B1 Therapy

[Biscuit61]

hi sorry if this a repeat but wondering if people have had success following the B 1 protocol and also do they continue to use other supplements?? Thanks PWP partner

[Gcf51]

Yes,,,,

Read Dap1948 book “Parkinson’s and the B1 Therapy.” The online version might be best due to links and searchable. amazon.com/gp/product/B09TZ... .

Join her Facebook group on Facebook). facebook.com/groups/parkins... .

[park_bear in reply to Gcf51]

Her website: b1parkinsons.org/

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

[M-o-ggy]

There is a lot of information about B1 on this site Just use the search engine.

There are also FB pages that follow Dr Constantini 's protocols. He used B1hcl and his colleagues are continuing his work.

[Gcf51 in reply to M-o-ggy]

Yes, there is a lot of info on HU.

My opinion Dr Constantini‘s protocol has evolved. Some have taken different paths. Dap’s book was reviewed by one of his colleagues before it was published. Do you have a link to one of his colleague(s) — you feel has taken the correct path?

Have read on HU, where the poster felt Dap's is no longer High-Dose Thiamine (HDT). Even read it was Micro Dosing.

[Dap1948 in reply to Gcf51]

As the suggested daily intake of B1 for a healthy, fit man or woman is about 1-1.5 mg, the B1 therapy for most people will always involve a higher B1 dose than this.

[JayPwP]

I want to try B1 HCL but I am not sure how to start it with intermittent fasting.

Since I have a 4 hour evening eating window, I have no idea when to take B1 HCL, assuming I intend to start with 100 mg a day.

All suggestions appreciated...

[JayPwP in reply to JayPwP]

Also how to differentiate between B1 paradoxical reaction and overdose symptoms?

I believe overdose is observed by an improvement followed by a worsening of symptoms.

So if there is no improvement before worsening, would it make sense to continue the same dosage by assuming it to be a paradoxical reaction? If yes, for how many days before it can be termed as overdose and stopped?

[LAJ12345 in reply to JayPwP]

And it also might be it isn’t too much but eg magnesium and other b vitamins need to be taken at that point to correct other deficiencies before trying more again

[Dap1948 in reply to LAJ12345]

We recommend establishing magnesium and b-complex supplementation before starting B1

[Dap1948 in reply to JayPwP]

The term ‘paradoxical’ is used for a feeling of unwell when taking B1. It is not used in the B1 therapy in Parkinson’s, but is seen in the general public who have a thiamine deficiency. I think a ‘paradoxical reaction’ starts immediately as a reaction to B1 on a B1 deficient body. Most people with Parkinson’s are not B1 deficient. The B1 therapy is not to correct a deficiency measurable in the blood. The paradoxical symptoms are more flu-like. Overdose symptoms tend to be a worsening of Parkinson’s symptoms. In two and a half years of helping people with Parkinson’s find their right B1 dose I don’t think I have seen a paradoxical reaction, though there have been a few times when people have benefitted from starting on a very small dose and slowing building up.

[JayPwP in reply to Dap1948]

I have tried multiple times over the years. I get worsening of rigidity and other symptoms almost immediately. I would understand if it would happen after some days of starting which would mean buildup and overdose.

I don't take magnesium. I take B-Complex daily 1 capsule in the morning and Niacin 100 mg at night.

B1 HCL when trying is NOW B1 100 mg.

[Dap1948 in reply to JayPwP]

We recommend keeping the B3 (niacin) in the b-complex below EFSA’s upper limit recommendation of 20 mg.

Magnesium is needed to make the B1 therapy work.

I would suggest that you space out your B1 doses. Try every 3rd or 4th day. If that still brings worsening symptoms, then space it out further. When you find a dose which doesn’t produce worsening symptoms, stay on that for 4-6 weeks. If it doesn’t produce any improvements then you should find you can gradually, really slowly, decrease the days in between until you find a dosage which triggers improvements. Several people in our group have found that that has worked.

I recommend joining our Facebook group “Parkinson’s B1 therapy”. You’ll get a lot more help there than I can put on a post here

[JayPwP in reply to Dap1948]

Thank you 🙏

I am already in the facebook group.

You mean I should stop Niacin 100 mg at night and just take the Niacinamide that is part of the B-Complex?

Will start Magnesium L-Threonate tomorrow morning with the B-Complex.

[LAJ12345 in reply to JayPwP]

I think niacin made my husband worse. We tried it once and symptoms worsened. But there is some in his Hardys multinutrients.

[evenshoshan in reply to Dap1948]

Hello Daphne, after reading the above, I'm at odds about the 'spacing out' strategy for finding one's sweet spot. Spacing out, for instance every 3-4 days, means for me that the residual or the half-life of thiamine is gradually reduced over those (3-4) days.

If my understanding is correct then how does it explain what I read elsewhere about thiamine ? (please see here below)

"All B vitamins are water soluble, meaning that the body does not store them. "(nutritionsource.hsph.harvar...

"Only small amounts (of thiamine) are stored in the liver, so a daily intake of thiamin-rich foods is needed" (mountsinai.org/health-libra...

[Dap1948 in reply to evenshoshan]

I take my B1 once every six days… one day I take it, 5 days I don’t. It works! I have read that it can take up to 18 days for the thiamine to leave the body. I’m not a scientist, I’m just saying that lots of us space the doses out when we want to reduce the dosage and it works! I politely suggest that you try it..

[Dap1948 in reply to JayPwP]

You can take B1 quite safely on an empty stomach

[bpoe in reply to Dap1948]

I am curious, it seems like I have tried every vitamin B brand out there. My issue is swallowing the capsules as the capsules are very large and I have choked on the capsules. I was wondering if getting the B1 in a form like Brewers Yeast or some other food/supplement could be used? Suggestions anyone?

[Dap1948 in reply to bpoe]

If you use one of the various ‘sublingual’ tablets then you would just have to leave it under your tongue for 30 minutes.

[evenshoshan in reply to bpoe]

Have you tried B1 Micro-Lingual 100 mg from Superior Source ? The thiamine mono-nitrate tablets dissolve instantly in the mouth. One must try to keep the dissolved ingredients-saliva under the tongue for at least 15 minutes.

[bpoe in reply to evenshoshan]

thank you! i've taken my carb/levo sub-lingual to no ill effects, should be ok

[LAJ12345 in reply to Dap1948]

My husband has been taking 750mg of vitacost b1 for years now. He has over the last few months started tremoring more as his levodopa dose wears off. Do you think he should try increasing or decreasing the b1?

[JayPwP]

Just for information...

Brussels sprouts is listed in the list of B1 Depleters.

B1 Depleters list

[Bolt_Upright]

I hate to be that Bolt, but the question was "wondering if people have had success"?

I am curious too. Any success stories? Medication reduced? Progression slowed, stopped, reversed?

Thanks.

[Gcf51 in reply to Bolt_Upright]

There's currently 46 success stories posted on Dap's Facebook page (not everybody will post theirs). She currently has over 11,500 members.

[Biscuit61]

thanks all yes I know the book info was like Bolt wondering if any HUers had had success with it - reduction in tremor better sleep less muscle stiffness etc

[chartist in reply to Biscuit61]

In the early use of B1 on this forum when even less was known about B1 dosing, I started the following thread :

healthunlocked.com/cure-par...

From that thread, I generated this list :

healthunlocked.com/cure-par...

Along with this explanation of Dr. Costantini's dosing of oral HDT :

healthunlocked.com/cure-par...

Art

[Windermere1 in reply to Biscuit61]

I could list 29 improvements I’ve had over the last 3 years with b1. My success story is on utube

[Gcf51 in reply to Windermere1]

Do you have a link to the utube video

[LindaP50 in reply to Windermere1]

29 improvements?!!!!!!!

[JayPwP in reply to Windermere1]

Please put your YouTube link in your bio

[Windermere1 in reply to Windermere1]

Should have read 20 instead of 29 improvements.

I don’t know know how to add the utube link so Google

Parkinson’s b1 therapy Julie’s success story. There is also a follow up video a year on.

[Gcf51 in reply to Windermere1]

youtube.com/watch?v=psf5PpX...(Not working as expected?)

[Debgiffen]

I have had great success with high dose thiamine(HDT). See my profile for my story.

I’m 10+ years into my PD journey and only take less than 1 tab of Sinemet(along with mucuna) per day, usually only in the morning. I am fully active, easily walking or hiking 4 miles several times a week and do gardening chores for about 3-4 hours a day and am also a part-time caregiver for several members of my family.

The HDT fully eliminated my tremors after 2 years. My current complaints are Freezing of Gait (but only when medicated), slower movements in morning before meds and later in the day when all meds are out of my system. I also get pain and cramps during the night that I think has to do with low dopamine since I often take my last dose of meds around 10 AM. But generally, I feel pretty good most days.

I do take other supplements but have not found anything that helps as much as B1.

[evenshoshan in reply to Debgiffen]

Hello Debgiffen, I would like to thank you for 1) responding exactly to Biscuit61's questions, 2) sharing your HDT itinerary and results in your profile. All great information ! All the best.

[Biscuit61 in reply to Debgiffen]

Thanks so much for your thorough reply!

[Troongolfer in reply to Debgiffen]

Hi was wondering if you take sublingual b1

Or the oral dose , when you started b1 what was your dose and if you raised it to what , think I need to try again and stick to it

Thankyou

[Michel0220]

Hi Biscuit

I have been taking 2.5g of B1 daily for the last 3+ years (1.5g at 07am and 1g at 11am).

Does it work? Hard to tell (as I don’t know how I would be without it) but B1 is definitely energising. I am doing relatively well 5/7 years in this journey and I do plenty of other things to manage my symptoms (you can see my routine in my profile which I will update shortly).

Things to be aware of:

- 2.5g is my sweet spot: I develop skin rashes and sleep problems if I take more,

- I have sleep problems if I take B1 too late in the day (after noon),

- I have no side effects with my current dose/timing,

- I intend on continuing the B1 protocol but you should be aware that some neurologists (e.g. Bas Bloem) do not recommend it as they fear it might disrupt other B vitamins. I don’t think there is any proof of this but best to consult with your medical team (allowing for the fact that they will probably err on the side of caution).

As mentioned above, please visit Daphne’s FB page and read her book for more details and testimonials.

[evenshoshan in reply to Michel0220]

Hello Michel, where does one find such low dose B1 HCL please ? The smallest I have seen is 100 mg capsules. But I’ve never come across such low doses as 1.5 mg or 2.5 mg. I live in Paris France.

[JayPwP in reply to evenshoshan]

Michel takes 2.5 grams I believe

[evenshoshan in reply to JayPwP]

Hello JayPwP, yes that's what I read in the above, but my question evolves around finding out where to purchase such low-dose tablets or capsules. That's why I allowed myself to give the information that I live in Paris France. Perhaps such low doses can only be purchased in other countries ? That being said, I'm very grateful for your reply JayPwP because it just made me realise that I'm still not clear how a novice like myself should begin. With micro doses and then build up over time ? Or, commence with mega doses (e.g. 500 mg, 750 mg, 1 gram) and then scale down ? It's a bit of a dilemma, no ?

[JayPwP in reply to evenshoshan]

Hello,

2.5 grams = 2500 mg

This is a mega dose

[evenshoshan in reply to JayPwP]

Yes indeed, you have solved my dilemma, bless you.

[Michel0220 in reply to evenshoshan]

Bonjour Even. Jay is right, I take 2.5g a day, not 2.5mg. This is within the range recommended by a colleague of Pr Costantini who designed the high doses B1 protocol but sadly passed away.

[evenshoshan in reply to Michel0220]

Thank you Michel, it's clear.

[Allypally49]

Good question and I can see a lot of quotes, maybe I'm missing something or not looked at all the replies but I don't see any replies saying it worked for someone.

[septimus7 in reply to Allypally49]

I agree. B1 does nothing for me no matter what dosage.

[clarksdocs]

YES,YES, YES when go off stiff as board and hunched over. I take 37.5 MG day of good pill form B1, injections were unstable and had to balance dose, but worked in 20-30 minutes, Clark

[Lana666]

I got an impression that b1 is mostly helpful for tremor dominant people. It may help them with other symptoms too. Am I wrong? Does it work for patients whose symptoms are mostly rigidity, bradykinesia and dystonia?