We’re trying vitamin B1 for help in treating Parkinson’s disease
In a household that's wary of some supplements, this one has spurred my hope
Note: This column describes the author’s own experiences with vitamin B1, as well as other supplements and treatments. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
Wouldn’t it be great if there were a magic pill that combated the symptoms of Parkinson’s disease? Or all chronic illnesses, for that matter?
When my husband, Arman, was diagnosed with early-onset Parkinson’s disease in 2009, I started reading about alternative therapies. I was shocked at the number of products that promise miraculous results for many diseases and conditions. Thanks to the internet, I’m now bombarded with constant advertisements about curing everything I’ve ever searched for. Back pain? No worries, there’s a cure! Parkinson’s? There’s a pill for that, too! How amazing!
In recent years, the world seems flooded with information about an integrative approach to health, with so many opinions and options that it can make my head spin. Since Arman is a medical doctor, we’ve never bought into the holistic approach to medicine. He was trained to believe in science-based treatments for disease, as little formal data or regulations exist for most alternative therapies.
But Arman has always been a strong believer in taking vitamins and well-researched supplements. He feels that they’re vital additions to his Parkinson’s medications. Slowly, he’s started to open his mind to learning about other therapies beyond those traditionally recommended for Parkinson’s.
Considering B1 therapy
At my caregiver support group a few months back, someone brought up the topic of B1 therapy for Parkinson’s. I wasn’t familiar with it, but I was excited to learn. I knew this vitamin wasn’t in Arman’s regimen.
Several spouses in my group had been experimenting with B1 for some time, and some claimed they were experiencing positive results. I immediately told Arman about it, and he started in-depth research. He also consulted with his movement disorder specialist, as he always does, before starting any new vitamins or therapies. In addition, we purchased a book about B1 therapy for Parkinson’s.
Although no clinical studies have definitively proven that this type of therapy helps those with Parkinson’s, there’s also no downside for us other than the cost, since B1 is generally tolerated well. After much research, we decided to give it a go.
As of today, we’re not seeing any miraculous (or negative) results from the therapy. Arman is on the lowest dose of B1, and he takes it three times a week. Eventually, he will start taking B1 five days a week at the same dose; we’ll see if that’s more effective.
It’s too early to tell if B1 therapy will ease the symptoms of his early-onset Parkinson’s disease, but I hope we’ll see some positive results eventually. I’m glad that Arman has become open to the idea that other therapies could benefit him. As with everything else in our life, I remain cautiously optimistic.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
Comments
Key
B1 has made a huge difference for my Parkinson's symptoms. Make sure to join the Facebook group if you haven't already. (Note: it's called Parkinson's B1 Therapy. Be wary of the "other" group.)
Jamie Askari
That is great news! I am so glad that you are seeing good results. I will definitely look for the Facebook group. Thanks for reading!
Cat Renar
I learned first hand the healing and harm that can occur from nutritional choices so I've always viewed alternative remedies with a healthy dose of skepticism. At the same time, I've grown weary of the pharmaceutical, profit-driven approach to health. When I was first diagnosed with PD in 2015, a brilliant and thoughtful friend suggested B complex for the fatigue I was experiencing. It worked! So I try and 'integrate' what my movement disorder neurologist suggests with nutritional treatments. When I heard about the protocol, I researched it and like you and your husband, I see no downside to trying the B1 therapy (with my Dr's blessing) I started out slow and low, and have increased the dosage to 7 days a week after minimal changes at the lower amount. I have yet to find the 'sweet spot' referred by many as the goal, but am definitely feeling better. I remain hopeful that it continues AND that the scientific/medical community will grant them the opportunity (and funding) so easily and readily attained by pharmaceutical-based research.
Jamie Askari
Hi Cat! I am glad that you are experiencing some positive results from B1 therapy. I remain hopeful as well!! Thank you for reading!
robert I brownstein
Please let us know when he starts taking B1 5 times a week. What other PD drug is he taking??
Thanks
Jamie Askari
Hi Robert! I will keep you posted on our experience with the B1 therapy in a future column. He is currently taking Rytary and Gocoveri in addition to his deep brain stimulator. Thank you for reading!
JAMES KIEPERT
Will this help your coordination?
Jamie Askari
Hi James! I am not sure if it will help specifically with coordination. The B1 therapy is supposed to decrease the symptoms of PD, and I think everyone has a different response. I hope this helps! Thank you for reading!
Key
Thanks to B1, I regained the ability to clap, tap my foot, knock on a door.
I am certain it was B1 because other factors (levodopa meds, exercise) stayed the same. Only the addition of B1 (and co-factors) changed.
Jamie Askari
That is absolutely fantastic news! I certainly hope that others (including my husband) have a similar response. Thank you for sharing and for reading!
sevket adayılmaz
I have taken B1 for about 6 mounts . No results.
Jamie Askari
Lets hope that it starts to help soon!! We are waiting patiently as well. Thank you for reading!
Carol
This is because sugar depletes vitamin B1. We eat too much sugar.
Jamie Askari
Hi Carol! I have read that as well. I do my best to cook healthy, low sugar and unprocessed foods, but it cant be avoided completely. Thanks for the reminder!!
steve backer
I have been on B1 for almost a year now. I have learned that you have to have patience with this Therapy. It can take months to figure out how it works with your body. But for many, but not all, it is making a huge difference. For me, so far, it has improved my gait and my balance and some of my gut symptoms. I am hoping for my beneftis as time goes on. I wish all our brothers and sisters with PD could learn about B1. Good luck with your journey but please join the Facebook group and get the book.
Jamie Askari
Hi Steve! I am happy to hear that B1 has helped you. I feel hopeful that we will begin to see some positive results soon. Thank you for reading!
Mike
Would anyone like to mention what dosages they are using?
We have seen recommendations for 100mg, 300mg, and 800mg daily doses, but no mention of what is actually working or not working in the real world. Does anyone have any real data they can share? Thank you
Mike
Jamie Askari
Hi Mike! My husband is loosely following one of the protocols in the book that I mentioned in my column. As of today, he is seeing a slight improvement in symptoms. Unfortunately I don't have any real data to share. Thanks for reading!
Mike
Duh, when all else fails, read the instructions! We have now read the book, and understand everyone's dosage is going to be so very different and not transferable. Starting low and steadily looking for that sweet spot my brother needs. Thank you so much for your support for all of us.
Jamie Askari
Hi Mike!
I am glad that you were able to read the book. Keep me posted on how its working out for your brother!
Sandy Halliday
What is the book you refer to and where in your column can I get it? My husband was diagnosed with PD last year and is trying B1.
Jamie Askari
Hi Sandy, the link to the book in my column is: https://b1parkinsons.org/book. Good luck with the therapy; I hope your husband has a positive experience with it. Thank you for reading!!
Diana Crompton
I have read with interest your comments on Vitamin B1 for Parkinsons Disease. My partner was diagnosed 3 years ago and as
we are great believers in natural supplements, he has been on Vitamin B50 (50 milligrams of all B vits).
Here in the UK, he medically is taking Sinemet Plus.
I would be interested to know what the safe dosage is of B1 ie does one start at 50mg and work up to 500mg ??
Also, recently received an e-mail from the US of a physician who was injecting vitamin B1 with great success.
Jamie Askari
Hi Diana! Thanks for reading! I have included a link to the book: Parkinson's and the B1 Therapy in my column. This book will provide all of the information that you are looking for regarding dosing. I hope it is beneficial to your partner, keep me posted!
Adrian
Did the B1 Therapy helped Arman?
Jamie Askari
Hi Adrian, he continues to work on getting a helpful dose. So far he thinks there might be some subtle improvements, but not anything drastic. He is continuing to give it time and patience!
robin mayer
I have not heard of Vit B therapy. can you tell me hoe to start?
Jamie Askari
Hi Robin! My husband followed the protocol of the book that I referenced in the column. I hope you have a positive result! Thanks for reading!
NormaIris Quinones
Hello, there was diagnosed in 2018 I’m 49 years . so I’m taking right now Carbidopa levodopa 25/100Er 4 times a day.. Started B1 therapy two weeks ago I do sublingual tablet and also liquid form but I’m not sure how much I’m supposed to be taking. I do feel a lot better recently, but I just need to know of my dosage if it’s correct or not. And I also want to know about the book that you were talking about can I please have the name of it so I can order it and read it . Thabk you so much for this information. It’s very helpful.
Jamie Askari
Hi Norma! It is wonderful to hear that you are feeling better, great news! The book that I refered to in my column is called Parkinson's and the B1 Therapy by Daphne Bryan. Keep me posted on your progress and dosage. Thanks for reading!
Anne Hempstead
Hi,
I’ve been taking high dose thiamine for six years now after reading online about Constantini’s work on thiamine hCl in Italy. It relieves my tremors and other symptoms. They come back if I don’t take as much. I’ve gradually increased it over the years to keep up with my symptoms. I’m currently on four x 100 mg sublingual tablets per day, equivalent to amount 4 g thiamine hydrochloride. I don’t understand why it’s taking so long to do the studies required to prove that it works. Because of that, so many people are missing out on potential relief and slowing of their decline from a very inexpensive method.
Jamie Askari
Hi Anne! That is really wonderful to hear that it has relieved your tremors. I appreciate you sharing your dose and story. Thanks for reading!
RASHID NADEEM
how maximum i can take b1 micro lingual 100 mg per day
Jamie Askari
Hi Rashid! I would refer to the book listed in my column for instructions on dosage. I hope you find success with the B1 therapy. Thanks for reading!
David Arkelettta
I’ve went from taking 100mg of vitamin B1 to to taking 1000 mg . daily. Plus magnesium to help distribute the B1. I’ve never felt better. I’ve also been able to reduce my daily Rytary dose by 1 pill.. I’ll never stop taking B1.
Jamie Askari
Hi David, it is wonderful to hear you are having such great results!! It sounds like you are at the perfect dose. Thanks for sharing this for others, and I appreciate you reading!