To PWP who are taking B1, kindly share the first time you took it, what time of the day, how much and it’s effect on you and when is the next dose.
I’m just overwhelmed at the moment and excited. Today, my husband started when he woke up at 5 a.m, 1-1/2 tab sinemet, 4 dopa mucuna pills and 2 (500 mg) B1 on an empty stomach. It’s amazing, he went back to sleep and woke up 5 hrs later and still “on.” It’s really a “wow” to me as he’s been taking his PD meds every 3 hrs. I’m really looking forward to hear from you. I realize everyone is different. Thank you!
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pdwife41yrs
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The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 8th year post diagnosis and have not fallen, not once, to the surprise of my neuro.
New schedule and new neurologist (as of December 2019), now I follow this regimen:
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules.
Magnesium L-Threonate 2,010mg per day.
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Thank you, pdkid for the link, it is indeed loaded with very useful info, and I am very grateful and thankful to HU for this amaxing second to none website. I learned so much about the many healthy/natural supplements that aids the PD naturally.
my advice is to make a short video of facial expression, speech, hand shaking, walking that documents the state of symptoms. It may serve as a comparison in the future to measure improves.
I've been using it for five years and I'm doing very well, the video will give you the objective proof that you need if you ever have doubts in a year or two that given the gradual improvement you will surely have, because over time the memory of how we were fades. This from a DR C patient since 2015. IMO do not seek at all costs a very high miraculous dose, but rather a dose that improves non-motor symptoms such as fatigue, balance and constipation that are more easily observable and therefore will give you the certainty that you need. IMO with time and a bit of luck (the lesion is different as an entity in each of us) even the tremor and response to levodopa could improve.
There are no toxic levels of Thiamine known today, thus there is no defined upper limit of intake. Vitamin B1 is only marginally stored in our body and excessive amounts are easily excreted in the urine. However, drowsiness or hypersensitivity to Thiamine is possible but rare. cheers!
I had to take it at bedtime for the first few weeks because it made me so tired. I do great on 2 500 mg capsules. Each time I try adding another, my tremors get crazy.
I keep trying it starting with a low dose but it seems to give me an inner tremor. Like everything to do with PD it’s different for everyone. I hope it works for you.
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Interesting B1 observation
B1 - a little confused 
B1 dosage warning
