B1 Thiamin

[pdwife41yrs]

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!

[Hidden]

Diagnosed 2012

My regimen:

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:

Two hours apart, 7x day, C/L 25-100. Bedtime 1- C/L 50-200 ER.

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”.

Join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... …

Parkinson's Relief, Questions and Answers

[pdwife41yrs in reply to Hidden]

Thank you, for sharing, it really help to hear it from others.

[jeeves19 in reply to Hidden]

You’re on more than 1000mg of CL a day Roy. How could you have any symptoms on such a high dose?!

[Hidden in reply to jeeves19]

Search YouTube

Dr. Fahn Myths and Mistakes of treatment

[M-o-ggy]

I started on a low dose and gradually increased it over a few months to 4 gram a day. I am trying to decide if I should go higher.

I wasn’t expecting to see any immediate improvement but within days even my sceptical self was convinced.

My dread now is what happens if I go into hospital as the B1 is not prescribed

[pdwife41yrs in reply to M-o-ggy]

Amazing, thank you for sharing.

[LAJ12345 in reply to M-o-ggy]

I suggest you keep a hospital emergency bag packed at all times with your “vitamins”. Surely they would let you take your own vitamins?

[pdkid]

hello pdwife41years - - - wow 41 years, amazing!

here is a link to where people have been posting their doses and experiences.

you are right, its different for everyone and you will have to be patient with experimenting a little bit... best of luck!

healthunlocked.com/parkinso...

[pdwife41yrs in reply to pdkid]

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.

[Gioc]

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.

[pdwife41yrs in reply to Gioc]

Will definitely do, thank you!

[Gioc in reply to pdwife41yrs]

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.

[pdwife41yrs in reply to Gioc]

I read the many benefits of B1, but to hear it from PWP is very inspiring.

Thank you, it is very much appreciated.

[Zella23]

My husband is taking 1500gms ( 3 x 500gms) B1 twice a day in the morning and after lunch. Dx nearly 5 years ago.,

He also takes Magnesium L threonate 1500gms split doses, and magnesium bisgylinate 500mgs per day. Plus other recommended supplements.

He is on Modopar (C/L) 100/ 25 three a day and a half dose in the morning. This is less than he used to take.

Takes half dose of Azilect a day since December 2019 and has added in Amantadine recently as he was getting facial and body dyskinesia.

He is still mobile and exercises in the gym and can walk a couple of miles.

The B 1 he added in last June and started on 500 mgs twice a day and built up.

He told our new Neuro about all the supplements and he said carry on with what you are doing, he did say Vitamin D was important.

Good luck with your B1 journey.

[pdwife41yrs in reply to Zella23]

Th Neuro seemed happy with your husband’s situation, that awesome. Thank you for sharing, really helps with our PD journey.

[Hidden]

thiamine hcl...b1...500mg BID , one in the am one around 1-2p.

[pdwife41yrs in reply to Hidden]

Thank you!

[Hidden in reply to pdwife41yrs]

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!

[pdwife41yrs in reply to Hidden]

Great info, thank you!

[Jlloy5]

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.

[pdwife41yrs]

It is indeed interesting, and proves that everybody is different. Thank you so much for sharing, and good luck!

[Astra7]

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.

[LAJ12345 in reply to Astra7]

I wonder if that’s it working? Buzzing with all the actions it’s speeding up?

[chartist]

pdwife41yrs,

Here is a link that will take you to information about HDT/B/1 and should answer most if not all of your questions about HDT/B-1.

healthunlocked.com/parkinso...

Good luck to you and your husband!

Art