Have you benefitted from B1?: I'm well on... - Cure Parkinson's

Cure Parkinson's

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Have you benefitted from B1?

Dap1948 profile image

I'm well on with my book "Parkinson's and the B1 therapy" and am just doing another shout for users' stories. If you could private measage me with information concerning your B1 doses, when and which symptoms improved, length of time on B1 and anything of interest, I would be REALLY grateful. And yes, skeptics, I have included a section on 'non-responders'.

Thank you

39 Replies

How do YOPDers do with this terapy?

Dap1948 profile image
Dap1948 in reply to nedim

No one has done specific research into YOPD and B1, but as it can help people at any stage I don’t see why it shouldn’t help people at any age. I have a YO friend who started B1 six weeks ago and is just seeing benefits.

Hi I am newly diagnosed, taking a low dose of premipexole and Selegiline. Also taking co enzyme Q and vitamin e all prescribed by the neurologist. Can you advise me what to start on for vitamin B1 , which formulation, strength, brand Thankyou

I so far have ten sides of A4 discussing the options in answer to this question! Until the book comes out I suggest you search B1 here on health unlocked, go to highdosethiamine.org and b14PD.comThat should give you enough information to get started.

Also suggest you join the Facebook group ‘Parkinson’s thiamine hcl’. Lots of questions asked and answers given, files of information to read etc

Fantastic- when and how will it be available ?

Dap1948 profile image
Dap1948 in reply to Annieartist

On Amazon. Don’t worry, I’ll announce it on healthunlocked! I’m very fortunate to be in touch with Dr C’s colleague Marco who is reading my draft and writing the foreword. I’m hoping to complete in February. Thank you for your interest.

I take it - do well on it and occasionally mess things up by overdosing but nothing exceptional

Dap1948 profile image
Dap1948 in reply to Annieartist

It would be great to hear your story. We all mess up from time to time with too much or too little! I want normal stories, not just exceptional ones! Please consider messaging me with it.

st8farm profile image
st8farm in reply to Dap1948

Found Dr. C to be a caring and wonderful mentor in my B1 experience. He always answered me back within 4-6 hours from Italy. It took about 4-5 weeks for the B1 therapy to take hold. When it did my children asked me "how I cured my Parkinson's?"That was 4-5 years ago I think. I am now cut off from my B1 supply and the right hand tremor has reoccurred. When the supply chain over at Vita Cost is fixed, I should regain my former status. I can only tolerate capsules. I can talk more after the new year. Good luck on your publication. It is sorely needed. Larry

Dap1948 profile image
Dap1948 in reply to st8farm

Thank you for that. I look forward to any more you get to me before I publish. I hope your capsule supply chain clears soon.I wasn’t sure how much I could tease out of the subject when I started but I’ve followed leads which have lead to more leads and learnt a lot. I’m hoping the book might encourage more people to try the therapy and some who thought themselves ‘non-responders’ to try again. My friends and family can’t believe I am so well after 12 years of PD and new people I meet can’t see that there is anything wrong with me! I want everyone to experience that.

Dap1948 profile image
Dap1948 in reply to st8farm

where are you based, so that I can credit your words to 'Larry from ??'

Dap1948 profile image
Dap1948 in reply to st8farm

Where are you from, so that I can say “Larry from ?” in the book against your story

st8farm profile image
st8farm in reply to Dap1948

Yuma, Az.

Annieartist, would you mind telling us what you feel when you "overdose" on B1? I've been wondering about this myself. Thanks.

Dap1948 profile image
Dap1948 in reply to lbrussell

I’m sure Annieartist will answer too, but many of us when overdosed feel jittery, perhaps with unexplained anxiety. It can feel is if your battery is over-running.

lbrussell profile image
lbrussell in reply to Dap1948

Very interesting. Thanks for responding.

Will do after New Year - happy New Year

Dap1948 profile image
Dap1948 in reply to Annieartist

Thank you. Happy New Year.

Hi Dap - have only been on it for a few weeks - started with 500mg daily for about 2 weeks and have since moved up to 1000mg - have only been on this dose for a week. I was diagnosed with PD 2 years ago so I am early into it. I am going to slowly increase to 2000mg which I understand is the optimal dose for a person in early stages. No radical improvement yet but I sense some lessening of tremor - tremor is my only real symptom and it's not that bad either so I need more time on B1 with a higher dose to see if there is real improvement.

Good luck with the book.

Dap1948 profile image
Dap1948 in reply to Puddi

Changes are very gradual and quite subtle. Keep a diary. Make videos. Many people miss their own improvements. Don’t feel you have to get to 2000 mg. we are all different. It may be too much for you. Give 1000 mg enough time to reveal improvements. It can take six weeks before you realise there’s been a change. If you feel worse or start to feel jittery, you are probably too high. Good luck.

Puddi profile image
Puddi in reply to Dap1948

Makes sense Dap - will diarise and run 1000mg for 6/8 weeks before going up a cog - if 1000mg is working I will stay there for a while. Good advice.

Hi Daph, i havn't forgotten you. I will send mine today after a read thru. Hlsd it progressing well.

Dap1948 profile image
Dap1948 in reply to alaynedellow

Thank you. You were on my list to remind! 🤣😂🤣

Wil do soon Daphne. Happy New Year from Ireland.

Dap1948 profile image
Dap1948 in reply to HekateMoon

Great! And a Happy New Year from Scotland!

Tmarsella profile image
Tmarsella in reply to Dap1948

YO ?

Dap1948 profile image
Dap1948 in reply to Tmarsella

“Young onset”

HiMy PD feels a bit weird. It is like all the symptoms came at once after several operations on my bladder. The doctors deny that there is any link buti have my doubts. Anyway. I got pretty much all the symptoms you can think of: Posture, aching muscles, shuffling, stone face, isolation in my little world, shaking hands, difficult to talk, etc

I am on modopar and take 200mg per day on three instalments. The Medecine world to a point.

I discovered B1 and take 3Grams per day for the last two years. What a change ! I obviously know I have Parkinson but the improvement is enormous.

My French neurologist does not believe it can make a difference even if my tests show no degradation whatsoever in the last two years.

I went to Italy to meet one of the members of the team who divided this B1 protocol and I plan to go there once a year.

My speech is not perfect (depending on the moment) but if the situation remains stable I am fine.

One thing I would love though is a mechanism to reach the ideal e of B1. I take three grams because it seems to be right but really I have no idea.

I am French so please excuse my English

All the best

Dap1948 profile image
Dap1948 in reply to Sid44elosam

Thank you for your story. No need to apologise for your English. It is so much better than my French! Can I use your first name with your story? What is it? You can message me if you want to keep it private from HU!Getting the dosing right is a juggling game! Too much and people feel jittery. Too little and fatigue returns. It’s a case of trial and error and listening to your body at the moment. Possibly more research, when funding is found, might shed more light on the subject.

Dear Dap, ny husband is 41 years old, he was recently diagnosed with YOPD, his symptoms are mild for now, so we want to try everything possible to be able to stop or at least slow as much as possible the progression of this disease. I would like to ask you if you could please guide me with the ideal B1 dosage to start, right now he's only taking 1 mg Rasagiline once a day and propanolol 40 mgs twice a day for his left hand tremors; I would also like to know where can I buy the sublingual B1, hopefully online as I don't live in the US but in Ecuador, South America. Any paricular brand you'd recommend? Thank you so much.

Dap1948 profile image
Dap1948 in reply to Mimilemew

I will private message you.

Mimilemew profile image
Mimilemew in reply to Dap1948

Thank you!

What dose and What improvements? B1 is the only supplement that my neurologist recommended. I take 80 mcg of benfotiamine (fat soluble B1), what's in my multi and occasionally a 100 mg cap.

Our Clinic had a 13 year old that kept collapsing - his legs would just give away lack of B1 was the cause - SoundHealthOptions.com

Not a skeptic it just doesn’t work for me.

and Happy New Year from Australia Dap.

Dap1948 profile image
Dap1948 in reply to Puddi

And a happy new year from Scotland!

HWP on 1000 B1 does not do much, biggest symptom is pain and stiffness, not much trembling, increase to 1500mg will let you know if there is improvement.

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