Agree that low doses aren’t particularly related to the published works. There are some people in FB groups that report benefit from low doses though (even < 100mg thiamine hydrochloride), so I guess it’s horses for courses.
Anyway, small update. After spending some months researching and then some more months tinkering, have found that high dose thiamine can have some excellent benefits for me. TLDR, brain is faster, memory sharper, and I just feel overall that I’m much closer to my ‘pre-CFS brain’, than my ‘CFS brain’. Overall energy and motivation are also much, much higher than before. I still get PEM but it’s very different now.
Edit: I’m taking 1750mg thiamine mononitrate and 50mg TTFD. I expect the mononitrate will decrease, TTFD increase as I make adjustments over time. Will also be adding in benfotiamine very soon.
Bad news. It took a lot of adjusting and experimenting to get here. I’ve learned the hard way that magnesium malate is a mood and motivation destroyer for me (‘anhedonia’ is the term I found people using on reddit, for this exact except some people get from mg malate). For thiamine to work I’m also taking large doses of all the b vitamins, as well as electrolytes (potassium, sodium, magnesium) and “helpers” manganese, molybdenum and selenium. With this number of moving parts it does get overwhelming at times. I was basically in limbo for about two months, knowing that the protocol should be working, but feeling pretty crappy most of the time. Thankfully I got it dialled in as of about a week ago.
This is all taken from the B1 protocol as available from Elliott Overton Nutrition. It’s also been shared freely on some places online, if you can find them. The doc costs 60 pounds which isn’t much compared to the amount I’ve spent on supplements so far. The document is quite useful as you can use it, plus the ingredient lists from the supplement formulations, to figure out the individual substances and appropriate ratios. It also lists some deficiency symptoms for the b-vitamins, electrolytes and others, which is helpful if you are getting weird side effects. For me it helped me figure out I needed large daily doses of magnesium, potassium and sodium. These help me regulate heart palpitations, blood pressure and anxiety.
I’ve spent many hours using online “brain training” games to assess cognitive to be benefit in an objective manner. The results of testing baseline vs on thiamine show a significant improvement in speed and multitasking. More subjectively, using video games as a testing method also shows that my brain is operating significantly better than its usual CFS levels. Awareness, ability to predict object movement in a 3D space, can think many moves in advance (instead of struggling with even planning an executing the next move) and skill progression is occurring in exactly the way it used to before CFS. EG, my brain is just generating cool ideas for me to experiment with, instead of me just sitting there going “what the shit should I do now?”.
Some issues exist.
Worst one is related to B6. I’ve accidentally given myself some neuropathy symptoms (itching, pricking, tingling, burning) mostly in my arms and feet, but also sometimes all over my body. Have been referred to a neurologist for diagnosis but that is likely to be many months until I find out. The symptoms occurred after taking supplements with high amounts (30mg, 50mg and occasionally 130mg) of b6 daily. These were taken most days (30 and 50mg) over a three-year period. 130mg was just for a week at a time, twice in the last six months.
This is a significant impediment to progress, as for me, B6 is essential for this protocol. That said, the protocol does work without b6, but it’s just not the same. The b6 gives a more positive mood, without it I find I get irritable and angry more easily. And I’ve always been prone to these traits so adding more on top is….. well it’s just a shit time hahahaha.
The plan is to resolve the peripheral neuropathy by a) adding in benfotiamine or b) dropping thiamine protocol until the symptoms go away.
I haven’t done any testing of physical attributes. It was my plan initially, but I just didn’t get around to buying a fitness tracker.
PEM is different now. I still get a cognitive and physical decline after exertion, but the feeling/sensation of it is different. Usually I would get various sensations in the frontal cortex, such as feelings of tightness, inflammation, and a few other specific manifestations I can’t think of the words for atm. Since high dose thiamine it’s more like just being tired, rather than the usual various sensations in my brain, and the cognitive deficits are less severe now also.
♂
