What’s next?

[J.G]

I've taken high dose benfotiamine for 4 years, and it works well without side effects. I think the statement that it doesn't get into the brain is wrong.

What does benfotiamine do for you?

 

[Martin aka paused||M.E.]

Allithiamine very quickly gave me neuropathy. Pain zaps down the front of my legs.

I've taken high dose benfotiamine for 4 years, and it works well without side effects. I think the statement that it doesn't get into the brain is wrong.

I'm also not sure about that. I mean it can cross BBB

 

[Learner1]

What does benfotiamine do for you?

All the things that thiamine is known for doing.


Thiamin (vitamin B1) helps the body's cells change carbohydrates into energy. The main role of carbohydrates is to provide energy for the body, especially the brain and nervous system.

Thiamin also plays a role in muscle contraction and conduction of nerve signals.

Thiamin is essential for the metabolism of pyruvate

https://lpi.oregonstate.edu/mic/vitamins/thiamin

https://www.webmd.com/vitamins-and-supplements/health-benefits-of-vitamin-b-1

https://www.livescience.com/51721-vitamin-b1-thiamine.html

 

[J.G]

Cool. I was thinking more along the lines of - what tangible benefits are you seeing from supplementary benfotiamine that you're not getting from standard dietary thiamine? But thank you for the info

 

[GlassCannonLife]

Allithiamine very quickly gave me neuropathy. Pain zaps down the front of my legs.

I've taken high dose benfotiamine for 4 years, and it works well without side effects. I think the statement that it doesn't get into the brain is wrong.

That's interesting, I didn't realise thiamine could cause neuropathy. Yes, it was a mouse study that I linked, so perhaps the effect does not track for humans.

 

[Learner1]

Humans are not mice.

 

[Martin aka paused||M.E.]

@Learner1 You are so right about my immune system. It's besides metabolism obviously a concerning problem. My MBL levels are BELOW the detection limit. My NK cell toxicity is highly impaired (on top of low NK Cells) and the LTT which looks for proliferation of t cells in vitro (stimulation index) show an t cell exhaustion or at least an impaired response (though I have a relative t lymphocytosis). Plus the other things (almost no b cells, low thymus function). Thank you! We will expand our efforts. This is a highly impaired immune system. And I don't know about antibodies yet, except the neurological ones.

 

[GlassCannonLife]

Humans are not mice.

I think there is still a lot of potential value to be drawn from mouse studies.

Of course humans are not mice but generally the diffusion of compounds through the blood brain barrier is a simple enough mechanism to be conserved between species. I would seek further data in general as that was only one study and there may be conflicting findings from others. I think the point that perhaps a different type of thiamine may yield a more desirable result, however, remains valid.

All research has to be taken within its specific context and evaluated for its merits. I am a postdoc with years of experience examining literature and designing experiments in vitro and in small and large animal models, so maybe I have a warped perspective on how people approach research data in general.

Anyway, my whole mentioning of thiamine was simply triggered based on Martin saying he had tried benfotiamine without any noticeable benefits. This made me think of the high dose (500 - 1500 mg) thiamine oral trials people had been doing with varied success, which then made me think of the difference in serum levels achieved with injected thiamine / oral allithiamine and oral thiamine hcl and I wondered if maybe the high dose oral trials were working because they were finally high enough to match what injection / allithiamine could reach. That is all very speculative, but could be tested cheaply/easily.


I feel like the peptides would be worth a good shot considering their general utility and particular relevance to dopamine regulation.

 

[Martin aka paused||M.E.]

I think there is still a lot of potential value to be drawn from mouse studies.

Of course humans are not mice but generally the diffusion of compounds through the blood brain barrier is a simple enough mechanism to be conserved between species. I would seek further data in general as that was only one study and there may be conflicting findings from others. I think the point that perhaps a different type of thiamine may yield a more desirable result, however, remains valid.

All research has to be taken within its specific context and evaluated for its merits. I am a postdoc with years of experience examining literature and designing experiments in vitro and in small and large animal models, so maybe I have a warped perspective on how people approach research data in general.

Anyway, my whole mentioning of thiamine was simply triggered based on Martin saying he had tried benfotiamine without any noticeable benefits. This made me think of the high dose (500 - 1500 mg) thiamine oral trials people had been doing with varied success, which then made me think of the difference in serum levels achieved with injected thiamine / oral allithiamine and oral thiamine hcl and I wondered if maybe the high dose oral trials were working because they were finally high enough to match what injection / allithiamine could reach. That is all very speculative, but could be tested cheaply/easily.


I feel like the peptides would be worth a good shot considering their general utility and particular relevance to dopamine regulation.

High dose thiamine hcl is a thing I can try of course.

I'm not a post doc in medicine but I know that many mice models don't work in humans. I don't think that we have to fall into black and white thinking here.

No criticism. Just saying.

 

[Learner1]

I think we do need to remember that humans do not work exactly like mice do - we eat different diets, we have different lifestyle and environmental factors, and even though we share most genes, we don't share all of them, and we should look at mouse studies with a healthy skepticism rather than gobbling them all up without question.

 

[Learner1]

@Learner1 You are so right about my immune system. It's besides metabolism obviously a concerning problem. My MBL levels are BELOW the detection limit. My NK cell toxicity is highly impaired (on top of low NK Cells) and the LTT which looks for proliferation of t cells in vitro (stimulation index) show an t cell exhaustion or at least an impaired response (though I have a relative t lymphocytosis). Plus the other things (almost no b cells, low thymus function). Thank you! We will expand our efforts. This is a highly impaired immune system. And I don't know about antibodies yet, except the neurological ones.

I think that's your best angle. You likely have other things happening as a result but it seems likely that a highly impaired immune system can leave you vulnerable to various viral, bacterial or fungal infections that you might not even be reacting to properly it be aware of, and these can, in turn, trigger autoimmunity. We've seen this pattern in many of us - it seems like a likely scenario for you. What info can we provide to help get your doctors to be a bit more curious about investigating?

 

[GlassCannonLife]

I think we do need to remember that humans do not work exactly like mice do - we eat different diets, we have different lifestyle and environmental factors, and even though we share most genes, we don't share all of them, and we should look at mouse studies with a healthy skepticism rather than gobbling them all up without question.

I agree, "gobbling them all up without question" is definitely not the stance I'd recommend either

 

[GlassCannonLife]

High dose thiamine hcl is a thing I can try of course.

I'm not a post doc in medicine but I know that many mice models don't work in humans. I don't think that we have to fall into black and white thinking here.

No criticism. Just saying.

Yeah I completely agree, I specifically said "All research has to be taken within its specific context and evaluated for its merits."

There is a tendency to over and under value mouse data, while it really mainly acts to be an initial screen for studying pathways/interventions cheaply and quickly (and more ethically than jumping straight into large animal studies).

Anyway, sorry to derail the thread.

 

[Martin aka paused||M.E.]

I think that's your best angle. You likely have other things happening as a result but it seems likely that a highly impaired immune system can leave you vulnerable to various viral, bacterial or fungal infections that you might not even be reacting to properly it be aware of, and these can, in turn, trigger autoimmunity. We've seen this pattern in many of us - it seems like a likely scenario for you. What info can we provide to help get your doctors to be a bit more curious about investigating?

That's a good question. I really can't tell you what would convince the docs to look at my results and think about what to do.
The cellular immunology and the autoimmunity part - I know I need a specialist. And they all refused bc I can't go to their practice. It's driving me nuts!

 

[pattismith]

My MBL levels are BELOW the detection limit.

Martin, I too have MBL below the detection (MBL is linked to innate immunity). And have abnormal high CD4/CD8 ratio.

Some immunologist think that low innate immunity + unbalanced adaptive immunity is a good explanation for long covid (and ME/CFS as well I guess!)

 

[Martin aka paused||M.E.]

And have abnormal high CD4/CD8 ratio.

Crazy. My CD 4/8 is borderline low

 

[pattismith]

Crazy. My CD 4/8 is borderline low

your CD4/CD8 seems fine to me, but your CD4 is close to the low limit. Did it show any change over time?

Your total lymphocyte count is not high 1220/mm3, and particularly your B cells seem really low (41). Does it refer to the B lymphocytes?

 

[Martin aka paused||M.E.]

your CD4/CD8 seems fine to me, but your CD4 is close to the low limit. Did it show any change over time?

Your total lymphocyte count is not high 1220/mm3, and particularly your B cells seem really low (41). Does it refer to the B lymphocytes?

There a lot of other problems too which doesn't show up in this test - to say it very clearly: my immune system is fucked. Low t cell proliferation in LTT, low thymus function, low NK-cell function...
Finally we found an immunologist who is willing to help and wants to do additional tests. That's my ch better than trying things on my own. Especially with immune stimulators you can make things much worse.
I hope only I won't have to pay for it.

 

[Learner1]

My MBL levels are BELOW the detection limit.

Martin, I too have MBL below the detection (MBL is linked to innate immunity).

Low MBL can be a genetic issue.

https://medlineplus.gov/genetics/condition/mannose-binding-lectin-deficiency/#causes

This, along with your low NK cells, should make it worthwhile to have an immunologist help you. If I'm understanding correctly, they won't see you because you cant physically get to their office? If so, is Zoom or similar not a possibility or could someone find a way to transport you?

 

[Martin aka paused||M.E.]

Low MBL can be a genetic issue.

https://medlineplus.gov/genetics/condition/mannose-binding-lectin-deficiency/#causes

This, along with your low NK cells, should make it worthwhile to have an immunologist help you. If I'm understanding correctly, they won't see you because you cant physically get to their office? If so, is Zoom or similar not a possibility or could someone find a way to transport you?

Yes we discussed about it. Zoom: docs say no. I'm not stable enough for a transport but if there is no other choice I have to.