Hi, I’m new here. My husband was diagnosed of Parkinson’s late 2021 before his 50th and was put on medication since last year. He’s now on Madopar 100mg x3
We are a young family with two children. This has come as a shock to us and trying to manage and see the positivities to life as much as we can.
His symptoms are mainly rigidity, balance, slowness amongst others. He’s been forced to retire from work. I came across Daphne’s YouTube interview and I’ve now ordered her book. I am interested in the B1 therapy following all the great testimonials
I’m overwhelmed with all the info here and not sure where to start. I found getting the bilingual here in the UK a challenge so I’ve ended up buying the Now B1 - 100mg.
Any advice on dosage will be much appreciated!
Thank you
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GratefulHeart23
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Welcome to this forum. I think the easiest way to get information is to use the search 🔍 function. You can use the filter to limit search results to the Cure Parkinson's site. Searching for "B1 dose" or "thiamine dose" should get you started. Good luck!
Hi GratefulHeart 23, we are in a similar boat, my husband is 49, we have been struggling with the news for the past 3 years. In a nutshell, I have recently found myparkinsonsteam.com, health unlocked and the b1 groups for parkinsons on FB.
If you are ever wanting to chat with someone in the same boat, ping me. I know i feel like my friends have no idea what I am up against, and feel isolated.
Hi and welcome to this forum, there is a lot of information here on B1 and if you wanted to try the sublingual version, I sent away to Pure formulas an American website. It took a while to arrive but was a very cheap price. Just checked and they’re out of stock at the moment.
sublingual b1 from pure formulas is the best choice. Read daphnes book first then if you decide on sublingual the recommended start dose is now 50mg Mon Wed Fri for 4-6 weeks monitoring and recording every tiny change or improvement. You need to add in a bcomplex with low b6 and a magnesium of your choice. These can be started while you wait for the sublingual b1 to arrive or wait until you find your sweet spot then add them in. DO NOT start them all together or you will never know what works and not. Join fb group Parkinson’s b1 therapy and watch Daphne Bryan’s utube videos on B1 therapy
A lot to consider so be patient and take it slowly. Success will follow. My success story is on utube
Thank you! I was so excited when I found out about the B1 therapy that I wanted him to start asap. The ones on EBay takes long to arrive. I suppose I don’t really have a choice than to just wait ☺️
join Daphnes fb group Parkinson’s b1 therapy. NOT the b1 HCL group. Wait to read the book before you start. Order the sublingual from pure formulas If out of stock go on waiting. List and they wil email you. I have had amazing results with b1 It’s changed my life
Thank you! The book should arrive by tomorrow and I’ve sent a request to join the FB group. Waiting to be added on. I’m also on the waiting list to get notified once they are back in stock. Fingers crossed won’t take too long. Although, I found one on EBay but the delivery will be around July😞
So happy for you! Wondering how long it took for you to get good results? Did you find “sweet spot” easily? And, are you on any meds yet?
We’re so confused!
My hwp has been trying B1 for about 3 months. . Took 1 sublingual for aprox. 1 month but felt it might have been too much. Has now started taking it 4xs a week (been on for about a week). Tremor seems to be getting worse and he has no energy.
How do you know if it’s PD or B1 overdose?
Finding it all so overwhelming and challenging. Think I will also post this question to the group.
hi. I was diagnosed 3 years ago and take Madopar 12.5/50 4 times a day.
Started b1 therapy over a year ago using sublingua
I started 100mg Mon Wed Fri. Too high OD. Rested for 2 weeks
Started again on 50mg daily. Too high OD. Rested for 2 weeks
Started again 50mg Mon Wed Fri. Success the list of improvements is endless.
I have a utube success video. To view Parkinson’s b1 therapy Julie’s success story.
It is trial an error but you need to monitor and record daily looking for the slightest improvement. Once you see improvements stick with that dose and more will follow.
Hello Thats awesome that B1 sublingual is working for you!’I tried that one time at 100mg daily and i overdosed. I was just wondering what your dosage/frequency is? Thank you.
Oh! Stupid me. It was already there i’m sorry. I’ve read the b1 therapy book. Do you first thing in the morning have a glass of water and then keep the tablet under your tongue for a half hour? I’m just asking because I want to try again. Thank you.
it’s a lot to take in and remember but now over a year in I find it easy.
I wake up maybe 7.00am. Drink of water wait a few minutes my 50mg under my tongue and lay back down in bed, it’s easier to hold the saliva for 30 minutes lying in bed. 30 minutes gone swallow saliva and get up and start my day. Start on a low dose ( depends on your size and weight and how long you’ve had PD). Slightly higher dose for large heavy people. Lower dose for small lightweight person. Best wishes for you joining the success stories of the b1 therapy group. An update video of my success story has just gone on utube today.
I hope you wont mind my asking what changed your life? a vitamin or trying no prescription medication for pd? Do we know what the vitamin does that sinemet didn't do?
I commenced taking B1 since 2018 , I take 5x500 mg tablets daily. I believe it along with exercise has minimised my symptoms getting worse as I am still leading a pretty normal life. I still also take Siniment 1x 3 times daily. I buy 500mg tablets online.
Thank you! I think exercise and diet is also a massive key to seeing improvements. I have the Now B-1 currently cuz I couldn’t find the sublingual. I know Daphne mentioned in one of her YouTube videos to start low. Hence, I bought the 100mg. I’m waiting for her book to be delivered so I can read more before he starts. Just so overwhelmed by so much info that I don’t know where to start 🤔
My husband is using B1. We looked at Dr Costantini's website and followed his advice to start with the Thiamine HCl capsules. I know some are using the sublingual with good results. He is using 5 capsules of 500mg a day. I started him with 500mg for about 10 days and slowly increased in that way.
He avoids seed oils but eats eggs, butter, meat, fruit, oatmeal. No packaged food. His symptoms have stayed mild so far.
He walks for about a half hour as fast as he can every morning btw.
What has been massively significant to me is changing diet. I went complete vegan + fish and all my symptoms massively decreased (no dairy, sugars, fried foods, meat). If i cheat one day symptoms return. the tremor remains though but is hidden with madopar or propranolol.
wow, that’s great news! yes, my hwp keeps saying we need to cut out dairy and meat.. not sure we can completely cut out sugar (but that’s more my vice than his).
what about alcohol? do you drink? he likes to have a beer with dinner but probably not such a good idea.
Good morning..... I have essential tremor and I am taking benfotiamine, 500 mg a day; I sleep better, I have more vitality but my tremors have not ended (the truth is that at the moment I don't shake much). I found this sublingual benfotiamine on Ebay, which I think will be better than thiamine. I'm going to buy it and give it a try to see if I get better results with my tremor.
Hi, hopefully you find a better result with this one. My husband currently hasn’t got tremors just the rigidity, balance and slowness. I’m looking forward to starting him on the B1 therapy and coming back here to also share our success story soon 😊🙏🏾
Thanks Daphne. I can see now that I have now been added to the group. Listening to your interview on YouTube has really encouraged me and see light at the end of the tunnel. It’s been a very challenging time managing the situation, work and family. You are a God sent, Daphne!
Hi, I am 52 and diagnosed with Parkinson couple of years back , I have similar problem like your husband , I am on Sinemet plus x 4 times a day
I started taking B1 tab 100mg bought from Holland and Barret, I am taking 1 tab every alternate day and it has helped me to maintain balance and sleep well
I am also into meditation to control my emotions and stress and it does help
I also do Anulom-vilom (Breathing exercise) A breathing exercise that requires you to breathe in through one nostril, and breathe out through the other can help in managing symptoms of Parkinson's. Breathing exercises calm down the mind and the body and make it easier to keep anxiety and depression at bay. Taking deep breaths also makes the blood flow better and may help in keeping tremors away- link :
Look, its not a cure but combination of meditation / medication / B1 and Anulom Vilom makes life easy and you feel relax, I would suggest ask your husband to try, it might help..you never know
Hi, It’s been a journey to be honest cuz we’ve had to be going back and forth with trying to understand dosage. Now he’s on the Madopar, but the main issue has been blackouts which was happening a lot and was scary at most times. They’ve only just realised that the Madopar was the cause, it was dropping his blood pressure significantly. Sometimes the blood pressure was as low as 54/43. Now he’s on Midodrine to help with his blood pressure. Seems to be working at the moment. But I am looking forward to starting the B1-therapy.
I will surely follow your recommendation of the breathing exercise. Do you take the B1 before or after food?
Hi: best way to do B1 is wait for the book, and join Dappne;s facebook grou[p: Parkinsons B1 Therapy. The book and the folks in the group will answer all your questions. I have been taking B1 for several months and it has helped me a lot.
I started on 500 mg in the morning but found it made me too jittery. I cut down to 100 mg, went up to 250 mg the next month, and am now at 500 mg every morning without bad effects. Everyone is different, as it says it the book. Does it help? Perhaps. I have no "control" version of myself to compare with. But, as we say in my tribe, "it can't hurt."
Buy the book (Parkinsons and the B1 therapy)written by Daphne Bryan you can purchase on amazon read it and join the facebook group as well there is a mountain of information there for you and1 very warm welcoming people. There is also a website.
Thank you! The book has now been delivered. Will be my bedtime reading☺️I’ve also joined the Facebook forum and lots of information there. Very helpful indeed!
Here's our experience. Also in uk. My HWP started on the Therapy last Nov on 500mg hcl which is oral. He overdosed by day 9. Came off for 10 days and started on 100mg sublingual Mon, Weds Fri. Overdosed again within 10 days. Time off again them 50mg sublingual mwfriday. Too much again. So went back to the oral 100mg everyday then 200mg everyday and thought we would take it steadily and build up. No great improvent apart from sleep at night much better. We decided then after 11 weeks to up to 300mg daily. Symptoms were worse plus we had complications because the Cue 1 arrived so on another break from B1. Daphne states that if you have any improvement no matter how small stay on that dose. It can take up to 6 months for full improvement. Her book is essential reading because you have to take magnesium and b complex. Be careful with the amount of magnesium not to be too high a dose.
One thing Dr Constantini discovered was that Northern Europeans needed a lower dose of B1 than other nations. My HWP definitely absorbs the oral well so sublingual is not always necessary. It is more complicated for us because my husband was diagnosed 29 years ago and has had DBS. We paid privately for a B12 test yesterday and are waiting for the results. We have not given up on B1. People all over the world are on the B1 facebook site and are getting good results. You will be more enlightened after reading Daphne's book.
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