Your doctor doesn't know everything. Even doctors who keep up with the latest therapies for chronic diseases, cannot learn it all. We have to be our own doctors. We have to research; we have to learn. I, for the life of me, cannot understand why every Parkinson's patient is not taking Vitamin B1. Learn about it. It's the closest treatment for a cure, there is. Your doctor probably has no idea. He/she is probably only able to understand and prescribe drugs. Our own, local doctor takes classes continuously and keeps up with the latest therapies. He did not know about vitamin B1. We only found it by accident. It improves symptoms 50% to 80- 90%. You just have to take the B1 for the rest of your life.
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bepo
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I fully support this - I have been on B1 for 9 months and all my symptoms have improved. However I do not know how long it gives respite as my right hand jerk is now getting worse. I am on 3g per day and tried reducing it some weeks ago but soon returned to 3g . Might try increasing it
My husband even though he has had PD diagnosed since 2014, is still considered to be very early stage. His pull test was a 0. We keep lowering the dosage, gradually. He started out at 4 g. Now he is taking 100 mg in the am, and 50 mg in the afternoon. His lip tremor is gone. He has no drool marks on the pillow. He seems happier.
From what I understand, you lower the dose gradually. I have also understood the symptoms can get worse after several months. The suggestion is to lower the dose. Give it a couple of weeks. Keep experimenting.
The amounts you are discussing are so low that there is little chance the thiamine is doing anything. More than likely any result you think you are seeing is psychosomatic and not lasting.
Thanks. We are still experimenting with the B1 dose. He is currently at 800 mg/day. When his symptoms got worse, we went to 1000 mg 2x/day. His symptoms got worse. I looked at his previous record and thought we could got to 400 mg 2x/day. We'll see if this works.
Dear Humph3, as I understand the protocol by Dr. Costantini, if a symptom worsens after a period of time, it could be due to damaged cells being repaired, so your body no longer requires this higher dosage. If I recall, the Dr might recommend stopping completely the Thiamine for approximately 7 days; then restarting at 1/2 dose you were taking. The symptom, in your case the right hand jerk, should disappear during your Thiamine "vacation". You may likely be in "overdose" and need to find your new dosage, by gradually increasing your dosage from 1/2 up slowly by 50 or 10mg until you feel good again. I HOPE SOME OTHER MEMBERS ADD TO MY DESCRIPTION HERE, SINCE WE ARE JUST NOW STARTING THIS PROTOCOL WITH MY DAD, SO I AM NEW TO THIS TOPIC, REALLY. JUST BEEN DOING RESEARCH...
Following your suggestion I stopped the 3 g daily b1 for 1 week and then resumed the b1 at half dose of 1.5g per day. So far so good - my symptoms have stopped once again. This really is a miracle cure! Thanks once again
That's wonderful, but can we use your experience on the dose please? Our doctor says we can try it, but doesn't have a clue on the dose. We have been advised to just take 100mg twice a week to start which we are now doing. How do we progress? Thank you. Caroline
Dosing is a real challenge. My husband started off with 1 gram twice a day. The second day, his tremor went away completely. I felt we were on to something. Then, it got worse. We have gradually reduced the dosage. Now, he is on 200 mg twice a day. His tremor has gone down. We keep experimenting. His tremor is the main symptom we focus on. When his symptoms Worsen, we lower the dosage by 50 mg in the form of powder.
Sorry for the late response flyswat. My symptoms were: freezing (for any thing up to 10mins), restless left leg, right arm shake and a significant body jerk on my right side. I started on 4g of B1 (as per dr C) per day and noticed a significant improvement in all of my symptoms within a month. I then stopped using and within a few days all symptoms returned. I took 4g a day for the next 3 months and reduced it to 3g per day just be cause it was easier (breakfast, lunch and evening). I took the 3g dose for about 14months with no freezing and no significant body jerk. I still had a small amount of arm shaking and restless legs but these were not significant. However, after 14 months they started to return and took the advice in this forum to stop the B1 for 1 week and then continue at half dose i.e. 1500g per day. This improved the symptoms for about 6 weeks when the symptoms returned. So stop B1 for a few days and then half dose and carry on like this. I am currently taking 200g per day with no symptoms. Hope this helps for further info check out the high thiamin section of this forum and dr Constantini followers. Good luck
I started at 2 day (100 mg), after several weeks, went to 4 day... few weeks, then six per day. Recently, went to 9 per day. What works best for me is 1 every ~2 hours. Now Foods and Nature Made work well for me.
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