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

[Shanti1]

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?

I don't know what the case is for the majority, but my ME/CFS is EBV related and I respond very well to thiamine as allithiamine and also as thiamine pyrophosphate.

 

[Judee]

Molybdenum scares me. I'm part of a b group that insists on that but it seems to give people reactions.

I can take it in a very low dose multi but feel a little ill if I just take it on it's own. There is a thread on here somewhere where someone talks about taking it with boron so I wonder if that's a needed co-factor. Too tired to link that right now. Maybe I can come back later and do so.

What kind of reactions are they mentioning in that b-vitamin group you mentioned and is it mostly in people with ME, do you know?

 

[Oliver3]

Hi...I can't remember the reactions but molu seemed like the real humdinger.
It's for autism, m.e.lymes nerve issues etc.
There have been some total recoveries from almost Whitney like states, lots of people not getting anywhere much so far...I just haven't the tenacity or money for it...they advise transdermal b vits

 

[Judee]

.they advise transdermal b vits

Can you make a diy version? One man in the comments on hormonesmatter mentioned doing that with the ttfd and coconut oil, I think.

I tried it with the Ecological Formulas version but the capsule has something gritty in it, I think silica, it so it didn't work that well.

Anyway, just a thought.

 

[Judee]

@Oliver3, are you in the group that Jadzhia talks about in this thread and post 121: https://forums.phoenixrising.me/thr...-to-b12-injections.75317/page-10#post-2426509

Is that the group you keep referring to? @Jadzhia said there, "An awful lot of folk in the FB group of Greg's do get these reactions, some after adding in just a tiny amount of any of Iodide, selenite, molybdate, B2, B12... the list goes on!"

That's what made me think you might be talking about the same group. ??

I'm still trying to find a way to not be so sensitive to all this so that it will work for me.

 

[GreenEdge]

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...

I got PEM from lower back and pelvic muscle fatigue. Also my calf and foot arch muscles are sore.
1 week has passed and I feel like it will probably take me another week to bounce back.

 

[Oliver3]

 

[Oliver3]

Interesting he had a spinal injury that started on this

 

[Forummember9922]

Just wanted to add to this thread that on my cfs onset last xmas I definitely had some Beri Beri sides of the mouth sores action going on (for the first time i can remember), implying some potential relation, albeit direct or downstream, of thiamine lacking or not transporting somewhere

 

[sunshine44]

I've started taking lions mane mushroom powder to add to things.
There is a discernible improvement again.
I'm being careful with dosing.
I've spent 4 days in a row, 6 hours out , driving shopping etc.
It's been hard at times. But that was impossible before. Again I don't know if this will last but I've felt FEELINGS again other than dread and horror

I just began taking lions mane 2 months ago and am having considerable brain and circulatory and possibly myelin improvements. Not sure exactly but something is happening. I like you have been experimenting with medicinal mushrooms again for 2? Years now. I’ve been in sun potion Cordyceps which has helped me as well. But lions mane, is so far like, light years from where I’ve ever been. I am fully bedridden but in wheelchair was just able to lie on my couch in living from for first time in FIVE years. Not sure if it will happen again but I’ve tried previously. Couldn’t do it before. I know it is capable of repairing myelin sheath and neurons and inhibiting certain viral and bacterial growth. Whatever it is, I like it but I’m going real low and slow.

 

[sunshine44]

Also, transdermal B1 saved my life I believe in 2020 which I document in my blog here. I now take beef organ capsules and moringa which each have b1 and have lowered my transdermal dose.

B1 seems to act as some sort of cellular catalyst? In me. What Eliot Overton talks about makes sense as his method is using it as therapeutic and not from a deficiency. Hence, almost viewing it from a completely new perspective. That being said, multiple alternative practioners believe I was in a state of berberi that was never tested for or even considered. So, hard to say if it was my blood levels alone or the way my cellular uptake if it was compromised. I know Lyme and coinfections eats through b1 and other b vitamins which I contend with.

I of course added magnesium, b complex and potassium with mine eventually. And I went very low and slow. And I was mostly transdermal only for a long time.

 

[Oliver3]

I just began taking lions mane 2 months ago and am having considerable brain and circulatory and possibly myelin improvements. Not sure exactly but something is happening. I like you have been experimenting with medicinal mushrooms again for 2? Years now. I’ve been in sun potion Cordyceps which has helped me as well. But lions mane, is so far like, light years from where I’ve ever been. I am fully bedridden but in wheelchair was just able to lie on my couch in living from for first time in FIVE years. Not sure if it will happen again but I’ve tried previously. Couldn’t do it before. I know it is capable of repairing myelin sheath and neurons and inhibiting certain viral and bacterial growth. Whatever it is, I like it but I’m going real low and slow.

That's fantastic. Keep it low and slow..anything that gives us that little bit of a barrier between the beast and our health is great. Thanks for the insight and encouragement

 

[Oliver3]

Also, transdermal B1 saved my life I believe in 2020 which I document in my blog here. I now take beef organ capsules and moringa which each have b1 and have lowered my transdermal dose.

B1 seems to act as some sort of cellular catalyst? In me. What Eliot Overton talks about makes sense as his method is using it as therapeutic and not from a deficiency. Hence, almost viewing it from a completely new perspective. That being said, multiple alternative practioners believe I was in a state of berberi that was never tested for or even considered. So, hard to say if it was my blood levels alone or the way my cellular uptake if it was compromised. I know Lyme and coinfections eats through b1 and other b vitamins which I contend with.

I of course added magnesium, b complex and potassium with mine eventually. And I went very low and slow. And I was mostly transdermal only for a long time.

Where did you source the transdermal b1 out of Interest.
Just sipping on some lion's mane tea as we speak. I cycle it so as not to get used to the effects

 

[Artemisia]

I think trauma plays a huge cycle in this..not because it's a psychosomatic illness but because trauma triggers the cell danger response and that stops healing, causes more trauma and a further spiral into the dauer state.

Yes, exactly. Lack of energy to deal with energy-necessary (sometimes stressful) life tasks is traumatic. I mean logically if a big city like New York City has a massive power outage (no energy)...it creates trauma and crisis and chaos. Why can't non-ME people understand that about how this disease affects us??? Our bodies are extremely complex just like a big, busy city yet for pwME some part of the energy producing "infrastructure" has massively failed affecting every other system in the body. That is very traumatic.

I really like these 2 quotes.

@Oliver3 or anyone else -- still using and benefiting from thiamin?

 

[Shanti1]

I still take about 500mg of allithiamine daily and thiamine pyrophosphate when I need an additional boost. It continues to make a big difference for me, especially for brain fog and cognition.

 

[Mary]

I really like these 2 quotes.

@Oliver3 or anyone else -- still using and benefiting from thiamin?

I take 200 mg. thiamine HCL daily - I've taken it for several years. I started with 100 mg, gradually worked up to 300 mg and then eventually backed down to 200 mg. I also take a good methyl B complex, methylfolate, methylcobalamin, B2, B6 and a ton of other stuff.

When I first took B1 maybe 8 years ago, I started with 100 mg. and it gave me an amazing boost in energy which was quickly followed a day or 2 later by severe fatigue so I had to stop it. It took a long time to figure out that the B1 had caused my phosphorous to tank, causing the fatigue, due to a refeeding syndrome reaction. So when I finally retried the B1 over a year later, and had the same reaction, I drank several glasses of kefir (high in phosphorous) and sure enough, within a few hours the fatigue started to go away. I've taken B1 ever since, and have had to supplement with phosphorous ever since.

methylfolate caused the same reaction, energy boost followed by severe fatigue, only the methylfolate caused my potassium to tank - which was quickly remedied because I had been reading Freddd's posts about methylation and potassium. And I've had to take potassium daily ever since.

 

[Artemisia]

I take 200 mg. thiamine HCL daily - I've taken it for several years. I started with 100 mg, gradually worked up to 300 mg and then eventually backed down to 200 mg. I also take a good methyl B complex, methylfolate, methylcobalamin, B2, B6 and a ton of other stuff.

When I first took B1 maybe 8 years ago, I started with 100 mg. and it gave me an amazing boost in energy which was quickly followed a day or 2 later by severe fatigue so I had to stop it. It took a long time to figure out that the B1 had caused my phosphorous to tank, causing the fatigue, due to a refeeding syndrome reaction. So when I finally retried the B1 over a year later, and had the same reaction, I drank several glasses of kefir (high in phosphorous) and sure enough, within a few hours the fatigue started to go away. I've taken B1 ever since, and have had to supplement with phosphorous ever since.

methylfolate caused the same reaction, energy boost followed by severe fatigue, only the methylfolate caused my potassium to tank - which was quickly remedied because I had been reading Freddd's posts about methylation and potassium. And I've had to take potassium daily ever since.

thanks Mary.

i've tried to take it for years but even on low doses it causes a bad mood, headache, anxiety.. several forms i tried do this, and i was on magnesium etc.

 

[Mary]

thanks Mary.

i've tried to take it for years but even on low doses it causes a bad mood, headache, anxiety.. several forms i tried do this, and i was on magnesium etc.

Perhaps you don't need it, or you may be missing a co-factor. This gets so complicated, it can be hard to tell what exactly is going on!

Muscle testing has helped me figure out things that were unclear at first - e.g., glycine caused a severe detox reaction for me - I was taking it for sleep and ready to stop it because it hit me like a truck, until my chiropractor who does muscle testing found that I did test strong for it, albeit in a much smaller dose, which I was very gradually able to increase over a period of 6 months. And at the end of that time, it no longer caused detoxing for me, and also I stopped reacting badly to several other substances. Without MT I never would have been able to sort this out.

 

[Artemisia]

Perhaps you don't need it, or you may be missing a co-factor. This gets so complicated, it can be hard to tell what exactly is going on!

Muscle testing has helped me figure out things that were unclear at first - e.g., glycine caused a severe detox reaction for me - I was taking it for sleep and ready to stop it because it hit me like a truck, until my chiropractor who does muscle testing found that I did test strong for it, albeit in a much smaller dose, which I was very gradually able to increase over a period of 6 months. And at the end of that time, it no longer caused detoxing for me, and also I stopped reacting badly to several other substances. Without MT I never would have been able to sort this out.

Thiamin does help me with some things, though. It's just like with thyroid medicine. It really helps me with some symptoms but also creates some unbearable symptoms and I just can't figure out how to tolerate it, even though I know my body needs it, with thyroid at least.

That's interesting about muscle testing. have you ever learned to do muscle testing on yourself? I would like to learn but it feels like it's one of those topics where there will be a ton of information online, but I'm not sure if it's legitimate or trustworthy.

 

[Mary]

That's interesting about muscle testing. have you ever learned to do muscle testing on yourself? I would like to learn but it feels like it's one of those topics where there will be a ton of information online, but I'm not sure if it's legitimate or trustworthy.

I have learned to do it on myself, after having it done many times by competent practitioners. I always suggest that someone first have it done by a knowledgeable person, who very often is a chiropractor - because the testing can be subtle and you have to know what you're doing. e.g., it's really important to be as neutral as possible while doing the testing - if someone is thinking, "I hope this works, I hope this works", or strongly wants a certain outcome, that can affect the results. I think there is good information on-line but again, I strongly recommend first seeing someone who is good at it.

One way to find a practitioner is to go to the Standard process website, which has a link to find practitioners who use their products, who very often do muscle testing: https://www.standardprocess.com/