Has Anyone able to reduce PD meds with using HDT B1 Protocol?

[TL500]

Thanks for any input.

[JAS9]

I'm attempting to, but very slowly. I reduced my dose by 10% 12 days ago. I;ll probably reduce another 10% in a few weeks. The HDT does help a lot. I have less energy for exercise but I can still do it.

[TL500 in reply to JAS9]

Sounds good! Thanks JAS!

[AaronS]

I've gone from 4.5 pills (3x1.5 pills) a day to 2 in the morning and whilst i feel the medication cycle off i wait a hour or so and can generally keep soldiering on afterwards to the point i can still go abd hit the weights at 5:30pm after taking meds at say 7:30am

[TL500 in reply to AaronS]

Thanks Aaron. So you can try to go for 10 hours just with 2 pills in the morning?

[AaronS in reply to TL500]

Hi Tl, I try my best to stick to that, no it's not perfect once the pills wear off, I'm at about 95% normal on pills and when they wear off I drop back to 80%, my left hand gets stiff and kinda crampy, and i just slow down overall, but i still walk the same no issues, minimal tremor but I still can pretty much do what I need to get done that day, eg: be a dad, tend to work, be a husband and still exercise.

As for b1 I'm on 4mg a day

I hope this can help you out

[TL500 in reply to AaronS]

Thanks Aaron for your reply. It still sounds good that you have 80% when meds is off.

How long have you on B1 and how long have you tried to reduce meds? Thanks.

[Jennyjenny2]

My husband has been able to reduce his 3 x 100mg madopar to 3 x 50mg by using mucuna as well. But since starting B1 in January ‘19, most of his symptoms have either gone or greatly reduced. Every now and then we leave out the 5pm dose of madopar with no ill effects...maybe it’s time to try and stop that dose??

[TL500 in reply to Jennyjenny2]

Wow! I like that! Hope it works the same for me and all of us!

Can you share :

what brand B1?

How many per day?

How he takes it?

Does he take other things too?

Does he leave out 5pm dose often? on consecutive days?

Thanks.

[Jennyjenny2 in reply to TL500]

Hi TL500

We get the Thiamine HCL 500g from NutriVita Shop (USA). He uses the powdered form as we felt it was the purest form and at the time he was having trouble swallowing tablets, but not any more!! (Thanks B1) Others on this forum have had great results from the tablets/capsules (Solgar brand is quite popular I think). With the powdered form, we purchased a jewellers scale through Amazon (about $30 AUD) to weigh it...a lot of messing around, but it suits us as we have done a lot of tweaking to get the correct dose.

Dr C started him off on 500mg x twice daily. This was based on him being 60 yo, 6 ft and 68 kg. It is to be taken before breakfast and before lunch, as if it’s taken later in the day it can interfere with sleep. After much tweaking, we feel his ideal dose is 400mg x twice daily. It has taken 6 months to get to this stage, but it’s well worth persevering!!!!

It’s important to note that Dr C states that if at any time there is a worsening of symptoms, to stop immediately for a week, then resume at half the dose and gradually build up.

He takes it dissolved in half a cup of water, and it’s important not to take B1 with fruit juice, as it may not work as well. Some say the powder has a bitter taste, but it doesn’t worry him...nowhere near as bad as the mucuna he says 🙂.

He takes a good probiotic (powdered) first thing in the morning, and also supplements with mucuna, as previous mentioned. He’s only left the 5pm madopar out a few times recently, but maybe we’ll aim for one night a week and monitor how he feels (probably not the night that he plays tennis! 😀)

I think it’s time the B1 discussions are reignited, as saraoutwest mentioned the other day. There is so much information that Art (a forum member) had spent hundreds(?) of hours putting together. Unfortunately I’m not at all computer savvy so don’t know how to post the links. I’ll ask someone to do it for me.

Good luck and feel free to keep asking questions!

Jenny

[TL500 in reply to Jennyjenny2]

Thanks very much Jenny. You are very kind. I have been taking Solgar brand 100mg capsules from 2 to 7 per day in the morning. I;m still working on my dose. I feel the 100mg are easy to swallow and to adjust dosage.

Dr C. suggested me to start with 1g per day but I'm scared. I'm only around 1.55m tall and 48kg.

Can you share how much Mucuna he takes it and when?

Probiotic morning before B1 and others?

Which Probiotic?

Are you from Australia too?

Thanks.

[Jennyjenny2]

IMHO, I think it’s important to be consistent with the dosage. We have a friend who would be similar in size and weight to you. She started on 100mg x 2 daily, and after 2 weeks has doubled it.

My husband has 1/2 teaspoon of mucuna at the same time of 50mg madopar (instead of 100mg madopar). I hate to admit it but I don’t know what % of levodopa is in it. I know it is the whole bean though. The brand was recommended by another user and he is 45-50 yo, has had PD for 10 years and looks like a personal trainer!! That was good enough for us.

Probiotic first thing in the morning mixed with a little almond milk, just before the B1, madopar and mucuna. Don’t mix with fruit juice as it will be in your stomach when the B1 arrives 🙂. We use the Bioceuticals Symbiotique.

Yes, we’re in NSW. And you?

[TL500 in reply to Jennyjenny2]

Is your friend improving with 400mg B1?

You mean Mucuna 's brand is IMHO? and 1/2 teaspoon it's like another 50mg of madopar?

I know a guy like that too. Wonder if it's the same guy?

And Bioceuticals Symbiotique Probiotic?

PRobiotic straight after B1?

I'm in NSW too!

[Jennyjenny2 in reply to TL500]

It’s getting a bit late here now. I’ll send a personal message tomorrow.

Jenny