I'm sorry if this has been previously brought up but, when you started taking B1 as a therapy... what were your first symptoms to regress or back off, and what time frame did you start to notice improvements?
I'll start , been on it for circa 3 weeks now, 3000 mg per day and just this week I've noticed better motor control on left side as in my hand is free-er, less stiffness, as in I reckon my overall stiffness has reduced significantly, (this was one of my main symptoms)and I'm just not losing balance as much. It has to be the b1 assisting as I have not done anything differently within the last 4 weeks. Does this sound crazy? I'm still training in the gym 5 out of 7 days and using red light therapy. My wife can even notice, I don't want to read into thing's that are not there but I would like to understand others experiences.
Thank you guys, and I hope your all in good health...other than battling PD
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AaronS
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My friend has been taking it for about 8 months or so. Her balance and handwriting are much better, and her mood as well. Her tremors have improved beyond what we saw with C/L. Check out the videos made by Dr. Costantini at youtube.com/channel/UCwsHIc... . Unfortunately they're not well organized, and in Italian of course, but you can find before/after tapes of people walking and talking that are amazing.
Yes, she's still on C/L. Actually my saying that "her tremors improved beyond what we saw with C/L" reveals some of my ignorance. I don't actually know whether C/L provides continuing improvement over months.
Adding to what I said above, her energy is better and her sleep is improved (but not completely; she's a lifelong insomniac) and her facial expressions are better.
Hi,I learned about the HDT B1 therapy here very recently and just started it 3 days ago. Originally I wanted to try the injections but haven’t been able to make that happen yet. Dr Constantini said he thinks results are better with injections vs oral delivery.
I looked into B1 tablets and didn’t like seeing the amount of additives in them so I looked for the powder. Every single one I found, including the two listed on this site came from China! I do not want to support China so I kept looking. I finally found one made in USA, bought a gram scale to weigh it and started myself on .500 gr 2 x day, (500 mg) before breakfast and again around 12-2 pm, away from lunch. I’ve mixed it in a small amount of filtered water. It tastes awful, very bitter but it goes down quick and the taste doesn’t last. If I decide it’s truly helping I will invest in a capsule maker and fill my own. So far I’ve had less fatigue and more energy all 3 days. Coincidence? Maybe. I’m usually quite fatigued daily with very inconsistent and unpredictable energy reserves, so this gives me hope! I’m logging my B1 experience and dosing, so I’ll post an update later. I also take carbi-levodopa 25/100, 2 x day, sometimes 3 x day, plus mucuna bean powder, 7 gr mixed in water 4-5 x day, alternating with the C/L. I haven’t yet noticed any difference in my PD symptoms from the B1, which do go away when my C/L or mucuna are “on”, but start coming back when they’re wearing off or if I miss a dose. I’m going to increase my dose of B1 tomorrow to 750 mg 2 x day, and continue in that pattern until I experience any changes.
What Dr. Costantini said, was that the injections were his preferred method, but said oral dosing was just as effective if taken at the optimal dose for the individual.
If you are only at the testing stage, it is easier and more convenient to take capsules or pills because if you are not at home, you can't break out the digital scale and measure your dose which means you are likely to miss some doses which is not going to be helpful when you are still trying to find your optimal dose. The other plus is that the commercial products are already accurately measured. Once you have determined your optimal dose then you can start using pure thiamine powder in capsules or otherwise, but carrying capsules with you is a good thing whether they are loaded at home or bought from a supplier. The other advantage, since not everyone responds to HDT is that you won't have to spend money for a capsule filler or digital measuring device if you are a non responder.
Yes, travel can be a challenge for medication/supplement dosing. I fill tiny glass jars with whatever dose of a powder I need to take, weighing/measuring at home, and bring them along with plenty of extra water to mix as needed, shaking to mix and then drink. Capsules would be easier for sure but my mucuna dose is currently too large to capsulize. I’m not fond of swallowing lots of pills, although I’ve done plenty of it. The very large ones give me trouble, the normal sized ones-I’m just tired of so many all the time. Sometimes it’s easier for me to just gulp down the unpleasantness and be done with it!
Small improvement after a week, big improvement after a month (all non-motor symptoms gone - fatigue, balance, brain fog, constipation, urinary urgency, insomnia, depression, anxiety and so forth). The single symptom left is a mild tremor in the RH.
You are referring to B1? What form/dose are you taking? Are you taking anything else? I’m sorry if this is a duplicate question, I didn’t see it. Very encouraging!
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