Newbie seeking B1 advice.

[Sara1580]

Hi all, I've been lurking here since last year's Pd diagnosis, taking on board the wealth of information offered by many generous members and this is how I discovered Dr, Costantini. Under his guidance, I have tried 2g, 1g, 1.25g of B1 a day, and continue to feel jittery, like I've had too much coffee. Dr. C. suggested sticking with 1g and adding levadopa (I don't take medication yet and am not ready). So I have stopped B1 for the last 5 days and the jittery feeling is much reduced. I intuitively feel the dose I was on was too high but appreciate Dr C is out of action. The question is, what dose do you think I should resume? Start low and work upwards or start high and work downwards? Any advice appreciated,thanks

[dadcor]

I would have a rest for two weeks and than start with 500mg. If OK for at least a month, would try upwards.. If jittery again reduce etc..

[Sara1580 in reply to dadcor]

Thanks dadcor👍🏻

[Beanie57]

Hi, I’m here so that I can support my sister in finding her ideal dose especially in Dr C absence. I have just come across this brilliant link done by Easilly.... which I found very informative re dose changes etc. Not sure if you’ve come across it but just in case you haven’t

healthunlocked.com/parkinso...

[Sara1580 in reply to Beanie57]

That's really helpful, thanks Beanie57

[Beanie57 in reply to Beanie57]

Also note you are doing Keto. Again this is something I have been researching into so wondering what symptoms you feel this is helping with and what / who you are using for support? We are UK based as well and have been offered no dietary support by the Neuro team!

[Sara1580 in reply to Beanie57]

Hi again, the main benefit I have noticed with keto/healthy foods is the total elimination of migraines, and thus the medication I used to take. NY neuro said the keto diet was too tough to maintain. No support here either.

[LAJ12345]

Please try Hardy’s daily essential nutrients, Hardy’s greens and probiotics, eating gluten free and no sugar, plus lots of Veges. The Hardy’s products made a huge difference for my husband within days. ( he also takes the mannose, b1 and Restore Gold, extra b2, niagen which I am not sure if any of them help too but the real difference happened after starting the Hardy’s.)

hardynutritionals.com/produ...

[Hidden in reply to LAJ12345]

Hi, I have long been intrigued by Hardy’s since you post about it. Thank you for reminding me. Have you tried the powder form ? Do you know if they are 3rd party tested? Do you have an opinion of Mary Ruth’s organics?

maryruthorganics.com/?nbt=n...

[LAJ12345 in reply to Hidden]

I haven’t heard of Mary Ruth’s organics.

He hasn’t tried the powder form as he prefers the capsules.

Here are all the studies on its uses.

hardynutritionals.com/studies

You can ask their scientists questions about manufacture and testing

hardynutritionals.com/sched...

Wow this is an old post! He still takes them by the way! He tried reducing them but felt worse so increased again.

[Sara1580]

Thanks for the advice, do you know if the Hardy's products are available in the UK?

[bepo]

Try mucuna pruriens before starting meds. Mucuna has no side effects. It has to be balanced with l-tyrosine and 5-htp.

[Sara1580]

Thanks

[Jebbie12]

Welcome Sara, to the club nobody wants to belong to, and no one expected to be in. But here we are. A word of caution. Ee careful of treatment advice you get from lay people. No two Parkinson’s patients are alike. One size does not fit all. With that said, there is much knowledge and excellent advice to consider. Just be careful.