I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and I want to draw attention to something curious: all of them have been successful, to a greater or lesser extent, but with an oral thiamine dose below 500 mg, some with doses as low as 50 mg oral B1 HCL. I discovered this accidentally when one person decided to start with 100 mg orally and had remarkable results after 3 days. So, I changed the protocol defined by Daphne Bryan in her book "Parkinson's and the B1 Therapy," and instead of starting the therapy with 500 mg orally or with the sublingual formulation, I have suggested they start with 100 mg oral B1 HCL, maintain that dose for 2 weeks, and if there are no improvements, increase by 100 mg, and so on until reaching 500 mg. My opinion is that some people respond to the therapy with much lower doses than the minimum recommended dose, and that's why they never succeed with this therapy.
FROM FACEBOOK
Andreia.
I met Andreia a little over a year ago during the first Bootcamp of Young Parkies Portugal. I took the train to Lisbon and then hitched a ride with Ju, our physiotherapist (ours because she's connected to YPP, but she's "our" Ju). Besides me, Ju also gave Andreia a ride on the journey to Figueira da Foz, so we had that trip (and the return) to get to know each other better, especially me, as Andreia and Ju had known each other for a longer time. We introduced ourselves and talked throughout the approximately two and a half hours of the journey. The conversation always revolved around the same topic: Parkinson's disease, each person's experiences, Josefa always with her very professional insight from the numerous years of experience dedicated to the care and treatment of patients with this condition. We immediately formed a strong bond among the three of us, which has continued since then. We met again this year at the 2nd YPP Bootcamp. Andreia has been living with the disease for about 10 years now, and motor fluctuations have become quite frequent and limiting, greatly impacting her quality of life. They had become so severe that she began considering surgical intervention, known as DBS, to alleviate the disease's symptoms. About a month ago, she called me. She wanted information about my surgery, which was done using a different, much less invasive technique. She also had concerns about having electrodes implanted in her brain. After a few minutes of discussing various possibilities, I suggested that before moving forward, she should try HDT therapy with vitamin B1. I had come across reports from people with very encouraging results, and the safety profile is very high—there aren't significant side effects. She responded that she was afraid because she's highly reactive to medications and feared side effects. I told her I didn't mind guiding her based on my experience, and I suggested that her first step should be reading the book "Parkinson and B1 Therapy" by Daphne Bryan. She replied that she had already read it. I mentioned Manuela's story to her; she said she had seen it, and the conversation ended there.
The next day, she sent me a message saying she had bought a bottle of 100mg HCL vitamin B1 capsules and was going to try taking one. I replied that she shouldn't expect to feel anything, as the initial dose for oral intake is usually 500mg, and effects aren't immediate. Some people take a daily dose of 4000mg, 40 times higher than what she was going to take. However, she also later told me that she was very skeptical about all of this.
Nevertheless, despite her doubts, something magical started happening.
Andreia is one of the very rare individuals who respond to very low doses of B1. On the first day she took the capsule, around 11 in the morning, she reported having bowel movements and feeling a bit nervous, but she didn't experience any off periods throughout the day. I warned her to be attentive to any worsening of symptoms, as being so sensitive, even to such a low dose, might lead to an overdose (which isn't dangerous; it's just a sign of excessive thiamine [vitamin B1] characterized by a worsening of disease symptoms. By taking a break from the treatment, symptoms return to their previous state). I also asked her about fatigue; she confirmed she usually experienced it but hadn't that day. Lastly, we discussed the importance of keeping records (a daily log of doses, symptoms, and monthly videos). The next day, she took another capsule, and shortly after, she felt very tense and unwell for a while. The discomfort subsided, and she felt fine. In fact, she felt so well that in the afternoon, she went for a motorcycle ride with her husband.
On the third day, I only spoke to her after 7 p.m. She didn't have time to talk because she was "making the most of it." The previous day, she had remained without any off periods until 1 a.m. She attended a party that night, returned on the motorcycle in great shape, and today she had been "super fine" all day. She took her medication as usual but experienced no motor fluctuations or off periods. Her reaction the next day was very similar to the second day—tense in the morning, followed by well-being until late afternoon. "Today I went for a walk, and I feel like I'm walking normally," she said. "Without any stiffness." "But I really feel like I'm normal all day long. Walking, posture, everything has improved." "But I didn't know what this was... living without effort."
The routine continued for the next two days, with minor adjustments in the timings of thiamine and madopar doses, but then two quite complicated days followed. The most intense headache she had ever experienced, an inability to walk by nighttime, some compulsive thoughts—these made us suspect symptoms of an overdose. So, we agreed to pause thiamine dosing for a few days and restart with a lower dose. Since she was already on the minimum dose, we waited five days before restarting. During this time, she had mixed days—some good, including trips to the beach and running, and one of the best days to date, completely symptom-free, during which she mentioned, "I feel more on the inside than what can be seen."
Andreia continues the therapy, taking an extremely low dose of vitamin B1, about 50mg of thiamine HCL daily, in alternating 100mg doses (please note that this dose is highly individualized and works for her, it doesn't apply to others). She has had a day or two with some motor fluctuations but considers herself around 80% better, with some days at 100%. She sees herself as symptom-free and "perfectly normal," with a tendency to improve. From having multiple motor fluctuations per day (typically every 2 hours), she now has only one or two per day, and they are much shorter in duration, with some days having none at all. She has even decided to cancel the process of starting deep brain stimulation surgery, for now. We continue to fine-tune the dose to reach her ideal point, although i believe we are very close.
For those who wish to try this protocol, the first step is to understand it well. I do not recommend trying it without first reading Daphne Bryan's book "Parkinson and B1 Therapy," where the foundations, the science, and the process of finding the optimal dose are meticulously described. The therapy is extremely inexpensive, and the book is available for sale on Amazon. Andreia is unrecognizable; the transformation that occurred within a month is astonishing. This is also to leave a warning that you can overdose even with very small doses.
UPDATE
Andreia is currently taking 100 mg B1 oral HCL 3 times per week. Most of her motor fluctuations are still under control, however she is complaining of lack of sleep and "bad thoughs" during the night. I will suggest her to try to lower a bit the dose, maybe changing to pills that can be cut off instead of capsules. I realized that this low dose responders react to small dose changes, like 10 mg.
Videos from Andreia
Supplements to help thiamin (B1) therapy
New website to share information about high dose thiamine(B1) therapy: www.B14PD.com
How to take sublingual B1
