B1 is a myth or reality?

[Farooqji]

This column describes the author’s own experiences with vitamin B1.

parkinsonsnewstoday.com/col...

[Bolt_Upright]

While I am not sold on B1, I found that article... surprising?

He has been on B1 for 8 months, and while he is not better... "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 assume that if some PD Meds have decreased, that he has not gotten worse in 8 months.

Personally, I think there are two separate things: Stopping the progression, and healing. I don't know if either is possible, but I think the stopping the progression part is the thing you might see the quick results with (although noticing a lack of a decline can be hard to do).

The healing part? I think it's possible. But if it is possible, I expect it to be a really slow process.

Anyway, to sum up, maybe progression has stopped, and that would be a good thing.

[Farooqji in reply to Bolt_Upright]

Agreed. I have tested B1 therapy numerous times but felt nothing. Conclusion is that B1 doesn't work for all

[Bolt_Upright in reply to Farooqji]

But "nothing" could be a good thing if it means progression is not happening.

Please don't get me wrong though. I am not sold. I am a B3 man.

[park_bear in reply to Farooqji]

Improvement takes 4 months.

[Farooqji in reply to park_bear]

4 months if taking the right dose

[hercules957 in reply to park_bear]

I have been on B1 for 4 yrs and noticed improvements after one month.

[park_bear in reply to hercules957]

It is great that it worked so quickly for you. It took over 3 months for me for most improvements. People need to give it at least that long before saying it does not work for them.

[hercules957 in reply to park_bear]

As stated in numerous location, the dosage is the tricky part, this is I think the part that requires time. Trial, observe, adjust and repeat. I had an initial consult via email with Dr C and started B1 intramuscular at 100mg and it worked right away. Never adjusted it since.

[park_bear in reply to hercules957]

Nope. It took over 3 months for me to realize benefits after my proper dosage was established.

[hercules957 in reply to park_bear]

Interesting, but patience is required before giving it up. I am so grateful for the effects.

[Oneworld23 in reply to Bolt_Upright]

My brother w-p has been trying B1 therapy, as per Daphne Bryan's book, so has also been taking the magnesium and B complex with a low dose of B1 (this is so it doesn't interfere with the high dose B1) It took over a year to find his sweet spot but 14 months on the difference is just amazing. He is a different person, even mowed the lawn and has started doing his own ironing again ( he lives alone) the family have been stepping in to help in months gone by.

The change came after trying many many different doses of B1 but the sweet spot for him is 50 mg Superior Source100mg No Shot microlingual tablet. I break it in two just with finger nail and he dissolves it under his tongue Mon, Weds, Fri.

He doesn't see the improvements even though we have been showing him before and after videos. Seems to think his improvements are minimal. He does deteriorate towards the end of the day and still can have a few freezing episodes but all in all it's been a game changer for him.

I hope this helps

[jimcaster]

I commend the author and her husband for trying B1 and for her candor. High dose thiamine (B1) and Dr. Constantini were all the rage on this site when I was diagnosed six years ago. I began taking it within weeks of diagnosis and still take it today. I HOPE it might have slowed the progression of my disease, but there's no way to know. One thing I do know: It has not stopped the progression for me. I'm still doing very well, but I am worse now than I was six years ago. I suspect that is true for virtually all of us or there would no longer be a need for this forum. B1 offers hope and it MIGHT be beneficial, but it's not as miraculous as it has been presented.

[park_bear]

Informal survey at HU: healthunlocked.com/cure-par...

"47 positive responses and 19 negative"

[PixelPaul]

I think it's important to note that it seems the correct dose of B1 is very individualistic and it can be difficult in finding your personal "sweet spot" of what is the correct amount for you. So maybe someone has been taking B1 for months and is experiencing no perceived benefits, but maybe it's because they aren't taking the correct dose.

[kevowpd]

Plainly a myth when measured against Dr C et al's claims about it. No longer a conversation, at least among reasonable people with some knowledge of the history of it.

Can it 'help a bit'? (seemingly the new standard). Sure, just like any other number of things you can find in a vitamin store.

[YOPDUpsideDown]

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 she read on other people's testimonials that made her 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. Making a 2 week break and evaluating its effect on me, also gives me the answer about if I need to keep, increase or decrease the 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 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.

[Hele60 in reply to YOPDUpsideDown]

Thank you for your helpful post. Are you taking oral or sublingual B1?

[YOPDUpsideDown in reply to Hele60]

I am taking oral B1 HCL from the brand "now" that allows me to cut the pill in different parts.

[Springbreak in reply to YOPDUpsideDown]

Hi what dosage do you take and what brand please. I take 200mg of Hcl ..

[YOPDUpsideDown in reply to Springbreak]

As I wrote, I started with oral 100mg HCL per day (700mg/week). I’ve made 3 breaks, reduced 3 times and I’m now taking 50mg 5 days of the week (250mg/week).

[Springbreak in reply to YOPDUpsideDown]

Are you taking 50 mg of sublingual or Hcl everyday.. I am taking 200 mgs of Hcl every day as a starter .. do I need to increase my dosage ?

[chartist in reply to Springbreak]

This might be of interest to you :

healthunlocked.com/cure-par...

Art

[Springbreak in reply to chartist]

Thank you

[YOPDUpsideDown in reply to chartist]

Thanks for sharing this. I have been successful by reducing the dose to half after overdose but like your post mentioned, it really can change from person to person. We all wish there was a precise formula to help us navigate through the right doses but until that happens, we keep testing, adapting and learning along the way

[Hikoi in reply to YOPDUpsideDown]

Are you saying you had on off symptoms barely 6 mnths after being diagnosed.

…..feel like a miracle when (in my case) my 3h ON become 4h or more……..

Do you take levadopa, and if so when did you start?

[YOPDUpsideDown in reply to Hikoi]

Yes, I do take Sinemet (100/25) 3 times per day since August 2023. I never got more than 3h ON for each pill, which leave me many hours of the day OFF. However on the B1 therapy sweet spot (that is always temporary) I can feel 4h or more ON which feels like a miracle. Until that sweet spot happens I feel other improvements (it's a progress that culminates on the sweet spot) such as more energy (the first symptom that improves if I am taking the right dose), less dystonia, less bradykinesia, and more balance.

[CuriousMe12]

Does anyone know what this overload of b1 is supposed to be doing to the brain. I.e. if it works then why.

[CRMACK1948]

I notice in the article that the author says they will continue to add B1 to the morning stack of pills,which makes one wonder if they followed the protocol,and also which kind of B1 they were using.Not getting worse is a win in my book.

[Hikoi in reply to CRMACK1948]

I note he also has had DBS which could be masking symptoms

[Osteopathic]

My husband has also tried taking B1 therapy as per the instructions in the Parkinsons and the B1 Therapy book by Daphne Bryan. It hasn't worked for him. I believe the proceeds from Daphne's book are going towards funding a clinical study on B1. I am not a scientist - still, I am curious why Parkinsons' Facebook communities who are taking B1 are not recording their findings - eg. weight, when they take the B1, how much they take, their experience etc. etc. and sharing these results in a huge database. Daphne's book says that the B1 therapy is very individualized; however, if a clinical trial took place, you can bet they would set up criteria and enter data in order to run the trial, do a comparative analysis and record results.