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
About a month ago, I was at the Lisbon Book Fair for a book signing session at the publisher's booth. I didn't have high expectations since I had already done a book presentation in Évora, and friends, acquaintances, and other interested people had already been there, so I went more to experience the fair and see what it was like. Besides my daughter and a couple of uncles who told me they would show up, I wasn't expecting much attendance. However, I had some unexpected visits from relatives, my sister, my niece, and two cousins. But before that, a couple in their 60s-65s arrived, the lady using a walker, having a lot of difficulty walking. They are Fernando and Manuela, both doctors, both retired, she has had Parkinson's disease for about 15 years, and had DBS (Deep Brain Stimulation) about 1 or 2 years ago, I can't remember exactly now. According to her, it improved some things but worsened others, particularly balance and gait. During our conversations, I came to understand that they knew Ju, and when Carolina (my daughter) asked me how I was getting to Évora and I replied that I was taking the Express bus, Manuela said they lived in Lisbon but had a farmhouse in Évora and they were going there next. She mentioned that if I wanted a ride, they would be happy to take me. After the book signing session, I grabbed a bite to eat and then headed back to Évora with Fernando and Manuela. On the way, we talked about various things related to Parkinson's. I suggested to Manuela that she should get the book about B1 therapy and give it a try since she had nothing to lose and it might provide some benefit. We haven't spoken since then, but yesterday Manuela sent me a message asking if we could meet because she had some doubts about the therapy and wanted to talk to me. I agreed, and we arranged to meet for coffee at Praça do Giraldo before lunch. At 11:30, I met them at a terrace, and I immediately noticed that the walker was not there. I thought maybe Fernando had put it away. I sat down and asked Manuela if she had started the therapy after all, to which she replied yes, she was doing 100 milligrams injectable twice a week. I asked if she had noticed any difference, and she replied, "Marco, I'm so much better! It's unbelievable." That's when I realized why I didn't see the walker; she was carrying an umbrella and a cane to help her walk. She said that as soon as she had the first injection, she noticed a difference after 35 minutes. She even regained her sense of smell, which she had lost before, but now, after all these years, it has come back, although it vanished again. I was amazed. It's truly incredible to see the difference that occurred in less than a month. They even invited me to have lunch with them, and I went. Once we were at the farmhouse, I made a video call to Carolina so that she, who witnessed how Manuela was at the Book Fair, could see how she is now. Fernando send me some videos from before starting the therapy (white dress) and from today, after 6 vials (blue dress). After we finished lunch and before saying goodbye to them, Manuela said to me, "Thank you, Marco, you saved my life." It was touching. Tomorrow I have an appointment with my neurologist. I'll bring my book to give to him, as well as a copy of "Parkinson's and B1 Therapy," the videos of Manuela, and a letter in which she describes the changes she has felt.
UPDATE - After the initial extreme improvements recorded, a period followed where these improvements faded, clearly indicating an overdose scenario. Manuela persisted with injections of 100 mg twice a week, tried the sublingual version without success, took breaks, and restarted. She has now stabilized the initially achieved improvements with a dose of 100 mg oral B1 HCL per day, occasionally skipping a day or two when she feels a loss of therapy effectiveness.
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