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
How do YOPDers do with this terapy?
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 ?
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
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.
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
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.
Annieartist, would you mind telling us what you feel when you "overdose" on B1? I've been wondering about this myself. Thanks.
Will do after New Year - happy New Year
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.
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.
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.
Hello. In one of your comments you recommended sublingual B1 thiamine mononitrate; However I've been following a Youtuber EONutrition and he recommends TTFD. Now I'm confused. I would like to hear your thoughts on both and why you prefer the sublingual form.
You are going to get the same benefits (symptom improvement) which ever form of thiamine you use, assuming you find the RIGHT dosage for you in that format. The trouble with TTFD is that, firstly, it hasn’t been used by many in the B1 therapy for Parkinsons and therefore we don’t have much experience of dosage etc. Elliot (Eon nutrition) works a lot with non-Parkinson clients. Secondly, TTFD is very strong and people with Parkinson’s are very sensitive to a dose which is higher than they need. I currently recommend oral, IM injections and sublingual each of which use thiamine tissue salts which are water soluble.
The biggest problem with TTFD is how do you take if you need less than a full cap. The stuff taste awful with a worst after taste. I am finding success with 17.5 mg of Alinamin-F (TTFD-hcl). Won't say it taste wonderful, but in Japan there are sports drinks with the stuff in it.
Thanks for your reply. Have you experienced side effects with larger doses?
Yes, I have found my dose, over time, has needed reducing. I listen to my body and when a start to shake more or feel stiff, I say “this isn’t my PD getting worse, it’s my B1 dose being now too high for my needs!’ I take a break during which these unwanted symptoms disappear and restart on a slightly lower dose. I’ve been doing that for six years…
My only side effect was return of symptoms (no worst than what I had before taking)
In one of your comments you mentioned you use Alinamin F. I noticed that this is a Japanese brand. What reputable website do you purchase yours from?
I am not 100% sure I will continue with Alinamin-F. I am therefore hesitant to recommend.
I understand but I already KNOW about the side effects so I'll take full responsibility and won't blame you if I have a bad reaction to it.
A bigger disadvantage: I don't know of a support group of PwP to go to for help.
If I do again I would not purchased from the same site. They are continuously out of stock and require a bank transfer. I brought 25mg and 5mg tablets. I am using a pill cutter (1/2 of 25mg plus 1 of 5mg) to get my 17.5mg. mimaki-family-japan.com/ite...
Knowing now that the taste is not as bad as TTFD, I would say the best way is to tailor doses is to dissolve in favored water. Solubility is 0.123 mg/ml*, (so if I done right it) would take 407ml of water to completely dissolve 50mg. So, dissolve 50mg in a 1000ml of flavored water (solution total volume 1000mg, each 100 ml would equal 5mg). (FYI - In Japan it is a component of some sports drinks.)
Looks like this source takes credit cards dpkitaoka.com/product-page/...
Hi Daph, i havn't forgotten you. I will send mine today after a read thru. Hlsd it progressing well.
Thank you. You were on my list to remind! 🤣😂🤣
Wil do soon Daphne. Happy New Year from Ireland.
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
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.
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.
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.
Ill be so delighted to read your new book! Loved the one on music...enjoying my daily dance and walk to drums!
Hello , I have been taking 100 mg of B1 sublingual every day. Should I do 3x in a week . It’s been almost a month taking B1 every day ..
HOW have you been taking the sublingual? You really need to hold the dissolved tablet under your tongue for 30 minutes without swallowing to allow the B1 to pass through the mucus membrane around the tongue and into the bloodstream.
I take the B 1 under my tongue, but do not keep it for 30 mins under my tongue. Should I still keep taking 100 mg sublingual everyday or take 3x week. Please advise.
I started taking the B 1 on April 18 th 2023. So it’s almost a month and one week over .. I will try keeping it under my tongue for 30 mins as per your advice and see what happens.🙏🏼
Does taking B1 have any effect on “ frozen feet “ and balance issues? Thanks!
Balance Yes 😁 I can't speak of freezing but 80 reasons says it does:
daphne,
I have your book about B1 therapy and am interested to know how long it will take to get to the “sweet spot “? I have been on solgar 500mg/day for 1week. (Except Sunday.) I read it may take weeks to know what the right dose is. Any advice? Kim
How long will it take to find your sweet spot?! How long is a ball of string! It depends how near you are to the right dose. So stay on your start dose for 4-6 weeks and if you see no symptom improvement then increase the dose. Until we do the planned study which will look at which factors are involved in predicting dosage requirements it’s the only way we can do it. My advice is to be systematic about your monitoring and be patient!
B1 therapy 
B1 Overdose
The B1 thing......
