High Dose Thiamine (HDT)—How critical is the sweet spot?
How critical is the sweet spot? If mine is 1200mg oral Thiamine HCL a day and I took 1100mg for 10 days, should it make a difference? I am currently at 118 days at a value less than 1300 and greater than 1100. I think, I might have misjudged a “return of symptoms” and mistakenly cut to 1100. I have not regressed to “no benefit”, just—not where I was.
I wasn’t taking my L-dopa on an empty stomach (no eating 30 minutes before or 1 hour after). Sometimes my alarm to take went off in as little as 5 minutes after eating. Sometimes I gave in to hunger in much less than 1 hour. But, there are 2 gaping enormous holes in this theory: 1. There are time release versions of C/L and they, if don’t add AFMT (or something) to inhibit the bacteria, the bacteria in your gut should thrive. 2. People report tremendous improvement using Probiotic PS 128 which happens to be bacteria producing l-dopa (what stops other bacteria from feeding on it.
Last, but not in the least, I didn’t walk 4 days last week (it has proven that forced exercise reverses PD).
Note: I am now taking 4 times a day because I found that I was having off-time and increasing to 4 times greatly increased my blood pressure control. healthunlocked.com/cure-par...
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You mentioned your high blood pressure. I have been taking a 1000 mg for quite a while. Then I decided to increase it to 2000 mg. per day Again, my blood pressure sky rocketed. I stoped taking it for a few days and I am back again on 1000 mg. This is not the 1st time That it happens to me. In the very beginning it happened and of course I had no idea what was doing it.
No sweet spots, no axiomas here. Unfortunately the RIGHT DOSE of Thiamine (either HDT or LDT) appears to be strictly individual and definitely not constant. You may spend weeks, months, even years (if you are stubborn enough..) to identify it. When you finally succeed (if at all..), the "sweet" period may happen not to be that long as you expect. You soon realise that the RIGHT DOSE is just temporary stuff or in the best scenario you may really feel good without touching your dose, and this sense of well being may last many months even years in some rear cases. However, the X-day usually comes sooner than expected and the unpleasant, frustrating feeling of overdose symptoms hitting you again. You have to stop the intake, wait certain amount of days, reduce the dose and.. so on.. and so fort.., the whole equilibristic with chasing this MAGIC DOSE starts again. All this happens not because you personally are cursed, but because this is the essence of this damn disease. I mention all of this, based on my almost five years of experience using Thiamine. I began HDT treatment, initially by injection on Dr. Costantini's prescription and under his personal guidance, and.. actually my attempts continue to this day.. Тhroughout this five-year period of dose hunting, I've tested on myself almost all available forms of Thiamine starting with inject. application, then capsules of Thiamin HCL at doses from 4gr downwards and than upwards again.., than the other forms and.. etc. All the while, I never lost hope and never gave up trying because trying it on myself enough times, convinced me that when I managed to hit the right dose of Thiamine, the effects from it were undeniable. Аnd so, I still use this magic vitamin and rely on it. Now my favorite is allithiamine (TTFD) , which in my opinion appears to be the best form working with my system. As a matter of fact my current LDT will for sure sound quite strange to some, but the effect on me is excellent. At the end of the day this is what matters. How long this temporary well-being of mine will last, I cannot say. What I can state is that whatever happens, I am ready to pursue it again when the moment comes, because it is definitely worth it!
I just emphasize again that in saying all this, I am simply expressing my personal opinion and not imposing my conclusions on anyone. Drawing on my now almost five years of experience with thiamine administration, I can venture the following statements that I believe to be true:
1. The "magic dose" exists. When you do find it, you very quickly realize that fact.
2. The "magic dose" is not constant and changes depending on the needs of your system. Мy observations show that the effect from it is extremely dependent on good sleep!
3. The "magic dose" is most probably different for everyone, depending mainly on the individual health status. What currently may work for you, may not work for the others and vice versa.
4. For most people it takes a lot of persistence and consistency to identify the right form of thiamine and the current dose that works for you.
5. Unlike the other symptoms, especially regarding the TREMOR, Thiamine itself does not work alone! Should be definitely combined with L-Dopa! Your current right dose combined with enough quantity of L-Dopa, may make you feel as if you are a "healthy person". And most important, this nice feeling lasts..
6. Thiamine helped me a lot to control my already 15 years PD. I would say its role is crucial to feeling really quite well recently. It definitely drastically improved my quality of life in almost all aspects. It is a MUST in my medication protocol, together with all other things I use and do.
I had excellent results with brand name Allithiamine (TTFD) but found available doses much to large for me. By the way brand name Allithiamine doesn't contain Allithiamine: healthunlocked.com/cure-par...
Thank you for this detailed account of your journey with thiamine. Your story is so similar to my husband’s story. We’ve been trying to find the sweet spot for 4 years. Just switched 2 days ago from sublingual B1 back to 1000mg HCL (Dr C’s recommendation). I’m hoping the improvements (balance and foggy head) are long lasting.
Благодаря много за споделения опит с Тиамин. Бях на ръба на отчаянието..от 2 години нагоре надолу и не намирам правилната доза. Бихте ли ми споделила какво друго правите заедно с Тиамин? Благодаря!
I agree with most of what Dadcor says but it only took me 3 months to find my sweet spot with b1 sublingual. The results are amazing. Join fb group Paekinsons b1 therapy and buy the book of the same name by Daphne Bryan on Amazon We are all different and one size doesn’t fit all. You Ned to find your own sweet spot and be patient in finding results.
I have been taking a supplement with horsetail grass in it for my skin. I have developed a rash and today is the first day I stopped to check side effects:
Taking horsetail by mouth may cause levels of vitamin B1 (thiamin) in the body to drop. If you take horsetail on a regular basis, you should also take a quality multivitamin or at least a B complex supplement daily. mountsinai.org/health-libra...
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Is high dose thiamine therapy effective for people not taking levodopa?
New website to share information about high dose thiamine(B1) therapy: www.B14PD.com
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