Desperate to find answers for my breathing problems and wheezing lasting almost an entire year non stop

TheSir

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Could a lack of calcium cause severe breathing issues ? I was taking high doses of magneisum when this all began as well, and I don’t eat much calcium since I’m lactose intolerant but my calcium serum levels are always normal. My vitamin d is also a bit low
Due to low D, it could be low magnesium in spite of the supplementation. I have been supplementing Mg to bowel tolerance limit for a year (up to 1g at times like you) and my blood Mg is at the upper ceiling of the reference range. In spite of this my cellular Mg has remained low in all of my hair tests... except for one. What was different back then? I was taking a Mg supplement with some D added.

My problem is that I can't take much D without making my twitching, palpitations and breathing issues worse. The reason likely is that though high levels of D increase Mg absorption, initially D uses up Mg. Concurrent low D & low Mg is a catch-22: without D your cells won't absorb Mg, with D your cells will lose Mg into D metabolism.

In the past week I've begun working around this issue by introducing D gradually 5 mcg at a time while megadosing Mg.Any time my problems worsen, I either hold the dose or go back one step until the situation becomes easier. Even though I'm at ~25mcg only, I'm pleased to tell you that my breathing issues seem to be lessening and I feel all around slightly better day by day. I'm now also able to take large doses of kelp-iodine, which used to worsen my twitching and air hunger.

So I think D deficiency-induced functional Mg deficiency could play a part in your issues too. To answer your original question, I've also been taking calcium with magnesium at 2:1 ratio, which may have done something too.

Btw thiamine uses up Mg too. That might be why you feel worse with it
 
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Yeah that’s my current trial. Going to try to work up to around 900mg of allithiamine a day. I got to 450 yesterday and I feel breathing is worse today somehow.
900mg of allithiamine is a huge dose. Please review your dosing.

This is a recent thread on mast cell syndrome - it might be helpful

 
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pubh12

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So significant update , at least I think it’s significant

I always said since this started a year it was an issue in the upper airway somehwere but couldn’t really prove it. The exhale stridor i was told was always lungs- but the sound always seemed to come from the upper airway.

So when I lay flat my breathing can get signifiantly worse. It was just so positional. Like any position change could alter the breathing ability a lot and it just made no sense. I was just laying there and decided to screw around- I gripped the piece of cartilage or whatever segment you can feel right above the Adam’s apple segment of cartilage and I slid it upward. It completely opened up the airway. Perhaps it was moving the hyoid bone upward or something else upward, but the difference was incredible.

As someone with extreme hypermobilty - tense and tight muscles are something im used to. When I first started getting the breathing problems the first thing I noticed was all that tension in that area vanished.

I go back to this starting on very high doses of magnesium and also Fludrocortisone , the muscle fasciculations and weakness and all that- it’s like all the muscles in my larynx and throat just “let go”. It’s why Myesthenia Gravis was one of the first things I suspected with the very obvious muscle weakness at the time. It had gotten so I had collapsed at the pharmacy it was so hard to walk.

I don’t think it’s lack of magnesium since the high amounts I was taking at the time - but I hadn’t really realized that Fludrocortisone specifically lowers calcium , I thought it was only potassium. If calcium is as important in muscle contraction as I’m reading - perhaps the larynx is not holding shape well which is what it’s always felt like to me due to calcium deficiency. Being able to actually move a structure in my throat and it considerably improving the breathing could maybe indicate a neuromuscular issue at some level. But not necessarily a neuromuscular disease. Everytime I lay down on my side it feels like walls of my throat slowly sink down till I’m wheezing. The first couple of breaths when I switch are always clearer until the same thing happens.



I’m leaning toward maybe calcium being the main issue. I already have EDS and an awful bowl issue which could be causing calcium malabsorption but I just plain old don’t eat dairy milk and barely ever any cheese. I would never have enough to fix a deficiency - and probably could cause a deficiency with diet alone. Aided with high dosing magnesium and Fludrocortisone/ prednsione and low vit d I may have caused a real lack of calcium in my body

Maybe that’s why I’ve been having so much costocondritis issues too.

The only thing is if it is as simple as a calcium I’d have to believe the calcium serum test would show okay levels even though I’m deficient. Can anybody comment if calcium blood serum tests are accurate or are they a misrepresentation similar to magnesium?
 

TheSir

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Interesting theory. You migh be onto something. Whether it's calcium or magnesium, getting more D would be crucial, otherwise no amount of supplementing might help.
The only thing is if it is as simple as a calcium I’d have to believe the calcium serum test would show okay levels even though I’m deficient. Can anybody comment if calcium blood serum tests are accurate or are they a misrepresentation similar to magnesium
Serum calcium alone won't tell much. Getting a parathyroid test will help. For ex. you could have a high serun calcium, but if your pth is high too, it could mean that your body is leeching calcium from bones in order to fix a deficiency, givin a false negative for calcium deficiency.
 

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Someone on the forum had seemingly very good results from very high doses of B2. (upwards of 800mg per day - that would be close to the amount needed for people with genetic riboflavin transporter deficiency) @GAF I believe. The person also struggled with EDS IIRC.
 
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youngsinatra

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Haidut posted this.

In interesting part is that the activation of folate is FAD-dependent. (the active metabolite of riboflavin/B2) So there seems to be a coherent picture. Riboflavin kinase (B2->FMN) and FAD synthesis (FMN -> FAD) is dependent on T3/Mg I believe.
 
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pubh12

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Interesting theory. You migh be onto something. Whether it's calcium or magnesium, getting more D would be crucial, otherwise no amount of supplementing might help.

Serum calcium alone won't tell much. Getting a parathyroid test will help. For ex. you could have a high serun calcium, but if your pth is high too, it could mean that your body is leeching calcium from bones in order to fix a deficiency, givin a false negative for calcium deficiency.
i asked for a parathyroid test but of course couldn’t get it. Hmmm. I do Have a bone scan coming up , perhaps that would show low calcium in the bones ?

D is low and probably messing with my calcium too. It’s the best theory I have so far. Im going to wait to test it out as im currently dealing with a sudden pulmonary effusion as complication from my lung surgery. Can’t catch a break it seems.
 
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pubh12

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Someone on the forum had seemingly very good results from very high doses of B2. (upwards of 800mg per day - that would be close to the amount needed for people with genetic riboflavin transporter deficiency) @GAF I believe. The person also struggled with EDS IIRC.
I don’t think I mentioned this in the OP but I’ve been taking around 400mg of B2 for a couple months. And was doing the methylfolate after seeing that EDS folate study a few months ago. Allithiamine seems to help the most.
 

ilovethesea

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There is a lot of information on Hormonesmatter.com about autonomic nervous system disregulation (autonomic nervous system controls the nasal cycle). It’s thiamine deficiency but also has to be in balance with magnesium.

Dr Lonsdale:

So I am going to describe a recent experience that illustrates how thiamine affected my autonomic nervous system. I had noted that when I ate virtually any food at all, my nose would run. One day I was eating some canned pears and I experienced a rather severe choking fit and my nose ran like a faucet. I was taking 300 mg of Lipothiamine (thiamine tetrahydrofurfuryl disulfide) and 200 mg of a magnesium salt. I concluded that the dose of TTFD was too great and lacking in balance with magnesium, which I increased to 400 mg. I reduced the dose of TTFD to 250 mg. Even within days, there was an improvement. The pharynx, esophagus, and nostrils are controlled by the ANS and the dose change was born out of my unique clinical and biochemical experience.

Also this post The Nasal Cycle: Sinusitis, Allergies, or Something Else?- Hormones Matter, this was one of the comments from Lonsdale:
This is a very important post. The subject is an adolescent who had GI surgery at birth and this may have caused the clinical havoc that followed. I will deal with each of his many symptoms one by one.
1. He is “highly emotional” indicating a pseudo hypoxic state (thiamine deficiency TD) of the hind brain. 2. He has asthma, indicating imbalance of the autonomic nervous system affecting the bronchial tubes from TD. 3. A permanently “drippy nose” indicating pathology of the autonomic control of the nasal cycle from TD. 4. Trouble sleeping from TD. We need energy to sleep. 5. Failure to get benefit from B complex and a trivial response from 50 mg thiamine.
We do not know what he eats or drinks when he meets his friends ? at the soda fountain. Soft drinks, like alcohol can cause TD.
Conclusion: this is flagrant thiamine deficiency in the hind brain that controls the autonomic nervous system. The intestinal surgery may have upset the microbiome causing a disastrous malabsorption of thiamine giving him GI beriberi. Or there may be a genetically determined absence of a thiamine transporter.
The solution is almost certainly a supplement of Lipothiamine. This does not need a transporter and is enteric coated to get it past the stomach acid into the jejunum where the coating is removed and thiamine absorption occurs. Start with 50 mg (1tablet) a day and if there is paradoxical worsening of symptoms, maintain that dose until paradox gives way to improvement. The dose can then be increased and titrated to symptom improvement. This should be accompanied by 125-250 mg of magnesium taurate or a similar salt. Please read about paradox on Hormones Matter. If you need more information buy our book advertised on HM. Ultimately, the asthma will cease, emotions will be healthy and he will sleep. If all this happens, perhaps his natural skepticism will cease and you all will be introduced to the fallacies of modern medicine.
 
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pubh12

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There is a lot of information on Hormonesmatter.com about autonomic nervous system disregulation (autonomic nervous system controls the nasal cycle). It’s thiamine deficiency but also has to be in balance with magnesium.

Dr Lonsdale:

So I am going to describe a recent experience that illustrates how thiamine affected my autonomic nervous system. I had noted that when I ate virtually any food at all, my nose would run. One day I was eating some canned pears and I experienced a rather severe choking fit and my nose ran like a faucet. I was taking 300 mg of Lipothiamine (thiamine tetrahydrofurfuryl disulfide) and 200 mg of a magnesium salt. I concluded that the dose of TTFD was too great and lacking in balance with magnesium, which I increased to 400 mg. I reduced the dose of TTFD to 250 mg. Even within days, there was an improvement. The pharynx, esophagus, and nostrils are controlled by the ANS and the dose change was born out of my unique clinical and biochemical experience.

Also this post The Nasal Cycle: Sinusitis, Allergies, or Something Else?- Hormones Matter, this was one of the comments from Lonsdale:
This is a very important post. The subject is an adolescent who had GI surgery at birth and this may have caused the clinical havoc that followed. I will deal with each of his many symptoms one by one.
1. He is “highly emotional” indicating a pseudo hypoxic state (thiamine deficiency TD) of the hind brain. 2. He has asthma, indicating imbalance of the autonomic nervous system affecting the bronchial tubes from TD. 3. A permanently “drippy nose” indicating pathology of the autonomic control of the nasal cycle from TD. 4. Trouble sleeping from TD. We need energy to sleep. 5. Failure to get benefit from B complex and a trivial response from 50 mg thiamine.
We do not know what he eats or drinks when he meets his friends ? at the soda fountain. Soft drinks, like alcohol can cause TD.
Conclusion: this is flagrant thiamine deficiency in the hind brain that controls the autonomic nervous system. The intestinal surgery may have upset the microbiome causing a disastrous malabsorption of thiamine giving him GI beriberi. Or there may be a genetically determined absence of a thiamine transporter.
The solution is almost certainly a supplement of Lipothiamine. This does not need a transporter and is enteric coated to get it past the stomach acid into the jejunum where the coating is removed and thiamine absorption occurs. Start with 50 mg (1tablet) a day and if there is paradoxical worsening of symptoms, maintain that dose until paradox gives way to improvement. The dose can then be increased and titrated to symptom improvement. This should be accompanied by 125-250 mg of magnesium taurate or a similar salt. Please read about paradox on Hormones Matter. If you need more information buy our book advertised on HM. Ultimately, the asthma will cease, emotions will be healthy and he will sleep. If all this happens, perhaps his natural skepticism will cease and you all will be introduced to the fallacies of modern medicine.
So autonomic breathing failure can result in narrowing airways ? Am I understanding that right ? Because there’s definitely some kind of issue with my upper airway not holding shape or something like that. I’m at around 400-450 mg allithiamine the last couple of days and I take two Magneisum malate a day with it.

@Peatress you mentioned going up to 900mg allithiamine is a very high dose. I read about that dose being used in this thread Thiamine Reduces Both Lactate And Ammonia
 
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So autonomic breathing failure can result in narrowing airways ? Am I understanding that right ? Because there’s definitely some kind of issue with my upper airway not holding shape or something like that. I’m at around 400-450 mg allithiamine the last couple of days and I take two Magneisum malate a day with it.

@Peatress you mentioned going up to 900mg allithiamine is a very high dose. I read about that dose being used in this thread Thiamine Reduces Both Lactate And Ammonia
I’m guessing in an acute emergency situations that would be fine but 900mg of allithiamine long term is, not only expensive, but it could cause problems. Did you work up to that dose or did you start at 900mg?

At the risk of sounding authoritarian, you’ve had recent CT scans and x-rays, would a bone density scan be worth the risk?

 
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pubh12

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I’m guessing in an acute emergency situations that would be fine but 900mg of allithiamine long term is, not only expensive, but it could cause problems. Did you work up to that dose or did you start at 900mg?

At the risk of sounding authoritarian, you’ve had recent CT scans and x-rays, would a bone density scan be worth the risk?

I wouldnt do It long term. I’m working up to it but I honestly don’t know if I’ll get it up that high.

What’s the risk with another scan? Radiation ?
 
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Peatress

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I wouldnt do It long term. I’m working up to it but I honestly don’t know if I’ll get it up that high.

What’s the risk with another scan? Radiation ?
Yes, radiation. That article explains why. Also, to be diagnosed with Ehlers-Danlos syndrome is a difficult task that involves multiply imaging such as x-rays and ct scans (sometimes MRI scans). A lung condition also warrants multiply imaging,. Therefore, it’s likely that you have already exceeded safe numbers of imaging (actually I don’t know if there is a safe level and if there was it would probably be zero). Due to your medical history I think it’s plausible that you may be at risk of bone loss – therefore, why not take action to improve your bone density without needing to confirm it and avoid the risk of more radiation damage? I believe a combination of radiation and Fludrocortisone/prednisone can cause all the symptoms attributed to EDS. That’s just my unlearned opinion.
 
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ilovethesea

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So autonomic breathing failure can result in narrowing airways ? Am I understanding that right ? Because there’s definitely some kind of issue with my upper airway not holding shape or something like that. I’m at around 400-450 mg allithiamine the last couple of days and I take two Magneisum malate a day with it.
I think so but search that site, I read a lot about all types of breathing issues, wheezing, asthma, sleep apnea etc. If I understand it right Lonsdale is saying all breathing issues are related to the ANS and thiamine deficiency causes it not to work properly.

You mentioned not being able to breathe lying down, I have that too and I’ve also read many posts on here about that, with nobody being able to figure it out. I really think thiamine deficiency might be a blind spot of Ray Peat’s. I was always sensitive to dust but I only started having frequent nasal congestion issues after I began this diet. I think all the sugar and coffee made it worse. I also struggle with the drippy nose just like Lonsdale describes. After trying everything else over the years I’m pretty sure it is thiamine deficiency.

I’m trying Now Thiamine HCL and Pure Encapsulations magnesium but still trying to figure out the dose of both. I got a lot of help from @mostlylurking who follows this protocol HDT Therapy
 

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I really think thiamine deficiency might be a blind spot of Ray Peat’s.
I don't think that thiamine was a major focus for Ray Peat, but he certainly was aware of it and recommended it multiple times.

That said, I think that Ray was focused mainly on thyroid and female hormones and the dangers of PUFA. I think that he would have really liked this study which delves into what omega 3 (salmon oil in the study) does to thiamine stores and how thiamine is protective from the ravages of PUFA:

I don't think that Ray Peat took much stock in the concept of the danger of sugar consumption in regards to thiamine status. He seemed to be pretty hostile about the book, Sweet and Dangerous by Yudkin whereas Dr. Lonsdale thought the book was fabulous. I think that book and its denigration of sugar was a sore point for Ray.

compare:

Sweet and Dangerous: Sugar and Thiamine Deficiency​

"In 1973, John Yudkin, a professor of nutrition in a large London Hospital wrote a book with the title “Sweet and Dangerous”, the result of his many years of research into the dangers of sugar. He reported that many diseases, including heart disease, were related to its ingestion. As so often happens, this terribly important book was ignored and cholesterol became the demon for the cause of heart disease. Now, 40 years later, many people know that the cholesterol story has been debunked. Because sugar requires vitamin B 1 to metabolize it, in much the same way as gasoline requires a spark plug to burn it, taking sugar on its own in the form of empty calories easily overwhelms the power of thiamine to carry out its function." (by Dr. Lonsdale)

and:
"One of the things was reading John Yudkin’s book, the English guy who wrote a book saying that sugar causes heart disease, and he was very clear showing that sugar increases cholesterol and that was back in the time when everyone was saying cholesterol causes heart disease. And I was very impressed by his research but since I saw cholesterol as a protective factor from studying progesterone, I saw that if you’re deficient in progesterone or under stress, your body would increase production of cholesterol to make more progesterone to protect your systems. And so I believed Yudkin was on the right track but since I say cholesterol as protective rather than harmful, I took his evidence to mean that sugar would helped resist stress, so that started me. Along that line – and I have been a migrainer for all my life and I gradually came see that a change in my rhythm of eating in relation to activity was usually what brought on a migraine attack. And often I would have very odd food cravings just before the migraine appeared and even shortly after eating, I would get food cravings and I started trusting those cravings and eating again, and I found that if I ate enough sweet stuff like a quart of ice cream when I felt a migraine coming on, it wouldn’t come on. And I was also a sort of a problem sleeper if I stayed up just an hour or two after my normal bed time, then my sleep would be disturbed even for a couple following nights. And one night I was talking on the radio and that I wanted to keep going hour after hour and I had a friend to go out and buy me huge milkshakes about one an hour and I was able to keep talking until 1: 00 AM, and didn’t have any problem at all going to sleep. And so I recognized that I had a peculiar need for sugar when I was doing anything unusually stressful, and so that started me thinking more about the physiology of it. (email message)" (Ray Peat quote).

I think that Ray's focus on the great attributes of sugar sort of blinded him to the down side of sugar in regard to thiamine status.

Please note that I have not read the Yudkin book so I don't know if thiamine was even discussed in it or if Dr. Lonsdale himself determined the danger of sugar regarding thiamine problems.
 
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pubh12

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I don't think that thiamine was a major focus for Ray Peat, but he certainly was aware of it and recommended it multiple times.

That said, I think that Ray was focused mainly on thyroid and female hormones and the dangers of PUFA. I think that he would have really liked this study which delves into what omega 3 (salmon oil in the study) does to thiamine stores and how thiamine is protective from the ravages of PUFA:

I don't think that Ray Peat took much stock in the concept of the danger of sugar consumption in regards to thiamine status. He seemed to be pretty hostile about the book, Sweet and Dangerous by Yudkin whereas Dr. Lonsdale thought the book was fabulous. I think that book and its denigration of sugar was a sore point for Ray.

compare:

Sweet and Dangerous: Sugar and Thiamine Deficiency​

"In 1973, John Yudkin, a professor of nutrition in a large London Hospital wrote a book with the title “Sweet and Dangerous”, the result of his many years of research into the dangers of sugar. He reported that many diseases, including heart disease, were related to its ingestion. As so often happens, this terribly important book was ignored and cholesterol became the demon for the cause of heart disease. Now, 40 years later, many people know that the cholesterol story has been debunked. Because sugar requires vitamin B 1 to metabolize it, in much the same way as gasoline requires a spark plug to burn it, taking sugar on its own in the form of empty calories easily overwhelms the power of thiamine to carry out its function." (by Dr. Lonsdale)

and:
"One of the things was reading John Yudkin’s book, the English guy who wrote a book saying that sugar causes heart disease, and he was very clear showing that sugar increases cholesterol and that was back in the time when everyone was saying cholesterol causes heart disease. And I was very impressed by his research but since I saw cholesterol as a protective factor from studying progesterone, I saw that if you’re deficient in progesterone or under stress, your body would increase production of cholesterol to make more progesterone to protect your systems. And so I believed Yudkin was on the right track but since I say cholesterol as protective rather than harmful, I took his evidence to mean that sugar would helped resist stress, so that started me. Along that line – and I have been a migrainer for all my life and I gradually came see that a change in my rhythm of eating in relation to activity was usually what brought on a migraine attack. And often I would have very odd food cravings just before the migraine appeared and even shortly after eating, I would get food cravings and I started trusting those cravings and eating again, and I found that if I ate enough sweet stuff like a quart of ice cream when I felt a migraine coming on, it wouldn’t come on. And I was also a sort of a problem sleeper if I stayed up just an hour or two after my normal bed time, then my sleep would be disturbed even for a couple following nights. And one night I was talking on the radio and that I wanted to keep going hour after hour and I had a friend to go out and buy me huge milkshakes about one an hour and I was able to keep talking until 1: 00 AM, and didn’t have any problem at all going to sleep. And so I recognized that I had a peculiar need for sugar when I was doing anything unusually stressful, and so that started me thinking more about the physiology of it. (email message)" (Ray Peat quote).

I think that Ray's focus on the great attributes of sugar sort of blinded him to the down side of sugar in regard to thiamine status.

Please note that I have not read the Yudkin book so I don't know if thiamine was even discussed in it or if Dr. Lonsdale himself determined the danger of sugar regarding thiamine problems.
Do you think thiamine deficiency could explain my breathing problems ? I’m not so sure
 
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Personally, I don't think Dr. Peat overlooked thiamine.

“Thiamine, vitamin B1, works with the respiratory enzymes, and of course you need all of them. B12 and B1 and biotin are very closely involved with the respiratory apparatus.” Ray Peat
 

mostlylurking

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Do you think thiamine deficiency could explain my breathing problems ? I’m not so sure
Look into the concept that breathing is controlled by the autonomic nervous system. This system makes body functions happen without you having to consciously think about them. Thiamine is needed by the autonomic nervous system.

"The lower part of the brain, called the brainstem, is a like computer, controlling the most basic aspects of survival, from breathing and heart rate, hunger and satiety, to fight or flight and reproduction. This computer-like function within the brainstem is called the autonomic system (ANS). The ANS together with the limbic system act in concert to regulate our most basic survival functions and behaviors. Both require thiamine to function."
 
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pubh12

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Look into the concept that breathing is controlled by the autonomic nervous system. This system makes body functions happen without you having to consciously think about them. Thiamine is needed by the autonomic nervous system.

"The lower part of the brain, called the brainstem, is a like computer, controlling the most basic aspects of survival, from breathing and heart rate, hunger and satiety, to fight or flight and reproduction. This computer-like function within the brainstem is called the autonomic system (ANS). The ANS together with the limbic system act in concert to regulate our most basic survival functions and behaviors. Both require thiamine to function."
My confusion is if that included muscular function like holding the airway open in the larynx , hypopharynx area. It’s not really a I forget to breath kind of thing that many people with ANS dysfunction experience.
 

ilovethesea

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Personally, I don't think Dr. Peat overlooked thiamine.

“Thiamine, vitamin B1, works with the respiratory enzymes, and of course you need all of them. B12 and B1 and biotin are very closely involved with the respiratory apparatus.” Ray Peat
I know he talked about it like that in a general way. But I haven’t seen him directly suggest thiamine supplementation to people struggling with breathing/allergy issues. I’ve even written to him myself. He talked about eliminating allergenic foods, supplements with excipients, zero starches. Nothing about thiamine though. Never heard any of the “Peat practitioners” talk about it either. It wasn’t until I saw Charlie’s thread about Lonsdale that I started to look into it.

There are so many people on here who’ve written about nasal congestion when lying down. Going down the pathway of Buteyko and mouth taping when maybe it’s as simple as correcting thiamine.
 
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