High-Dose Vitamin B1 (Thiamine) for Parkinson’s Disease

Hi Connie,

I have decided to make this post as a general guide to explain how Dr. Costantini tried to determine the correct B1 dose for each of his patients via email. By doing this, I won't have to write it again when anyone asks about HDT dosing, just refer them to this reply.

My hope is that this page will answer many questions, for people considering B1, about HDT/B1 supplementing.

Forum, members have found effective daily dosing as low as 25 mg/day or as high as 5, 500 mg / 5.5 grams per day, but the majority are well below 4, 000 mg/day.

Dr. C would start his email patients at 4 grams in two divided doses per day, half the dose at breakfast and the other half at lunch with or without food in the beginning. At the beginning of first treating his patients by email it was 4 grams for everyone, but later he began starting them at lower dosing once he realized that 4 grams was too much for most people and people who weighed less and or had minimal symptoms. He still tried to start them on the high side in order to see if he could elicit a faster response, so in a case of a patient who weighed 150 pounds, he might start them at 2, 000 mg or 3, 000 mg and have them report back to him regularly how they were doing.
If there was a noted improvement, but then the improvement was followed by a loss of the new improvement and possibly a worsening of symptoms to as much as worse than ever before, he would have them stop B1 for 3 to 5 days and have them take meticulous notes during this time without B1. Dr. Costantini said that in his many years of experience with HDT, any new symptoms or worsening of symptoms that were brought on by too much B1, were only temporary and were soon resolved once the dose was lowered appropriately. He almost always used a 3 to 5 day break from B1 before restarting at a new dose.

What he was looking for was to see how quickly you lost the increased symptoms and how long it took you to return to your base starting condition. He also required that his patients take videos at regular intervals of themselves doing common things like walking, talking, writing, going up and down stairs putting socks and shoes on etc. He only required short videos because he was very adept at determining the overall condition of the patient and these videos helped him determine any changes that might be attributable to B1. He only required a 1 to 3 minute video, but I suggest taking longer 5 minute videos to make it easier for a lay person to determine changes from baseline, easily.
After the patient had stopped B1, the worsened symptoms had gone away and 3 to 5 days had passed, he would restart his patient at, often times, half the dose they had been taking, but this could vary for each individual. For example, if you lost the increased symptoms very quickly such as by the next morning after stopping B1, that would tell him that the original dose was close, but a bit on the high side and in such a case he might only take the patient down to 2, 500 mg or 2, 000 mg instead of 1, 500 mg (half) from the original 3, 000 mg. On the other hand, if it took a full five days to get back to your pre B1 symptom level, that was an indication that the dose was significantly too high in which case he would halve the dose from 3, 000 mg to 1500 mg.
It should be mentioned here that Dr. Costantini also required a regular video of the pull test as part of his patient requirements. The pull test helped him to determine an optimal dose. A good pull test in conjunction with significantly reduced symptoms was his way of determining when the B1 dose was optimized. Being a neurologist, he might also try and optimize the levodopa dose at this point also if the patient was already using levodopa. He encouraged patients to use both levodopa and B1 as the best chance to minimize motor symptoms, but some on this forum have achieved good results by using the herb, Mucuna Pruriens in place of levodopa, but that is another topic all by itself. Here is a link to the pull test of a person with a poor response as performed by Dr. Costantini:

https://youtu.be/Ijf326ZNAoU?si=GHCHSilsfGj_Z6eT

Here is a link to a person with a better response as performed by Dr. Costantini :

https://youtu.be/YEejV3NmY98?si=6pKklt84PKT-2Hfd

I am only giving this information as a general guide to how Dr. Costantini was determining dosing of B1 for his patients. This is not a specific dosing method for anyone, just a general idea of Dr. Costantini's dosing methodology.If you are one of the lucky ones that respond to B1, I would like to point out that Dr. Costantini felt that once you found your correct dose, that dose should be good for quite awhile, but he also found that in the 6 month to 18th month of HDT use, it may be required to take a short vacation from B1 and or reduce the dose very slightly. You will find that many members have adopted this thinking into their B1 regimen. Some take a brief break from B1 if they find their symptoms worsening and then get back on B1 with no change in dose, once their worsening of symptoms have subsided, while others take a break from B1 until the increased symptoms depart and then resume at the same dose, but reduce the dose slightly by taking one day of the week (the same day each week) off from B1. As you can see, dosing B1 can be very individualized and there is not and has never been one method or dose that fits everyone. The fact that the reported effective dosing reported on this forum is 25mg to over 4000 mg per day is a testament to the fact that one dose does not fit all. Lastly, it should be made clear that although the majority of patients respond to HDT, there are some who simply do not respond to B1 and there are some who take up to 6 months to finally respond to B1. Dr. Costantini felt that even a bad response meant that you could also be a positive B1 responder, but on that point, I am not clear because there is not enough feedback on this HU forum to verify that point.

Art

If you read up on AEP Calcium it repairs the damage of nerves. I was taking it for my fibromyalgia but it gave me a kidney stone so I had to quit. This is revolutionary for patients who have nerve damage.

I have been researching supplements for Parkinson for my 80 yo husband. There are several that I am interested in. My question is can you do supplements all together or should you do it separately??

Hi Peachie,

One supplement that has shown benefit in many people with PD, but not all, is higher dose thiamine HCL/vitamin B1 as discussed here :

https://highdosethiamine.org/

Another supplement worth considering is Citicoline as discussed here :

https://pubmed.ncbi.nlm.nih.gov/33279231/

Melatonin has also shown benefit for PwP as discussed here :

https://www.sciencedirect.com/science/article/abs/pii/S0303846720302213

and here :

https://www.hindawi.com/journals/omcl/2021/5577541/

There are others that have shown benefit such as mucuna pruriens, a few specific probiotics, vitamin D, vitamin B2 and vitamin B12 but these three have supportive studies and are compatible with most typical PD medications, although Citicoline may require a reduction in carbidopa/ levodopa (C/L) dosing depending on the dose of citicoline used because citicoline is thought to increase dopamine receptor density and this could be quite useful in delaying resistance to C/L over many years and could potentially delay the dyskinesia effects associated with higher C/L dosing that is often needed as the disease process progresses.

Art

Darn, Art I forgot he is taking 6 Carbo-leva. His very healthy otherwise no colds or flu in many years.

Sorry, thanks!

Thanks so much for your reply. Can all of these supplements be taken at the same time?? I am trying to split them up for morning and afternoon. I am aware some should not be taken late in the day. Currently taking Vitamin D 10,000, Quercetin 500mg, Zinc 50 mg, Centrum Silver for men 50+, B complex, C 2200 mg and taking borax in water. Soaks in Dead Sea Magnesium. RX's Allopurinol 300mg, Simvastatin 10mg, Sertraline HCL 100mg, Lisinoril 40 mg. ASA 325. + ivermection bi weekly.

I have purchased Menthylene Blue and sodium scorbate, Thiamin 500ms, Melatonin 20mg. Plane to purchase citicolene and anything you think he should be taking. Sure appreciate your help!

Hi Peachie,

Generally, B1 should be taken earlier in the day such as half the dose at breakfast and half the dose at lunch and preferably not after lunch because in some people it can keep them awake. There is another type of thiamine that is dosed at a lower dose and less frequently, but you will have to join a facebook group in order to get information on that one.

https://www.facebook.com/groups/parkinsonsb1therapy/?ref=sharehttps://www.facebook.com/groups/parkinsonsb1therapy/?ref=share&exp=93fa

Normally, I suggest that you only add one supplement at a time so you can determine what if any effect it is having before adding another supplement. B1 is compatible with all standard PD meds, but getting the dose correct can be difficult. Your B-Complex should be complimentary to the B1 and the dead sea salt soaks or the use of a bioavailable form of oral magnesium should also be complimentary to the B1.

Once you have established an effective dose of B1, then you can consider adding another such as Citicoline.

One at a time!

Art

Karen,

Amazing and wonderful for you.

Did you buy basic powdered thiamine? If you do not mind. Could you say exactly what you bought, what form? Thanks.

Janet

Karen,

I am very excited for you about your results using vitamin B-1! Congratulations! Your willingness to consider something other than the standard meds is going to pay dividends for you through the years! Standard PD meds can not currently slow disease progression at all, only suppress symptoms, but what you are doing is very proactive and will be able to do something important that the meds can't! With standard meds you just watch your symptoms worsen and neurologists will do their best to adjust your meds, add meds and give other meds to help try and offset the side effects from the meds they give you, but all the while the disease continues to progress and your symptoms will increase and worsen, but you have stepped out in front of this horrible disease and are changing that course for the better!!!

I was wondering what result you are getting with the "push test" compared to your push test pre-B-1? Also I am curious as to your improvement on your UPDRS test since adding thiamine? Are you at least at a 50% improvement on your UPDRS test?

These are two tools that can help confirm whether your B-1 dose is optimized or not. You can achieve symptom improvement with a dose that is too low, but you can achieve maximum improvement at the optimal dose which can likely be found by continued testing on your part. I can tell you more about that if you are interested.

You are already past the "honeymoon period" at 8 years since diagnosis, so your symptoms were more likely to decline at this point, but B-1 is showing the potential to very significantly slow or halt disease progression at the correct dose in well over 3,000 patients now. There is currently only one patient with a 5 year old DatScan and a recent DatScan. That recent DatScan shows no disease progression in the 5 years! This is very exciting news, but there are many patients who have been on B-1 for over 5 1/2 years who have taken a B-1 holiday until their symptoms returned, but in no case have the symptoms been worse than when they started B-1! Once the symptoms had fully returned, they started back on the same dose they had been taking and once again the symptoms diminished or were fully suppressed! These B-1 holidays can be taken on a regular basis with no ill effects. Usually in the range of one month to three months.

Another major advantage to B-1 is that once you have fully optimized your dose, perform a good "push test" and are stable, you should not have to increase your Sinemet or other Levodopa / Carbidopa dose and may actually be able to reduce it a bit. This is the exact opposite of what normally happens on these meds which usually need to be increased as the disease progresses until they are finally no longer effective!

Another point I would like to make is that it is possible to not only optimize your thiamine dose, but you can also optimize the dose of your C/L med to the B-1 dose to achieve maximum improvement, especially in terms of motor symptoms, but the B-1 at the proper dose is also very effective against non-motor symptoms!

Karen, please keep us posted on how you are doing and if you have any questions, let me know.

Art

IT HAS BEEN A WHILE SINCE YOUR POST! I was wondering how you are and if the dose you mentioned was your final dose. I'm going through the diagnosis process right now. I don't think the neurologist is implied to provide a diagnosis to me. We'll see. I don't currently take any medication that she has written as yet!!!

Their is a skin test (SynOne) and a MRI test that can give a definitive diagnosis now. The skin test is easier and cheaper since ins pays for most of it.

Hashiaussie,

I'm glad to hear that your mother-in-law is doing well on thiamine! One question, is your mother in law a fairly small person? The reason I ask is because the dose she is taking is nowhere near the doses that the 45 patients in my previous post are taking and Dr. C has told me that he gives up to 6 grams per day in some PWPs and even higher in other diseases that he treats with thiamine. He also told me that he has found that some non Italian people require less thiamine than most of his Italian patients.

In any case, it seems that the hard part is for some PWPs to find that correct dose and it has taken up to 6 months in some cases. Basically trial and error and working directly with Dr. Costantini via email has proven to be the most efficient way to find the most optimal dose in the shortest time possible and I feel it is his experience with over 2,500 patients that makes it easier for him to determine that dose. Definitely, one dose does not fit all!!!

If the dose is too high, a worsening of symptoms can be seen. If the dose is too low, no benefit can be seen. In the 45 I am following, the average daily dose appears to be around 3 grams total per day, half at breakfast and half at lunch. Most of the 45 are using 500 mg capsules to achieve these doses. The capsules are easier to swallow than the 500 mg tablets. Thiamine can also be purchased in pure bulk powder which has no fillers, but it is bitter and will have to be mixed in something sweet like a sports drink. Avoid using any citrus type juices to drink your thiamine down with as they can alter the availability of the thiamine.

From what I have seen from the 45, benefits can range from relief of anxiety, depression, constipation, bradykinesia, stiffness, dizziness, dystonia, muscle cramps and when used in conjunction with the correct dose of Levodopa, tremors to name just some common ones from a fairly extensive list of potential symptom improvements. Add in the possibility of potentially stopping disease progression as long as you take it and I think most PWPs will see the value of this supplement!

Dr. Costantini advises not to take thiamine in the evening as this can cause sleep issues in some people, but his daytime dosing has improved sleep in others.

Some people prefer the IM injections, but these require a prescription and can be ordered online from a compounding pharmacy in Northern California.

He also uses the standard, "pull test" as one measure to help determine when the dose is optimal and balance is maximized. It is common for people to start seeing the benefit within the first two weeks, but it is also common to see a worsening of symptoms after three weeks or more and this indicates that the dose is now too high and needs to be adjusted downward. If no benefit is seen after three to four weeks of supplementing, the dose is likely too low and will need to be adjusted upward.

Once your dose is established some patients have been able to reduce some of their PD meds. Another good point to his protocol is that once you have established your correct dose, the effects can last for a while, so you don't have to panic if you miss a dose or two or three or four or five!

His longest patients on thiamine are currently at the 5 1/2 year mark with no signs of disease progression.

I consider this the number one supplement for PD followed by vitamin D and the proper types of magnesium!

Art

Hi Art...My great thanks for the information on Thiamin for Parkinson's Disease problems. That was a fascinating read for sure.

As regards your PD patients, I thought it might be useful to add certain things that I've learnt through using the orthomolecular approach.

Dr. Joel Wallach, a well known natural healer, pathologist and veterinary doctor, has also found one of the main causes for congestive heart disease. In one of his online discussions, he told a story. He was asked for help by an Indian zoo authority who were looking after dolphins. They said that alot of their dolphins -- an unusual number -- were dying and they didn't know why. When Dr Wallach did his first post mortem on one of the dolphins and when he looked at the dolphins heart, he immediately knew why the dolphins were dying. These sick dolphins all had congestive heart disease. He said the dolphin's heart was massive - three times its normal size. He eventually chased this problem - caused by lack of thiamin in the dolphins diet - to the fact that the zoo authority was giving the wrong kind of fish feed to the dolphins. The regular fish feed had zero thiamin. So Dr Wallach advised them to feed the dolphins another kind of fish containing sufficient amounts of thiamin and no further unexplained dolphin deaths occurred.

My purpose in telling the above story is to suggest that thiamin would be useful at higher orthomolecular dosages for any problem involving inflammation and would particularly be useful for nerve pain and repair(and beneficial for the brain if there is any inflammation).

The second thing I would mention is that whenever I advise higher doses of any B vitamin like thiamin, B6 or niacin, I would always also advise that all the B vitamins be supplemented as well. The reason for this is that all the B vitamins seem to have a dependency or close relationship with each other and seem to work synergistically with each other for a better overall healing effect. So whenever I advise a higher dose of any particular B vitamin, I always advise additionally taking B50 complex or brewer's yeast as well.

The last thing I would mention would be to try and improve the transport and delivery of thiamin(or whatever vitamin/nutrient) to the inflammation site. After all, if your veins or arteries are blocked or restricted at the periphery for whatever reason, then few nutrients will be able to reach the problem site so little healing is likely to occur. This is particularly true at the periphery of the body -- when you are trying to deliver nutrients and reach problems occurring in the hands, feet and brain areas. What I usually always do is use niacin to both open up the capillaries and safely thin(or unclump) the blood to try and ensure that the delivery pathway is clear and free of constriction or obstruction in order to maximize delivery of the supplemented nutrients to the peripheral site. You could also use other nutrients like magnesium chloride, capsiacin or gotu kola for the same purpose if you prefer.