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

[Oliver3]

It's called understanding B12 deficiency

 

[Lilliand]

So I've ordered the allithiamine. I'm going to start on 50mg. I've already been on a b complex for the past couple yrs. I eat pumpkin seeds everyday which has a lot a magnesium, so I think I'm good there. Mag supplements wreck me, and I get very tired on them, like sleepy. I'm going to get selenium and molybdenum. (Or get my molybdenum from flax seeds). Maybe phosphorus too. I already get plenty of potassium and electrolytes.

So I think I have all that covered.

My question is, are there any blood tests or any kind of tests I should get prior to starting? I'm seeing my dr next week.

My allithiamine gets here next week. I'll report on how it's going for me. I'm hopeful to try this!

 

[Oliver3]

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

 

[Lilliand]

If I were you I'd look into joining that site on Facebook.

I requested to join the group 😊 Thanks for the tip.

I'm happy for you that this is helping you, I hope you continue to have success with it.

 

[Oliver3]

Thank you. I hope you get some relief. It's still early days, but apart from diaezepam, it's the best thing I've tried for my mind. Abd it's non sedating.
Gotten more endurance. But not falling into any traps if trying to over reach.
I've also started supplementing chromium and selenium. The chromium really helps. Im not diabetic but eat a lot of carbs. Only on a small dose pharma Nord, really high quality supps

 

[Judee]

Any idea whether thiamine mononitrate can be substituted for thiamine HCL? The HCL version makes my stomach and intestines very acidic. I don't think I'm one of those people who suffer from low stomach acid so don't need any additional HCL.

It's just that I am still using some of what Dr L calls the salt versions of thiamine because Elliot Overton said the "Ordinary thiamine" is good to use during the paradox period as it increases "NAPH via PPP" (whatever that means ).

 

[pattismith]

I found an interesting article about thiamine as an Carbonic Anhydrase inhibitor:

Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With ME/CFS | Phoenix Rising ME/CFS Forums

Any idea whether thiamine mononitrate can be substituted for thiamine HCL? ).

are you sure the nitrate won't have any side effect?

 

[Judee]

are you sure the nitrate won't have any side effect

I'm not sure. I hadn't thought about that. I just know my stomach and intestines are a bit on fire with the HCL version.

Do you think the mononitrates would act similar to beets and/or celery? Last time I had celery it also set off my Reynauds. So maybe I would react.

Thanks for the question.

 

[Lilliand]

Gotten more endurance. But not falling into any traps if trying to over reach.

Is it helping with PEM in particular?

 

[Judee]

Gotten more endurance. But not falling into any traps if trying to over reach.

Is it helping with PEM in particular?

Yes @Lilliand's question is my question too. Plus, what are you taking and in what amounts? (Hopefully in a sweetly condensed version, please. )

I know, that doesn't mean what works for you will work for others but still it would be nice to know. (Sorry if you already said.)

 

[Oliver3]

Hard to know til I get some serious pem

 

[Oliver3]

Yes @Lilliand's question is my question too. Plus, what are you taking and in what amounts? (Hopefully in a sweetly condensed version, please. )

I know, that doesn't mean what works for you will work for others but still it would be nice to know. (Sorry if you already said.)

I'm using the hydrochloride version..cut up to at most 25 mg.
Less if I feel it's too much.
Flax seed.
Selenium
B complex.
Transdermal mag
Electrolytes
Lots of water.
Watermelon. For potassium and hydration.

I'm finding if I go over twenty five mg the thirst gets too much. Bentofioamine, I can take that all day. No good or bad effects.
So still trying to go slow.
I've got a big at the moment. So the resultant pem , if there will be interesting

 

[Judee]

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".

And then he goes on to suggest the following:

Practical considerations to enhance mitophagy and mitochondrial biogenesis:

• Regular periods of extended fasting (24hrs+)
• NAD+ enhancement through NMN/Nicotinamide riboside (dose recommended 600mg+), particularly on fasted days
• Resveratrol on fasted days
• Spermidine
• Astaxanthin
• Cold therapy
• High intensity exercise if tolerated

As he said on that last one, "if tolerated" which we know at this point it isn't for us.

So I added some resveratrol, niacinamide, and a small amount of d-ribose based on these thoughts and also what this guy said: https://sergey.science/thiamine-nia...q7mbXORl-W9-mgLDx9MO1L6gzhzUfAmSREBEZBaqAp3I4

I think for me at least these additions are helping.

 

[consuegra]

This discussion is interesting and complex. What happened about the old-fashioned idea of thiamine injections?
Chris

 

[Judee]

More adrenaline receptors are grown

What did you mean by this exactly? Is it that people with ME have more adrenaline receptors or something we are taking grows more of them?

Just wondering.

 

[Shanti1]

My experience so far with Coenzymated B1:

• Coenzymated B1 (thiamine pyrophosphate)- I'm on day 4 of Coenzymated B1 and the last 4 days have been the best I've felt in a long time. When sitting working, my energy and cognition have felt NORMAL at times. I still have OI and need full compression, but I was able to cut back on my droxidopa by 25%. Irritability and hypersensitivity to sound still a problem. I'm taking 3-5 lozenges of coenzymated B1 per day along with the 50mg of allithiamine. However, its early days. I usually wait at least 3 weeks before I report on something, but I think this one is a keeper.

My experience with other forms of thiamine:

• Regular B1- Feel better for first 1-2 days using 100-200mg, then feel worse with continued use.
• Benofthiamine- same experience as with regular B1
• Allithiamine- Improvement in brain fog and energy, able to use daily at 50mg. Sometimes increase to 150mg as needed.

Other odds and ends:

• I tried taking 100mg of riboflavin, but felt worse with it, so am relying on what is in my multi
• Potassium and phosphorus did not help me to tolerate regular B1 for more than 1-2 days. However, there was one day when I started to feel poorly after taking a Coenzymated B1 lozenge, I took some potassium and phosphorus and felt better. I am keeping it on hand.

Carbonic anhydrase inhibition:

• High doses of B1 can act like a carbonic anhydrase inhibitor and it is proposed that this is one of its mechanisms of action.
• A while back, I tried the carbonic anhydrase inhibitor Diamox (acetazolamide). I did not feel better or worse with it, but I noticed that it caused me to take deep long diaphragmatic breaths (one of its known effects.
• Since adding in the Coenzymated B1, I am noticing this same effect of compulsory deep breathing. Also feeling like I have better blood flow, especially to the brain. These are both probably due to its carbonic anhydrase effect. B1 is also needed for energy pathways, so that may be another way it is helping*

*From Wiki: Thiamine pyrophosphate is synthesized in the cytosol and is required in the cytosol for the activity of transketolase and in the mitochondria for the activity of pyruvate-, oxoglutarate- and branched chain keto acid dehydrogenases.

As an update, I am still getting benefit from a combo of allithiamine and coenzymated B1. Not surprisingly, I don't get the same boost that I did when I fist started them, but they have become a permanent part of my daily supplements and, along with everything else, help to increase my function.

 

[Shanti1]

Practical considerations to enhance mitophagy and mitochondrial biogenesis:

• Regular periods of extended fasting (24hrs+)
• NAD+ enhancement through NMN/Nicotinamide riboside (dose recommended 600mg+), particularly on fasted days
• Resveratrol on fasted days
• Spermidine
• Astaxanthin
• Cold therapy
• High intensity exercise if tolerated

I've tried a lot of "mitochondrial enhancers" including the ones above (except spermidine) and don't tolerate them. Nicotinamide riboside and astaxanthin make me really irritable and overstimulated. The only ones that I can tolerate are CoQ10 and PQQ, but I don't notice anything durable from them. Of course there are people on this forum who swear by mitochondrial enhancing supplements, so we each have to find the combination that works best for us.

 

[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.
.

I agree.

When I was iron deficient, I had myalgias when taking Thiamine.

 

[Oliver3]

Just as an update, it's still working. Upped my dose to around 500 mg thiamine chloride.
No cure obvs but functional a lot of the time

 

[percyval577]

Thiamine has been measured in a couple of studies.

Naviaux found it was higher on average among in cfs patients in men but not women (nb log scale, levels are extremely uneven between people and a good chunk of the difference in averages is driven by outliers)
...
Hanson 2018 found patients were higher too, although most people fell below the threshold of detetction which is why many of the results are the same. (note again log scale, note also colours reversed from above)
...
Overall this is not strong data but it is certainly not clear evidence of widespread thiamine deficiency. It doesn't follow though that supplementation doesn't help. Could be there are other problems that mean having super high levels of thiamine is useful. I note that thiamine is tied up in the function of pyruvate dehydrogenase, which is hypothesised to be blocked.

I recently thought, that B1 deficiency is a major contributor at time of onset.

Any other levels later on would not tell the thing.

And in fact, higher levels later on might be the try to correct the impact (as any other reported tendency of not strong data).