After just one day and over a hundred responses, I counted 49 Yes (helps) and just 9 No’s (hoax).
Thank you for all your participation! I think this totally unscientific survey will help many of us and I am grateful for your many responses.
For those critical of my survey, no problem, I’m happy! I also started taking B1 again!
Would those of you that b1 has helped, would you mind responding with the dosage and time of day. Just a short answer please. That could be helpful to many of us.
Again thank you, thank you. Together we can make a difference. The c/l I take was invented 50 years ago . That’s how much the Pharmaceuticals have helped!!!!!
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DavDav
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Two grams, capsules in the a.m. and again in late afternoon or earlier. Four grams daily.
Please park_bear could you tell us how you got to this dosage? I had thought taking it in the afternoon could interfere with sleeping. Your answer is very interesting as we’re trying to work out the optimal dosage here and anything different could be worth trying.
Regarding the afternoon dosage it is how much I can tolerate without interfering with sleep. If I take too much I feel energized when I am trying to sleep and do not get fully rested. For a while I could only tolerate 500 mg before bed but my tolerance seems to have changed. Actually, if I get around to taking it in the early afternoon I will take 1.5 g. Sometimes I do not get around to it until bedtime so then I play safe with just a 1 g dosage.
So I have had to experiment and you probably will too.
Thank you park_bear, I appreciate your reply. So many varied responses on here. We’ll continue experimenting, we’re nearly there! There have been SO many improvements so far (around 75-80%) and maybe we’re expecting too much by wanting 100% 🙂
2000mg total. 500 at breakfast, 500 at lunch, plus 1g dissolved in bottle of water with mannitol, b2, b3, d-ribose and unsweetened black currant juice sipped all day. But still trying to determine ultimate rate.
Per 1 anno mi sono curata soltanto con 3 Grammi di tiamina al giorno:1,5 la mattina e 1,5 a pranzo. Sintomi dimezzati. In seguito dietro consiglio del dottor Costantini ho aggiunto 1 capsula e mezzo di carbidoba/levodopa sinemet
For 1 year I only treated myself with 3 grams of thiamine per day:1.5 in the morning and 1.5 at lunch. Symptoms halved. Following Dr Costantini's advice, I added 1.5 capsules of carbidoba/levodopa sinemet.
I take one 100mg SUBLINGUAL tablet every other day. You put it under the tongue and it enters the bloodstream. It doesn’t go through the digestion so it doesn’t need to be hcl and you don’t need as much. It works for me!
I take superior source 100mg tablets from... healthymonthly.co.uk
In 2017 I took one tablet each day. Now I take it four days a week. They taste bitter but you get used to them! You must leave them under the tongue until they've dissolved. They mustn't be washed down through digestion!
Microlingual B1 from 'superior source' 100mg tablets. From healthmonthly.co.uk. You must keep them under the tongue until they've dissolved. They taste bitter but you get used to them. I tried the B1 hcl capsules and powder but couldn't find the correct dose. I find the sublingual much easier! In 2017 I took one every day. Now I take four a week.
No it doesn't necessarily mean that I'm on a low dose. I take something that goes straight into the bloodstream not through the digestion, so it's half way between an injection and your solgar hcl.
(tried 250mg capsules-dissolve quicker & more efficiently but perversely are not as effective, maybe they are voided via the urinary tract quicker, or just a quirk of my body-system)
Thank you for your original post DavDav, simple is good, often folk can't see the wood for the trees.
Hi DavDav, my Wife has been taking 2mg HDT injection once a week for about 9 months without any improvement, about 3 weeks we dropped the dosage to 1mg in the recommendation of Connie in Buffalo NY, her balance hasn’t improved but her walking has, she is walking faster and her legs seem stronger, maybe her balance will improve too. Thanks Connie
Hi tudorwood I’m glad your wife is feeling better except for her balance issues but as I mentioned in my message to you I am not a Dr, have not tried injections, and the post I messaged you about you mentioned she was taking 200mg injections not 2mg which is quite different. As I mentioned in my message to you in my communication with Dr C he always told me if symptoms worsened to take a break and start on a lower dose. I mentioned checking out Roy’s Facebook page or searching on HU. My hope was to point you in the right direction so you could help your wife. Also although I may try again I have been up and down the oral route and am currently taking a break from B1 as I said in my message. Again I’m no expert there is I would think a big difference between 2 mg injections and 200mg injections. Someone here could inform you better!😊 Connie
Pressed send again too soon 😳 Most importantly your wife is better and I’m so happy for you both!! I’m sure by searching on this site and Roy’s Facebook page you will meet many members who do take injectable HDT and then may be able to compare notes and fine tune your wife’s dosage for even better results!! I enjoyed our messaging regarding Ireland it’s sounds like such a beautiful place, being Irish I hope to get there one day. Hope you and your wife have continued success with B1 and God bless you both!!😊☘️
In my 3rd month of B1 regimen. Started at 500mg/day, then 250mg on suspicion of overdose, now 350mg and encouraged to increase cautiously to 450mg after reading above responses in the 1 to 4g range. Planning to monitor my B1 level with blood test [is one or more of you doing it?]. No other medication; diagnosed 15 months ago with mild symptoms.
I take 300 mg before breakfast and 100 or 200mg before lunch. I am still tweaking my dosage. I was taking 500mg just in the morning and it felt like too much.
I take 1gram at breakfast then every other day I take a 500mg mid afternoon. I tried reducing to 500mg a day but my wife noticed that I had reduced as my mood dropped & my face started to mask again
I’m still tweaking, too. I started with 500 mg in the morning and again around lunch; tremors got worse. Now I take 200 mg at both times. I don’t seem to be as sleepy after C/L and my pain and anxiety have diminished some. Generally, I feel better.
I take a low dose as it makes symptoms worse on large dose but it is still effective. As Dr C said after my second video 'I lost my parkinsonism face'. I cut open a 500 mg capsule divide into 4 portions and dissolve it on my tongue. Odd maybe but i bought large capsules and on my tongue it saves getting into digestive system.
Solgar HCL - started off slowly with 100mg breakfast and lunch and progressed to 300mg at breakfast and lunch. Still increasing by 100mg twice daily each week. I’m interested to hear that some people take a lower dose in the afternoon. Every PWP is different but so good to read the responses of others’ experiences.
100 mg of B1 in the morning and afternoon. I started at 1000 mg per Dr. C and worked my way down. It’s been 6 months and my balance is better, smell returned, arm swing and walking is better.
But I haven't given up . Still hoping to find an effective dose. Right now I am taking 1gm a.m., 0.5 gm p.m. My main symptom is tremors, which B1 does not usually help. My non-motor symptoms are still mild. So how can I tell it is not helping? By the continuing progression.
I started taking B1 last year and did not find any benefit. Since then I have started to take small dose of Madopar (3 x 62.5 a day) and also started B1 again 3 months ago. 4 x 500m was too much and I have settled on 2 x 500mg before breakfast and 1 x 500mg Solgar before lunch. The B1 has made a difference and I am better in fine motor skills, sleeping and mood. My UPDRS score (I do my own on a spreadsheet) is back to where I was 3 years ago, one year after DX. This supports the idea that B1 works better in conjunction with some dopamine. However, exercise is most likely still my best medicine and it includes walking for 30 minutes each day and 50 minutes at the gym three times a week. I should do more!
I produced my own spreadsheet using the standard questions and adding a summary page with comparisons to previous assessments. Happy to share with private users.
What I have noticed is that many people who reported very good to excellent results in the original post where forum members using HDT were discussing their results using HDT/ B-1, have not come back to update or rarely do so. I guess when it works well, some people do not feel the need to come back and give updates.
Part of the problem is that that thread now has 790 replies in it and it is slow to load because of that number of posts. Here is a link to that post. It seems that some of the people who have posted their results in this thread are newer and their names do not appear in the original post , so there are still forum members testing or using B-1 beyond that post.
Yes, and then there are people like me who are still trying to get their B1 rhythm, and don't want to report anything till they get it right. Started at 4 gms 16 mos ago...down to 150-250mg.
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