• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

High dose B1/Thiamine has caused increased PEM/Cognitive sensitivity - anything i can take to reverse/treat this? (fish oil?)

Guwop2

Senior Member
Messages
238
After reading about the palliative effects of high-dose Vit B1/Thiamin I bought some and after a week my baseliness shifted from moderate to upper-moderate. I now cannot concentrate on anything that requires a bit of effort. Is there anything that I might try that could reverse this? A fish oil? Something else? Should i maybe see a doctor about this, could it have triggered something else in me?
 

linusbert

Senior Member
Messages
1,175
just give it a bit of time, it should regulate itself.
high dose anything especially b1 comes with the risk of worsening something else.
b1 is dependent on potassium and phosphor. maybe get some foods rich in those and see if that helps (without taking the b1 furthermore).

seeking out a doctor might not be necessary, if you feel safer you can do, but b1 usually isnt toxic so there isnt much he can do anyways. the disbalances caused by b1 should normalise over time (in a 2-3 weeks-like timeframe- of course you do not take b1 in the meantime).
 

Guwop2

Senior Member
Messages
238
just give it a bit of time, it should regulate itself.
high dose anything especially b1 comes with the risk of worsening something else.
b1 is dependent on potassium and phosphor. maybe get some foods rich in those and see if that helps (without taking the b1 furthermore).

seeking out a doctor might not be necessary, if you feel safer you can do, but b1 usually isnt toxic so there isnt much he can do anyways. the disbalances caused by b1 should normalise over time (in a 2-3 weeks-like timeframe- of course you do not take b1 in the meantime).
it's been nearly 2 months with no improvement. ill try the foods you recommend. ive had crashes before because of trying new remedies, each one different, each nasty in their own (including this one), some have lasted nearly a year. i guess ill just have to wait and see. this one crash is worse because I cant really even read now. thank you for responding.
 

Guwop2

Senior Member
Messages
238
b1 is dependent on potassium and phosphor. maybe get some foods rich in those and see if that helps (without taking the b1 furthermore).
...however, maybe i should avoid foods that promote B1 activity? I thought of trying to avoid all foods with B1/thianine in because perhaps at a even a low level i could have developed a sensitivity to it. ive done this before with mushrooms - i took a a too high a dose of reishi mushroom and I couldnt eat any mushrooms for about 18 months. same with tea - on a crash i drank caffeinated tea and now cant drink tea without it flairing the PEM.
 

Wishful

Senior Member
Messages
5,762
Location
Alberta
That's a problem with ME treatments: they work one way for some person, and may have the opposite effect for someone else. The same applies to any recommendations to try to reverse a change: they might have some effect other than the theoretical beneficial one. It's all a gamble, and doing nothing is a gamble too.

Since you have a history of bad effects from high dosage treatments, I recommend being careful in the future. Some people report better success with starting low and gradually increasing dosage. Some start with "recommended" dosages and avoid problems. We're all individuals.

I've had intolerances or worsenings of symptoms that lasted many months, and they eventually went away, some without any obvious reasons for the change.

Just curious: did you ever have any benefits from high-dosage treatments?
 

Guwop2

Senior Member
Messages
238
I appreciate your encouraging words, I indeed hope this goes away after some period as other things have. 🤞

Just curious: did you ever have any benefits from high-dosage treatments?

I found Reishi mushrooms could be take in high doses and they worked better, however I spent some time in the U.S (im from the UK) and purchased some reishi supplements that couldnt be got in the UK, some extreme dosage, and they were what messed me up. However, you're absoutley right to drawn attention to the fact that on average high doses of things dont mesh well in me and i should avoid. I take cold baths too, and the colder the better their effect - though ive not been able to get them under 7/8 degrees, so maybe any colder and id also run into issues.
 
Last edited:

Rufous McKinney

Senior Member
Messages
13,403
A friend called me up specifically to suggest I do this High dose THIamine: AlliThiamine. She said it cured her Mother's peripheral neuropathies. To take biotin and charcoal, also.

I actually NEVER launched this protocol. And my husband took the AlliTHiamine so I don' have it any longer.

Now, I have some super pure B-12 and it causes me to immediately detox and generates the giant brain bubble and I can't handle it- less than a drop/ the bubble- was too much,
 

Mary

Moderator Resource
Messages
17,408
Location
Southern California
@Guwop2 - thiamine caused a refeeding syndrome reaction for me - the thiamine increased my need for phosphorous, causing a functional phosphorous deficiency. However, the B1 also gave me a nice boost in energy, so I wanted to keep taking it. But the energy boost was followed by severe fatigue (low phosphorous). It took a little sleuthing to figure this out.

Dairy products are high in phosphorous so I drank around 3 glasses of kefir and the horrible fatigue started to dissipate after a couple of hours. I eventually had to buy a phosphorous supplement which I continue to take, as well as the B1.

Methylfolate did something similar to me - nice boost in energy followed by severe fatigue, but that time it was caused by my potassium tanking. The methylfolate increased my need for potassium, causing a functional potassium deficiency. I started taking potassium gluconate (best form I could tolerate), titrated up to 1000 mg a day (in divided doses) and the fatigue went away. I still take the methylfolate and potassium and do well on it.

Muscle testing has helped me a lot with these issues and several others, though I recommend having it done by a competent practitioner (very often a chiropractor) before attempting it oneself.
 

Judee

Psalm 46:1-3
Messages
4,502
Location
Great Lakes
I didn't do well with thiamine either. It was physically and visibly aging me and I was getting weaker and I wasn't even on high dose. I stopped it and thankfully the bad effects did wear off with time.

Because of the aging aspect I had that makes me wonder if antioxidants would undo whatever was going on although your reactions sound different than mine were.

If you do try the antioxidants maybe just use foods, like maybe tea, blueberries, etc. (things you know you're not sensitive to) rather than a supplement and as Wishful said start low and go slow.

Eating artichokes (maybe the kind packed in salt water rather than vinegar) might help with liver detox. ??
 

Husband of

Senior Member
Messages
318
For your body to use thiamine it will first convert it into a phosphate form - usually triphosphate. So, if your body tries to use more thiamine, you need more phosphate or it will get depleted .

You can buy expensive thiamine triphosphate supplements - they tend to be labeled "Coenzymated" or you can take phosphate but this is hard to get in supplement form because taking too much can be dangerous.

Foods that are high in thiamine tend to be high in phosphate though. In particular fish and dairy products. Fish where you eat the bones like tinned sardines are best. Sardines with cheese on bread, with a bit of sauce,m and smoked paprika, baked in the oven is pretty good.
 

GreenEdge

Senior Member
Messages
620
Location
Brisbane, Australia
You are over doing it.

Trying to correct a B1/Thiamine deficiency can make symptoms worse.

Supplying B1 enables more repair of nervous system. Inflammation is repair in progress. Increased inflammation of nervous system makes symptoms worse.
 

Shanti1

Administrator
Messages
3,220
For your body to use thiamine it will first convert it into a phosphate form - usually triphosphate. So, if your body tries to use more thiamine, you need more phosphate or it will get depleted .

You can buy expensive thiamine triphosphate supplements - they tend to be labeled "Coenzymated" or you can take phosphate but this is hard to get in supplement form because taking too much can be dangerous.

In line with your comment, I found that regular B1 made me noticeably worse, allithiamine made me better, but the winner in my B1 world was the triphosphate "coenzymated" form, helps me with energy, brain fog, and coat-hanger pain.

There are multiple steps moving thiamine into the cell and mitochondria and into the proper form. It is possible I also have trouble moving it into the cell, since regular B1 was not a success, but allithiamine, which readily penetrates the cell membrane was helpful.