Once I was convinced that thiamine would be relatively safe for me to try, I decided to follow the basic protocol used in the fibromyalgia study. Those patients started at 600 mg/day and increased the dosage by 300 mg every three days until they reached a therapeutic dose. (It can take up to 48 hours to experience the effects from an increased dose of thiamine.)
The first patient reported dramatic improvement at 600 mg. The other two did not experience any changes until they reached a dose of 1500 mg. The final therapeutic dose for both was 1800 mg, at which time they reported an abrupt improvement.
Since I couldn't find thiamine in 300 mg tablets, I worked in 500 mg increments. Within 24 hours of taking my first 1500 mg dose, I noticed a huge increase in my energy level. I then tried taking 2000 mg to see if it made even more of a difference, but I actually felt a little worse, so I dropped back to 1500 mg/day and have remained there ever since.
I can honestly say that my energy level now is much, much better than it has been in 24 years!
By the third day after starting the 1500 mg dose, I almost bounced from one activity to another and kept thinking, “I feel so good! What can I do next?”
While I can't say I've also experienced the same reduction in pain as the study participants, I'm hopeful that will come in time. But even if it doesn't, I'm thrilled with my increased energy! It's a lot easier to cope with pain when you have the energy to move around and be more active."
Hi. The thiamin therapy has my attention. Are you taking Azilect by any chance? I am and want to make sure no contraindication. Think should be OK. Good luck and keep us posted
I did start slow and build up, but only because i was unsure about having a reaction. 30 days in at 4g and no reactions. Feeling mostly better but hoping to ameliorate my bradykinesia. That's holding me back the most at this point.
I'm interested too but I worry about long term side effects of taking anything with such a high dosage. Do any of the studies mention long term effects?
Thanks so much, Roy! The testimony account (not yours) created contradictions. Thanks for the clarification. I wish you continued improvement! Keep us informed!
Hi Roy prop. I bought some vit b1 500 msg from Source naturals. However when I looked on the back it said thiamin - b1 500 msg but no mention of Hcl. Does that matter? My husband also takes azilect. Is that ok? Thanks deb
Yes it matters. Source Naturals does not identify the type of thiamine in their offer. I searched and found reference:
The energy potential of these compounds depends on the number of phosphate molecules they contain; thiamin triphosphate has high energy potential, while thiamin diphosphate has less, and thiamin monophosphate has the least. Each of these forms serves different functions in the body. Unphosphylated (a.k.a. "free") thiamin does not appear to be biologically active. Supplemental thiamin (as found in multi-vitamin and B-complex formulas) is usually in the form of thiamin salts such as thiamin hydrochloride or thiamine mononitrate.
Lest there be any misunderstanding, Thiamine HCL, The version recommended by Dr. Constantini, contains no phosphate:
"Thiamine Hydrochloride is the hydrochloride salt form of thiamine, a vitamin essential for aerobic metabolism, cell growth, transmission of nerve impulses and acetylcholine synthesis. Upon hydrolysis, thiamine hydrochloride is phosphorylated by thiamine diphosphokinase to form active thiamine pyrophosphate (TPP), also known as cocarboxylase. TPP is a coenzyme for many enzymatic activities involving fatty acid, amino acid and carbohydrate metabolism."
Sorry for my late, but unfortunately I can not speak English well, so it's Dr Erika Trevi who is writing these emails to you.
We don't use benfothiamine because previous trials report it does not enter in the neural cells, that's why it is not used for the diseases which don't affect the Central Nervous System (Bettendorff L.).We administer thiamine cloridrate. For your situation 1 intramuscular injection twice a week (or an oral dose of 4 grams each day, two tablets in the morning and two at lunch time) should bring to the complete regression of the symptoms in 1 or 2 months. As an attached link, you'll find a paper with the possible thiamine side effects.
In another email, I'll send you all my published studies.
Just wanting to clarify if it’s still ok to use allithiame, or best to use Thiamine HCl?
Sorry for the repeat question which I think you’ve addressed before. I thought Allithiamine was better than benfotiamine, and lower doses needed than thiamine HCl.
I think it would be helpful if you put quotation marks around the text in your post. Not everyone reads the links and it might seem that it is your "testimony."
Sue I am not sure how to approach this. Could a higher energy level disrupt our sleep? Personally I have no fatigue and very little pain. My energy level is what I consider as being normal. I try to exercise and walk an hour a day. Why change a natural pattern. Not sure about this. Maybe it can be good for some people, but I do not think everyone needs this. More study needed for me.
I'm watching and waiting for a while to see other's results. So far, the results sound promising but I am cautious also-as for higher energy level disrupting sleep, no way to know until you try.
Roy I ordered solgar thiamine 500mg from iherb. I haven't received it yet. Checking back on the Internet the enlarged picture of the bottle doesn't say hcl. Do you know if it's good just because it's solgar? If not where can I get the right thiamine? I'm desperate to get going as I'm feeling fed up with this PD
Thank you so much Greenday. You've made me feel so much better! Can't wait to get started. My daughter is bringing it to Mexico for me in 1 month. In the meantime I'm excited to read how it's helping everyone in different ways
(wife w/fibromyalgia and polymyalgia rheumatic) Today my wife started Thiamin HCL with a 1g dose. Tomorrow she will do 1.5g. We will report her experience.
Hi, do you take all the tablets together or spread out over the day? Also is it a good idea to start at say 1000mg s and then work up to 4000mgs? Thanks
Thanks for your reply Roy!that is what Dr Constantini said too about the tremors.u have past almost 3 months with thamine hcl,this is the best result u have felt than trying other medecines?
Hope it works well with you Roy.I remember Dr Constantine telling me that levedopa will be required along with thamine. Anyways pls let us know ur progress without c/l.
Two days and all OK. Will therefore continue sole reliance on Thiamin HCL for now.
Deserves repeating "Within 24 hours of taking my first 1500 mg dose, I noticed a huge increase in my energy level. I then tried taking 2000 mg to see if it made even more of a difference, but I actually felt a little worse, so I dropped back to 1500 mg/day and have remained there ever since."
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