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https://youtu.be/fsxnw2caw5c Thiamine deficiency as a main contributor to cfs

GreenEdge

Senior Member
Messages
530
Location
Brisbane, Australia
I took my first Allithiamine (TTFD) last night and this morning I joined a group of Tai Chi friends I haven't seen in years:

Driving there - I felt weird like I was high on cannabis,​
practicing Tai Chi - I felt super calm like never before, and​
driving home - I was super alert and aware of all the cars around me. I was able to weave through traffic like I could 5 years ago, but the brain wasn't quite all there. I needed to be super careful.​

After I reviewing what I just wrote: I recognize all those things as the effects of taking THC, so I was high. :whistle:
I had taken medicinal cannabis oil at around 10pm to help me get to sleep and normally the effects are completely gone by next day. It must have sat in my stomach the whole night and not digested until after I woke-up this morning.

So maybe nothing to do with thiamine, but thought I'd share my story anyway. :)
 
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Messages
184
If thiamine was the cure or a good treatment for ME/CFS, we would likely all know it by now. The more common the drug/supplement/vitamin, the more likely it has been tested over and over again. Therefore it makes sense that something as extremely common among supplements such as thiamine would less likely be of any miracle help.

There are certain other forms of thiamine such as benfotiamine, which seems to be of special help to diabetics and alli- and sulbutiamine, all of which are fat soluble and could perhaps reach higher levels in the body. I reckon sulbutiamine has some nootropic effects and could be of use against brain fog, but again, I doubt its positive effects are really due thiamine deficiency as such.

I have not seen any evidence supporting the view that ME/CFS and similar diseases are some form of beri beri either. This hypothesis should be easy to prove/disprove by measuring the thiamine levels in blood among ME/CFS patients. Nowadays you can measure this very accurately via whole blood sample or use other biomarkers such as levels of various enzymes that depend on B vitamins.
Jes-
Good display of common sense. I am beginning to wonder about some of the theories here that seem to only be relevant to hard core alcoholics or people on some sort of starvation diet. Thiamin and potassium deficiencies are common in hard core, long term alcoholics.
 
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Messages
184
GreenEdge your link goes back to this same thread at the start on page 1. I read the entire thread before I posted.

Always good to hear different opinions.
 
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GreenEdge

Senior Member
Messages
530
Location
Brisbane, Australia
I have noticed a change already after just 2 x 50mg doses of TTFD. All my senses are more sensitive.

Both last night and this morning, I have noticed that when cutting bacon on my plate I was having trouble cutting it all the way through. I was feeling the blade of the knife touch the plate and this was casing me to reduce the downward force I was applying to the knife, because being able to sense that for the first time was making me think I was pushing too hard. In order to cut the bacon cleanly I had to increase the downward force applied. When I did, the sensation of the blade touching the plate was even stronger. Before I started taking TTFD, I never felt the knife blade touching the plate - I just cut it without feeling anything.

Also I went to another Tai Chi session this morning, meaning I went for another drive and my driving was much better. I'm able to feel the road and know what the car tyres are doing, know when I'm near the limit of their traction and never exceed it. Whereas before I would sometimes exceed traction and have to catch the slide by steering in the direction of the slide, or by reducing acceleration.

Yesterday on my drive I felt weird and when I wrote about it I thought I must have been high on THC, but the dose I took to help with sleep was way to low to make me high. What medical cannabis does is help restore balance but the effect is only temporary because like any medication it is only treating the symptoms whereas thiamine is treating the cause. Allithiamine (TTFD) works. :thumbsup:
 

GreenEdge

Senior Member
Messages
530
Location
Brisbane, Australia
And my sense of smell. It's very sensitive right now, I can smell something inside my nose, I think cased by completing a SARS-CoV-2 Antigen Test yesterday.

It's currently overly sensitive, however I know (in time) my brain will normalize the sensitivity level.

It's wonderful to be able to smell again. :)
 
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Messages
44
I have noticed a change already after just 2 x 50mg doses of TTFD. All my senses are more sensitive.

Both last night and this morning, I have noticed that when cutting bacon on my plate I was having trouble cutting it all the way through. I was feeling the blade of the knife touch the plate and this was casing me to reduce the downward force I was applying to the knife, because being able to sense that for the first time was making me think I was pushing too hard. In order to cut the bacon cleanly I had to increase the downward force applied. When I did, the sensation of the blade touching the plate was even stronger. Before I started taking TTFD, I never felt the knife blade touching the plate - I just cut it without feeling anything.

Also I went to another Tai Chi session this morning, meaning I went for another drive and my driving was much better. I'm able to feel the road and know what the car tyres are doing, know when I'm near the limit of their traction and never exceed it. Whereas before I would sometimes exceed traction and have to catch the slide by steering in the direction of the slide, or by reducing acceleration.

Yesterday on my drive I felt weird and when I wrote about it I thought I must have been high on THC, but the dose I took to help with sleep was way to low to make me high. What medical cannabis does is help restore balance but the effect is only temporary because like any medication it is only treating the symptoms whereas thiamine is treating the cause. Allithiamine (TTFD) works. :thumbsup:

So, a few things. One, I haven't mentioned this through all of this, but THC edibles seem to have very little effect on me when things are bad. For that reason I've always relied on carts or THCA herb. I found dry herb vaping to upset my stomach though, so I am looking forward to trying all this stuff after a few months of "normal" to see how they work.

I know what you mean regarding the extra sensory perception. I think it's just we have our full brain capacity back. I told my wife, it's like walking down the driveway, the concrete looked more detailed. It's not like if I looked at it a week before, it would have looked different, but it's like it was flatter, everything was flat. Now that I am on day 8 of recovery, I am finding all my senses and my ability to perceive them is higher. Music has more depth, etc.

I have had to pace myself BIG TIME, it is a little overwhelming, I've been crashing around 3pm each day for like 30mins.
 

lyran

Senior Member
Messages
183
I wonder if most of those who greatly benefit from high dose thiamine, CFS/ME/POTS was not triggered by infection. I have watched many interviews and one of the most common thing amongst people who benefit greatly or even achieve remission with thiamine is that they have had CFS-like symptoms throughout their life or the disease was triggered by unknown cause.

Am I wrong?
 

GreenEdge

Senior Member
Messages
530
Location
Brisbane, Australia
I wonder if most of those who greatly benefit from high dose thiamine, CFS/ME/POTS was not triggered by infection...
Am I wrong?
Yes, you're wrong.

My illness started as Ross River Fever in December 1994. I recovered but could not tolerate exercise anymore. I had CFS from January 1995 onwards to the present day. I have taken only 4 tablets of TTFD and have had to stop because I'm assisting with ME/CFS (Long Covid) research with a university and they don't want me taking anything let alone introducing a new variable.

Despite no longer taking it, I am continuing to see improvement.
 

GreenEdge

Senior Member
Messages
530
Location
Brisbane, Australia
I just realized I'm probably getting plenty of thiamine from eating liver (almost every day). So after taking TTFD just a few times my body is now able to utilize the thiamine in the liver I'm eating. When I first started eating liver, I could not absorb the nutrients very well because it made my pee bright yellow. Now I can eat liver every day and my pee is the color of white wine.

Can you please tell us more about that.
Yes, the research is being conducted at various universities all over Australia and is organised by NCNED, Griffith University. They "aim to elucidate the pathomechanism of ME/CFS and long COVID to discover a diagnostic test and implementation of treatments to improve patient outcomes". If you wish to participate you can contact Tania Manning (t.manning@griffith.edu.au). They need both people with and without ME/CFS.

A week ago I donated blood to help them find a blood marker for determining ME/CFS and long COVID. One blood sample was flown over to Germany. On May 11 they will be doing an MRI scan of my brain. Apparently the brain scans are showing people with ME have inflammation of the brain stem.

Why won't medicine admit that long COVID is ME/CFS?
I guess people with good intentions can not see the evil they create.
 
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L'engle

moogle
Messages
3,167
Location
Canada
Was getting a headache from adding a second 100mg of thiamine. Started taking b2 (100mg) and didn't get the headache. Only tried one day so far. Both NOW brand. Today's a rest day.
 

GreenEdge

Senior Member
Messages
530
Location
Brisbane, Australia
Since taking just 4 capsules of TTFD and then stopping, I have continued to get better everyday - so it appears the TTFD has kick started a recovery.

To see if I still get PEM, I went for a 800m bare foot run.

I will report back...
 

lyran

Senior Member
Messages
183
Inspired by this man's experience, I tried taking a lower dose of TTFD (25mg) with B-complex a few days ago but I didn't notice anything but a sulfury breath for the whole day. Earlier on I have tried taking 50mg dose but I got a terrible fatigue from it.