I have just visited my neuro last week, and the first thing he told me was "I have read your books, how are you doing with the B1?" (my books are one book i've wrote about PD and the portuguese translation of Daphne Bryan book). Well, i also showed some videos of people i am helping with the protocol and he was astonished, and the only argument he gave me was that could be placebo effect. I leave here a link for the repository of the videos that i am collecting. One thing i have realized, and i want to leave this note here, is that most of the people are having great results with 100 mg or less of B1 oral hcl, and all of them below 500 mg. I have changed the protocol a bit to allow to start at a lower dose and build up slower. I don't know why is working, but it is. Anyway, my neuro told me that i was in great shape for 16 years onto PD.
Well, i'm 50 years old, 16 years on PD, 5 years on B1 and just get back from my 5 kms morning run, Something has got to be, and i strongly believe it's B1.
That's amazing! I started taking a strong Solgar B100 complex that has 100 mg of all the B vitamins (but the wrong kind of B12 unfortunately) many years ago, after reading a study on how this dose delayed cognitive decline and dementia. However i have had periods of running out of it and not replacing it. I'm heartened to hear that 100mg is an effective dose. I am undiagnosed, very early days, and hoping to knock my symptoms on the head.
100 mg is the dose that most people respond, but still have a protocol to follow, You still have to find your sweet spot, there are people getting results at 12 mg hcl daily, others at 50mgs, others at 100 mg and so far one at 350 mg , but all below the 500 mg stated by Daphne's to start, See my answer to hope-fully!
Sorry the answer as in private, here it is, i am helping some people with the protocol, but, i do not know why, they are getting great results with very low doses. Sublingual is way more powerfull than oral HCL. I still follow Daphne's protocol, just consider this as an add on. I start lower usually at 50 mg oral HCL (100 mg every other day), and every two weeks i tell people to add and jump to 100mg, 200 mg, 300 mg, 400 mg, 500 mg and from here to follow the normal protocol, but none of them reached this. Nuno got benefits at 400mgs and went down to 350 mg, but Ana is getting results at 12 mg (25 mg every other day), Others are getting good results at 100 mg. There is a person who starrted by using the B50 complex (that as 50 mg of thiamine on it) and went from barely get energy to moving to doing 15 km walks every wekend. The protocol is exactly the same, i just say to use B1 oral HCL, start low, look for improvements,, look for overdose signals, if there are no improvements, add more 100 mgs, stay on that dose for 2 weeks, if you find improvements stay on the dose, if you got better and then got worse, stop for 3 to 4 days, monitor (it's low doses, so don't need to stop for 2 full weeks), and restart at a lower dose. Make a diary. log everything daily, make videos monthly to see improvements (do not discard this, it's fundamental to make decisions).
I have no opinion. Never tested and know very few people that had. It´s no water soluble, so will accumulate in the body, although i have a theory that even for hcl there is some sort of accumulation mechanism.
great post. i'm 77 and early on skuffing feet - catheter likely causing most stoop but getting more sluggish in arm movement.... what does would you suggest and from where
Many thanks for the prompt response. Working through a carer's learning curve and based on the little I had read I wrongly assumed a larger dose for oral hence the question. Thanks to you and others for a better explanation. Recently imported B1 sub lingual from the US and have just commenced the suggested (in Daphne's B's book) i.e., 100mg on Monday, Wednesday and Friday. Hopefully we shall see a positive result shortly. Regards
Thanks for sharing Mark. It's been said that you have both 'responders' and 'non-responders' to the B1 therapy. What is your experience of the ratio of PwP that get a positive response to the protocol?
I agree, this is a BIG patience game. Be sure to read the book, make the videos and log everything into a diary. You will need it later. Don't be in a rush, and remember, in this usually more it's not better.
I have been sugesting the oral form, since the sublingual is way more powerfull than the oral form, and people are getting results in such low doses that would be hard to achieve with SL. B1 patch never tried and don't know any examples who did.
Hi Gigi. I'm not saying that. I was warning that the protocol for starting B1 SL was updated to 50 mg mononitrate 3 x week, because many people are quick overdosing on 100 mg 3x week. But my post is to highlight that the people i'm helping getting into the protocol are getting results at very low doses of b1 oral HCL, all below 500 mg, most of them around 100 mg B1 HCL
Thank you. I have been on 1/2 sl tab 3x a week for 3 weeks now and have not noticed any benefits so will keep doing this for a few more weeks and hope to see an improvement.
Thank you so much for the updates. I started sublingual almost 2 months ago at 100 mg three times a week and did it exactly as Daphne book indicated. I definitely overdosed so I went down to 50 mg still felt wiggy then went down to 25 mg Still feeling off. So I’m taking two weeks off and will start at 25 mg or would you recommend 12.5 mg and I see some people are not taking two weeks off is there a update on that recommendation?
If this doesn’t work I’ll go to the oral because it sounds like you’re doing much better and everybody else? Thanks so much
Does it do anything for tremor at all? I'm not yet on any meds, and would like to try again ... read Daphne's book, and tried a higher dose and it made my tremors worse and gave me more anxiety. Took 2 weeks off, and never went back because I was scared.
I am taking mucana, h-5tp and I'm on b1 50 mg.sublingual 3x's per week. I'm at 6 weeks and haven't overdosed. I think I'm seeing some results but it's subtle. I have to exercise daily to help reduce tremors. It makes a big difference. Another thing that makes a huge difference for me is an infared sauna!
My MDS didn’t even know what mucuna was. He wants me to start C/L, but I wanted to try NOW brand Mucuna first. I’m so close to finding my sweet spot with B1. What should I do? What’s y’all’s take on mucuna? Can you get a therapeutic dose with the NOW brand? Dr, Mishley recommends that brand .
I use the NOW brand for Dopa mucana an NOW brand for 5htp. I take them together in the morning and take another mucana around 2.I just realized I'm not supposed have protein when I take it because it reduces the effects of the meds. Eat your protein away a couple hrs from when you take it.
I take another 5htp at night and it really helps with sleep.
I'm trying this before trying sinemet or something similar. My Dr.is fine with it.
I'm still experimenting. Because I have been taking it with protein, I don't have a clear picture yet. Now I'm taking it without protein. Today I had a good day.
I have had no side effects or nausea.I have heard it works well for some people.
I take 250mg oral B1 capsule five days per week. It definitely gives me more energy and more mental clarity. I read a PubMed article stating that long term use of B1 helps regenerate nerve cells.
There are 3 main administration forms, oral, sublingual and injections. But this only works if you understand the mechanism and the protocol. Please read Daphne's book before trying this therapy
these videos are incredible! Thank you for all your doing. I have Daphne’s book and read it and I’ve had a hard time with the B1 probably because I’m using too high of a dose. I am going to start over and go really low and slow. Thank you thank you thank you.
Many neurologists have stayed in 1950-60... a shame... they still think that the earth is square and they hate and reject their colleagues who have evolved. I think that pharmaceutical companies have turned it into robots that only know how to dispense prescriptions with medications that normally only cover up diseases, not cure them. Many thanks to Marco, Daphne and everyone who helps us with these diseases and especially to Dr. Constantini, the genius , what a shame he died
I started my husband on 100mg SL , M-W-F & he felt good. However, in his eagerness he started taking 100mg everyday. He was moving well etc but of course it was too much, too soon. He is now on a break.
Just today, I’ve started him on Mag & B-complex. I have told him “don’t mess with the protocol”😉
I am rereading Daphne’s book & watching videos. I am so thank for Dr Constantini & it’s a shame we lost him. But he’s left an amazing legacy.
I don’t know how I found this site but so thankful I have.
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