Dear Forum Members,
Some of you may have noticed that I have removed all of Dr. Costantini's information that I had spent so much time trying to put together for the members to use. I would like to explain why I did this.
When Dr. Costantini was available to do his consults for the forum members, he would answer all of your questions and manage all other PD related questions as well as counsel you on the safer use of thiamine. What I soon realized is that without Dr. Costantini to monitor his patients, newer members were starting to rely on the experience of other members and this is not safe, period!
There are "so many things that can go wrong" in a situation like this that I feel you must put the safety of your health first. In order to do that safely, requires your doctor's involvement in "all of your treatment"! This includes vitamins and supplements. Many people think that how can vitamin B-1 be a threat to my health? The truth is nobody knows that answer at the doses being used for his protocol for any length of time beyond his 6 years of experience with his patients in Italy.
I am not denying or confirming the efficacy of his protocol as adjunctive treatment to standard PD medications, but what I am saying, is that the safety of your health is much more important and the only way to do that is by having your doctor supervise all that you are taking including vitamins and supplements! Some of you may disagree with me on this, but what I saw was happening is that people were starting to follow Dr. Costantini's words on the forum without any professional advice from their appropriate doctors, and this can not stand! Without your doctors supervision, you are basically shooting in the dark and this is just plain risky as hell!
Why take a risk like that with your health? As soon as people started asking on the forum for advice on dosing without a doctor's involvement, I realized that it was time to take all of Dr. Costantini's information down, as there would no longer be a doctor involved in his treatment protocol. What if someone were to have a reaction to the thiamine that has not yet been seen? Without your doctor's involvement, who will know how to treat any potential complications that may arise from that use, whereas, if you include your doctor in that protocol, then he will know exactly what to do in order to resolve the issue. Without doctor involvement, you are merely guessing at everything and that is just plain dangerous to your health and I will not be involved in that type of behavior!
The current studies are insufficient to confirm the safety or efficacy of thiamine as adjunctive treatment to standard PD meds and this again means you are flying blind and potentially endangering your health and I absolutely do not agree with that approach. If you are insistent in using thiamine, then you absolutely have to have your doctor supervise its use. If your doctor won't do it, find one that will! To do otherwise has great potential to make your health situation worse! A person with PD already knows it is a difficult disease with many symptoms and complications. Do you really want to risk adding to those boat load of symptoms that are PD? Well that is your choice, but I will not support such a plan of action that does not include your doctor's supervision, period!
Please do not ask me any questions regarding the use of HDT/thiamine or vitamin B-1 as my answer will always be the same, "no answer at all". I am not a doctor and as such can not tell you what to do nor can anyone else on this forum , but I can tell you that it would be quite reckless with your health to not include your doctor in what you are doing! I could probably give a fairly lengthy list of reasons or potential combination of reasons why taking thiamine could be a problem, but that is not the point of this post.
THE POINT OF THIS POST IS THAT YOUR DOCTOR BE INVOLVED IN ALL THAT YOU ARE TAKING AND THIS WILL PUT THE SAFETY OF YOUR HEALTH, SQUARELY IN THE HANDS OF YOUR DOCTOR, WHERE IT SHOULD BE!
I thank all of you for taking the time to read this and I hope I have made clear that there is a definite health safety issue here that needed to be addressed! This is the last time I will speak of thiamine and I hope this puts more pressure on the Michael J Fox Foundation to either fund or do the needed scientific research to either confirm or deny the efficacy and safety of thiamine as it relates to PD. Clearly there is great interest in thiamine as regards PD, but until the correct studies are done, why risk your health? At a bare minimum, you have to have your doctor's supervision if you are going to try it