Compare manufacturers of B-12 sublingual to B-1 and you can get where I am going with that idea.
The question I would be asking is if more B-1 would have done even more, because if you are correct and the 100mg B-1 did what you think it did, "make all of your rigidity vanish", then that means you are a responder and a responder at the optimal dose, shows the potential to halt or drastically slow disease progression at a minimum!
Art
jujulini• in reply to
easilly- you can add another person to "low dose" list. after several dosage adjustments, i am currently taking 200 mg/day with good results.
it is currently being sold on... cvc4health.com/products/Vit...
Is this located in the US?
This is Thiamine mononitrate (according to the sticker on the bottle). Dr C. recommends Thiamine HCL.
Yes I know. But this was in the dark and dIstant days of 2017 before Dr C was recommending anything other than injections.
Did you change your diet, supplements, yoga, more exercise or anything that may have helped the rigidity too? That’s amazing results !😊
Exercise stayed more or less the same - yoga, walking, playing piano, though I began walking to music. Otherwise the only other thing I changed was half my madopar to mucuna
You’re doing a lot of positive things which is great! Do you follow any special diet and I’m not sure if i Remember correctly but did you also use blueberry juice? Thank you
I've been gluten and dairy free for 9 years. I do have blueberry juice after reading a book about neurogenisis.
I’m so happy you are doing so well! You give a lot of people hope! I bought some blueberry juice haven’t tried it yet!😊
At least blueberry concentrate is cheaper than blueberries and they taste much better than B1!!
Dap, How much blueberry juice do you drink you today? I assume sugar-free? A particular brand?
... many thanks.
Natasha
DaP, Could you please share the name of the book about neurogenesis. Thanks.
Neurogenisis diet and lifestyle. By Brant Cortright
Hi, Dap. I am a good friend of Brant Cortright's here in N. California. He'll be happy to hear you use his book.
• in reply toDap1948
Actually, Dr. C was recommending oral HDT in 2017, but his preference was always with the intramuscular injections and I think he felt they were more reliable and consequently his first choice over oral B-1. I think I first wrote him in 2015~ 2016 and he suggested oral dosing for my friend at that time, but my friend didn't start right away with the HDT.
Art
This is a very good info.
Could you please tell us which brand and the exact name of B1 bottle please?
Thanks Dap1948.
You’re doing a lot of positive things which is great! Do you follow any special diet and I’m not sure if i Remember correctly but did you also use blueberry juice? Thank you
I had a doctor tell me years ago that chewable and sublingual vitamins are preferable; more of the vitamin get absorbed. The pill/capsules--much is lost in digestion. I don't mind the tastes. I take sublingual and/or chewable B complex, B-12, C, and D3.
Not just B1. I take Sinemet and cannabis sublingually.
Compared to commonly used tablets, capsules and other oral dosage forms, sublingual absorption is generally much faster and more efficient. The percent of each dose absorbed is generally higher than that achieved by means of oral ingestion.
In case of cannabis also reduces worry about any carcinogens from smoke.
I make an infusion with bud in olive oil with a little butter for taste. A teaspoonful under tongue that also gets swallowed.
I dont like the high feeling does it make you feel stoned doing the cannabis that way? It is hard here in Michigan to find medical cannabis products due to the new law of recreational use.we have had about 70 shops close its so frustrating.I really want to find some CBD/THC mix
Choosing cannabis is more than CBD vs THC, health vs high
It is also about strains, Sativa vs Indica, stimulation vs sleepiness
I have a Montana medical card and have used Harlesin strain for several years
a Sativa CBD dominant hybrid
good reference
dopedirectory.com/marijuana...
Motivates me to exercise and keep active
But not like caffine or speed
Lowers blood pressure about 10 points
my BP tends to be a little high
may not work for someone on low end
don't use a few hours before bed time
my experience and research indicates
at least some THC is needed
to make CBD most effective
its not either/or
Yes I would like a 3/1 ratio if possible. 1% being the THC part I work full-time and I am not able to utilize cannabis during the day I do have a vape pen that is a THC concentrate but it is pretty high THC and I don't really like the high feeling I have not tried the sativa strain only indica unfortunately here in Michigan it's very hard to find anything in the medical marijuana field due to so many dispensaries closing because of Licensing problems. I don't know what I'm going to do if I can't find something here in Michigan because I know you can't purchase it online from any other state it's illegal
Thanks for the tip- Ive ordered some, we'll see what happens. 
Are you still using the PMF? I purchased one but Im not sure what the most effective way is to use it. Would you mind sharing any particulars like how often you use it, at what strength (1,2 or 3) and for how long. Also where you find the lead placement to be the most effective. Tnks!
Would you mind sharing why? Im interested in someones actual experience. Did it stop helping or did you just start feeling like you didnt need it anymore? thanks for your response!
Well it broke first of all. They replaced it, but I hadn't missed it while I was waiting for the replacement and when it came I lent it to a friend with fibromyalgia and she found it helped with her pain so she's kept it. I also try and try out one thing at a time and I was keen to trial the next thing on my list! So I don't think I've been much help. I was a little concerned that being a sensitive sort, I did find it a little too stimulating.
Thanks for sharing! I understand being the "sensitive sort" myself. That was why i was asking about how to use it. i feel like i am doing something wrong. thanks again.....
Hi Dap1948 I read with interest your post and ordered the B1 sublingual version that you were taking. I tried previous doses (in consultation with Dr Constantini) starting at 500 mg daily finally reducing to 100 mg; due to worsening of symptoms and less on time with medication (sinemet) I stopped taking B1 in December 2018. However i thought that as you could have potentially have had success in treating your symptoms with the soluble version that I would try it. Unfortunately as in a previous attempt of taking 100mg, after the 5th day I have experienced worsening of my symptoms.
This was after having 2 good days!
I was a bit hesitant about using the sublingual version as it is thiamine mononitrate ( Dr costantini recommends using hydrochloride) but was hoping that at a lower dosage it would not present any problems. Please see link regarding potential
In the absence of doctor costantini I'm at a loss now to know what to do. I'm thinking of trying 50mg daily of the sublingual version by cutting the tablet in half.
I know that B1 therapy has helped a lot of people but it's about the sustainability of help that it can provide which confuses me and is disconcerting.
• in reply toCrystal04
Crystal04,
Well, I'm curious, did you find any improvement in your symptoms with B-1? If so, you will be the first person to do so on less than 100 mg/day!
Art
Crystal04• in reply to
Yes my medication 'on time' was upto an hour more and I didn't get the horrible wearing off symptoms that I usually get - intensive tremor being the most significant symptom.
It's strange because every time I try a new dose at about day 5 I start getting less on time with my medication and I get even worse wearing off symptoms. I must be unique!
• in reply toCrystal04
Crystal04,
There are a lot of options in dosing that are mainly limited by your imagination. You may find that it may take something as simple as skipping the fourth day dosing that gets you on a more steady controlled symptom situation or possibly a half dose on the fourth day. I look at your situation and am just very happy to see that you are a responder to B-1! The effective dose you will eventually figure out in time. It will be helpful in that search for the best dose, to keep detailed notes as you go and document each dose change and response to that change. That way when Dr. C is able to return, you can send him the notes and that will help him to help you determine a best dose based on your notes.
Art
Crystal04• in reply to
Thank you for your words of encouragement I really appreciate it. I was wondering whether you have a view on the link to the article that I sent regarding safety of b1 vitamins.
Crystal, can you please provide the link of the mentioned article on vit. b1 again?
I must have missed it and not sure in which post to look for it 
• in reply toCrystal04
Crystal04,
To be honest, I am not sure it is accurate or complete, but more importantly, I do not feel it is reflective of the true exceptional safety profile of thiamine hci in humans compared to almost any PD med. There were a couple of statements made in the article which I have not seen confirmed in studies. I felt the article may be more opinion than fact. They were talking about synthetic thiamine as though its safety is in question, but I didn't see actual direct links confirming this idea and you will be hard pressed to find such studies. I have not seen thiamine studies where they differentiated on whether they were using natural or synthetic thiamine. Yes, thiamine HCL/HCI is a synthetic form that I believe is made with hydrochloric acid by mixing it with thiamine chloride to form thiamine hci, but where will you obtain natural thiamine if that is the route that you want to go and what do you think happens to it once you swallow it and it goes to your stomach where it meets up with sodium chloride and hydrochloric acid?
For me that article is a non event of questionable quality as the science does not seem to confirm all that they were saying. I feel that HDT reporting on this forum and the thousands of patients that have used HDT do not tend to confirm that article in the slightest and I certainly wouldn't use it as a basis to determine if I was going to test HDT or not. There are plenty of "real thiamine studies" available to not have to rely on an article of questionable quality. I took that site to be a supplement seller, not a place of scientific research and I did not see an authors name mentioned.
It is an individual choice and each person has to make their own decision on whether they should or shouldn't test HDT and I would not include that article in my decision making process, but that is just my opinion.
Art
Crystal04• in reply to
Thank you for your opinion on the article. Have you any thoughts about the sub-lingual monitrate version which improved my on time in the first 4 days more so than the hydrochloride capsule had previously.
I'm pleased to hear that you've had such a positive response to the sublingual B1. I chose it two years ago because I was told it was the nearest to the injection. I'm taking it again now and am not worried that it is anything other than safe.
I would be happier though it wasn't so shortlived. I have been experimenting with b1 since end of November 2018 with several short breaks in between. I will persist for a while longer at the lower dose of 50mg daily or even 100mg every other day and see how that goes.
Thanks for your advice and support it is greatly appreciated.
Same with me... I've been trialling since the end of November 2018. Dr C put me on 500mg, 1g, 2g, 3g. I didn't notice any improvements on any. Then my Bowen therapist noted in his notes that I'd been on the sublingual B1 when I'd lost my rigidity in 2017. We'd never connected the two and I'd stopped the B1! The rigidity never came back even though I was off B1 thank goodness. Now I'm back on sublingual B1 and I was hoping to feel good, but nothing yet!!
Crystal04• in reply to
Thank you very much for your advice and support, as always it's very much appreciated.
I have just tried reintroducing a dose of B1100mg after a day of stopping the therapy unfortunately worsening symptoms continued. Strangely enough the day that I stopped I had a much better day with my medication!
From what I've read about B1 therapy I thought that worsening symptoms are a sign of taking too high a dose that's why I was advised by Dr ConstantinI on two occasions to reduce the dose.
I will persevere however on a very low dose to try and reach my goal for better health.
Thanks again.
• in reply toCrystal04
What dose have you settled on?
Well that article has scared me! I'm going to seek opinions from my medical contacts! Can I just say that we all go up and down with PD. Good days and bad days, days when we do too much and days when we need to rest and recover. Many factors effect our symptoms. Could you be reading too much into the natural ups and downs and laying everything at B1's door? Do you need to try a longer view on the effect of a dosage? I know Dr C recently spoke of 20 days.
There's a definite pattern to the worsening of my symptoms and less on time with medication as I keep a diary which I refer back to and the same sequence happens when I have tried each dose. Dr ConstantinI told me to stop B1 and recommence 7 days after I took the first dose of 500mg and then advised me to half the two further doses. He didn't mention about continuing with b1 for a further two weeks before halving the dose.
A friend, who contacted him just before Dr C stopped emailing, was told to try the next dose for 20 days, that's all that makes me say it. But if you get such definite signs... You have presumably tried going on to see if it's a temporary blip. I've always had the feeling that sublingual tablets are stronger because they go straight into the blood stream, but what do I know! You could try half a tablet, or a tablet every other day. We can but keep trialling and keeping a detailed diary. Good luck
sunwarrior.com/blogs/health...
Sorry the link doesn't appear in my previous reply....trying again!
Maybe you could check that with your friends in the medical profession. I would be interested in knowing what their opinion is on this.
Re the article - My medical friend assures me that you don't excrete sublingual B1 through urine and therefore it doesn't go through the kidneys (or the gut) and therefore is perfectly safe to take.
Thank you for checking and for letting me know. Did your friend say though that if it was excreted via the urine whether it could be harmful to the kidneys?
As it's sublingual it isn't and therefore it isn't!!
What is the source of your Sublingual version? And does it come in any greater dosages, I wonder?
You don't need very much as it goes straight into the blood stream. My max dose was 1x 100mg tablet a day. I get it from...
healthmonthly.co.uk/superio...
If in USA you can get it on amazon.com
Is it better ti take 100 mg of the sublingual or doses of 50mg?
Being microlingual they are a bit crumbly so not so easy to cut in half
I ordered liquid extract of vit b1... each drop/ is 6mg- should I take enough for 100mg?
Gosh! Are you sure it is B1? (I've only come across B12 as liquid.)
That would be 18 drops!!! That sounds a lot and your bottle wouldn't last long. The tablets cost me £6 ish and a tub lasts me 4 months! If your liquid is B1 and not B12 or B complex I would experiment, but I would start at about five drops.
Hi Dap,
I know this is a really old thread, but was hoping you could update it.
I was wondering if you are still using B1 100 mg sublinguals to good effect and if so where are you currently getting them as that manufacturer no longer seems to carry them?
Art
Hi Art. Yes I’m still using the sublingual version of B1. After starting on one 100mg tablet a day in 2017, I’ve gradually reduced the dose so that I take one tablet 4 times a week. I’m considering reducing to one tablet every other day which is a little less. They are available from evitamins.com/uk/b1-superio... charged me import duty the first time, but not last time. I’m doing well being eleven years since diagnosis and no rigidity anymore, handwriting and piano playing and energy good. I take 200mg of ldopa which controls my tremor.
Thank you for the update, Dap!
It seems like an ideal supplement for you in terms of the good effects you are getting and it is lasting!
One other question. If you have ever stopped B1, how long did it take for the effects to where off?
Art
When I first started taking it, my friends pointed out how my smile reached my eyes and I was moving better, and I noted that I wanted to do more things (because of an increase in energy). However I didn’t put my improvement down to the B1 as other things had changed and people weren’t talking about B1 much in 2017. I stopped taking it for months during which time my energy dropped but my rigidity didn’t return as far as I can remember. Since then, I have taken it continuously, only stopping for three or four days, when I’ve felt over dosed.
Thank you, Dap!
I'm trying again to see if one of my PD friends will test it as he is getting worse and his neurologist has tried pretty much everything in his arsenal that is compatible with my friends other medications and has not been able to improve his current condition. I'm hoping the idea of having to take less pills will help him decide to test it now. He has only done what his neurologist has given him, but now he realizes that he now needs to have a caregiver come in and help him each day and that is something he never wanted so he is becoming more open to trying "other" things.
It is hard watching anyone decline, but I think even more so when it is family or friends.
Art
Hi Dap. I tried going to the website you attached and it gives me a 404 error?
Yes, I had the same problem and when I searched their website, they did not have it.
Art
Did Dap tell somewhere what the brand name is and missed it? I figured out how to get the homepage, but they only had 25 mg. I also read this:
Interactions
Tea and coffee contain tannins, chemicals that may interact with thiamin, making it harder to absorb.
Some of the chemicals in raw shellfish and fish can destroy thiamin, potentially leading to a deficiency if eaten in large quantities. Cooking destroys these chemicals, but it destroys thiamin too.
laglag 🥊
Amazon is also out of stock.
Art, try pureformulas.com - they seem to have 4 left in stock.
Thank you faridaro !
I saw that one, but they only have those 4 and I suspect they are older as the manufacturers site does not even show them. I found another supplier that has it from the same manufacturer in a different type box for a reasonable, but slightly higher price :
vitasprings.com/vitamin-b1-...
Art
The sublingual version goes straight into the bloodstream so, as long as you are not eating or drinking while you take it, it shouldn’t be affected. The brand name is ‘superior source’ but everybody seems to be out of stock at the moment. They do go in and out of stock quite a lot, so let’s hope they return soon.
How do you feel when you have had too much B1 ? Thanks
Very anxious. Waves of anxiety passing over me when there is nothing in my life to worry me. It can make me throw up!
That's pretty much how I get, but I also get that way with too little..then it takes a week to figure out what is what . How about you ?
So far ‘anxiety is too much and tiredness is too little’ has worked but it’s never as easy or clear as that!!
Hi Dap I read this good post the other day I had some b100 mg in my cabinet that I hadn't used yet so I do decided to try them on Friday. I took one pill and 2 hours later I felt really good and then I skipped yesterday since I wanted to ease into it. I took another one just a few hours ago and I'm shaking (tremoring) really bad. I have been for about an hour. Can you or anyone else know what could be causing that. It's so extreme?
Thanks for I thought you might have.
Keep fighting! 🥊
That happens to me when I've had too much B1, along with anxiety. The rule of thumb is to wait 2-3 days, and half the dose. Try 50 mg.
Sorry I can’t suggest why! I've never had a quick reaction, good or bad. And the dose was small. It’s been a long accumulation of the stuff that has led to my improvements. There are, I’m sure, many other factors which could also have an effect on how a tremor is at any one time.
Thanks for your reply. It is such a difference, I just thought I would see if that ever happened to anyone else. I've always been so uneasy about taking the high dose so I thought I would start low and see if it helped a little. I'm starting to feel a little better now. Thanks again!
Keep fighting! 🥊
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