B1 : Is it just me or is the B1 craze... - Parkinson's Movement

Parkinson's Movement
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B1

Is it just me or is the B1 craze diminishing? Certainly the posts on this forum are lessening. I still take 250g per day after experimenting with different dosages. It’s so hard to know if it’s making a difference. How do others feel? Are you continuing B1 therapy?

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Diagnosed

2012

My regimen:

The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...

Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.

New schedule, now I follow this regimen:

2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:

(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)

Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".

Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –

Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

Join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... ; …

Parkinson's Relief, Questions and Answers

Guide:

1. Read page, About, open links.,

2. On Files page, open B1 FAQ document.

3. On Files page, download First Appointment document, answer and submit.

4. read Announcements

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I could have posted that for you 😉

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Roy, I know this is your standard reply....which is cool, but you say it has suppressed all motor and non motor symptoms. Does that mean you no longer have symptoms of PD at all?

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90% suppressed

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Wow...that’s wonderful. I’ll keep trying to get my correct dose

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Has shaking stopped

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I continue to take twice weekly injections and, yes, I think it helps.

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IMHO You should keep videos that document the progression of the disease, especially a pull test if possible. As advised by Dr. C. Just if I quit, I feeling within two weeks non-motor symptoms such as constipation get worse.

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Yes, on it 17 mos...not without 'trials, and tribulations' though. Started at 4 gms ended up at 250, jumped back to 4 gm. where I'm improving again.

4 gms for 2 days, then 3 gms for another 2 days improved my gait, and balance by 70 %. On the evening of the 5th day after taking the same 3 gms I noted minor, persistent ,itching. After my 6th day I noted tremendous tremor, anxiety...itch/anxiousness ... are two B1 overdose

symptoms. So, I'm stopping for a few days, and will resume at 1.5 gms total. ( Dr C recommends cutting in half )My balance is still decent.

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Yep me too. I lowered so much in 8 months and then now I'm raising to full dosage and I'm improving again..

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Helps a lot. 1g/day.

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Hi!

I promised to let you know about my B1 therapy. I received the package (from UK Nature's Aid, 100 mg tablets) 2 days ago and took a conservative approach by starting with 100 mg, and I will slowly increase the dose. Any suggestions at what rate? I would also like to know whether it is necessary to split the daily dose in two, how much apart they should be, and how many hours before going to sleep should the last dose be. taken.

Thanks and best wishes!

Mojca

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Hi!

I understand you are a little reluctant to start a higher dose (I was ,too!) but 100 - 200 mg may not make a difference. Based on your size (height x weight) i would start with 500 mg in the morning (before 10pm) and 500 mg in the afternoon (before 4 pm). I started with 2x 1g and now I'm at 2x0.5 g. I saw partial results after a week and full results after a month. You can gradually increase from 2x0.1 to 2x0.5 or even 2x1g but probably will take longer to see results. I think for you the best dose would be 2x0.5 which you can gradually reach in time. You need also to drink a lot of water to eliminate it. I take it from March 2018; the single symptom left is some tremor in RH. All the others are gone. Usually I take it on empty stomach with a piece of dark chocolate. Avoid citrus juices soon before and after taking it.

Good luck!

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Thanks so much ! My original idea was also 500 mg + 500 mg daily but then I freaked out :) There is one more thing that is holding me back now - I saw on the label on the bottle that my tablets contain di-calcium phosphate as a binding agent. Since I have kidney stones this worries me a little bit. The quantity is not indicated. Maybe capsules would be more appropriate for me............I did not know that when ordering the tablets. And time flies.............

I understand you take several medications. Did you experience side effects and this is why you started with B1?

Good Luck!

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Hi! I tried Amantadine but I stopped it because it did not help. I take Sinemet 2x100 a day but this was 1 year after starting B1 hoping will completely remove my tremor. The single one helping me is B1 except is not 100% removing the tremor. B1 gave me no side effects but as I said I also drink a lot of water to help eliminate. I know vit D creates calcium deposits but I did not know about the B1.

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I have not given my complete attention to finding the right dosing level. I started it 2 g/day. I'm not sure if there were positive or negative effects. I now take 750 mg a day.

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You can stop it for 2-3 weeks and find out. If you get worse, you can always go back on it.

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For me it has made a tremendous difference, my balance , my driving, being able to sit up in bed and turn over in bed. Just recently, I stopped taking it for about three weeks and I noticed my balance was getting bed again. I restarted it at one pill of 500 mg a day and I'm just about back to the way I was before. With me thiamine HCL raises my blood pressure so that is why I stopped for a while.

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It might be everything to be said about it has been said so everyone is chasing other leads😊

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The elephant in the room is the fact that Roy takes 600mg of CL. Most people’s symptoms would have a drastic improvement with such pharmaceutical intervention surely?

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Good question, in my opinion ldopa does not improve non-motor symptoms much.

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Hi Gio, in my experience C/L made the difference. I first tried when I was without medications in 2016 for about 6 months and had no noticeable improvements, then tried again in Jan 2019 and it worked just after the first shot. I'm still working on the dosage, it's like a rollercosater :) but it does.

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My husband is still doing well. No real reason to post anything. B1 is for ever or until a cure is found and so it just becomes routine. Without Dr C to guide them, maybe less people are trying it? Roy's FB page is well followed and is interactive. I guess when people are doing well and focused on their lives, there is less need to check into this forum. I very rarely read posts now, unless a headline catches my eye..lol.

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Do you think they will ever find the cause of PD,so that they might

find a cure in years to come?

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Absolutely still trying. Seems to make a huge difference. But it's not sudden. A lot of people want instant results. It's not that way.

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I have been going to post for some time about my husband’s symptoms improving since B1, but wanted to find the correct dose first. He had also been taking 150mg CL daily (originally 300mg but reduced by using mucuna) since April ‘18, but he was still severely constipated (having once been hospitalized), had a foggy head, his balance wasn’t great, had difficulty swallowing, anxiety... the list goes on.

Dr C started him on 500mg x 2 in Jan ‘19. This was based on him being 6 ft tall, 68 kgs and 60 years old. After much experimentation, we have settled on 400mg x 2, and taking a break for one day every 10-14 days, or when my husband has an unrestful night sleeping.

Things that have vastly improved are:

No more constipation - this resolved after 3 days on B1

No more foggy head - that cleared after 6 weeks

Balance - slowly improved

Swallowing - at last review in May ‘19, the speech pathologist noted his mouth was no longer drooping on one side, swallowing and tongue functions were normal and he didn’t present like someone who has PD.

Anxiety - this has taken a good 6 months to get where he is, and there’s still room for improvement, but so much better.

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At the last appointment that my husband had with the neurologist, he was told that he was doing better than the last that he was there. In fact, "you don't even look like you have Parkinsons!" (he still has a hand tremor that comes and goes) He gave the credit to thiamine, but she tunes that out.

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You’ve just reminded me of our last appointment with the neurologist 2 months ago. My husband told him that he feels better than 6 months previously, to which he replied ‘well why are you here?’ He then made following appointment in 8 months instead of the usual 6 months. Thanks B1 !!

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You know, Brikar (and everyone else), you might just want to show her this string. How in the world is a neurologist, to whom people go only for answers, expected to mature into the proper professional ethics of continued education and learning and discipline of knowing how to critique both incoming information and one's own human limitations? If one can't do it for herself, she must shut out all incoming experience brought to her by her patients and colleagues over time, as potentially suspect which she herself lacks the tools to properly filter for the good stuff and filter out the irrelevant. Not quite professional, in my opinion and in my own professional experience. That may be ok if you live and work inside a complex research community clinical establishment, like a Mayo Clinic or major medical research medical university, but if you are like most, you are on your own until you decide to go learn more than the static of what you know.

Without proper science and research training (which practitioners rarely get, so they don't know how to extend their knowledge because they haven't the science tools to throw light on their own self-directed knowledge increase, not being able to effectively critique their own progression of self-generated hypotheses and hypotheses based on their own case experience and other inductive experiences), purely technical and engineering professionals, which is what a practitioner is, expected to extend and revise their knowledge responsibly without costing their patients inexcusable harm against their own hippocratic oath? It can't all come from waiting 10 years for an entire research community to somehow find it's way to her desk or a continuing education classroom. She has to be able to separate wheat from chaff new information on her own, as she encounters it. Otherwise there is no value from increased experience. Her 20 years experience is relegated to the same one year's experience 20 times over. That's not being a proper clinician, it's unethical.

So maybe showing her this very string might crack that hard head if hers, hopefully. A small crack. Tell her she suffers from a small dose of Dunning Kruger effect, and her oath requires her to develop her own initiative habits to do her part to take steps to minimise it.

After all, if she already thinks she knows it all and is only open to some peer review journals, if that, how is she going to ever meet her responsibility to get it right when knowledge does advance, even if its accumulation is "informal," or to put it another way, "accumulation of case experience-clinical?" Refusal would be tantamount to harming her patients, by refusing to acquire the important ability to critique oneself. To otherwise wait perhaps generations for that information to come to her through only one narrow route that could take many years due to her lack of the tools to reliably progress on her own, is virtual malpractice. This is why i regard it so important that practitioners learn early that clinical knowledge and training is not science, it is engineering, application. Practitioner training should include inculcating a healthy respect for learning how to acquire new knowledge through a set of research skills, rather than just being a passive consumer waiting to be fed by dedicated researchers. Practitioners don't need to get a research (Ph.D) degree, they just need to take a course or two in experiments and statistics and doing science. Then they can use it to see and sift new knowledge wheat from chaff as they gain experience. That's how Dr. C. did it (among several thousand actual famous "DISCOVERERS"...including a good number of Nobel laureates...of various miracles too by the way), and that's part of what I CALL being a proper clinician...eyes OPEN. How could any clinician properly deny it and yet claim to be delivering their best care to the people they've sworn an oath to?

Plus, all they have to do to spread the word is write a letter to a bunch of journals, and see it accepted into the published in the case reports and correspondence sections of those journals, and then the word is out about a possible new direction for research and practice, achieving early credit for contributing to the advance of knowledge even if it is short of scientifically conclusive...and this is how a lot of new research gets started, for it is regarded as quite legitimate in its role of stimulating new discovery. Eyes OPEN, doctor...and then say something to various colleagues and correspondents. Who knows, you might get the next Nobel from out of left field...a large number have.

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I have been taking 2000 mgs of B1 for a little more than 6 months now and it has helped me immensely. I was barely able to walk, even with a walker, had severe tremors and my body was so stiff that just getting dressed would tire me out. I started immediately on 2000 mg and saw improvements within a few days. The first improvement for me was in my balance and once I felt more stable on my feet, the tremors were greatly reduced. After that my body loosened up and I started feeling more "normal".

Now, after 6 months I am driving again, walking 2-3 miles 3 or 4 times/week, yoga 2-3x/week and gardening 2 hours every day. Exercise is key to keep my body functioning and the B1 allows me to keep moving.

I was diagnosed 4 years ago, confirmed with DaTscan, but PD medications did not work for me. At my Dec 2018 neurologist's appointment I was told my next step was DBS so I am very happy I found about high dose thiamine. It has changed my life.

So maybe some of the PWPs experiencing improvement with B1 are spending less time on this forum. For me, it is the first thing I read every morning. I am so thankful to the members who share their experiences and posts on the latest PD research.

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Debgiffen.... do you take tablets or capsules? What time of the day do you take them and how many at a time? It is nice to hear your positive remarks.

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I take 2 Vitacost brand 500 mg capsules at breakfast and 2 more at noon with food and 30 minutes before coffee or tea.

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I think my husband is being helped by B1 takes 1 gm twice a day, he has a few other supplements, Q 10, vit D, NAC vit C zinc. The NAC has defo stopped the coughing which was frequent! He can exercise, swim, aqua aerobics, walk and cycle. Gets tired and has pm sleep.

Sleeps well at night, no constipation some tremoring but not all the time. Does get fed up with pill taking but have found all easy to swallow capsules now.

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B1 still works for me. 4g a day is far too much for me & makes me much worse but I see & feel a significant improvement on 1 to 1.5g per day

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B1 continues to be beneficial for me. It permanently knocked out non motor symptoms which include voice tone an deflection plus swallowing all normal now. Helped balance and constipation.

Added Dr. Joe Dispenza meditation, this further corrected my balance and constipation and normalized my gait most of the day.

I’ve been taking Mucuna for a couple of years plus Vinpocetine. A few other powders in my smoothie and life is near normal.

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Cons10s..... what is your B1 intake? What type of mucuna you take? What are some of the other things that you take like powders? Thank you for sharing your experience.

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Kecher my B1 intake now varies between 500mg to 1000 MG daily.

Barlow’s 40% Mucuna as needed.

Other powders are Moringa, cinnamon, Turmeric, bacopa an Indian herb, and whole plant Mucuna. This assortment is all tossed together in a jar with no particular qualities and I just dump 1 to 2 tablespoons into my smoothie a couple times a week.

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I’m back on 100mg injections. I tried switching to oral but doses over 250mg upset my gut, so couldn’t get enough in me. The injections definitely help. Better balance, more energy and feel better overall.

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I have been taking B1 for years, mainly for mental exhaustion and to help sleep. But since being diagnosed with PD in 2014, I have taken 100 mg. each morning, 400 mg. with evening meal, and 100 mg (with other supplements in a sleep cocktail) before bed.

After reading many of these B1 posts, I may try upping my B1 dosage to see if it helps calm hand tremors. Any suggestions?

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Don't expect help with tremor

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Thank you for your reply to my post about B1 targetting tremors. Do you know any thing(s) that do help with PD tremors?

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I recently turned to medical marijuana. Last night my tremor was strong. After taking 25mg THC I was able to reduce tremor and go to sleep.

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Thank you, Roy! I have heard of people using that, and others avoiding THC and using CBD oil. Have you tried that for tremors?

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I have tried cbd.

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Thank you. Did it help your tremors? And were there side effects?

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no, no

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Thank you Roy!

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I think most of us have said about everything we have to say regarding B1. I began taking B1 within weeks of being diagnosed in May of 2018 and I still take 1.5 grams daily.

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Folks, I had drooling, shuffling, falling. soft voice, lack of clarity, constipation, right hand tremor significant enough to make my arm tired every day, and other markers that confirmed my PD. I had a DATScan that showed the deterioration. \

I found the good Dr. and read the testimonies and decided to start the B1 protocol. At 74, 220 lbs, and sedentary, I decided to jump in the deep end. Everything cleared up or went away. I still take 8 500 milligram capsules per day every morning. All markers have stayed away except the right hand tremor has returned and I will try to adjust the B1 to respond. If I go to my grave and this is all there is, I will think myself fortunate.

Thank God for B1. However, with the good Dr. out of the picture now we have no "source" to steady ourselves upon. I corresponded with him 3 times in Italy by e-mail and was answered each time within 3 hours. His advice was always spot on and gave me confidence to go forward. The last several years have been almost a total reprieve for my life.

The B1 community needs a new Dr. to assume the mantle of "Chief consultant". Roy is doing a good job with his face book group in keeping the B1 story alive but we need physicians to take up the mantle.

Larry (stfarm)

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Larry,

Many links that I compiled from information that came from Dr. Costantini and may be useful to others looking into HDT/B-1 can be found at the following link :

healthunlocked.com/parkinso...

Most of the information is still relevant and will help new comers and veterans to find answers to many of their HDT/B-1 questions quickly!

Art

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You're back Art. Nice

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My husband naturopath I s giving us the B1 in injection

I have to give my husband 2 needle of B1 per day

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gigi9,

Wow, two injections per day!?!?!

That would get old really fast!

In all the information that Dr. Costantini has bestowed upon this forum, I can not ever remember him suggesting more than "three injections per week". Two a day would drive me crazy and I would think that compliance would eventually become a real problem!

Art

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