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

[Oliver3]

There is definitely smthg to thiamine being part of the picture. I've had moments out of fight and flight. Just feel genuinely content. They don't last, maybe an hour at a time. I've done more, more endurance. I'm trying to factor in all the co factors hydration etc and am intent of eventually getting up to a gram a day.
I read in the comments section of some thiamine sites ( I know anecdotal and not exactly scientific) that many people have problems getting back from catabolic to anabolic and this is where most people stop thinking it's not working..
It's also possible, I believe, to have wet or dry beri beri in just one organ and still have normal blood levels of thiamine.
It's postulated that these people need high dose to get the wheel started again.
Its gonna be a year experiment for me.
I've read thiamine destroys spike and therefore, just for that, I'll be continuing. Also heard that most people who enter ICU with COVID are thiamine deficient.
That would give a nod to your point that at the beginning of an infection there is a deficit in thiamine

 

[Judee]

I read in the comments section of some thiamine sites ( I know anecdotal and not exactly scientific) that many people have problems getting back from catabolic to anabolic and this is where most people stop thinking it's not working..

I agree!!!!

Though even with some paradox reactions (which Dr L said is a good sign) I sometimes feel like my body really is trying to recharge now.

One lady in the FB group named Ola has had ME for 35+ years and she is well now for almost 2 years though she also stressed that taking co-factors with the thiamine is key.

She also said, "One week off my supplements, and my illness is back. So nothing is fixed. Just bypassed. The underlaying infection is still there. An aotopsy of 3 me/cfs brains showed active infections. 2/3 had herpes6 3/3 had ebv"

So that tells me this will probably be a lifelong treatment for some of us who have been sick for a long time.

 

[Oliver3]

I can live with taking b1 and co factors.
I've been on two walks today!!!
I will say tho..I had some therapy today.
I've realised how traumatised I am by this whole experience and beyond..
I have a confidence back with b1 . 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.

All I definitely know is b1 is allowing me to eat less, excercise more and feel better emotionally.
So far it's not anywhere near a cure but it seems to be holding as a treatment.
So many things are feeding into this illness but b2 helps.
Interestingly b1 is used to kill the spike protein in COVID.
I wonder if it inhibits ebv

 

[MeMeMe]

If I were you I'd look into joining that site on Facebook.
They read your oat test for free ( I think).
Yeah better to get the molybdenum from flax in my opinion.
My head is still so much clearer. I'm interested in trying the other forms if this but still on standard b1.
I've actually woke up a couple of times not feeling poisoned!!!
I'm still staying lowdose. The benefit of the chokeide version is I can control the dose to small amounts.
There is deffo smthg lasting ( so far) in effect.
It seems like it can help with part of the disease process

hi there

do you have a link to the Facebook group being mentioned here? Keen to join.

thanks

 

[Oliver3]

Well I think judee is talking about a different one that I may join.
Can I pm you

 

[Judee]

do you have a link to the Facebook group being mentioned here? Keen to join.

I know you weren't posting that to me but if you wanted the same groups I'm in, I just went onto FB and typed in thiamine and it brought up the two groups...one called something like Thiamine Deficiency and Managing Paradox reactions (I think this is Elliot Overton's group). The other one was something like Thiamine Deficiency and Energy Insufficiency. Hope you can find them otherwise like Oliver3 said you can PM me and I will get you the links.

I also initially joined a 3rd group on Mitochondria (I think by Dr Marrs) but the things people post there are all over the place topic wise and right now I really want to focus on thiamine and cofactors.

I wonder if it inhibits ebv

EO talked about something regarding chronic/stealth infections and immune system response with a focus on times of Thiamine insufficiency in an article on his FB group page. My eyes and brain weren't letting me read and absorb last night but you could look it up if you join that group.

 

[Oliver3]

Thanks for the info. I've been watching Elliot's videos but haven't seen his Facebook page.
I went for a jog tonight...it lasted thirty seconds...it felt bloody great.
Smthg is shifting..I hope it lasts. Not giving out false hope.
Just found out ocd is often caused by low thiamine. I've had ocd all my life!

 

[Judee]

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.

Just found out ocd is often caused by low thiamine. I've had ocd all my life!

That's wonderful!!! I think I've had OCD most of my life too, I didn't realize it though until the last 10 years or so; the same for ADHD.

I so hope this works for us. It sounds like it's already starting to for you.

 

[pattismith]

I've joined about 3 or 4 FB groups now.

Elliot Overton has one on thiamine and paradox reactions where talks about our mitochondria being damaged:

"If someone has crappy mitochondria, it is therefore conceivable that taking any supplements aimed at enhancing mitochondrial function (example: thiamine *ESPECIALLY* the bioavailable derivatives) might just increase the amount of ROS, and therefore oxidative stress.
What to do in this situation? Consider starting from scratch:
The rate of mitophagy is governed by something called the NAD+/NADH ration. Enhancing NAD+ levels through various means can improve the production of new, healthy mitochondria (biogenesis). This is one of the main reasons why NAD+ boosting therapies are considered to be "anti-aging".
.

this article suggests Glutathione deficiency may be the reason for the paradoxical reaction:

Paradoxical Reactions With TTFD: The Glutathione Connection - Hormones Matter

I have difficulties with any supplementation that potentially increase the oxidative stress, like Iron or Chromium III, but I found Glutathione supplementation helps me a lot , so it may help with thiamine as well

 

[Judee]

I found Glutathione supplementation helps me a lot , so it may help with thiamine as well

I have tried a couple times to add NAC but it's too potent for me. It's causing insomnia and other issues like swollen brain feeling.

Do you just take a glutathione supplement and if so which one?

 

[pattismith]

I have tried a couple times to add NAC but it's too potent for me. It's causing insomnia and other issues like swollen brain feeling.

Do you just take a glutathione supplement and if so which one?

Glutathione reduced like this kind, (I use a french brand ). it works better for me than NAC.

 

[Judee]

Glutathione reduced like this kind, (I use a french brand ). it works better for me than NAC.

Thank you for posting that.

How do you feel it when you take this?


Also found some tips on this site to increase glutathione: https://www.healthline.com/nutrition/how-to-increase-glutathione

 

[pattismith]

Thank you for posting that.

How do you feel it when you take this?


Also found some tips on this site to increase glutathione: https://www.healthline.com/nutrition/how-to-increase-glutathione

Glutathione helps me with my sleepiness/brain fog.

 

[Judee]

Many people with CFS/ME and fibromyalgia are suffering from low endorphins.

Have you looked into D-Phenylalanine? It's supposed to help with pain (physical and emotional) and endorphins.

Edit: iirc LDN also does something with endorphins.

 

[Wayne]

Glutathione helps me with my sleepiness/brain fog.

Hi @pattismith -- Have you ever considered nebulizing glutathione? When I was researching this recently, I ran across a number of comments like, "it really wakes up my brain". When I tried it, I might have noticed a tad bit of that, but I ended up with stuffy sinuses for a couple hours or so. I've been considering getting a different brand to see if it might make a difference.

 

[MeMeMe]

Well I think judee is talking about a different one that I may join.
Can I pm you

Of course! My door’s always open

 

[pattismith]

Hi @pattismith -- Have you ever considered nebulizing glutathione? When I was researching this recently, I ran across a number of comments like, "it really wakes up my brain". When I tried it, I might have noticed a tad bit of that, but I ended up with stuffy sinuses for a couple hours or so. I've been considering getting a different brand to see if it might make a difference.

In fact the one I use that works for me is a kind of perlingual glutathione of this kind (@Shanti1 )

 

[lyran]

Have you looked into D-Phenylalanine? It's supposed to help with pain (physical and emotional) and endorphins.

Edit: iirc LDN also does something with endorphins.

Yes I have tried D-Phenylalanine and do use LDN. I am not able to function at all without LDN but I didn't notice much from D-Phenylalanine.

I think D-Phenylalanine, DL-Phenylalanine and L-Tyrosine benefit you if you only have low dopamine (and norepinephrine) levels but if you have low beta-endorphins and met-enkephalins, they are quite useless.

 

[Shanti1]

@pattismith Thanks for posting the glutathione product that works for you. I think sublingual and liposomal are probably the best delivery methods. It is worth noting though that many people say that glutathione has to be liposomal to work, and while there is some research showing poor unformulated oral absorption, there is other research showing that unformulated oral glutathione is, in fact, absorbed:

Randomized controlled trial of oral glutathione supplementation on body stores of glutathione. (2015) https://www.ncbi.nlm.nih.gov/pubmed/24791752

In vitro and ex vivo uptake of glutathione (GSH) across the intestinal epithelium and fate of oral GSH after in vivo supplementation (2014) https://pubmed.ncbi.nlm.nih.gov/25198144/

Increase in the Protein-Bound Form of Glutathione in Human Blood after the Oral Administration of Glutathione (2014) http://pubs.acs.org/doi/abs/10.1021/jf501338z

Oral supplementation with liposomal glutathione elevates body stores of glutathione and markers of immune function. (2017) https://www.ncbi.nlm.nih.gov/pubmed/28853742

Personally, I don't do well with glutathione or NAC. I tried starting at a low dose of 10mg oral unformulated glutathione, and even that was a no-go. I've explored lots of theories as to why this is, but it remains a mystery.

 

[Judee]

Once in a while, I am experiencing somewhat more ME stable periods with this therapy.

I've tried and am using the hcl, ttfd, and coenzymated (with co-factors) but still seem to get the biggest boost with the hcl so focus most of my dosing on that one.

I did try the mononitrate version but it made the pins and needles in my hands much worse so I switched back to the hcl form. The acidity I mentioned in a previous post (in my digestive tract/bladder) from the hcl seems to have toned down somewhat now so that it's more bearable.

One guy in the comments on the Hormones Matter site also mentioned making his own topical form with the ttfd and petroleum jelly. He said he would then apply that to his belly. He said it was helping him and that he didn't get the paradox reactions when he used it that way. IIRC he speculated that was because it was more "timed released" so didn't require his body to use up co-factors as rapidly.

Still many of us with ME are chemical sensitive so if I try something like that I'm going to use a different oil.
(I tried to find his comment so I could include it here but can't find it again. I'm sorry.)