PD and B1: I have had PD Symptoms for... - Cure Parkinson's

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PD and B1

14 Replies

I have had PD Symptoms for 7 years but only diagnosed three years ago. I am taking carbidopa/levodopa for three years now. I have read ”Parkinson’s and the B1 therapy“ on Amazon and am evaluating my next steps. At my last visit to the Neurologist, she mentioned something that could put the cabidopa/levodopa “on high octane”. I didn’t want to add anything at that time, but I’ve had more “off” days lately and may want to make a change.

Could she have been talking about B1? I’m thinking she had another medication in mind.

Anyway, any advice on the best way to present this to my neurologist? Thanks in advance for your feedback!

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14 Replies
chartist profile image
chartist

Chances are your neurologist knows little to nothing about B1 and PD. B1 is compatible with all standard PD meds. I would definitely test B1 before adding another med to your regimen. B1 has a better safety profile than any PD med. As MJFF suggested, it's just a supplement so you can just try it and see if it helps.

B1 effectively reduces an important inflammatory mediator that is elevated in PwP, IL-17 and IL-17 is damaging in multiple neurological diseases. Generally it is undetectable to low in healthy people, but is elevated in PwP.

healthunlocked.com/cure-par...

B1 does much more than just lower IL-17, but that is an important point about its effects in PwP.

Art

in reply to chartist

Thanks! I am inclined to give the HDT a try. I am taking B12 and don’t want to complicate the finding of an optimal dosage. So I’ll probably discontinue the B12 before starting. I found the sublingual tablet mentioned in the book online so will probably start with that.

chartist profile image
chartist in reply to

Some forum members have reported significantly lower required dose and somewhat better benefit with the dissolve in the mouth B1 thiamine mononitrate compared to thiamine hydrochloride, so it definitely seems worth testing.

Art

Lolo2022 profile image
Lolo2022 in reply to chartist

hi art but thiamine hcl has the advantage of not accumulating in the body, because the excess of vitamin b1 is eliminated in the urine...

so vitamin b1 hcl is safer

chartist profile image
chartist in reply to Lolo2022

Lorenzo,

Thiamine Mononitrate is also water soluble and consequently is also cleared from the body at a fairly rapid pace in a similar fashion to thiamine hydrochloride. A few forum members have reported a better response to thiamine mononitrate after trying thiamine hydrochloride.

Generally, it comes down to trial and error for supplements and medications to find out what works best for the individual. These two forms of thiamine are not an exception.

Thiamine mononitrate does not accumulate in the body any more that thiamine hydrochloride and that is why consistent regular dosing is required for both for use in PD.

Art

Lolo2022 profile image
Lolo2022 in reply to chartist

thx for the answer 👏

Otherwise, I listened to your advice:

I stayed on the 1g dose of thiamin taking breaks for a day or two a week 👍😉

in reply to chartist

Thanks for all the information! Has anyone reported a problem with kidney stones when they take thiamine mononitrate. That was mentioned in Daphne’s book.

chartist profile image
chartist in reply to

I haven't seen that reported on this forum, but seems unlikely at the dose of TM used for PD.

Art

Lolo2022 profile image
Lolo2022 in reply to chartist

hello Art

You wrote :«A few forum members have reported a better response to thiamine mononitrate after trying thiamine hydrochloride.»

I have a question for you :

Did those users had success with Hcl before they switched ?

Do you remember their nicks?

Thx for the answer

Lorenzo

chartist profile image
chartist in reply to Lolo2022

Two of the users said they had used TH prior to using TM and they felt the TM was more effective at a lower dose than TH. I think I remember one as Lizzy9 who used it in her husband who has PD and the other two I do not remember.

healthunlocked.com/user/Lizzy9

I don't know if DAP used TH prior to using TM.

Art

chartist profile image
chartist in reply to Lolo2022

Lorenzo,

I remembered that one of the other forum members is :

healthunlocked.com/user/Cas...

Art

Gcf51 profile image
Gcf51 in reply to chartist

I have no problem swallowing pills. I found holding in my mouth for 45 minutes a big hassle. I used thiamine hydrochloride. Current status.. healthunlocked.com/cure-par...

Gcf51 profile image
Gcf51

As for me the biggest improvements have been from High Dose Thiamine (B1) and exercise. I recommend Dap1948 's book and her Facebook Group. facebook.com/groups/parkins...

Lolo2022 profile image
Lolo2022 in reply to Gcf51

agree with you b1 and exercice

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