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
B1 Therapy: hi sorry if this a repeat but... - Cure Parkinson's
B1 Therapy
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Biscuit61
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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... .
Her website: b1parkinsons.org/
Informal survey: healthunlocked.com/cure-par...
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.
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.
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...
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?
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
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.
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.
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
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.
I think niacin made my husband worse. We tried it once and symptoms worsened. But there is some in his Hardys multinutrients.
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...
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..
Hello Daphne, thank you for your quick and honest reply. You're totally correct, there. is the theory (how it should) and then there is the practice (how it actually does). Bless you for your convictions and dedication to helping us. Oh, and on the sideline, thanks for not directing me to the FaceBook group because, in spite of having worked most of my life in computers, I still haven't figured out how that FB application works ! I never succeeded in getting past the first page... Whereas the HU application is a dream (and so are the members).
You can take B1 quite safely on an empty stomach
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?
If you use one of the various ‘sublingual’ tablets then you would just have to leave it under your tongue for 30 minutes.
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.
thank you! i've taken my carb/levo sub-lingual to no ill effects, should be ok
I stand corrected : 30 minutes under the tongue. My only problem is that, being retired, if I don't respond immediately to my wife there can be dire consequences...😀
I stand corrected : 30 minutes under the tongue. My only problem is that, being retired, if I don't respond immediately to my wife there can be dire consequences...😀
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?
…definitely take a break (1-2 weeks) and reduce the dose. His are classic reactions to B1 over time. I would suggest a small reduction…. Perhaps 500 mg with a couple of days (Monday and Friday?) 750 mg. He can only try. One of the biggest mistakes people make with this therapy is to assume you need more B1 when you start to have more symptoms. He should find that the worsened symptoms start to improve during the break. Stay on the break until this has happened but restart B1 as soon as fatigue returns. I hope this helps. Good luck
Thanks Daphne. At the moment he alternates 1 and 2 x the 500 to average 750, I should have said. I will try giving him a break.
500 mg on 5 days and 1000 mg on 2 days (Monday and Friday)? That would be a small reduction.
That would only be one or 2 capsules less a week. Is that enough of a reduction?
But I should give him 2 weeks off first?
My rough thinking is… if you overdose quickly, then reduce by a bigger amount. If you overdose after a longer time, then reduce by a smaller amount. If you prefer he could try 5 days on 500 and 2 days on 1000 mg but I wouldn’t reduce any more.
Yes 1-2 weeks break first to allow his B1 levels to fall.
I was looking back over a past post on b1 from years ago. It said Dr Constantini recommended actomagnesio. I can’t seem to see that brand now. Do you know what form of magnesium that was?
Dr C gave his patients a slow release magnesium twice a week when they came to the clinic for their B1 injection. I believe it was just convenient for him to do this. We recommend a ‘normal’ acting magnesium taken daily, and we say any type of magnesium except oxide. If you join our Facebook page you can have access to a lot of information about magnesium and other related subjects.
Just for information...
Brussels sprouts is listed in the list of B1 Depleters.
B1 Depleters list
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.
There's currently 46 success stories posted on Dap's Facebook page (not everybody will post theirs). She currently has over 11,500 members.
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
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
I could list 29 improvements I’ve had over the last 3 years with b1. My success story is on utube
Do you have a link to the utube video
29 improvements?!!!!!!!
Please put your YouTube link in your bio
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.
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.
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.
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
I take Vitacost brand 500 mg HCL orally. I started with 500 mgs the 1st day, 1000 mgs the 2nd day, then 2000 mgs the 3rd day and took that dose for several years. Now I take between 500 and 1000 mgs per day but I often skip days.
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.
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.
Michel takes 2.5 grams I believe
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 ?
Hello,
2.5 grams = 2500 mg
This is a mega dose
Yes indeed, you have solved my dilemma, bless you.
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.
Thank you Michel, it's clear.
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.
I agree. B1 does nothing for me no matter what dosage.
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
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?
I'm testing at the moment Is only 20 days no positive response yet but I still have hope
Keep updating
hi, i have taken 3oo mg SUBLINGUAL B1 from superior source for over 10 months now and am very happy with it. one must add b complex and magnesium I take magnesium glycinate during the day and magnesium L-Threonate at bedtime for sleep and because it crosses the blood brain barrier,( i increased the B1 very slowly at first) good luck , stick with it for a while but definitively use the sublingual as most of our guts are not in good shape and swollowing the oral kind of B1 gives inconsistent results. i can now dance and hike up to 10 miles,,,,
I like the answer someone got on the Facebook Group:
We can only make hypotheses.
We would need first to understand how high-dose thiamine works. As there are only hypotheses about it, different mechanisms have been proposed.
One theory is that high doses of b1 could stimulate and reactivate cellular metabolism (e.g. key enzymatic reactions in glucose and energy metabolism), overcoming a possible metabolic block caused by the effects of Parkinson's. This block would eventually prevent the cell from producing the energy needed for its metabolic processes. Together with a reduction in thiamine-dependent antioxidant and anti-inflammatory functions and in other thiamine-related effects, this would gradually lead to neuronal cell death and eventually Parkinson's symptoms.
Some of the mechanisms suggested include: a) an inability to transport thiamine into the neuronal cell or where it is needed inside the cell (mitochondria), b) an inability to utilize thiamine, c) enzymatic abnormalities - all of which would clinically mimic thiamine deficiency, as thiamine is available but the cell would be unable to use it. High-dose thiamine would overcome these problems. Thiamine effects on dopamine release or better utilization of the exogenous levodopa have also been proposed. Mechanisms independent of thiamine coenzyme function, microglia activation, effects on intestinal microbiota, etc. and processes involved in the production of other key neurotransmitters (acetylcholine, glutamate or GABA) may also play a role.
The above suggested mechanisms would help explain why thiamine effects would go beyond "energy production" and improve both motor and non-motor symptoms - so involving different neurotransmitters.
YOUR QUESTION - Now, let's go back to your question: "Why does b1 overdose cause PD symptoms to return?" One could postulate that, if the thiamine dose administered is excessive for a particular individual, this "tsunami" of thiamine could actually overstimulate the cell metabolism and become too much for the cell to handle. As a result, the overstimulation could first cause "too much energy" related symptoms (jittery feeling, "too much coffee" feeling, tremors, anxiety, sleeping problems etc.) and then cause a block to the cellular metabolic processes, similar to the one which is thought to cause Parkinson's symptoms. In fact, from the description of b1 overdose symptoms, we have seen that thiamine overdose can clinically manifest with any of Parkinson's symptoms. This would suggest that the mechanism should be similar in both Parkinson's and b1 overdose. Or, at least, that's one possible explanation.
CONCLUSION - As b1 overdose symptoms can be the same as Parkinson's symptoms, the mechanism causing them should be similar, like an overstimulation and then block of cellular metabolic processes.
To which I replied:
Makes you wonder:
If a undiagnosed person would experience PD symptoms if they were to take a high dose of B1.
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