I started the B1 therapy in October 2023 (was diagnosed with YOPD in February 2023) following the protocol written on the book “Parkinson’s and the B1 Therapy” by Daphne Bryan. For the past 10 months, it has been helping me controlling symptoms such as extreme tiredness, lack of balance, dystonia, rigidity, bradykinesia and extending the ON time of the Levodopa (when I reach the “sweet spot”). This therapy just works when we find the right dose of B1 and we decrease it when we feel signs of overdose, a process well explained on the protocol. I know people who found out that the perfect dose for them is 400mg or more and others 50mg or less. I was lucky to start with the right dose for me so I felt in a very short period of time its efficiency. I started with oral 100mg/day HCL B1 (combined with Magnesium and complex B as the protocol explains). After one week, I felt more energy and improvements happened very gradually during the following 3 months. At the end of those 3 months, I felt the "sweet spot" (a period of time when the PD symptoms almost disappear and feels amazing) and from one day to the other all the improvements disappeared (what the protocol calls as overdose), 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. I also have the experience of misunderstanding an overdose (when I felt worsening symptoms without feeling the "sweet spot" before) and instead of increasing B1, I decreased and felt worse (when I say “feeling worse” is never worse than before I started the therapy). I know now that when the extreme tiredness (my first PD symptom) comes back it’s probably because I need more B1 and I also know that when the B1 benefits disappear after a period of almost zero symptoms (the sweet spot) combined with a feeling of alert with constant insomnia, it means I am taking too much B1 and need a break followed by a reduction of the dose. Everyone I know who has been doing this therapy for a long time, learns the signs of lack or too much B1 which can be very different from person to person. To navigate through this therapy it’s essential to write down every change we make and how it affects our symptoms. This therapy is a "work in progress" that has been helping me 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.
My positive experience with B1 Therapy - Cure Parkinson's
My positive experience with B1 Therapy
Way to go Rita 😊. I am taking a break right now. When I get an uncontrolled shaking I am overdosing, stopped 2 days ago and I'm backing to normal now. As you know, I'm doing the therapy for more than 5 years now, and I have been lowering from a maximum of 3000 mg, to the current 250 mg, and needing to lower again. Work in progress, but totally whort it. If I can still run after 16 years of Parkinson's, B1 is no doubt one of the reasons 😉
Hi Rita,
It's nice to hear a positive story. Well done!
For my part, I'm doing okay on 100mg (under the tongue) of B1 every other day. I would like to swap to the injection method. I tried it initially, but my (French) doctor threw a tantrum because I'm on aspirin blood thinner and consequently, injections are out, out, OUT!!
Subsequently I've spoken to four other doctors, and they've all said, "nah it's fine, go for it!"
So I'm considering going onto three 100mg jabs a week. Is there anyone else on jabs? At what doses? I seem to remember Daphne changing her dosing protocol recently.
Cheers,
Dan.
Hi Dan,
Unfortunately I can't help you with your questions since I just have experience with oral HCL B1 but I bet someone in the B1 Therapy Facebook group can help you.
All the best,
Rita
Hi Dan, if it's working for you, why change? By my experience sublingual method is way more powerfull than oral and injections are way more powerfull than the rest. If you have found your sweet spot, why change, if is even less invasive then injections. And yes, Daphne has lowered the inititial protocol doses, as by feedback of several people they noticed the average functional dose was lower than initiallly set, I have been helping some people with the protocol, and most of them are fine under 100 mg B1 HCL, which as i said before, is way less powerful than the sublingual form. And don't forget, if you fell that you are loosing eficacy with the theraphy (overdosing), take at least one week break, and restart at a LOWER dose, The biggest dificulty with this therapy is not to achieve results, but to mantain them, as your sweet spot is not something static, but something that will decrease over time, so you will need regular dose adjustments.
Hi Markbit,
Thanks for your input.
My response to Rita was deliberately brief to avoid boring everyone.
My story starts with taking 50g B1 shots three times week. After the second shot, I woke in the morning feeling sensational. I couldn't believe it. Yes, I still had a balance problem but in myself, well, I felt cured! After 3 months, I decided to go on the full 100mg in an effort to resolve the remaining balance problem. Well, I had a severe reaction to the point of having big convulsions - not funny at all. Obviously, I immediately stopped the B1.
3 months later, convulsions long gone, I restarted on 100mg sub-lingual twice a week, then every other day. It's taken a while, but I feel better now, but not that sensational feeling I had when starting on the jabs.
That initial feeling was such that I cannot stop trying to rediscover it again. Don't forget, my French doctor stopped me from having jabs because it's an no-no when on aspirin after heart surgery!!
So, after much consultation with other doctors, I've decided to go back on the jabs in the hope of rediscovering paradise. I shall start again at 50mg like before. If it works I'll up the dose to 100mg twice a week and that will be it, screw the convulsions.
One additional wrinkle, I woke this morning feeling really good! I've been on the sub-lingual 2-3 weeks and maybe it'll will work fully with time. Every day with PD is an adventure. We're so lucky!
Let's see.
Cheers,
Dan.
Hi Dan,
That wonderfull feeling that you describe is exactly when you hit your sweet spot, it happened to me a few times too! As i said before, it´s not hard to achieve improvements, but to mantain, in my opinion and by my experience helping others with the protocol. because the dose is very specific for everyone, and sometimes a diiference in a few mg can make a big diference, and at the same time, when you are a bit over your dose, it seems there is some kind of acumulation process that over time makes you overdose (and overdose doesn't mean that you get worse, but can be that you simply loose the theraphy benefits). Thogether with all this, there is another issue, because the longer you stay on the theraphy, the less thiamine your body will need, meaning your sweet spot will not be something static, but something that will lower over time, creating big reductions along the years, so if you had that sensation of sweet spot, it means that you are a good responder to B1, it's all a matter of dose adjustment, no matter what form are you taking. If you are getting good results now, just keep on, an DO NOT INCREASE YOUR DOSE. Hope that i have been clear.
Marco
Can I ask what brand of sublinguals you guys use (or people you know use), and would recommend please...?
PS thank you for this great post. I hope that you continue to feel better and better ❤️
Thank you so much! I already had a feeling of the "sweet spot" a few times so I guess would be difficult to feel better than that but because I felt so good already, I am stubborn enough to keep trying to adjust the dose. As for the sublinguals brands, unfortunately I don't know but I bet you can find here who has experience with that. Have a great day
Can you link to the B1 supplement you are taking?
Thank you!
Art
Sure! I am taking at the moment B1 100mg pills from the brand NOW: amazon.es/gp/product/B09JZ5...
I started with B1 100mg capsules from the brand Solgar but because I could't divide the capsules, I transitioned to the pill form that can be cut into 4 if I need. I could share a link but it's becoming quite difficult to find it in Portugal at the moment.
Hello YOPDUpsideDown, May I know the brand for magnesium and B-complex you’re taking. Thank you.
Sure, I already tried 2 different ones, what matters is that they have low doses of all Bs:
Vitamaze: amazon.es/dp/B01N6EMPXO?psc...
Hivital: amazon.es/gp/product/B083SS...?
Thank you very much.