Hi everyone,
I am looking for experiences and testimonials about B1 therapy.
I am the one doing all the research about the disease, as my husband becomes anxious very quickly.
It looks promising, but any first hand tips and tricks will help out greatly
High Dose Thiamine (B1). I recommend Dap1948 ’s book and her Facebook Group.
I presume these are oral tablets? That’s a reasonable place to start. Hopefully your B1 tablets are B1 hcl.
Anyway read my book, join Facebook. Both have success stories. Look also at our new website
Congratulations on the new website! Wonderful news! Question from a non-techie: is membership necessary for everyone or only for medical/health professionals?
Membership is just for health professionals. You will have access to virtually everything without membership. Glad you like the website. We’re hoping it will attract health professionals so that we can get them more interested and more informed.
Daphne, on your new website you talk about supplementing thiamine with magnesium and a b-complex. I am planning to pause taking 400mg of B1 for a week or so. When I resume, can I first take magnesium (375mg) 2x a week along with a b-complex tablet, and then after about a week, restart 100mg of B1 3x a week? Is there a particular dosage of b-complex that I should look for?
Whatever you are able to answer will be much appreciated!
it’s a good idea to get used to magnesium and b-complex for two weeks before you start the B1 again. Are you a member of my Facebook group? There is a lot of information in the files about magnesium and b-complex
Many, many thanks for your prompt reply. (My resistance to joining facebook is beginning to break down.)
there is good and bad in everything!
Daphne, I’ve now joined your Facebook group! I’ve stopped and started b1 therapy over the last two months. Have been off b1 (300mg) for three days and symptoms (rls) back with a vengeance. I was planning to start magnesium and b-complex for two weeks and then go back to 500mg of b1 along with them , but my symptoms (rls) have come back with a vengeance. Took 500mg b1 this morning.
Question: can I start now to take all three together? B1, magnesium, and b-complex? And would it be worth trying 500mg b1 twice a day?
We normally suggest that you start b-complex and magnesium two weeks before adding B1. Or we suggest waiting until you find your right B1 dose. It’s only so that you don’t confuse which is causing changes in your symptoms. Do you have the book? It has recommended start doses in it. Oral B1 HCl Recommended start dose is 500 mg/daily. I would try this for 4 to 6 weeks only stopping if your symptoms worsen which would indicate that the dose is probably too high.
Thank you for publishing your book and for spreading Dr Constantini's life's work, I only found out about B1 3 days ago. 🙂
Have you joined my Facebook group, listened to some YouTube interviews, looked at the website?… All will help you find your right dose. 🤗
Yes i have. I have your book in my Amazon cart as well. 🙂
I tried sublingual B1 100mg once a day. By the 3rd day, I had a lot of muscle pain in the back of my leg from buttocks to knee. I stopped the B1 and in a day or so was fine. Any thoughts or suggestions? Thanks for your help!
You are showing a reaction to too high a dose. I suggest you take a week’s break to allow your thiamine levels to drop and restart at 50 mg on Mon, Wed and Friday. My reasoning for suggesting you reduce the dose by so much is because you overdosed after just 3 days! Actually 100 mg x3/week is now our recommended start dose, not daily.
Thanks so much for your help!
I was diagnosed over 5 yrs ago, from the beginning I went on two 500mg a day, I am still on them, no medication yet. Tremor dominant PD. I feel no need for meds yet.
Does the B1 control your tremor?
Some forum members have reported tremor improvement from B1 while others have reported no improvement and some have reported tremor improvement initially that declined over time. In B1 overdose , members have reported worsened tremor.
Art
From what I've read on Daphne's B1 Facebook group, tremor is one if the more resistant symptoms to B1.
I've been on oral B1, gradually increasing to 3,000mg/day. Not seen much improvement in my tremor, but subtle improvements in other areas such as urinary urgency, constipation, possibly my quality if sleep has improved (although hard to tell, as my 2yr old and 4yr old daughters tend to disrupt my sleep more than my PD does 😀).
Very subtle improvements, so hard to tell if I've actually reached my sweet spot and can definitively put it down to B1. I've paused increasing my dose for now, partly due to cost of the supplement but mainly as I've added intermittent fasting to my protocol recently, and want to monitor improvements related to that intervention in coming weeks.
Hope my limited experience helps?
A much more economical way to buy B1:
amazon.com/BulkSupplements-...
And an inexpensive jeweler’s scale:
I’ve been intermittent fasting and mostly keto for a couple years now. I got a bit lax, but am back at it. Thank you for your response.
this is a tough one , I have been on B1 since the beginning so cant say if it has had any benefit. From all my research it seems it does not seem to make any difference
Can I know what your symptoms are? And how long have you been taking the B1?
as i said it has been about 5 yeears. there are a lot of posts with my history on here,, I think you can access them
Thanks, I'll lurk around 🙂
Marc has not found any benefit from B1 either. There are other members who have reported no benefit from B1, but they don't seem to post about it much. Once they realize it isn't doing anything for them, they just seem to move on. Marc continues to take it even though he realizes no benefit. Some people don't seem to respond to B1.
Art
Perhaps another indication that we all have different pathologies leading to Parkinson's syndrome. I wonder if B1 responders have something in common.
It is a mystery why it works for the majority of users, but definitely not all. The fact that it is a potent inhibitor of the inflammatory mediator IL-17 should be very beneficial for people with PD and other neurodegenerative diseases because IL-17 is elevated in these diseases and causes neuroinflammation.
Art
Sorry to hear that it hasn’t had any visible benefits. How long has he been taking it. Sometimes I feel a cure/better drug is just around the corner, and sometimes I feel all is lost! And I’m not even the patient!
All of you PwP are amazing, and I admire each and every one of you! 🙏
We live in an age of I'll try anything because the ONLY drug proven to help Parkinson's over time is 60 years old !!!!! Levodopa. At The European Parkinson Therapy Centre in Italy we have clients from over 45 countries and believe me I've seen many theories. As the web page on B1 states "Case reports and an open-label study on HDT in Parkinson’s disease conducted so far have not been double-blind, placebo-controlled trials".. or in other words the placebo effect is very prominent in People with Parkinson's. I am not degrading it's use. I have tried it myself. (research does show that B1 is noticeably effective in people who start out with low B1 levels). In Parkinson's the Centre has always said "If it works for you... keep on doing it (whatever that (may be). MUCH more valuable are specific Parkinson Exercises (movement is medicine to qote DrJay Alberts and others), nutrition, anti stress, positive outlook and knowing what Parkinson's really is. YOU can decrease symptoms by 50% slow down progression and live a GREAT quality of life (bet your Neurologist never got around to telling you that and how! I have Parkinson's for over 17 years and still do 10 hours per day work (in the centre).
Wow, you are amazing to still be working 10 hours a day after having Parkinson's for over 17 years! Well done you.My HWP was diagnosed 18 years ago but also has osteoarthritis and sciatica as well as a toe amputated last week oh, and cognitive impairment too so there's no way he'd be able to work.
Are you Italian or did you have to learn the language in order to work at The European Parkinson's Therapy Centre?
I am convinced being on B1 from the beginning of my PD diagnosis has been a big benefit, there are so many FB groups and YouTube channels on this, it´s hard to doubt it has no benefit.
All I know is my mandolin playing improved 100% after eating a couple handfuls of mixed nuts every day and they contain B1. That was several years ago and I still eat them daily, especially pistachios!
I strongly, strongly recommend the Facebook High Dose Thiamine group created by Roy Propsner. He has compiled all the information there is on the subject. You can download FAQ files and ask group members questions. It’s free (you just need to ask to be added) and I think is the best resource there is.
Thank you for everyone’s responses.
Question: my husband is already on Magnesium L threonate. Should be stop before he starts the b1 therapy?
Also… are you taking b12 as well? What form and dosage?
New Facebook’s group about B1 therapy 
B1 Therapy Is not working for me
High dose B1 therapy using Duopa pump
