Vitamin B1 for Parkinson’s disease wasn’t the miracle we’d hoped for
An update on my husband, 8 months after starting the therapy
Note: This column describes the author’s own experiences with vitamin B1. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
Last fall, at my support group for Parkinson’s caregivers, I learned about vitamin B1, or high-dose thiamine, for the management of Parkinson’s disease symptoms. According to the Michael J. Fox Foundation for Parkinson’s Research, “A few studies have found an association between low thiamine levels and Parkinson’s disease, though studies had limitations.”
Some of my fellow caregivers had noted positive results from adding B1 therapy to their spouses’ regimens. I was very excited at the prospect of the therapy also helping my husband, Arman. When I found the B1 Parkinson’s website, I was amazed at the quotes I read. It sounded like B1 was the miracle we’d been waiting for.
Our next step was to consult Arman’s movement disorder specialist. Although he hadn’t heard about the therapy, he was open to Arman trying it.
Once we received the physician’s seal of approval, Arman got started. For his dosing, he followed suggestions from the book “Parkinson’s and the B1 Therapy” by Daphne Bryan, PhD.
How it’s going
It’s now been about eight months since Arman started taking vitamin B1 for his early-onset Parkinson’s disease, but it’s tough to say if there’s been any real improvement.
Unfortunately, the miracles I was hoping for have not happened. I suppose my mental images of him standing up straight, moving effortlessly, and never falling again weren’t very realistic. I keep rereading quotes from others who have had life-changing experiences with B1, and I can’t help but wonder why that didn’t happen for us.
Although we haven’t seen a significant decrease in Arman’s symptoms, he has been able to decrease the dosage of some of his Parkinson’s medications. I will take this as a small win for team Askari in our boxing match against the disease.
As a result, even though B1 therapy hasn’t been an overwhelming success or provided him a magical result, Arman will continue to add the vitamin to his handful of morning pills. So far, he hasn’t noticed any downsides of taking it.
We will continue to stay educated and informed on any new vitamins, supplements, medications, or procedures that may be the miracle we’ve been waiting for. A cure or effective treatment option for Parkinson’s disease may not be found today, tomorrow, or next week, but we hold on to the hope that it will be found someday.
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.
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Comments
Dorothy Marshall
I would like to know Arman’s B1 dosage and method
Jamie Askari
Hi Dorothy! Thank you for reading!! Arman has been following the protocol that is outlined in the book: Parkinson's and the B1 therapy.
Willem Ginckels
Thank you for your article. I thankfully take heart from it as I too have been waiting for that miracle to happen. In vain. But I will not, cannot give up hope. And will continue taking the B1 sublingual, at the moment 4 times 50mg a week. I wish you all the very best,
Willem, Western Australia
Jamie Askari
Hi Willem! I feel the same, I will NEVER give up hope! Wishing you all the best as well. Thank you for reading all the way in Australia!
Laini
Did you read Daphne’s book? Follow her FB group? She’s there to help though not everyone sees miraculous results, he could experience improvements. I’m still testing correct dosage
Jamie Askari
Hi Laini! Yes, my husband did read the book. We are not in her facebook group, we appreciate the suggestion! Best of luck with the dosage, we are still working on that as well. Thank you for reading!
Lee T
I can confirm that my result was equally underwhelming. I tried dr Sanitini protocol and the second time Dr Bryan and both times, nothing.
I think that unsuccessful remedies should be published as well as the successful ones so that we don’t waste our time.
Jamie Askari
Hi Lee! I am sorry to hear that you did not have any relief from B1. Thank you for reading, and sharing your experience.
M Nicholson
Sadly, I am not surprised. I consulted two internationally known PD authorities at the outset and both dismissed the idea out of hand. Three other friends tried and none of the four of us reported any improvement after six months on B1 or benfotiamine.
That is the trouble with Youtube. Anyone can put anything on and we are inclined believe it, especially when we are clutching at straws. What made me skeptical at the outset was the fact that Daphne claimed B1 made her feel worse to begin with. Who would ever persist with an additive that made one feel worse? Any Daphne has sold her books well and I suspect the interviewer purchased shares in benfotiamine manufacturers!
Daphne Bryan
Renee Ford
Last night I ordered the book on B1 therapy for a friend and then see your above comments. You say that your husband had early onset Parkinson’s. My daughter and I are both nurses and we observe that early onset Parkinson’s is a horse of its own color. In our family we have two relatives diagnosed at 27 and 35 years of age. Both have strong ties to chemicals. It would seem that a reduction in medication is good since long term use has its side effects. I hope that my friend who has late onset Parkinson’s will be helped. Those who deal with this disease are courageous souls who I admire.
Jamie Askari
Hi Renee! I am hopeful that this therapy might provide some relief to your relatives as well as your friend. We are pleased that he has been able to reduce medication and see that as a win! Thank you for reading!
Rita Botelho
Dear Jamie, thank you so much for sharing your husband's experience with the B1 therapy. I also started this therapy in October 2023 (was diagnosed with YOPD in February 2023) and I have been learning a lot about it not just with my own experience but by knowing what other people are experiencing with this therapy. I consider myself a case of success and I truly believe in this therapy effect because I managed to find the right dose of B1 from the very beginning and adapted the dose along the way just as the protocol explains. Being able to find the right dose, made me able to reach many times the what is called the "sweet spot" and probably that's what you read on other people's testimonials that made you feel it was some sort of miracle. I can tell you that yes, it may feel like a miracle when (in my case) my 3h ON become 4h or more and the level of energy is amazing but that amazing feeling is always temporary, takes time to get there and takes time to feel that "sweet spot" again. It's important to be patient, not having unrealistic expectations (this therapy is no cure neither helps with all PD symptoms), listening to our body (all improvements count) and for me, it really helps to keep a report (writing and videos) of all the dates/doses/effects. When I feel this "sweet spot" for some time, I know I will loose its effect afterwards because the body will eventually accumulate too much B1 (overdose) and it's necessary to make a break and restart with a lower dose. I started with 100mg/day HCL B1 (combined with Magnesium and complex B as the protocol explains). After one week, I started to feel more energy and improvements happened very gradually during the following 3 months. At the end of those 3 months, I felt the "sweet spot" and from one day to the other all the improvements disappeared, so I made a 2 week break and restarted again with a lower dose. I restarted already 3 times and I have been managing to keep doses that have a good effect on my symptoms. One of the biggest problems that I see in other people is taking too much B1 from the very beginning and not feeling any improvements (not even one) for months. Everyone is different. I know people who found out that the perfect dose for them is 400mg and others 50mg or way less. Other problem is not waiting long enough (4 weeks) to see if there's any improvement and increasing the dose instead of decreasing. I have a tip for your husband to know if he has to increase or decrease the dose that is also explained in the protocol: stop taking B1 for 2 weeks. If he feels improvements during this period of time and after a few days, the improvements disappear it's because he's needs less B1. If during these 2 weeks he doesn't feel improvements, then he needs more B1 and increasing the dose step by step (waiting 4 weeks for each new dose) until he feels at least one symptom that improved. If that happens, keep that dose and be patient...the sweet spot (followed by the overdose) will happen. I wouldn't call this therapy a "miracle" but rather a "work in progress" that helps with some symptoms and for someone like me who doesn't tolerate the side effects of many PD medication (except for levadopa), this therapy has been extremely helpful to live better. Hope it helps. Rita, 41 years old from Portugal.
Jamie Askari
Hi Rita! That is wonderful news to hear that you are having a positive result. I appreciate all of the helpful information that you have provided, I will certainly review it with my husband. I hope that you continue to see benefits from B1. Thank you for reading!
Sue Hester
Baz has been taking vitamin B complex not just B1. He didn’t tell me he’d run out but I soon noticed he was not as good. However I have to say the biggest game changer is EXERCISE.Due to circumstances beyond outer control he hasn’t been able to cycle or play tennis and the deterioration has been marked.Hes now started the gym and after just 6 sessions his symptoms are improving.Exercise is medicine.
Jamie Askari
Hi Sue! I agree that exercise is a game changer. My husband tries to exercise at least 5 times per week. It is often challenging because of his symptoms, but he makes it a priority. Thanks so much for reading!
Dan
If this B1 quackery actually worked everyone with PD would know about it and be using it
David Barber
I would be curious to know who wrote the book. There are two Facebook groups One is vitamin B1 HCL high dose therapy which originates from the original doctor in Italy and the other one is from here in the United States. The original one talks about high doses where is the one here in the States talks about microdosing. Myself I went with the high dose. I take three grams twice a day and everybody around me all say the same thing that they can hardly tell they have Parkinson's now. So I guess I'm one of the lucky ones that it's helping.
Michel Bekhazi
Good day, May we please know how many mg
of B1is Arman taking per day now?
I ask because after reading the book , l am now
Taking 1200 mgs per day and have a troubling
Feeling that I am about to enter a danger zone,
Many thanks
Evan
I believe those who say that B1 therapy has helped them are experiencing a classic case of placebo effect. From everything I've read, there is no research that shows the B1 protocol is effective. There are a number of drugs being tested for PD and some show real promise. I will wait to see what the phase 2/3 studies say before starting to dose myself with something unproven. B1 may not harm you but I've read quite a few people noting how they've "overdosed" and had to "start over" to find the "sweet spot." Sounds agonizing frankly.
Lee Cornell
Wishing all contributors the best and hope for finding those things that make life more enjoyable.
My own experience with PD started in Fall of 2022 and was confirmed with 3 different movement disorder specialists by April 2023. At this same time, I started with B1 therapy and built up to 2 grams daily. I also started exercising/running several times per week. My last visit to my main movement disorder specialist said my PD had regressed to the point of suspected misdiagnosis. The only physical symptoms remaining are a slight tremor, which they now call a dystonic tremor, and lowered blood pressure, which may be due to the running.
Not sure if its the B1 or the exercise, but I'm going to keep at both.
Joakim
B1 as intramuscular injections works great for me and gives an instant relief of symtoms. It helps with both motor and non motor symtoms. Most my fatigue was gone directly after the first shot. I do 100 mg 2 times a week. In the US you can get Vitamin B shots at many health clinics.
I didn't have any clear results from taking pills and you need to go high in dose to get the same effect, around 2 gram Tiamine HCL 2 times daily, morning/afternoon.
For instructions from the inventor of this method, please refer to
https://highdosethiamine.org