week 1, I began with one 100 mg B 1 taken sublingually and followed that for 2 doses of 50mg, after receiving recommendations that 100mg may be too much. Noticed no changes. Began week 2 this morning and will take 3 doses at 100mg and see how it goes.
B 1 therapy for Parkinson’s : week 1, I... - Cure Parkinson's
B 1 therapy for Parkinson’s
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Lulover
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It takes 4 months for most benefits to become apparent
thanks for your response. Is four months based on your experience? Have other people reported four months? Curious.
My husband responded in 3 1/2 weeks, both times we started him on B1, but we changed from sl to tablets. My whole post is down here somewhere.
I've been on it for 6 months, varying quantities of sublingual up to 100gms a day, no side effects, no effects at all I'm sorry to say
Are you taking the sublingual tablets per instructions in the book?
I am. The first week I Took 100 mg and then 50 and then 50. this week I will take 100 mg 3 times sublingual, as recommended in the book. Thanks for the suggestions.
good evening ma'am, i am having trouble figuring out how to start taking the sub lingual B1 i am really trying to get some relief can you help me figure it out or direct me to a chart that you recommend. I have your book but cannot seem to find the instructions on how to start. thank you for your assistance in advance🙏
The instructions for taking sublingual tablets is in chapter 3. …After a glass of water, place the tablet under your tongue and let it dissolve, trying not to swallow the saliva for 30 minutes
Daphne, may I please ask : 50mg 3xweek is too much for me,(SL) so should I try 50mg 2xweek, or 25mg 3xweek? It's difficult to accurately cut the pills, so any suggestions would be appreciated.
I would base my reply on how long you were on the dose before you felt overdosed. If it was within a week or three I’d halve the dose - 25 mg x3/week. If it was after a month or two I would try 50 mg x2/week next.
Grower, try the tablets or the gummies. We tried sl for 9 months, never got it stabilized. He’s been on tablets for just about 5 weeks, gait better, bradykinesia much better, arm swing back, wrist movement back after 4 years. According to Dap1948, how long the sl is in your mouth affects how much you get of the B1. We could NEVER control that time. But the tabs go down the throat and done. He also likes the gummies.if you can’t make the sl work for you, try a different formulation. B1 works. If the sl just doesn’t work for you, for whatever reason, try one of the others. Paul takes 2000mg. Divided dose. He’s 6 ft and weights about 165, if that helps. He is 4 years since dx.
May I ask which tablets he takes?
we have tried three in the last four or so weeks. Kindnature gummies were first. He has a problem with swallowing so this was the easiest for him…but they are very expensive and it takes 8 a day for 2000mg. Next we tried Solgar. These are huge but can be ground in my spice grinder and put in applesauce or something. They work, they are cheaper, but they are work for me. We went back to the gummies. Then I bought Dr Clark Store. These are bigger than they looked on line. They are capsules. Back to the applesauce but at least I don’t have to grind them. Right this minute we are back on the gummies. All three work for him. And I’ll finish all the bottles we bought. All three came from Amazon. I have tried our local health food places, but no go. I’m not sure which we will end up with. It is easier for me to just put his supplements in a cup and let him take them on his own. It is also better for him to be independent as much as possible, but the gummies are ridiculously expensive.
It was several months before friends pointed out to me that I was moving better!
Have you joined our Facebook group for lots of support…
m.facebook.com/groups/parki...
Daphne. Thank you for all u do! Can u tell me why I can not open files on the FB group? When I click on the file for the HCL protocol..it says it is downloading but where will it show up? Can't find it on FB or in my Anroid file manager under downloads. Maybe it is not compatable with Android phones? Any help is much appreciated.
I’m afraid I’m not the technical person in the group. I suggest you post your question on the Facebook group page and I’m sure it will be answered by many who understand these things, if not by my fellow administrator who definitely does!
Will do. Thank you Daphne!
Dap, can you tell me if taking 2000mg of thiamine hcl is equal to 2000 mg of thiamine mononitrate? I can’t seem to find that information anywhere.
yes it should be. I’ve just changed from sublingual B1 mono nitrate to sublingual hydrochloride. However, it is not advisable to take mononitrate orally as it isn’t so water-soluble as hydrochloride and there’s a very slim chance that mononitrate may have a negative effect on your kidneys, such as causing kidney stones if you are susceptible.
Thank you for your response. I heard back from the company. MN and HCL are 91.9 and 88.7% thiamine respectively. Close enough. I knew about the possibility of kidney stones in susceptible people. I have decided to try the HCL powder. I’ll measure it out into empty pill bottles and he can mix it with water or some other drink. I keep trying to buy tablets, but when they get here they are too big for him to swallow. The PD has affected his ability to chew, swallow, basically eat. I hope the thiamine helps that issue. Well, he can open his mouth all the way again, so we can be hopeful. It is definitely helping the other issues too.. Thanks again.
The swallowing issue is why many people prefer sublingual tablets.
as I posted before, he swallows involuntarily. Sometimes after a few seconds, sometimes minutes. No control. Can’t tell what was essentially sublingual (microlingual) and what percentage of dose was oral. It just didn’t work for him.
Ah sorry. I missed your earlier post. It would be difficult for him to cope with so much saliva with his involuntary swallowing.
you are so right, but the good thing is that B12 is working for him. Maybe it will reach the point that it resolves these issues too. I hope so. Thanks again, Dap1948
You may be taking too much, we tried many doses to much is worse. We have good positive results in 1/2 hour in our case. Look up Dr from India started B1 for Parkinson's. Daily dose of animal pack we cut in haft to one pack day not two packs the results last two or three Days, you'll not stiff you're flexible in our case., good 👍 luck
Yes, I have read that. We are still looking. Perhaps a powder would be something he can swallow mixed in applesauce or even water.
Please link to the Dr. from India
My husband (and I ) failed on the sl B 1 but the pills are a total success. When he took the sublingual, we never really knew exactly how much he was getting. It varies based on how long it is in your mouth. Sometimes he swallows involuntarily. And because Doctor Constantini did not use that formulation, we never knew where to start. We made another mistake also. If he had a really bad day, we thought he was getting too much B1 and decreased the dose. But PD causes bad days from time to time. Now, I wouldn’t change the dose unless the bad symptom started and remained for several days.
he was scheduled for cataract surgery, so we stopped the B1 for a while. Actually that didn’t change anything as at the time he was receiving no visible benefit. After he healed from the cataract surgery we restarted B1 therapy. This time with pills. When he swallows the pills, I know what he took exactly. We started at 2000 mg in divided doses, breakfast and lunch. We also started magnesium and vitamin B complex with a lower amount of B6.
After three weeks, the bradykinesia is 80% better. His gait has improved. His arm swing is back. And last night he got movement back in his wrist that he has not had for four years. We are very pleased to say the least. I know that B 1 works for him but I could never make the sublingual work consistently even though it is cheaper and easier and I wanted it to. Pills are a pain, but it is worth it. We never found the “sweet spot”. And we became so frustrated that after 9 months, we stopped the B1 for a while. We wasted all that time. And if you don’t like pills, you can chew gummies. They are pleasant and they work too.
What specific B1 pills is your husband using ? Could you provide a link please?
Art
we bought Solgar first, but they are enormous. I had to grind them and put them in something for him to swallow. Do not buy Solgar. Next we bought Kindnature gummies. He likes them. PD has affected his swallowing, so we have to be careful. It takes 8 a day to make 2000mg, and that is expensive. The last we purchased was Dr. Clark Store. These are capsules, but still to big for him, but they can be opened. Right this minute, he is taking the gummies, but I have ground the solgar’s and will use them and I will open the Dr. Clark Store and use them again. All are available on Amazon. But it is easier for me to just hand him gummies than to grind Solgars or open capsules, but all three work for him. But the gummies are sooo expensive.
Many forum members found the 500 mg Vitacost capsules much much smaller than the Solgar tabs, easy to swallow, reasonably priced with free shipping. Has he tried them yet? Here is a link to them :
vitacost.com/vitacost-vitam...
Art
We will try them, thanks. I don’t know how to make links
How to copy and share web links :
youtu.be/egEPPxiTt4k?si=K7v...
Not so fast on the Vitacost product. It turns out that the gummies your husband is using are made with Thiamine Mononitrate (TM). This is the same type of thiamine that Daphne uses in the dissolvable tablets. The Vitacost product is made with Thiamine Hydrochloride (TH). This is the same type of thiamine that Dr. Costantini used effectively in his patients. I don't know if dosing is exactly the same for these two water soluble forms of thiamine, but I think it may be as Daphne has reported that a member of the FB group tried powdered TH under the tongue and got similar results as the TM.
Also, the gummies your husband is using have quite a few other ingredients which is likely not a problem if you are only taking one a day, but may be a problem long term if you are taking 8 per day, as he is doing. Attached is a list of the ingredients in his gummies. As you can see from the list, two gummies contains 3 grams of sugar. That will be multiplied 8 times since he is taking 4000 mg per day for a total of 24 grams of sugar per day that he would not normally be taking.
Two gummies contains 4 grams of carbs or 32 grams of carbs per day at his current dose, again above and beyond his normal carb intake.
Perhaps these are okay at just one gummy per day, but possibly problematic at 8 per day. Looking into the Vitacost product might be worth the effort.
Art
Gummy Ingredients
he takes 4 servings per day for 2000 mg thiamine, 12 sugar and 16 carbs. This is not a problem for him. But your note did concern me concerning the equivalency of HCL and MN. Their molar masses are almost the same ( 337 v 327) and going by packaging and everything I read, they seem to be used interchangeably … same doses…the difference for the microlingual dose and the oral dose should be the direct access into the blood stream. The same as the difference between IM and oral which Constantini said was a factor of 14, if I remember correctly. Nonetheless, tomorrow I’ll call the company and make sure that 2000 mg of HCL = 2000mg mg of the mononitrate. When I substituted the 2000mg of ground Solar (HCL) there seemed to be no difference. None the less, I will call. Thanks.
and the answer is that MN is 91% thiamine and HCL Is 88% thiamine, so they are pretty much equivalent. Their properties are different though. We will keep looking for a form of HCL that will work for him.
We buy powder to make it cost effective
will check it out. The gummies are about $80 a month…ridiculous…but on the other hand..he can swallow them and they do help.. we are still looking.
I ordered some HCL powder. Yay
I feel a major issue for PwP is gut health/absorbtion such that B1 taken orally can be a lottery. Conversely SL is more precise provided the patient doesn't swallow too soon. A problem with sublingual, is my tablets are 100 mg - equal to about 100 X RDA but the manufacturer was not willing to make smaller tablets.
The single most important takeaway with B1 therapy is that it works. Persevere and find out what works for you.
in my husband we have no problem with what he swallows, but the sl’s are a crap shoot. They can remain in his mouth for 30 sec or 5 minutes. He can’t seem to control it. The PD affects his swallowing (he swallows when he has no intention to) and eating. 100mg sl is a lot, but 100mg orally is nothing. And he was getting any combination his swallowing mechanism chose to inflict on him. But the gummies and/or the pills work fine.
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