I have decided to make this post as a general guide to explain to new HU forum members how Dr. Costantini tried to determine the correct B1 dose for each of his patients via email. By doing this, one need only click on my icon to find it among the 14 posts that I have and this way, I won't have to write it again when anyone asks about HDT dosing.
My hope is that this page will answer almost every question about HDT/B1.
On this 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 10 to 15 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.
It should be mentioned here that Dr. Costantini also required a regular video of the push/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:
Here is a link to a person with a better response :
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.
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 7 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.
Here is an organized link to all of the information that Dr. Costantini left with us on this forum :
IN MEMORY OF DR. ANTONIO COSTANTINI, A GREAT AND CARING HUMAN BEING WHO PUT HIS PATIENTS FIRST AND DID HIS BEST TO MAKE THEIR LIVES BETTER! HE GAVE TIRELESSLY FOR HIS PATIENTS AND HE IS DEFINITELY MISSED. THANK YOU FOR HELPING MAKE THE WORLD BETTER!
TILL WE MEET AGAIN MY FRIEND!