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

[cheeseater]

Even many of the good multi-vitamins do not have anywhere near as much thiamine as being discussed here.
Of interest is the current studies going on linking low thiamine levels and migraine headaches. For those studies they are giving people 400mg thiamine.

 

[Judee]

Dr Lonsdale goes over the best form(s) of thiamine and gives the biological reasons why on this page: https://www.hormonesmatter.com/navigating-thiamine-supplements/

I also like what he says on that page, "Any disease where energy deficiency is the underlying cause may respond to TTFD, unless permanent damage has accrued. Dr. Marrs and I believe that energy deficiency applies to any naturally occurring disease, even when a gene is at fault."

 

[Judee]

Elliot Overton also addresses paradox reactions (side effects) and steps to take beforehand before moving to the TTFD (stronger) form of Thiamine on this page: https://www.hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/

Seems like lots of helpful advice especially since so many of us with ME are so fragile.

Edit: He also has a VIDEO << here where he covers some of the various forms though it's long and I haven't been able to get through it all yet.

Edit #2: And paradox reactions (continued) as relates to methylation. https://www.hormonesmatter.com/paradoxical-reactions-ttfd-methylation-connection/

 

[Shanti1]

Could the levels be high because they're not converting to the useable form in the body?

I think that is a possibility. Or the thiamine is not being transported into the cell. Whatever it is, it seems that our levels don't actually test low, but perhaps, in some of us extra thiamine overcomes some utilization issue or pushes some pathway that is sluggish.

Has anyone tried the coenzymated form?

I jut purchased the coenzymated (thiamine pyrophsophate). It arrives next week. I'll report back.

 

[Consul]

I think that is a possibility. Or the thiamine is not being transported into the cell. Whatever it is, it seems that our levels don't actually test low, but perhaps, in some of us extra thiamine overcomes some utilization issue or pushes some pathway that is sluggish.

Yep i dont think its low either, thiamine seems to be involved in lots of different things so hard to know why it helps.

https://www.mdpi.com/1422-0067/22/11/5418

 

[Oliver3]

Yep i dont think its low either, thiamine seems to be involved in lots of different things so hard to know why it helps.

https://www.mdpi.com/1422-0067/22/11/5418

A lot of serious covid patients were low in thiamine and it's speculated that thiamine also destroys spike protein

 

[Oliver3]

Dr Lonsdale goes over the best form(s) of thiamine and gives the biological reasons why on this page: https://www.hormonesmatter.com/navigating-thiamine-supplements/

I also like what he says on that page, "Any disease where energy deficiency is the underlying cause may respond to TTFD, unless permanent damage has accrued. Dr. Marrs and I believe that energy deficiency applies to any naturally occurring disease, even when a gene is at fault."

https://pubmed.ncbi.nlm.nih.gov/715...at in,increase in systolic blood pressure.the more you Google about thiamine and also the rest of the complex, the more you realise how important this subject could be

 

[Consul]

A lot of serious covid patients were low in thiamine and it's speculated that thiamine also destroys spike protein

Well i havent seen much to indicate pwme have low thiamine. It would have to be intracellularly in that case.

I think Jeffrey Lubell is probably right in that it works because its a carbonic anhydrase inhibitor. And the positive effects could be increased blood brain flow or decreased cerebrospinal fluid pressure.

 

[Oliver3]

Well i havent seen much to indicate pwme have low thiamine. It would have to be intracellularly in that case.

I think Jeffrey Lubell is probably right in that it works because its a carbonic anhydrase inhibitor. And the positive effects could be increased blood brain flow or decreased cerebrospinal fluid pressure.

Perhaps the parameters for what is low or high depends on phenotype

 

[Judee]

Google about thiamine and also the rest of the complex, the more you realise how important this subject could be

I agree... things I am reading on that site seem to mirror some of the things I've read about here.

For instance this: https://forums.phoenixrising.me/thr...eakness-me-cfs-discovered.89208/#post-2422125

"Although the pathophysiology is not yet fully understood, there is ample evidence for hypoperfusion which may result in electrolyte imbalance and sodium overload in muscles...Muscle sodium content before and after exercise was higher in ME/CFS than in healthy controls. Furthermore, our findings indicate an inverse correlation between muscle sodium content and handgrip strength. These findings provide evidence that sodium overload may play a role in the pathophysiology of ME/CFS..."

And this: https://www.hormonesmatter.com/thiamine-deficiency-causes-intracellular-potassium-wasting/

"In short, the bioenergetic state of the cell governs its ability to retain potassium ions and structure water into a gel-like phase. A cell with plentiful ATP can maintain this ability, independent of the “sodium potassium pump”. On the other hand, cells lacking energy lose their capacity to retain potassium, intracellular water becomes “unstructured” and intracellular concentration of sodium ions increases and the electronic state of the cell is changed. This causes water to “leak” out of the cells into the extracellular space to produce a localised edema of sorts. Thiamine, playing a central role in energy metabolism, is partially responsible for maintaining healthy redox balance and a continuous supply of ATP. Hence, it is no wonder why a deficiency of this essential nutrient produces such drastic changes in the cellular electrolyte balance."

Edit: I'm a big coffee drinker and I'm reading how the tannins in coffee, tea and some other things contain thiaminase which can degrade thiamine in the intestines so, like sugar, can affect our absorption rates.

This forum post has some info on that. https://raypeatforum.com/community/threads/anti-thiamine-factors.43679/

It gives a study and some advice on the bottom of that first post regarding Ascorbic acid (Vitamin C) that I am finding helpful.

 

[Oliver3]

I agree... things I am reading on that site seem to mirror some of the things I've read about here.

For instance this: https://forums.phoenixrising.me/thr...eakness-me-cfs-discovered.89208/#post-2422125

"Although the pathophysiology is not yet fully understood, there is ample evidence for hypoperfusion which may result in electrolyte imbalance and sodium overload in muscles...Muscle sodium content before and after exercise was higher in ME/CFS than in healthy controls. Furthermore, our findings indicate an inverse correlation between muscle sodium content and handgrip strength. These findings provide evidence that sodium overload may play a role in the pathophysiology of ME/CFS..."

And this: https://www.hormonesmatter.com/thiamine-deficiency-causes-intracellular-potassium-wasting/

"In short, the bioenergetic state of the cell governs its ability to retain potassium ions and structure water into a gel-like phase. A cell with plentiful ATP can maintain this ability, independent of the “sodium potassium pump”. On the other hand, cells lacking energy lose their capacity to retain potassium, intracellular water becomes “unstructured” and intracellular concentration of sodium ions increases and the electronic state of the cell is changed. This causes water to “leak” out of the cells into the extracellular space to produce a localised edema of sorts. Thiamine, playing a central role in energy metabolism, is partially responsible for maintaining healthy redox balance and a continuous supply of ATP. Hence, it is no wonder why a deficiency of this essential nutrient produces such drastic changes in the cellular electrolyte balance."

Edit: I'm a big coffee drinker and I'm reading how the tannins in coffee, tea and some other things contain thiaminase which can degrade thiamine in the intestines so, like sugar, can affect our absorption rates.

This forum post has some info on that. https://raypeatforum.com/community/threads/anti-thiamine-factors.43679/

It gives a study and some advice on the bottom of that first post regarding Ascorbic acid (Vitamin C) that I am finding helpful.

Great info

 

[Oliver3]

Great info

 

[Oliver3]

The above video covers a lot of issues raised..for example" adequate" levels in the blood but not in every organ and other reason for megadosing.( Safely)
Pots/ dusautonnia, enteric issues are discussed if you can get through the video

 

[Oliver3]

To add further, from what I remember listening to earlier, he talked about naviaux s cell danger reaponse even if you are not deficient at all in thyamine, the brain and nervous system may be in a hypometabolic state because of the initial injury( he mentions Lyme, stress etc) and therefore the enzymes needed to break down or utilize these vitamins is not there. He says high dosing can break the metabolic stats. But he says great care and attention is needed as paradoxical reactions occur if you just go into large doses.
He talks about the vagus nerve being controlled by thiamine. If it loses its tone then sympathetic dominance occurs, which has huge enteric knock on effects like leaky guts. He says that s why leaky gut can be resistant to healing because thiamine keeps the tone of the vagus nerve in checkmhe talks about the pyruvate dehydrogenase stuff and lactate all of which need thiamine.
That's all I can remember for now

 

[pattismith]

Dr Lonsdale goes over the best form(s) of thiamine and gives the biological reasons why on this page: https://www.hormonesmatter.com/navigating-thiamine-supplements/

I also like what he says on that page, "Any disease where energy deficiency is the underlying cause may respond to TTFD, unless permanent damage has accrued. Dr. Marrs and I believe that energy deficiency applies to any naturally occurring disease, even when a gene is at fault."

I already had some success with thiamine supplementation, but also got burning muscle, so had to stop.
Maybe it can be explained by permanent damage, or maybe by my chronical iron deficiency.
Now that I managed to correct this deficiency, it's time for me to do another Thiamine trial. Do you think TTFD and Allithiamine are the same?

I think that is a possibility. Or the thiamine is not being transported into the cell. Whatever it is, it seems that our levels don't actually test low, but perhaps, in some of us extra thiamine overcomes some utilization issue or pushes some pathway that is sluggish.



I jut purchased the coenzymated (thiamine pyrophsophate). It arrives next week. I'll report back.

I'm interesting with your trial

 

[Judee]

other reason for megadosing.

I found a comment from Dr Lonsdale (attachment below) where he said just to start with 100mg of the Thiamine, Magnesium and a Multi vitamin and to stay at that level until any paradox reaction passes.

I'm taking a little more than that and adding some of the other things Elliott mentions but I've been sick for more than 40 years so I think I need to start low and go slow especially since I live alone and have no one here to monitor me for negative reactions. I do think this disease has damaged my heart some as well so I really have to be careful.

Being sick so long, it is tempting to dive in and try to hurry the process but Dr L said that isn't realistic. He said things need time to reverse course and repair.

Still I'm using the HCL plus the Coenzymated B1 and have the Allithiamine on order but even after I get it, I'm going to try just to introduce it slowly.

I'm just trying to strike a balance so I don't enter into that paradox reaction zone too much.

Still I will try to watch those videos you posted at some point. I'm just not doing well with watching much of anything right now.

Do you think TTFD and Allithiamine are the same?

From what I am reading, I do believe they are the same. There seems to be 3 products with TTFD available currently (at least in the USA where I am):

-The Thiamax brand by Elliot shown HERE which also contains some Mag Taurate and has no other fillers,
-Lipothiamine like THIS which also includes fillers and Alpha Lipoic (which some of us don't do great with) and,
-The Allithiamine (has fillers) you mentioned shown HERE. (There are some comments on there of the Allithiamine no longer containing the Calcium and Phosporus ingredients so I am not sure until I get my order if those will be in there.) I also like the Allithiamine because it starts at a nice 50mg, "start low; go slow" dose.
I tried to pick Amazon listings that have pictures of the labels in my links but there may be less expensive listings.

I purchased the Allithiamine (along with some more b2) from pureformulas HERE because I could get the small bottle for the least amount of money to try it. However I'm not sure if they ship outside the US but just thought I would mention it for anyone having to watch their funds while trialing things.

Edit: My understanding is that you want to look for the words, "thiamine tetrahydrofurfuryl disulfide" on the label of any product you buy in order to get TTFD.

Hope this post helps answer your question and that the TTFD will help you.

Edit #2: I came back and added the print screen of Dr L's comment. I don't know how to make it bigger/more readable though. I'm sorry.

 

[Oliver3]

I found a comment from Dr Lonsdale (attachment below) where he said just to start with 100mg of the Thiamine, Magnesium and a Multi vitamin and to stay at that level until any paradox reaction passes.

I'm taking a little more than that and adding some of the other things Elliott mentions but I've been sick for more than 40 years so I think I need to start low and go slow especially since I live alone and have no one here to monitor me for negative reactions. I do think this disease has damaged my heart some as well so I really have to be careful.

Being sick so long, it is tempting to dive in and try to hurry the process but Dr L said that isn't realistic. He said things need time to reverse course and repair.

Still I'm using the HCL plus the Coenzymated B1 and have the Allithiamine on order but even after I get it, I'm going to try just to introduce it slowly.

I'm just trying to strike a balance so I don't enter into that paradox reaction zone too much.

Still I will try to watch those videos you posted at some point. I'm just not doing well with watching much of anything right now.



From what I am reading, I do believe they are the same. There seems to be 3 products with TTFD available currently (at least in the USA where I am):

-The Thiamax brand by Elliot shown HERE which also contains some Mag Taurate and has no other fillers,
-Lipothiamine like THIS which also includes fillers and Alpha Lipoic (which some of us don't do great with) and,
-The Allithiamine (has fillers) you mentioned shown HERE. (There are some comments on there of the Allithiamine no longer containing the Calcium and Phosporus ingredients so I am not sure until I get my order if those will be in there.) I also like the Allithiamine because it starts at a nice 50mg, "start low; go slow" dose.
I tried to pick Amazon listings that have pictures of the labels in my links but there may be less expensive listings.

I purchased the Allithiamine (along with some more b2) from pureformulas HERE because I could get the small bottle for the least amount of money to try it. However I'm not sure if they ship outside the US but just thought I would mention it for anyone having to watch their funds while trialing things.

Edit: My understanding is that you want to look for the words, "thiamine tetrahydrofurfuryl disulfide" on the label of any product you buy in order to get TTFD.

Hope this post helps answer your question and that the TTFD will help you.

Edit #2: I came back and added the print screen of Dr L's comment. I don't know how to make it bigger/more readable though. I'm sorry.

I also read on this guy's page that b1 needs b2 to activate and b2 needs the co factors selenium, molybdenum and potassium iodide or iodine.
If these are lacking the b1 may not work...
I wish protocols for this were more established

 

[Oliver3]

There are a fair number of studies I've come across about theamine controlling histamine in the brain

 

[Oliver3]

Just putting this out there for those who might need to see it.
Why Greg recommends using plain Riboflavin and stresses the need make sure your diet includes plenty of magnesium:
.
"You may also have a problem with using R5P. In order for you to take up R5P from the intestine the phosphate has to be cleaved off and that requires alkaline phosphatase, which from memory is magnesium dependent. If you are low on Mg it may not happen."

 

[Violeta]

The video by Overton is very good, and brings me back to thinking the very core of my problems are something wrong on the most basic level, the mitochondria, specifically, the electron transport chain. It's very complicated, though.

Thanks for the info, @Oliver3.