Background: I started the thiamine program without asking my Neuro, not knowing that it should be taken on an empty stomach, that half the dose should be taken before breakfast and another half dose just before lunch. how much to take and without fully understanding what the outcomes might be. Also, I read that magnesium might play a part in the successful outcome. I started immediately taking 4 grams of Thiamine HCL daily. After 8 days my energy level shot up higher than it has been since I have been a PWP. Then around day 72 the energy left me as quick as it arrived. I was in a bad situation.
I WONDER WHAT POSITIVE RESULTS I MIGHT HAVE RECEIVED IF I HAD FOLLOWED THE RECOMMENDED PROTOCOL?????
Easilly suggested that I write to Dr. CostantiniI ask for his advice about what I should do now. He had every right to scold me about not following the protocol. Here is what he said:
Taking the right amount of thiamine the patient can not get worse. If it gets worse may be two causes:
1) With the cell recovery the dose thiamine may have become too much for you. To ensure this, you must suspend the thiamine for 10 days, both the good effects may persist months, and in 10 days the bad effects subside.
2) the vitamin b6 which is contained in all the multivitamin may antagonize dopamine systems. So it should also suspend all vitamin-based supplements. Let me know how you are between 12 days and for the doses we'll adjust accordingly.
If you read his comments closely you will find lots of good (and new to me) information.
I stopped taking the thiamine and multivitamin and got ready to feel bad. SURPRISE, I STARTED FEELING BETTER. I played a round of golf on the first day that I stopped the program. My first round of golf in over three years. On the second day, another round of golf. Two days of golf back to back. That will go down in the record books. I am so excited to find out what Dr. Costantini will tell me what to do so that I can feel better than I do now.
I will post the information that I will send to Dr. Costantini, about how my health has been, by that time, over the past week and one half.
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Don_oregon_duck
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For my experience there are important things (thiamina and l-dopa) and less important things (all the others).When you do the right things with the important things you get results.
About 2 weeks ago. I stopped taking my mega vitamin/mineral in the am, about an hour after taking my b 1 because of severe rapid onset of fatigue. I stopped getting those morning dips in fatigue. Now, I take my other supplements ver sparingly. Still tired, but 50 % better than before.
It is often the case that when the thiamine dose is too high for a PWP’s needs, the treatment can be manifest itself as counterproductive and beneficial effects on the symptoms disappear or sometime even worsen.
It is important to start building up the dose in consultation with Dr. Costantini (and hopefully your neurologist/practitioners) to maximize the effectiveness of the therapy. Thank you for getting in touch.
We are facing skepticism and even several oppositions from other doctors and it is important to inform PWP that our protocol is effective on the basis of our observations but the therapy is to be considered in experimental phase. In order to get full acceptance from the rest of the scientific community, as we always say, we need a full-on open label test (for which a research structure is necessary for both logistical and financial reasons) and also that possibly PWP try their best to be in close touch with Dr Costantini and I to get the most support with the definition of the right protocol for each of you.
That being said, let me state that it is such a pleasure to read the comments of many of you about the relief from the symptoms you are enjoying and the improvements in your quality of life (playing golf! Right on!), that is such a huge reward for all these years of hard work.
Thank you so much for sharing your stories, we will keep doing our best to help you and other PWP getting their lives back from PD.
A special thanks to you, dr. Marco Colangeli, thank you so much for re-giving me a beautiful and interesting life with your wonderful discovery and for the great help you are giving here on HU.
Is there a possibility that the internet could change the rules for testing and approving a treatment? There would be substantially less control but a substantially larger group of people to follow on the web.
We may be breaking ground for those PWP'S, who follow us in the future, to have greater access to alternative (absence of medication) treatments.
Why do we call natural treatment plans alternative treatment and treatment with drugs normal? Should they be reversed?
Thiamine is already approved to be taken without need for a prescription in the US so there is nothing more to be done there on the FDA front.
There is also the matter of being approved as a standard of care by the applicable society of Parkinson's physicians. That would probably require a randomized controlled double-blind study. Some organization such as MJFF would have to fund it.
NO, that will not happen. The FDA is not that corrupt. What can and does happen is big pharma can have one of their shills publish a medical journal article saying thiamine doesn't do anything. I wrote about a case like this regarding vitamin D here:
Vitamins and Minerals for Bone Health and Reduced Risk of Cancer
Thank you for sharing dr. Costantini's suggestions-so much to learn! However, I am confused reading that vit. B6 "may antagonize dopamine systems"- I always thought that B6 increases dopamine, see link below
RE B6: "According to the University of Maryland Medical Center, vitamin B6 obtained from the diet acts as a precursor for a number of neurotransmitters, including dopamine. As a result, meeting the daily recommended dose of vitamin B6 helps ensure your brain can make the dopamine it needs to function properly. The university warns that excessive vitamin B6 supplementation can cause nerve damage, so carefully monitor your vitamin B6 intake, and consult a doctor before beginning vitamin B6 supplementation."
Don please send me the good doctors email. I have seen it and reminded myself to write eventually. That time has come, as like you, I just decided to seek a Naturpath and go with her recommendations. I think I have it all wrong and doubled up .
Mind you I have just finished 6 months of Exenatide and feel it has helped me somewhat. I am off it for 2 months to see if my condition ‘holds’ and believe it has as my meds intake has halved. It has been 3 weeks off. 5 to go.
Still need Madopar and I guess I always will but if I get no worse I can live with it. The vitamin regime could be a big help, if I get it right.
I feel all the correspondence is very overwhelming and I’m drowning.
I believe is very important to take vitamin B6, but at least two hours apart from taking any medication containing carbidopa. Carbidopa consumes B6 and it is very important to replace it. Levodopa has also been alleged to use up vitamin B6. I take 100 mg of B6 daily and that has not interfered with receiving benefit from high dose thiamine.
B6 is a cofactor/helper to many enzymes all over the body and brain in fact it’s needed to convert l-dopa to Dopamine. The effect of carbidopa is controversial . Carbidopa does not cross the BBB. Stick to Dr C’s recommendation
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