I would appreciate some advice on stopping thiamine after just a month. I have a feeling that I might have been taking too much thiamine as a starting dose. I was asked by Dr C to begin the thiamine on 2 grams per day (split between 1 gram before breakfast and 1 gram before lunch). This was initiated just over a month ago. Dr C has just recommended that I try to carry on for another week before we assess whether I increase or decrease the dose. I'm afraid I am in such discomfort that I cannot continue on the present dose any longer. I can hardly walk now, my left arm is near useless, I have so much muscle stiffness and pain that it is very difficult to get adequate rest at night. I am planning to stop the thiamine for at least five days and then report back to Dr C for further review. Can I just stop the thiamine suddenly without adverse side-effect? I would be grateful for advice / feedback on this. I am putting this out there since I have learned that Dr C is extremely busy at the moment. Recently, I was very lucky to have received some feedback from the doctor over an outstanding query even though his reply was very brief. I still have faith in Dr C and his thiamine protocol. I look forward to giving this therapy another trial soon. I am not intending to quit just yet. Thank you for your time.
Note: Since posting the above, Dr Costantini has replied to my enquiry about suspending thiamine therapy for 5 - 7 days, He says it should be fine to stop and then review the situation after a week. (Please remember that this advice is in response to my query re: 2 grams per day (split into 1 gram before breakfast and 1 gram before lunch). I can't say what Dr C would advise those who have been taking higher doses. Perhaps that is for more experienced thiamine users to comment on.
As stated elsewhere, I view this suspension as a learning experience. I still very much want this thiamine therapy to work - the sooner the better. Thanks for your help.
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Ciao , As far as my knowledge helps me , there should be no problem in a sudden stop of thiamine protocoll. But I'm not a doctor , just following B1 protocoll directly with Dr. C.( I'm in Italy ). It's strange that you get such an adverse reaction. Did you change something in this month on your basic treatment protocoll ?
No, I have not changed any medication. I have even been careful about excluding any health supplements. Since I posted the above, Dr C has since got back to me to say that it's OK to suspend treatment for 7 days and then to report back to him for further instructions. This break from thiamine is simply to determine if my initial dose was too high - or too low! Hopefully, time will tell. Thanks for your comment.
If you do not make it work. All that remains is ravages of Parkinson's and it's progression
Roy, I am too aware of this. Your words are only too true. That is why I am anxious to find out soon if I need to titrate the dose up or down - soon. "Time waits for no man" or woman, for that matter. PD certainly does not make allowances for any of us. Thanks for reminding me of this. Regards.
Hi Dap1948. I am glad you are managing fine on your medication. I recently asked my brother how his father-in-law is doing. I know he has had PD for at least as long as I have had this condition. I am told he's still driving a car and doing lots of activities which involve considerable dexterity. Added to which, he must be at least a couple of decades older than me. It all proves that we each are affected differently by PD and that we each react in a unique way to the treatments offered. Thanks again for your contribution. Best wishes.
My protocol doesn't include many meds. I only take 100mg synthetic dopamine plus Azilect. It does include exercise. Eight years plus since diagnosis, I'm 70, still playing and teaching piano, training a choir, painting watercolours and learning a language. Exercise is THE most important thing.
Do you take Sinemet or any other dopamine replacement medications (including supplements like MP)? Do you have movement disorder specialist? I would strongly encourage you to review your condition with the MDS neurologist.
Thanks felixned for your comment. I have been taking Madopar (125 mg) as my standard medication pretty much since my diagnosis of PD in March 2015. I usually take one CR Madopar just before going to bed. My Madopar consumption has been fairly stable although I have found it much less effective in the last year or so. In other words, I've been struggling to get by on Madopar alone. The consultant neurologist suggested that I try Entacapone but having heard about some unpleasant side-effects of this drug from other people, I'd rather stay clear of this medicine for now. I am resident in the UK and our local NHS service may not fund use of Opicapone which apparently does the same job as Entacapone but more efficiently and without such severe side-effects. I am about to write to my local doctors to see if our NHS Trust will subsidise this medicine. If they won't fund it, then it will cost a fortune for someone of limited means - like me! This is one of the many reasons I am hoping that the thiamine therapy can help me (and many others) in a significant way, It's a natural product with no long-term adverse side-effects, if taken according to medical guidance. However, as has been pointed out by other more knowledgeable persons in this group, you must arrive at the optimal dose for you! This is the first, and perhaps the most significant hurdle. In order to make this easier to achieve, Dr C has repeatedly advised that you must not chop and change your medication while finding the right level of thiamine that can bring about the positive changes. In other words, "don't muddy the waters" unnecessarily. This IS a tough call for those (like me) whose condition has been deteriorating over a period of at least two years. I am very sympathetic to your suggestions which are sound and reasonable. However, I am trying not to take anything else, just for the immediate term. Brave words, I know. I might not live up to them, though. Thanks again for your thoughts. Best wishes.
Don't get discouraged. Most of the PwP on Thiamine protocol experience ups and downs until they find the right dosage--it's a trial and error process and might take 6 months to reach the optimal dosage. My husband is one of them. Started B1 injections and was on 100mg x 2 week for a month. On the first injection he called me and told me "Honey I am a normal person again!" Subsequent injections although helped didn't have the profound improvement he experienced first injection. He continued this protocol for a month. I wrote to Dr. C and asked me to have my husband suspend the injections for a week, make a new pull test video again and send it to him. When Dr. C. saw the new video, he asked me to have my husband increase the dosage from 200mg a week to 250mg a week and write back to him with a new pull test, walking and talking video in a couple of months (started the new dosage on August 13). I have noticed no major improvements yet, but I will wait for 2 months, and go from there.
Thanks for your feedback, Despe. Your reply contains plenty of material that gives me much needed encouragement. I hope all goes well with your husband's treatment. Do keep us updated. Thanks again.
hi korolev you are not taking the right amount of madopar not enough im on 1 madopar 3 times a day 200/50mg i madopar 100/25mg 3 times a day if needed.1 neuro patch 8mg..plus 2000mg of b1 thiamine plus one tea spoon of mannitol mixed in yougurt,its easy to take that way.hope this helps you..also i use a massage machine on my arm it helps big time.ill send you a video of it cheap to buy in the internet.hope this helps regards.
Thanks Motherfather for the information. I'm learning more than I bargained for on this post. I appreciate your concern. The massage machine looks a useful addition to the armoury. I'll investigate this further. Regards.
I have not heard of anyone reporting your symptoms as a response to taking B1 supplements. It may be an issue with your medication that just happened to coincide with your starting B1. I don't see how Dr C could advise on that so you should follow your neuro's advice until it is obviously not working. You need to sort out your meds so you can take up some form of exercise. Hope it works out.
Thanks Kevin for your reply. This is a learning experience for us all. None of us are experts although I concede I know far less about this thiamine therapy than the more experienced users. I am told that some people DO experience a worsening of their PD symptoms shortly after trying this thiamine protocol. Dr C has recently emailed me to say that he is confident that we will get the dosage right. One just needs to be very patient about this. While the symptoms rage on in the background, this can be a tall order for some of us less hardy campaigners! I am trying to resist reaching for the next tablet or opting for additional medication, some of which can produce pretty unwelcome side-effects. I don't pretend to have any easy answers, I'm just trying to give the thiamine the best chance of delivering some form of lasting and significant benefit. thanks again. Best wishes.
Not so good. Surely time to get some science based studies. I thought either some effect (related to B1 deficiency in PwPs) or no effect. The BMJ paper of Constantini was based on intramuscular injections of 100mg (standard clinical procedure for beri-beri); taking multiple grams of B1 is intended to achieve the same affect but is hit and miss by comparison. I assumed that was safe since most of it would be excreted.
Excellent post from you, cincinnato. Thanks a ton for writing this for us. I had heard something similar to this expressed by another HU member. But you put this view across very powerfully. I really derive some consolation and encouragement from your reply. Thanks again.
It is a little confusing, but that is the fault of the translation device, not cincinnato. These translation devices are useful, but they do currently have their limitations. I would imagine that looking beyond that to the underlying meaning is also useful.
It is fairly well established that thiamine / vitamin B-1 is quite useful for most PWPs in helping to reduce most motor and non motor symptoms once the "proper dose" has been established, but finding that proper dose for some is not always easy, while others find that the very first dose that they test is perfect for them. The dose is very highly individualized! I think some people make it through the dose adjustment period while others give up before they find the correct dose, but it seems that those who stay in touch with Dr. Costantini via email seem to do the best and find their correct dose the fastest. If you take too low of a dose you get no benefit and if you go too high, you can get a temporary worsening of symptoms while if you get the dose just right you get a very good reduction of most if not all symptoms. It can take a lot of trial and error, but for those who have stuck with it, I think the majority will agree that it was worth every second! One of the best benefits appears to be a halt or major slowing of disease progression and that item alone seems to be worth the price of admission! To date, the longest that people have been on this protocol is almost 6 years where symptoms have not worsened. Dr. Costantini has had patients who have temporarily stopped B-1 until symptoms return weeks later only to see symptoms that are no worse than when they started! They start taking the B-1 again and their symptoms once again reduce. This is not a cure and only treats symptoms, but if it actually does halt or slow disease progression as it so far appears to do, that could potentially buy you time until a better treatment or cure comes along and that in itself would be huge for most PWP's! So far, the longest it has taken to find the correct dose is in the 6 month area, but most find it before the fourth month and then there are the lucky ones who find it on their first attempt. It is a relatively inexpensive and simple protocol. As with all things PD, everyone is different. Dr. Costantini does not charge for his email consults and does not sell anything. The correct type of thiamine can be found on line from multiple vitamin suppliers.
In terms of results, it seems that the best that has been seen on this forum is about a 90 - 95% reduction of symptoms while the worst is 0. The majority do seem to respond, but only a handful on this forum have been on thiamine long enough to reach maximum improvement which is estimated to occur between 6 months and possibly a year and a half after the correct dose has been established. I think the longest that someone on this forum has been on B-1 is around three years while the majority are still under 6 months.
For those who are considering testing B-1 / thiamine or just want to know more about it and what to expect, everything you need to know before you contact Dr. C, can be found here :
Hi Art, my husband is doing really well now on half a viale twice a week. It is extraordinary how much better he looks and feels! To begin with I was overdosing him but it was hard to tell if he was worse or just not improving as he was in a bad way. There were glimmers of improvement during that time that made it even more confusing! I am going to do that pull test soon and send a video to Dr C. His balance is so good now! I love this forum and I would not have heard about Dr C if I hadn't found out here on healthunlocked. Fingers crossed that with the trio of sinemet, Atremoplus and Vit B1 my husband can look ahead with more hope.
Hi Nellie. I'm very happy for you. The PD is not easy to understand, but in the end with the right precautions everything will be for the best. The dark days are over forever. (but we never lower the guard) Gio
Congratulations to you and your husband on, as you describe, extraordinary results!!! 😊😊😊 I am very happy for the both of you because although it is your husband who is the PWP, I know that it has a major effect on your life as well and that is why I congratulate you both!😊😊😊
The two of you are a perfect example of the ups and downs that are experienced by many on their way to finding those same extraordinary results! It would have been so easy for the two of you to just throw in the towel during some of those "lows" along the way and it was quite apparent from your previous reports how hard those lows can be. You can't know the future, but just imagine now, if you had actually given up a month ago during one of those low periods!
I bet for the two of you, it probably often felt like an eternity since you had started testing thiamine, especially any time you hit one of those lows, but according to your original post on the , "who is taking thiamine thread", it was just three months ago! Based on that, you are right at the average amount of time that Dr. C says is the average for his patients in Viterbo ! That sounds like the voice of experience!
Yours and your husband's story can offer so much "real hope" to so many other PWPs who are just as the two of you used to be! Although it has only been three months, it seems, from your previous reports, that the two of you hit almost every low and hurdle imaginable !😡
Nellie, if it is not too much trouble for you, I ask that you reply to your original post on the, " who is taking thiamine thread" where you only stated that your husband was going to be starting thiamine in one month, and tell about your thiamine journey so that other PWPs who are currently in the position that you and your husband used to be in, can see hope in their future at a time when things are really looking quite hopeless! I would do it myself, as I sometimes do, but your's is such a powerful and full story, it can best be told only by you because you know every single bit of what your husband and you had to go through to get to this "extraordinary place"!!! By adding your complete story to that thread will give it maximum exposure and I know this because I am notified each time someone follows that thread and I can't even begin to count how many times that thread has been followed since it went up! This can also be a way of showing your appreciation to Dr. C because it helps get the word out about his protocol to the very people it needs to. There is no rush and I do not mean to put pressure on you, but you and your husband have a great story that should be told to as many PWPs as possible!!!
Here is the link to that thread and you will have to scroll down the page less that one fifth of the page as seen on the side bar as you scroll.
Thank you very much for taking the time to update us along the way and please realize that Dr. C has said that maximum improvement is seen at 6 months+!
cincinnato, I understand that you and Dr. C are saying thiamine will not make a person 100% free of symptoms, but it sounds like you both are saying that, provided the opportunity to adjust to the correct dose, it will benefit everyone?
Hi there, the B1 did not work for me either. If been diagnosed for going on 6 years and I take the normal cd/ld, azilect , Comtan and was hoping it would help with my symptoms and fatigue. It actually made everything worse . I do exercise and run and I am all for alternatives to go along with the protocols, but what works beautifully for some , does not always work for others. I’m sorry it wasn’t helping you. I’m happy for the ones who feel it’s the ‘cure’ for PD , but it’s not for all of us and that doesn’t mean we aren’t giving are total effort to the regimens . Keep positive , you are not alone. Karen
I am very interested in your thiamine experience. Can you tell me more about your dosing and how many adjustments you had to make? Also what was Dr. Costantini's replies to you through the adjustment process?
Hello just wanted to mention that Dr. Derrick Lonsdale has been studying thiamine for decades and he states that in someone who has been deficient for a while a paradox reaction occurs. He said there will be a worsening for up to 4-6 weeks then the improvement. I’ve been emailing him about thiamine because I’ve been deficient and I felt worse taking it. He said keep taking at a lower dose and the paradox would go away. He has done extensive work on thiamine and him and Dr. Costantini need to be made aware of one another.
I don't know if Dr. Lonsdale is aware of Dr. Costantini, but I know that Dr. Costantini is very aware of Dr. Lonsdale! He holds him in very high regard! I suspect that Dr. Lonsdale is aware of Dr. Costantini, because Dr. Lonsdale is very aware of almost all things related to thiamine and they both have many published papers!
Btw, many of Dr. Costantini's patients show normal serum levels of thiamine before starting on his treatment, but clearly this does not mean that the brain is getting enough B-1 at these normal levels and this is why Dr. Costantini feels that there may be some defect or deficit in the transport mechanism that gets thiamine to the brain, but studies would be needed to confirm this.
As it turns out, Dr. Lonsdale is aware of Dr. Costantini and has mentioned him in some of his recent studies and recently contacted him to get a quote! Small world, this thiamine!
It sounds like Dr. C and cincinnato are saying that the right dose for each person can eventually be found and when it is, they may not be 100% symptom-free, but they all benefit substantially. Is this right?
the note he sent to me when i inquired was that at the very least it will halt the progression of pd (that's the minimum effect) ...though he did believe there can be symptom improvement also
Started B1 in March 2018. It helped me a lot. I have days when I'm symptoms free with a little or no tremor. But the most important thing is it cleared my fog brain, anxiety and depression. I was pessimistic when I started. The single negative was some skin rush on my abdomen sometimes which goes away if I make 1-2 day break. I'm taking 2 g/day. I do not take any other medication.
You are not the only one who experienced discomfort and rigidity after trying high dose of B1. I contacted Dr. Constantini in May this year and started my high dose of B1 on the first of June. 2g after breakfast and 2g after lunch. For the first three days, I was more energetic and felt very good. I followed John Pepper's first walking and I noticed that my speed was getting faster. But, on the fifth day, I noticed that I was more rigid and found myself very hard to tuck my shirt into my pants. I felt hungry all the time and feeling internal shaking most of the time. I am having sinemet 4 tablets 100/25 a day and Sifrol 3mg a day. Normally, the off time is around 11 o'clock and after my 11.30 a.m dose of Sinemt and Sifrol, I feel normal. But, after taking B1 4g, on the off time was longer. The medication kicked in after my third dose of Sinemet. Therefore, I emailed to Dr C and he replied straight away, saying that it is a good sign. My nervous system was still in good condition and that is why I get this kind of reaction. He told me to stop B1 for 5days and restart with 2g a day. I followed the instruction and I felt the same, more rigid and hungry , shaking internally. I email to Dr C again and he told me to have 1g every other day. I followed that and felt the same as before. Then, I decided to have 200mg everyday without telling Dr C. No improvement and I stopped my trial. I am really envious of those lucky people respond to the high dose of B1 and have better lives. I still believe this B1 protocol but I am one of the few people who do not respond properly. I have PD for 4 years and not the tremor dominant type. I have weak and rigid left hand and leg, non motor symptons like anyone else. Within that one month trial with B1, I gained 3 kg.
The fact that you got benefit in the first three days suggests that you are responsive, but one month is nowhere close to enough time to find your exact dose. Even the doctor's patients in Italy average about three months to find their correct dose with his direct supervision whereas he has to determine your dose without even being able to see you and how you are reacting! Some people need as much as 6 months to find that dose. I hate to think that it might work for you and you miss out on that opportunity! In the grand scheme of your life, it might be worth investing the time.
But it never comes to anyone's mind that if it b1 reactivates the energetic and functional processes, perhaps the Ldopa in the body is consumed faster and made insufficient? could it be or not?
I believe this is a good point. I don't have the answer of course, but I've wondered essentially the same thing. As I understand it, Dr C works with the patients who come to see him by adjusting both B1 and their ld/cd doses. cincinnato, can you tell us if this is true?
Related to this, I've also wondered if the activity level might affect the dose of B1. I would be willing to bet that those on this forum tend to be much more energetic and exercise more than the average PwP who just happens to live near Dr C's clinic. This could possibly explain why Dr C's patients from this forum seem to need less B1 than his Italian patients.
To sum up these 2 ideas: more active exercise (initially made possible by B1) might require an increase in ld/cd meds. Being more active might also reduce the proper dose of B1. If all (or part of) this is true, then the dosing becomes more complicated and I can see why it might take 3 or more months to get it right for some people.
This is total conjecture, and I'm probably wrong on several points, but I think that we need to think outside the box and share ideas like these.
Mah cellular biochemistry is very complex and give a comprehensive explanation maybe no one in the world can do it. There are also phenomena such as refeeding syndrome just to give an example of the complexity of the thing.I think that at the moment already having something like the b1 is a great thing even without a theoretical explanation of why it works. In Italy we use injection b1, much easy.
Thanks maungwin56 for your post on this thread. I really feel for what you have gone through. My experience is similar although not as varied or as lengthy as your trials. I have to say that (somehow), we have to give this thiamine another try - at some stage. I don't have any tricks up my sleeve and so I'll most likely be asking Dr C on what dose to resume when we next communicate by email once my planned suspension period has ended. I hope you can find relief from your symptoms even if it is by some means other than thiamine. I believe in Dr C and his thiamine protocol. I just wish there was a quick (and more scientific) way to determine the optimal dose for each user. At least, we would then be on the home stretch! Best wishes.
How is your B1 therapy ? Dr C used 2-4 g but this dose was particularly effective for Italians. Other ethnic groups have found that it worked with less. My husband started on 500 mg but when it was increased to 1 g symptoms got worse. I had to keep stopping and reducing until now we are at 450 mg a week. Mon, wed, fri 100 mg a day, Tuesday, Thursday, Sat 50 mg . Rest on Sun. Seems to be optimum. If you read the thread above, Dr Lonsdale also recommended reducing when symptoms worsen
Hello Millbrook, Thanks for the feedback of your experiences with the B1 / thiamine protocol. I gave B1 a longer break than I intended back in November 2018 because my neurologist wanted me to try a succession of dopamine agonists to take some of the load off my main levodopa / carbidopa medicine. I didn't want to confuse things with raising & lowering B1 (in the background). They say: "Don't muddy the waters!". Too true. Sadly, each agonist produced little or no effect and my condition has significantly deteriorated since. I am scheduled to get an opportunity to try Apomorphine in a couple of months. Meanwhile, if I can liberate myself from some of the frequent 2-hour+ bouts of pain this PD inflicts on me daily, I shall try to exercise more. Meaningful exercise or any movement is a tough one when you are in a lot of pain. I've started to reduce my reliance on a high-carb diet & I hope to edge further in the direction of a Mediterranean or even a Keto diet. I should have done this months ago. Returning to the B1, I have recently purchased some more HCL thiamine powder with the intention of giving this therapy another trial soon. I have recently been distracted by the prospect (however remote) of gaining some relief from CBD oil. I hope to write further on this soon. I have not encountered really significant benefits to date but it's early days yet and there is a lot to learn about CBD. Sadly, our government here in the UK is not as informed or enlightened as some authorities overseas. Our government insists in maintaining it's archaic, ill-informed and unhelpful attitude towards a substance which, under proper State supervision can surely provide many with much needed relief from pain and debilitating symptoms . More on this another day. Thanks again for your valued feedback. Best wishes to your family.
Sorry to hear that you are not better. Since you have already purchased your B1 powder, do keep a diary of your symptoms and dosage so you can monitor if you need more or less. Read Roy Prop’s Facebook page on HDT and how it has helped him. Art also had lots of information on HU. Talk to your doctor and ask if he can help monitor you. Quite a few people have benefitted from HDT on this forum and you can ask them questions on their journey. For those who felt it did not work it could be too much. I am encouraged by those who are taking HDT and have stopped and even reversed its progression- Nellie 58, ion_ion, jimcaster, Roy prop. ( I am not stalking you 🤣 ) and numerous others who are quiet but following closely. Remember it takes time to find the right dose so don’t be discouraged.
Since writing my main post and many of my replies, I have received an email from Dr Costantini who still feels confident that we can (together) arrive at the correct dose for the thiamine. treatment. Thanks for your encouragement.
I tried 500g a day but it was the same result, rigidity got worse. So, I remain 100g a day of B1. I tried 200g but after 3 days I got the same reaction. You may be right on your assumption that High dose Thiamine is good for Italians or (may be Caucasians too). I am Asian and I already have Thiamine from rice in my system. That's what I think. I have a plan that I will slowly increase B1 intake at one point PD progression is noticeable for me. I am jealous of the friends in our community who have good results with Dr C's advice. With 100g a day, I feel alright. Without B1 100g and B12 1000mcg, I feel a bit tired. I still believe in Dr C's treatment even it wasn't good for me for the time being.
If you read Art’s response to you he noted that the first three days you felt good which means that you are responsive to vitamin B1 hcl. My husband has been on B1 for 3 months. We have not found the right dose yet. But we are trialling really low doses now. You may be right about the rice. Keep a diary about your symptoms, rice intake, level of activity and that may lead you to the elusive dose. B1 also works in synergy with your meds as shown by Dr C.
The key seems to be improvements with right dose and worsening at too much. You can read more about it on Roy Prop’s Facebook page on vitamin B1 therapy. Some members are only taking B1 and are not on meds and some are doing well with both. We can only share experiences and keep encouraging one another to keep trying whatever works. What you decide on depends on you. Remember that 100 mg of B1 hcl is 8333% of daily requirements. Now you know 200 mg is too high for you the band is between 100 mg and 200 mg. you can tweak it till you get the best results. We are breaking the 100 mg into half now. It makes a lot of difference.
What do you mean by you will slowly increase B1 intake when PD progression is noticeable for you?
The right dose should improve your non motor symptoms . You must work on the correct dose now- this is one promotion you do not want. You can ask other members on HU who are on B1. They know more than I do. Art had posted a list of 80 symptoms that were reportedly improved on B1 and it was amazing.
Thanks for your advice. I will start with 150mg and see how it goes. I have tried 200mg a day for acouple of times and stopped due to that rigidity which I cannot tolerate. One physician told me that if I want to try B1, I should try for a couple of months to see the real result which I noted.
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New website to share information about high dose thiamine(B1) therapy: www.B14PD.com
Increasing my dose of B1 after 4 years and 7 months
Exploring Thiamine high dose HDT and alternatives. Also introducing myself to the group.
