Edit 01/29/2024. Website has been discontinued. Instead, I recommend you read Daphne Bryan’s book: Parkinson's and the B1 Therapy a.co/d/eIzZhwk
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I started on high dose thiamine about 15 months ago and it made such a difference in my PD symptoms that family and friends who saw the changes wanted more information on what I was taking. At first I would send an email full of links, articles and videos but the emails got quite lengthy and I'm sure a few recipient's eyes glazed over with so much information. So, in order to make sharing easier, I created a website to provide the basic information for a PWP to research the therapy.
Website is B14PD.com. No ads or affiliate links, just providing information.
Comments or suggestions welcome. Feel free to share.
Written by
Debgiffen
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This is a great website. Well done. A question. I couldn’t find any reference to 'taking a break'. I believe Dr C recommended taking a break from time to time. You talk about halving the dose when you feel symptoms of overdose, but is that what is recommended if you feel symptoms of overdose after taking a dose which worked for months or is it what is recommended during the initial period while finding the right dose? I ask because I am on a much reduced dose to my initial dose in 2017 and Now, yet again, I feel overdosed and am experimenting with a further reduction. Have others felt the need to slowly reduce over time? (Forgive me if you cover this and i didn’t find it!).
Well done on the site though. It’s another place to direct new people.
I did not put anything on the website about long term use because my intent was just to make PWP aware of the therapy and how to get started. That said, there does seem to be a lot of questions about how and when to take a break so I could add something but the problem is that I don't know the answer. Discussions on this topic are inconclusive. And I myself have been experimenting with taking HDT breaks. I have stopped thiamine completely for 2 weeks without any bad effects and am currently taking 1000 mgs/day (down from 2000). Some days I skip it all together, other days I take it in combination with a b complex. I take a lot of supplements and with the added stress of the pandemic, it's hard to notice any subtle changes.
If anyone has a good answer for the question about when and how to take a break from HDT, I would be happy to add it to the site.
Well I’m not the only one who is confused then. You dream when you’ve found the initial 'ideal' dose that that's sorted then. Then your symptoms increase again. You resist the temptation to increase B1 and decide the symptoms might be overdose symptoms. But how long to break for and what dosage to resume at?! I fear that there is no simple answer, not a one size fits all solution. Even if a certain length of break and reduction works for you one time, it might not work another! My hope is that I get cleverer at spotting the early overdose symptoms. I keep a B1 diary and pour over it for patterns and answers but haven’t managed to find any clear solution. The good news is that you can seem to take quite a long break without too much problem. I had a six month break in 2018 and didn’t revert to my pre-B1 self.
"9. If I miss a dose or a day of thiamine, will my PD symptoms come right back?
A: No. If a patients misses one day or so of thiamine treatment there will not be any consequence. Once the patient is stabilized, after three or six months, we usually suggest short breaks of one to two weeks without thiamine. Some patients suspended the high dose thiamine treatment and the symptoms of the disease came back after two-three months; thus, these patients restarted the high dose thiamine therapy as before and, like before, the symptoms disappeared again."
You did a great job on your site. Nice and succinct.
However, it may be a good idea to link to the FAQ under this site for additional detail.
In addition, often not discussed but a sure sign of overdose symptom is back/leg pain or overall inflammation.
Thanks. Question 9 is available from the FAQs page, click on the 'view as a PDF' link. That provides a PDF version of the 55 questions from this forum. I figured a PDF is more useful to new users as they can easily download and print the questions.
I had forgotten about the back/leg pain connection but just noticed it on question 55 in the PDF. Thanks.
My experience with HDT is very similar to yours. I started at 4 grams about two years ago and did very well with that. I have stopped altogether for about two months and the symptoms came back pretty rough. Right now I take 2 grams a day, but skip days in between and that’s working well for me. I spoke to Dr C one time when I was going on vacation to get feedback on whether I could stop taking B1 safely for two weeks and he asked me how long I’d been on it, I think it was about 10 months, to which he replied that my system was now good with B1 so that I can stop for up to three weeks and pick back up with no regression. I’ll try to see if I still have the email correspondence and pass it on. Thank you for the website.
Ernie, how long were you on b1 when you stopped for 2 months? And just curious why you decided to take that long a break. I would like to try a longer break from b1 and other supplements but am nervous I would lose all I have gained.
That's good to know that long breaks are possible. I was feeling fine after 2 weeks but got nervous that I would revert to my pre-B1 and that is a place I never want to go to again.
Here’s the reply from Dr. C when I asked about stopping for two weeks while on vacation. Dated November 10, 2018.
Dear Ernie,
you can suspend the thiamine, you'll be fine as before. The effect lasts for as long as three months or more. When you get home, you'll get your treatment back.
Many thanks for the website, it's very nicely set up, simple and direct, all we need, congratulations. Being a 5 year/diag - non tremour - mostly PIGD, I'm new to the HDT idea, but certainly exited with what I have read so far. BTW do we know how dear Dr C is doing heath wise? All my best wishes to him !
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