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B1 thiamine Therapy
Anybody who have experience with B1 therapy ?
Oystein
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32 Replies
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My doctor recommends thiamine 100mg per day, folic acid 400mcg per day.
I use the Nature Made B-Complex, which also has B-12.
I also take 100mg resveratrol daily. I believe that has helped a lot.
Doing balancing exercises and lots of walking, along with that has seemed to improve my mobility considerably.
Also, on standard Carbidopa/Levodopa 25/100.
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My husband has Parkinson’s and was diagnosed in 2020. I recently purchased the book Parkinson’s and the B1 therapy by Daphne Bryan PhD. It had some very interesting points. My husband is also taking the Nature Made brand of Super B-complex. I purchased some B1 but am going to ask his neurologist before starting him on it. He also takes Carbidopa/ Levodopa. Always praying that a cure will be found!🙏❤️
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There is a own group on Facebook for those who are following this therapy, called Parkinsons s thiamine hcl. According to the lastest publications the results reported are xtremely positive. The theraphy is additional to Carbidopa/levodopa. According to yesterdays publication most symtoms are reduced” or away applying this therapy. Most replies from people started with this is also vey positive. I wonder why this therapy is not official recommended?
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Yes, I wonder as well
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It’s probably not recommended because it’s not a pharmaceutical! It seems anything of a holistic nature is Poo Poo’d by neurologists!
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Neurologists, or most any doctor, are not generally very versed on “natural” remedies or treatments. But they are inundated with information and samples of all the latest pharmaceuticals. And has anyone noticed the number of pharmaceutical commercials there are on TV? An Italian neurologist, Dr. Constantini, had tremendous success treating thousands of PD patients with high-dose thiamine. Daphne Bryan’s book is a great resource and is available on Amazon. She has PD herself and B1 therapy greatly improved her life. Make sure you check out her FB group, Parkinson’s B1 Therapy. Very informed folks in that group and good support. There is another B1 group, but I do not recommend it.
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The reason is there are no double-blind research studies with B-1. The researchers in Italy who were working on B-1 studies have had trouble getting financing for such a “gold standard” study. Not surprising as there is no money to be made from sales of B-1 vitamins, which cost the patient less than $1.00 per day, so don’t expect a pharmaceutical company to show interest. Their best hope for funding is one of the Parkinson’s organizations, or individual contributions. Hopefully they will be able to do this study as it shows promise for reducing symptoms and possibly stopping disease progression.
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Daphne Bryant runs the B1 HDT facebbok group that you mention. Her book, Parkinson’s and the B1 Therapy, is available on Amazon and the profits are dedicated to funding a proper double blind placebo trial. Aside from the facebook group, she regularly responds to posts on healthunlocked.com.
I have been taking B1 100mg as a sublingual for over a year and am among the thousands of PWP that feel it has significantly helped.
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Hello again
The B1 therapy you are referring is this the therapy as described by dr Roy Propsner , aspr facebookgroup ” “Parkinson s thiamine hcl”? Looking forward to hear from you about your experience as I consider to start myself.
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I recommend the group I mentioned below, over Roy Prospner’s.
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Hi Pat, what name brand of resveratrol do you take? Thanks, Jim
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I order it online from Swanson. Order other supplements from them as well.
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Carbidopa depletes Vit. B6 potentially causing Tardive Dyskinesia. I take 100mg B6 as well as the fat soluble form of Vit B1(Benfotiamine) 100mg
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It’s really helpful to know about the B vitamin depletion factor. My PCP is a functional medicine doc and is always on top of these things. When she found out I had been diagnosed with PD, she put me on K-Pax Mitonutrients for mitochondrial support. The only issues I seem to have now are side effects from the carbidopa/levodopa, including dyskinesia and toes curling down.
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I started 1,000 mg of B1 2x/day about 10 weeks ago and noticed an increase in energy within a day of starting. I had been falling asleep midday prior and this seems to have reduced or eliminated this drowsiness. My symptoms otherwise have been very mild and I am not taking any medications for Parkinson’s.
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I am up to 4000mg and it has improved so many of my PD symptoms
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Do you take the sublingual form that goes under your tongue? What brand do you take and how often? Are you also taking Carbidopa- Levadopa? Thanks so much!
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Leroy, did you mean to say 100mg instead of 1000mg 2x a day? Want to clarify that.
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I bought Daphne Bryan’s book from Amazon and have been taking B1 since March..I think that it’s helping me with my symptoms..You need to read her book to understand the dosing of the B1 along with B complex and magnesium.
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I bought Daphne Bryan’s book from Amazon and have been taking B1 since March..I think that it’s helping me with my symptoms..You need to read her book to understand the dosing of the B1 along with B complex and magnesium. I also take carbidopa levodopa 25/100mg. My symptoms are very mild.
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I take 500 mg of magnesium at night. This is very effective in reducing constipation.
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Since following Dr Costantini’s(he is an Italian neurologist who began studying a therapeutic protocol to treat symptoms in neurodegenerative diseases)protocol for B1 therapy I have improved considerably. I started taking 2-500mg of B1 per day for a week working up to 4000mg per day, which was the best dose for me. I open 5-500mg capsules and pour them into applesauce and 3 go into my green drink at noon. It has worked incredibly for me.
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My husband is trying it right now. We both have read the book, Parkinson’s and the B1 Therapy. I also was part of a support group that zoomed with the author. You have to use B1 HCL. He is slowly working up in dosage as described in the protocol in the book. The Facebook group is also filled with helpful advice and the author of the book is active in that group. Many people are seeing remarkable reduction in their parkinsonianisms.
here is the link to the Facebook group.
https://m.facebook.com/groups/parkinsonsb1therapy/?ref=share
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My husband is also on this therapy. I heard about it from a caregivers support group. Takes a village I guess. So far he’s only on 1500 mg of B1 per day but am hoping to increase it slowly. Mixed results so far but worth a shot.
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I have been trying B1 megadosing for four months. It has had absolutely no effect.
In the last two weeks I had appointments with neurologists in Cambridge (UK) and Nijmegen, Holland (Prof. Bloem, who has just won the USD 3m Stevin Prize for his P.D. research). Both confirmed there was no evidence of any benefits from megadosing with BI.
Prof. Bloem suggested that Daphne Bryan’s results were either the result of a placebo effect or because she does not actually have PD. He also warned me of the dangers of megadosing as the potential toxic effects of high thiamine HCl were unknown.
Daphne Bryan specifies no actual dose saying it could be between 200-4000 mg/ day and that we should just just try it and see ! What I found strange is that she tried for a while and her tremor increased. Why would anyone continue a treatment when the tremor got worse??
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Have you read the book? I found it to be very helpful to know how to dose. My husband was dosing incorrectly until we read it.
My own experience with Western medicine is that doctors so often know little about alternative treatments and nutrition. Functional medicine drs know much about such things and are usually also chiropractors. Good luck to you.
I also gleaned info from this website. https://b1parkinsons.org/about-the-b1-protocol
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If you read Daphne’s book, and the dosing suggestions, she explains to start low and work your way up to find your “sweet spot”, which is different for everyone. If symptoms return or get worse you have “overdosed” (not harmful) and you should take a 2-week break and begin again. Daphne is a music professor and pianist. She had lost the ability to play the piano until she found her B1 sweet spot and now she plays beautifully again. It is all documented, along with a video.
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Yes U have her book and tried her therapy. It made my symptoms worse which the author ascribes to increasing dosage too fast. I am not doing the B1 program this time. I am doing 5 grams of Creatine daily. I am gaining more strength which I sorely need.
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I started the B-1 therapy about 4 months ago. For the fist month I received 2 IM shots a week for 100 MG of B-1. I checked the dosing chart that Dr. Costantini recommended and I increased the doses to 125 MG of B-1 twice a week since my weight is heavier at 185 – 190 LBS.
I have not taken the B-1 orally yet because I thought the IM shots would be more effective than oral doses that don’t go into the bloodstream directly.
I read Daphne Bryan’s excellent book and like her, improvement of my symptoms is more gradual than immediate. I do think the therapy is helping me and will continue to receive the shots for at least another 2 months. At that time I may consider reducing the dose back to 100 MG or increasing it to over 125 mg., perhaps as high as 150MG.
Good luck and thanks for your comments concerning how this therapy is working for you.
Paul
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I follow Daphnes regime
I feel like it improves energy and perhaps some muscle tightening
But other symptoms no change
I find Taurine supplementation quite effective for energy also
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I follow the B1 Thiamine group in the Health Unlocked forums. I have tried various amounts of B1 Hcl, from 500mg to as high as 2 grams per day. I decided to stop taking it for a while as I didn’t know what it did for me, and ended up with severe constipation. Once I resumed 1 gram of B1 along with 1 gram of magnesium per day, my constipation is no longer a problem.
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I haven’t personally tried B1 therapy, but I’ve heard positive experiences from others. It’s essential to consult a healthcare professional before starting any new treatment, including B1 therapy, to ensure it’s suitable for your health needs. Additionally, you can explore options for sourcing B1 supplements from reputable suppliers like Canadian Pharmacy B2B. Wish u health!
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