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Thiamine story
so sorry your child is struggling like that. Have you excluded that there is not any other things making your child stressed and anxious, than food? Like could there be something happening at school, too much pressure, bullying or anything else going on? Or could it be a worm infestation(stress makes kids more vulnerable for those too, as stress weakens the stomach acid concentration)? Kids can have those once in a while and that can make belly hurt for some too, a dewormer from the doctors office helps fast... best is of course simultaneously to address where the stressor is to begin with. It is often psychological.
I would be careful with supplements for children... if it can mess up adults (and we know it can) a kid is even more vulnerable. Food sources are so much safer and better.
Quote from Sarabeth on May 15, 2023, 6:36 pmThanks, @puddleduck, that's super helpful. I am restarting thiamine today, adjusted for child's bodyweight, and possibly zinc. I'm also giving magnesium in the form of electrolyte drink...but I wonder if I need to add more of that on its own (why are those dratted pills always so large?!!).
I keep getting lost in the weeds in terms of understanding the interaction of all the Bs, though, and whether cofactors/other Bs are important along with thiamine. Everyone's got their therapeutic hammer: methylfolate! Thiamine! B12! Biotin! Niacin!! B6 plus zinc!!! And I can't wrap my brain around which are relevant in my or my kids' cases, and how to know. I'm tempted to try a B complex for this child, but like you say, my experience in the past has been either no reaction or negative reaction to certain Bs (folate for sure, personally - although this was prior to VAD - but also there are supposedly ways to overdose on all of them).
I would love to hear any and all thoughts on Why Thiamine To Megadose...how to eliminate the other possibilities, or whether they're important too??
Sigh. Off to sad, anxious child. Minor improvements in energy this afternoon, after 300mg of thiamine plus some zinc...we'll see tomorrow.
Elliot Overton has a Facebook Group, which could be a helpful resource for finding your way out of the weeds (especially if you run into a paradox reaction):
https://www.facebook.com/groups/thiamineprotocols
His videos and articles are great, too. Apparently he has written a "Thiamine Protocol" document, which he sells on his website.
Oh yes, those giant magnesium pills... Lol! I'd make you a bottle of the topical magnesium to try if we were local.
Quote from Inger on May 16, 2023, 12:10 amI would be careful with supplements for children... if it can mess up adults (and we know it can) a kid is even more vulnerable. Food sources are so much safer and better.
When you are megadosing thiamine, it's not just a nutritional supplement anymore... It becomes a drug which stimulates enzymatic reactions that may have been lacking in a defficiency state:
Mechanisms of High Dose Thiamine Therapy
Although we know a lot about the activity of thiamine in the body, there are aspects about it that are still shrouded in mystery. We have known for a long time that it is a cofactor for many enzymes that function to produce energy. There is little doubt that Parkinson’s disease, like many other human diseases, is an energy-deficiency condition, so the use of thiamine in its treatment would make sense. However, much more information is required concerning its non-enzymatic functions. To become active in the body, thiamine has to have two molecules of phosphate added to it to act as a cofactor. Its non-enzymatic form includes thiamine triphosphate about which we know surprisingly little, in spite of the fact that it was discovered 70 years ago. This treatment of a severe crippling disease forecasts the arrival of Orthomolecular Medicine as the orthodox form of therapy.
- Derrick Lonsdale, MD
source: https://www.hormonesmatter.com/high-dose-thiamine-parkinsons-disease/
Thiamine is a powerful theraputic drug, which though demonstrated to be clinically effective, isn't entirely understood.
@puddleduck, I am sure thiamine is very powerful. Powerful drugs/supplements tends to have its downsides too. But what do I know 🙂 . I would just look in any corner before giving my child any supplement or drug, to see if there is another root cause that I can eliminate, if it was me. Children are such delicate but simultaneously powerful beings, and usually heal very well by themselves when the stressor that made them sick to begin with, is eliminated.
@inger I wasn't trying to invalidate your point of view, which I feel is sensible. Powerful drugs with partially unknown mechanisms of action cannot be considered perfectly safe. Informed consent regarding that reality is essential.
At the same time, thiamine can be life-saving in situations of deficiency (which can lead to permanent brain damage or even death in extreme cases), and oral thiamine supplementation isn't known to cause toxicity:
https://www.ncbi.nlm.nih.gov/books/NBK537204/
The evidence seems to indicate thiamine supplementation (at least, thiamine hcl taken orally) is safer than even routine antibiotics like amoxicillin, which when combined with something it shouldn't be can cause liver damage.
Vitamin supplements are still a new thing, evolutionarily speaking, though. So what do any of us really know about them at this point? I totally respect people who won't touch them at all for that reason, among others.
Everyone should trust their intuition with this stuff, since ultimately what is right for each of us is going to be individual.
My kids' achilles heels have always been behavioral/mental health related. And yes, there have been stresses, but they're homeschooled, I'm fairly constantly aware of the challenges, and this - while perhaps triggered by a difficult situation with friends plus moving plus getting a cold - has been much different than a resilient response to stress. Which is why I keep coming back to B1. Already today, the child in question is out of bed and more functional - tummy still hurts, various bodily pains are still coming and going, but I'm heartened...
Oh and thanks I had purchased Overton's booklet last year, and today I'll spend some time reviewing. Thanks for posting stuff in the meanwhile - it was very helpful when my brain could not process so much!
I am curious: does anyone happen to have experience with "slushy" tummies/stomach pain/suppressed appetite improving with thiamine therapy? This is a huge symptom right now - we all had a tiny tummy bug last month, but this child has been feeling so awful, with much bigger symptoms than anyone else, for a month now, which is why I started thinking that the infection might have triggered this B1 deficiency state...
That does make sense, @sarabeth-matilsky... Thiamine isn't stored in the body long (the half-life is 2 to 2.5 weeks).
When I am sick my need for zinc and thiamine increases, for sure, and both of those support a strong appetite in my experience. I recently read a study which suggested that EFA deficiency could contribute to lowered appetite, as well... But yeah!
Suppressed appetite does seem to be a symptom of thiamine deficiency:
"Compared to baseline and placebo supplemented values, thiamin-supplemented women experienced significantly increased appetite, energy intake, body weight and general well-being, and decreased fatigue."
- Influence of thiamin supplementation on the health and general well-being of an elderly Irish population with marginal thiamin deficiency
source: https://pubmed.ncbi.nlm.nih.gov/1986037/
"The thiamine re-supplementation promptly restored the mice's appetite and increased the food intake which reached the levels of control mice; correspondingly, the mice in TD+T group gradually regained the body weight and returned to normal body weight by the 31st day, lasting until the 33rd day."
- Thiamine Deficiency Induces Anorexia by Inhibiting Hypothalamic AMPK
source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3995829/
I hope your kid continues to feel better!
I started using benfothiamine again and it’s having a great effect on me. My bowels are moving much better and sugar and magnesium utilisation is much better, seems to be moving my iron, I feel a big increase in dopamine and energy too. I did use benfo a year ago but it didn’t do much, I think if you have too much toxicity it can block the b1 absorption so it won’t work properly.
I think b1 is probably the most important b vitamin for those with Vit A issues, specifically for binding to aldehydes and iron utilisation.
I agree. Sulphites deplete it too.
I have a lot more to say on this but need to go out now.
For me, B6 deficiency also became a huge issue. I have pyroluria and the aldehyde accumulation makes the B6 deficiency much worse (I personally think the body produces pyrroles in response to excess aldehydes, but that’s just my theory).
Lack of B1 and B6 equals endogenous oxalate production. Oxalates mess up NAD recycling. NAD required for ALDH. Vicious cycle. Workarounds employed. Workarounds have consequences (very helpfully spelt out by @alexm in NAD thread). Meri doing very useful work on this and posting on her Facebook. NAD availability is key imo.