B1 without Levidopa

[Quesnel]

Has anyone good results from B1 without Levodopa?

[Gcf51]

One thing at a time. Find sweet spot with B1 then cut back on C/L.

[Gcf51 in reply to Gcf51]

I guess I need to clarify: You should not be trying more than one thing at a time. If taking C/L establish your B1 sweet spot before trying to reduce C/L. If not taking C/L establish your B1 sweet spot, you probably will not need to start C/L.

[TL500]

I saw quite a few people on Daphne's B1 Facebook told that they have.

[Dap1948]

There are quite a few people on my Facebook group that tale B1 without levodopa, not because they have cut back on their levodopa (as Gcf51 suggests) but because they never started it.

B1 can revive the failing neurons but the neurons that are dead remain dead. Put very simply, it’s the dopamine that they are no longer producing that needs replacing with levodopa.

m.facebook.com/groups/parki...

[Meramt in reply to Dap1948]

Just wondering…is there a way one can have access to the conversations in your Facebook group without belonging to Facebook? Probably a stupid question. I have read your book and have been taking 500 mgs of B1 hcl for the past month. I’ve been on C/L 25/100 mgs for almost a year, extended release 4x a day. A few days ago I started taking 200 mg more of B1, but felt more jittery and have stopped both for a while. Greatly appreciated your book and intend to continue experimenting with different dosages.

[Dap1948 in reply to Meramt]

I’m sorry but you have to join Facebook to be able to join the group. However you don’t need to do anything else on Facebook. So you can just join it to join the group.

It sound as if the extra 200 mg was too much. When you say you stopped both, what are the ‘both’. Hopefully it doesn’t include levodopa meds. I wouldn’t recommend that. Stay off the B1 for 1-2 weeks and then go back to 500 mg.

[Meramt in reply to Dap1948]

Many thanks for your kind reply! I was afraid I had not been clear. I only stopped the B1 (both the 500mgs I was taking before breakfast and the 200 before lunch.) The side effects of a slightly nauseous feeling I had after taking the regular tablet of C/L were gone after my doc switched me 5 mos ago to the extended release form.

My main issues now seem to be what may or may not be restless leg syndrome (legs twitching) at night before falling asleep, and stiffness in both legs. I walk an hour in the park every day. I plan to go back to 500mgs of B1 in 2 wks. Again, thank you.

[fel3k]

no, HwP just can’t slow down hand and tongue tremors. He’s on 50mg B1 and 50/200 carb levodop 4x day…wondering if it’s too much meds, he seems more depressed

[1651forever]

Side effects from levodopa caused me not to give lo. The B1 seems to work.

[Fatherof5]

I am not on levadopa, never started it. I am still figuring out the right B1 dosage but feel that I am getting close. Being patient with how my body reacts has been difficult though

[Manypony]

I use the bare minimum mucuna and B1. More mucuna MIGHT give more relief but I’m not trying to push it

[1LittleWillow]

I used B1 by itself for a couple of years before I started using mucuna (I take that instead of Sinemet, which I only tried for 2 months). Currently, I only take 1 dose of mucuna each day most of the time. The B1 helped a lot *before* using mucuna, and it works just as well (but not better) *with* the mucuna. I've never noticed any difference in its efficacy regardless of whether or not I take L-dopa.

[Dabaa]

Specifically, may I ask what that looks like - dosage?

[Rufous2]

On a side note, if anyone knows.....can thiamine elevate blood pressure?

[Juliegrace in reply to Rufous2]

That has been reported by a few members here.

[Rufous2 in reply to Juliegrace]

Thank you !

[Gcf51 in reply to Rufous2]

Did mine... My GP increase my BP meds and I started walking everyday (weather permitting). My BP is down to where a little anxiety doesn't cause a problem.

[Rufous2 in reply to Gcf51]

Thank you so much. Are you saying the thiamine increased anxiety and the anxiety increased blood pressure?

[Gcf51 in reply to Rufous2]

healthunlocked.com/cure-par...

[chartist in reply to Rufous2]

This is a case where the other water soluble form of thiamine may be more beneficial and agreeable. Thiamine mononitrate (TM) in its orally dissolvable form seems to require a significantly lower dose to reach a beneficial level, when compared to thiamine hydrochloride(TH). A significantly lower dose may reduce the potential for elevated blood pressure levels.

One forum member reported elevated blood pressure using TH, but when she reduced her dose down to around 100 mg, her blood pressure was fine. The 100 mg of TH would be equivalent to a much lower dose of the dissolve in the mouth TM. So using TM as an alternative to TH, may be a viable workaround for people who get elevated blood pressure when using TH.

Art

[Rufous2 in reply to chartist]

Thanks everyone, sounds like it's a really idiosyncratic thing.