Measured high endogenous acetaldehyde blood levels, discovered something.

[AcH influenced]

Hi to you all, new here. I think I will skip the introduction part of the forum because it will speak for itself what it is about all in one go I guess. I believe I have a lot of things to tell you people out there that you will find very interesting, because I have very important news...

You see I have practically all of the general average ME / CFS symptoms and I have been very ill of it (doing just slightly better these days) but the interesting thing is that I actually found out what is causing all my problems ! Well, isn’t that something ?

They are all caused with something related to the digestive tract, my digestive tract seems to make acetaldehyde. Acetaldehyde is normally known for being the substance that your body converts ethanol (alcohol) into when you drink alcohol. But my body makes endogenous acetaldehyde without alcohol use, it does it itself all the time 24 hours a day.... So much that I actually was completely “drunk” of it although it is a strange kind of half-drunkenness without the ethanol part.

When I knew theoretically that high endogenous acetaldehyde levels were the biggest problem of my illness I was not satisfied knowing that and wanted to prove it. So I went to a toxicology lab and had my blood tested and the result was that I was walking around with approximately 10 times the amount of endogenous acetaldehyde that a normal person is allowed to have ! Is it any wonder that I felt so ill... Later when I managed to improve myself health wise I tested again and although my acetaldehyde levels had dropped quite a bit they were still too high. But it correlates with the severity of my illness. So I even have some actual proof of the cause of my illness, which is something really very special to have achieved I believe.

I had so much acetaldehyde circulating through my body that my skin turned completely permanently red as a firetruck / lobster with severe face flushing on top of that. And it is quite the toxic substance, absolutely nothing worked right anymore in my whole body it leads to severe physical illness with an unbelievable amount of physical complaints. And just as interesting is that it affects the brain a lot, I have actually discovered that acetaldehyde is a strong brain-influencing substance that makes the brain do all kind of weird things ! Overall normal functioning is completely gone...just like a person with ME / CFS. And all of the same complaints and symptoms. A complete physical wreck with all the mental health / brain issues too. And you “exist” but a life it is not... It’s gone. I understand completely what people mean by that.

When you read this please understand that I do not want to give any false hope for all you people out there. It may not be the complete answer. I can only tell you what it looks like and what my experiences are. And hopefully this will lead to something useful.
However I am not afraid to say that I believe that at least some of you have the same problem as me. The symptoms are so similar it almost has to be.
But I found out even more than something possibly related to ME / CFS....

I discovered the cause of Autism / spectrum conditions.

And yes I know that is a bold thing to say but I know how this works. I have been there all my life and therefore I can’t be wrong. You see I found out during and because of my illness that I am a just a little bit “in the spectrum” but I am an extremely mild case in its basis, “just a technical guy” something like that and I would not call myself Autistic with a capital A if you know what I mean. And I would not want it otherwise I am absolutely fine with it and it has lots of advantages too.
I now know that there are many people out there who you would not really call autistic but are a bit more “in the spectrum” and have been influenced by this.

However I have fallen completely into autism as my disease progressed..... and it is my digestive tract and the acetaldehyde that is the cause of this. It influences my brain and it rules my life.
The more severe cases of these “spectrum conditions” that is know as autism simply had more acetaldehyde influencing their brains than me for a period when they were a baby, and this “sets” itself permanently. What is interesting is that the very low acetaldehyde influence that I had never left me and increased during my life until it led to severe illness, and I started to have all the strong symptoms / properties of autism. There was always a strong relationship with autism and the digestive tract, but they are not looking in the right direction.

You all know that there has been quite a bit of discussion that ME / CFS has something in common with autism as if it is “autism at a later stage in life“ or something like it, well this is something to think about then whether it could have the same cause of excessive endogenous acetaldehyde.

I managed to make myself quite a bit better but I am still very ill and it is a very difficult disease to get rid of, I hope to tell you a lot about it in the future. Although I am very bad functioning and it may go a bit slow but I think we will get there in the end.

I started a website / blog at acetaldehydespectrum.com you might want to take a look at or follow, although at present there is very little on it, it is just a start and I decided to contact you all here at Healthrising because I know you would want to hear about it.

 

[Merida]

The autistic parents have commented that their kids do better when they are fasting for bowel studies. So, maybe diet can help? My son was / is mild on the spectrum, I think, and also has chronic fatigue. He is now 38 and doing some better with dietary changes - following the book Clean Gut by Dr. Junger. Thank you for sharing!

 

[AcH influenced]

Yep I have noticed the fasting effect too, sometimes things get a little better temporarily. I react strongly to different foods / drinks / herbs etc. When I was the most ill I could literally make myself “drunk” of acetaldehyde when taking sugar / fast acting carbs. So that is definitely something to avoid but going zero-carb has its own problems I have noticed. And though people can get lucky sometimes diet alone will not likely solve this problem... if it was only that easy, we would already know. Maybe your son is like me with the same problem ? I hope that what I can tell about my experiences may be useful to you both, thank you for the interest.

I can understand that people don’t know what to make of it all yet with what I have written down so far or whether it is important for ME/CFS but that is because I have not described my ME/CFS symptoms / problems in relationship with my higher acetaldehyde levels as a cause of it all yet and there is so much more to explain. I am working on that for my next post, but I am so badly functioning overall it often takes some time to do that.

And I am sure then you will all understand it better why it is so important what I found out. It will be much more clear then !

 

[Merida]

Yep I have noticed the fasting effect too, sometimes things get a little better temporarily. I react strongly to different foods / drinks / herbs etc. When I was the most ill I could literally make myself “drunk” of acetaldehyde when taking sugar / fast acting carbs. So that is definitely something to avoid but going zero-carb has its own problems I have noticed. And though people can get lucky sometimes diet alone will not likely solve this problem... if it was only that easy, we would already know. Maybe your son is like me with the same problem ? I hope that what I can tell about my experiences may be useful to you both, thank you for the interest.

I can understand that people don’t know what to make of it all yet with what I have written down so far or whether it is important for ME/CFS but that is because I have not described my ME/CFS symptoms / problems in relationship with my higher acetaldehyde levels as a cause of it all yet and there is so much more to explain. I am working on that for my next post, but I am so badly functioning overall it often takes some time to do that.

And I am sure then you will all understand it better why it is so important what I found out. It will be much more clear then !

My function is also very compromised. Get so tired. Think your post is new info, and important. Interesting: remembering that a new Asian tick is carrying an infective organism that causes red meat allergy. So, could other infective organisms ( retrovirus? Others? ) change metabolic responses to carbs and/ or other food stuffs? Please share your history when you can. My son got full blown CFS following lab documented EBV infection in 1986, age 5 ! Never totally recovered. He also had aspects of mild autism, and multiple learning differences, speech difficulties early on. Hugs. Reply when you can. I’m tired too, must lie down.

 

[dejurgen]

Thanks for joining in and sharing this very interesting information Ach influenced.

Having these high amounts of Acetaldehyde formed in your gut makes sense. And so the observation that it gets worse after eating fast sugars and carbs.

Acetaldehyde can be formed by several sorts of yeast. It's an intermediate step in the conversion pyruvate -> acetaldehyde -> ethanol. Pyruvate is very easily made from glucose (and maybe fructose, need to check that). It doesn't need to end up with alcohol or all alcohol so copious amounts of acetaldehyde can be made.

If you would have yeast infection/overgrowth of specific types in the bowel then you can absorb plenty of acetaldehyde from it. Know that some patients claim that blood vessels can be infected with yeast as well. Their they have good access to glucose as well.

In humans, alcohol normally is transformed in acetaldehyde by the enzyme pyruvate decarboxylase because alcohol is toxic, but so is acetaldehyde. It's thought that acetaldehyde is responsible for the hangover effect after drinking alcohol. When acetaldehyde levels are very high as it is with you, the reaction may theoretically go the other way producing alcohol in your blood. It is an equilibrium reaction going both ways. See https://en.wikipedia.org/wiki/Pyruvate_decarboxylase , the right hand picture. It would be interesting to get that tested.

The main yeast producing acetaldehyde seems to be https://en.wikipedia.org/wiki/Saccharomyces

Interesting reads:
"One example is Saccharomyces cerevisiae, which is used in making wine, bread, beer"
"Saccharomyces yeasts can form symbiotic matrices with bacteria, and are used to produce kombucha, kefir and ginger beer.
Saccharomyces fragilis, for example, is part of kefir cultures[2] and is being grown on the lactose contained in whey"

and

"Case report suggest extended exposure to S. cerevisiae can result in hypersensitivity."

The above may help changing diet when the problem indeed would occur in the gut. That would be better then in the blood vessels IMO. Maybe banning bread altogether may not be the best option. Replacing it by bread made out of sourdough may (or may not) offer competing species to counter this S. cerevisiae nasties if they cause the problem.

https://en.wikipedia.org/wiki/Sourdough:
"Sourdough is a stable culture of lactic acid bacteria and yeast in a mixture of flour and water."
"The most common yeast species in sourdough are Kazachstania exigua (Saccharomyces exiguous), Saccharomyces cerevisiae, Candida milleri, and Candida humilis."

It's hard to control the content of the yeast and S. cerevisiae is a common yeast specie in sourdough, but at the very least it would have competition of several different species and therefore likely be less dominant. It also has to compete with lactic acid bacteria. The lactic acid bacteria will compete with the yeast for sources of pyruvate. If your bread tastes sour, it will contain lactic acid bacteria. When these get a foothold in the gut, at least some pyruvate will be scooped away from the yeast leaving less sources to build acetaldehyde. The produced lactic acid will also slow down the growth of these competing yeasts. It's worth a try I guess.

As to the link with ME?
"Saccharomyces yeasts can form symbiotic matrices with bacteria"

We may both have some of these symbiotic matrices in our gut. Symbiosis makes their survival chances better then when living apart. Maybe you have mainly problems with the S. cerevisiae and some problem with the bacteria in the mix, while ME patients have mainly problems with the bacteria and gets some of this S. cerevisiae with some "free" acetaldehyde poisoning us, getting us closer to the autism spectrum?

 

[Cort]

Hi to you all, new here. I think I will skip the introduction part of the forum because it will speak for itself what it is about all in one go I guess. I believe I have a lot of things to tell you people out there that you will find very interesting, because I have very important news...

You see I have practically all of the general average ME / CFS symptoms and I have been very ill of it (doing just slightly better these days) but the interesting thing is that I actually found out what is causing all my problems ! Well, isn’t that something ?

They are all caused with something related to the digestive tract, my digestive tract seems to make acetaldehyde. Acetaldehyde is normally known for being the substance that your body converts ethanol (alcohol) into when you drink alcohol. But my body makes endogenous acetaldehyde without alcohol use, it does it itself all the time 24 hours a day.... So much that I actually was completely “drunk” of it although it is a strange kind of half-drunkenness without the ethanol part.

When I knew theoretically that high endogenous acetaldehyde levels were the biggest problem of my illness I was not satisfied knowing that and wanted to prove it. So I went to a toxicology lab and had my blood tested and the result was that I was walking around with approximately 10 times the amount of endogenous acetaldehyde that a normal person is allowed to have ! Is it any wonder that I felt so ill... Later when I managed to improve myself health wise I tested again and although my acetaldehyde levels had dropped quite a bit they were still too high. But it correlates with the severity of my illness. So I even have some actual proof of the cause of my illness, which is something really very special to have achieved I believe.

I had so much acetaldehyde circulating through my body that my skin turned completely permanently red as a firetruck / lobster with severe face flushing on top of that. And it is quite the toxic substance, absolutely nothing worked right anymore in my whole body it leads to severe physical illness with an unbelievable amount of physical complaints. And just as interesting is that it affects the brain a lot, I have actually discovered that acetaldehyde is a strong brain-influencing substance that makes the brain do all kind of weird things ! Overall normal functioning is completely gone...just like a person with ME / CFS. And all of the same complaints and symptoms. A complete physical wreck with all the mental health / brain issues too. And you “exist” but a life it is not... It’s gone. I understand completely what people mean by that.

When you read this please understand that I do not want to give any false hope for all you people out there. It may not be the complete answer. I can only tell you what it looks like and what my experiences are. And hopefully this will lead to something useful.
However I am not afraid to say that I believe that at least some of you have the same problem as me. The symptoms are so similar it almost has to be.
But I found out even more than something possibly related to ME / CFS....

I discovered the cause of Autism / spectrum conditions.

And yes I know that is a bold thing to say but I know how this works. I have been there all my life and therefore I can’t be wrong. You see I found out during and because of my illness that I am a just a little bit “in the spectrum” but I am an extremely mild case in its basis, “just a technical guy” something like that and I would not call myself Autistic with a capital A if you know what I mean. And I would not want it otherwise I am absolutely fine with it and it has lots of advantages too.
I now know that there are many people out there who you would not really call autistic but are a bit more “in the spectrum” and have been influenced by this.

However I have fallen completely into autism as my disease progressed..... and it is my digestive tract and the acetaldehyde that is the cause of this. It influences my brain and it rules my life.
The more severe cases of these “spectrum conditions” that is know as autism simply had more acetaldehyde influencing their brains than me for a period when they were a baby, and this “sets” itself permanently. What is interesting is that the very low acetaldehyde influence that I had never left me and increased during my life until it led to severe illness, and I started to have all the strong symptoms / properties of autism. There was always a strong relationship with autism and the digestive tract, but they are not looking in the right direction.

You all know that there has been quite a bit of discussion that ME / CFS has something in common with autism as if it is “autism at a later stage in life“ or something like it, well this is something to think about then whether it could have the same cause of excessive endogenous acetaldehyde.

I managed to make myself quite a bit better but I am still very ill and it is a very difficult disease to get rid of, I hope to tell you a lot about it in the future. Although I am very bad functioning and it may go a bit slow but I think we will get there in the end.

I started a website / blog at acetaldehydespectrum.com you might want to take a look at or follow, although at present there is very little on it, it is just a start and I decided to contact you all here at Healthrising because I know you would want to hear about it.

Thanks ACH - i definitely have the red face syndrome. I look forward to checking out your blog and thanks for posting your interesting finding here.

It must be part of the picture.

 

[Cort]

Thanks for joining in and sharing this very interesting information Ach influenced.

Having these high amounts of Acetaldehyde formed in your gut makes sense. And so the observation that it gets worse after eating fast sugars and carbs.

Acetaldehyde can be formed by several sorts of yeast. It's an intermediate step in the conversion pyruvate -> acetaldehyde -> ethanol. Pyruvate is very easily made from glucose (and maybe fructose, need to check that). It doesn't need to end up with alcohol or all alcohol so copious amounts of acetaldehyde can be made.

If you would have yeast infection/overgrowth of specific types in the bowel then you can absorb plenty of acetaldehyde from it. Know that some patients claim that blood vessels can be infected with yeast as well. Their they have good access to glucose as well.

In humans, alcohol normally is transformed in acetaldehyde by the enzyme pyruvate decarboxylase because alcohol is toxic, but so is acetaldehyde. It's thought that acetaldehyde is responsible for the hangover effect after drinking alcohol. When acetaldehyde levels are very high as it is with you, the reaction may theoretically go the other way producing alcohol in your blood. It is an equilibrium reaction going both ways. See https://en.wikipedia.org/wiki/Pyruvate_decarboxylase , the right hand picture. It would be interesting to get that tested.

The main yeast producing acetaldehyde seems to be https://en.wikipedia.org/wiki/Saccharomyces

Interesting reads:
"One example is Saccharomyces cerevisiae, which is used in making wine, bread, beer"
"Saccharomyces yeasts can form symbiotic matrices with bacteria, and are used to produce kombucha, kefir and ginger beer.
Saccharomyces fragilis, for example, is part of kefir cultures[2] and is being grown on the lactose contained in whey"

and

"Case report suggest extended exposure to S. cerevisiae can result in hypersensitivity."

The above may help changing diet when the problem indeed would occur in the gut. That would be better then in the blood vessels IMO. Maybe banning bread altogether may not be the best option. Replacing it by bread made out of sourdough may (or may not) offer competing species to counter this S. cerevisiae nasties if they cause the problem.

https://en.wikipedia.org/wiki/Sourdough:
"Sourdough is a stable culture of lactic acid bacteria and yeast in a mixture of flour and water."
"The most common yeast species in sourdough are Kazachstania exigua (Saccharomyces exiguous), Saccharomyces cerevisiae, Candida milleri, and Candida humilis."

It's hard to control the content of the yeast and S. cerevisiae is a common yeast specie in sourdough, but at the very least it would have competition of several different species and therefore likely be less dominant. It also has to compete with lactic acid bacteria. The lactic acid bacteria will compete with the yeast for sources of pyruvate. If your bread tastes sour, it will contain lactic acid bacteria. When these get a foothold in the gut, at least some pyruvate will be scooped away from the yeast leaving less sources to build acetaldehyde. The produced lactic acid will also slow down the growth of these competing yeasts. It's worth a try I guess.

As to the link with ME?
"Saccharomyces yeasts can form symbiotic matrices with bacteria"

We may both have some of these symbiotic matrices in our gut. Symbiosis makes their survival chances better then when living apart. Maybe you have mainly problems with the S. cerevisiae and some problem with the bacteria in the mix, while ME patients have mainly problems with the bacteria and gets some of this S. cerevisiae with some "free" acetaldehyde poisoning us, getting us closer to the autism spectrum?

Amazing your breadth of knowledge Dejurgen....!

 

[AcH influenced]

Thanks ACH - i definitely have the red face syndrome. I look forward to checking out your blog and thanks for posting your interesting finding here.

Hi Cort, well I think there might be more information going to appear on this nice forum then on my own website probably haha, but that is just fine by me, the most important thing is that the information reaches a lot of people. More about the redness problem later ! First something that I slowly have put together this week.

Thanks for joining in and sharing this very interesting information Ach influenced.

Having these high amounts of Acetaldehyde formed in your gut makes sense. And so the observation that it gets worse after eating fast sugars and carbs.

Acetaldehyde can be formed by several sorts of yeast. It's an intermediate step in the conversion pyruvate -> acetaldehyde -> ethanol. Pyruvate is very easily made from glucose (and maybe fructose, need to check that). It doesn't need to end up with alcohol or all alcohol so copious amounts of acetaldehyde can be made.

If you would have yeast infection/overgrowth of specific types in the bowel then you can absorb plenty of acetaldehyde from it. Know that some patients claim that blood vessels can be infected with yeast as well. Their they have good access to glucose as well.

In humans, alcohol normally is transformed in acetaldehyde by the enzyme pyruvate decarboxylase because alcohol is toxic, but so is acetaldehyde. It's thought that acetaldehyde is responsible for the hangover effect after drinking alcohol. When acetaldehyde levels are very high as it is with you, the reaction may theoretically go the other way producing alcohol in your blood. It is an equilibrium reaction going both ways. See https://en.wikipedia.org/wiki/Pyruvate_decarboxylase , the right hand picture. It would be interesting to get that tested.

The main yeast producing acetaldehyde seems to be https://en.wikipedia.org/wiki/Saccharomyces

Interesting reads:
"One example is Saccharomyces cerevisiae, which is used in making wine, bread, beer"
"Saccharomyces yeasts can form symbiotic matrices with bacteria, and are used to produce kombucha, kefir and ginger beer.
Saccharomyces fragilis, for example, is part of kefir cultures[2] and is being grown on the lactose contained in whey"

and

"Case report suggest extended exposure to S. cerevisiae can result in hypersensitivity."

The above may help changing diet when the problem indeed would occur in the gut. That would be better then in the blood vessels IMO. Maybe banning bread altogether may not be the best option. Replacing it by bread made out of sourdough may (or may not) offer competing species to counter this S. cerevisiae nasties if they cause the problem.

https://en.wikipedia.org/wiki/Sourdough:
"Sourdough is a stable culture of lactic acid bacteria and yeast in a mixture of flour and water."
"The most common yeast species in sourdough are Kazachstania exigua (Saccharomyces exiguous), Saccharomyces cerevisiae, Candida milleri, and Candida humilis."

It's hard to control the content of the yeast and S. cerevisiae is a common yeast specie in sourdough, but at the very least it would have competition of several different species and therefore likely be less dominant. It also has to compete with lactic acid bacteria. The lactic acid bacteria will compete with the yeast for sources of pyruvate. If your bread tastes sour, it will contain lactic acid bacteria. When these get a foothold in the gut, at least some pyruvate will be scooped away from the yeast leaving less sources to build acetaldehyde. The produced lactic acid will also slow down the growth of these competing yeasts. It's worth a try I guess.

As to the link with ME?
"Saccharomyces yeasts can form symbiotic matrices with bacteria"

We may both have some of these symbiotic matrices in our gut. Symbiosis makes their survival chances better then when living apart. Maybe you have mainly problems with the S. cerevisiae and some problem with the bacteria in the mix, while ME patients have mainly problems with the bacteria and gets some of this S. cerevisiae with some "free" acetaldehyde poisoning us, getting us closer to the autism spectrum?

dejurgen, some thoughts about it :

I had my blood samples tested for both ethanol (alcohol) and acetaldehyde. Knew already sort of what to expect but had to make certain that it could not be an auto-brewery syndrome ( ethanol production in the gut) that could produce both ethanol and (possibly resulting from that too) acetaldehyde. Also I had to eliminate that possibility because you can’t measure acetaldehyde in a blood sample when there is even the slightest trace of ethanol in it, that is impossible / extremely difficult. Ethanol result was below detection point ( was highly accurate ethanol measurement forensics laboratory = zero trace detectable in blood) so only acetaldehyde is produced in me !

It is mostly a stomach problem for me. Very quick effect when ingesting foods / drinks high in sugar / carbs etc. Also reacting to some herbs / seasonings. But highly interestingly also some stuff that is general anti fungal / antimicrobial in nature (strong reactions to Lugol for example, within minutes) In all cases acetaldehyde seems to be produced (strong flushing / feelings / feeling bad / more general illness effects) Something “reacts”. Effects get a lot less the less ill I am / become (seems that I have managed to kill something at least a bit...)

It is a really interesting thing to think about what sort of organism or organisms it could be and how it all would function. My own feeling about it is that it is just a single organism that does it all and it is more of an overgrowth thing than a sudden “infection”, had it all my life... just got out of hand. And I actually think this is not something very special and just a normal inhabitant in humans that simply got out of control in me. You don’t get it “systemic” of course, people get that wrong, however you could actually say that what it produces becomes completely systemic, the acetaldehyde reaches every part of the body.

I believe many people have this and also its influence without knowing, it is just very little, but it still influences them ! Part of human life. I even believe we have some symbiotic relationship with it. One thing I do know because I have been there : even low levels of endogenous acetaldehyde have way, WAY more effect than they could ever have imagined, but it is a hidden undiscovered effect in a life.

It would be a seriously interesting thing to actually research this all : measure the different endogenous acetaldehyde levels in people with all kinds of problems. But the tests need to be quite accurate, even just slightly higher than normal levels might already have some brain or physical effect. And the researchers just never made the link yet, they overlooked it. So there is no research happening at the moment...

So mostly stomach problem however when was very ill also small intestine / colon problems. Lots of bubbling / gas forming / motion in small intestine. Lots of sulfuric acid like horrible blubber diarrhea.. It seems however that the colon problems is mostly an “end-result” of what is going on higher up. I treated it with anti fungal / anti-Candida stuff + low carb / keto now after long time in a practical sense not much of a bad digestive tract problem anymore. It worked somewhat. All general symptoms get less by treating my digestive tract. But still long way to go, very difficult problem to get rid of !

 

[AcH influenced]

Well I wanted to write an extensive concise list with my symptoms and explanations for it but there are times I cannot write anything down because of dysfunctioning, I have that sometimes and have to wait a couple of days before it is possible. I am also not much of a writer (never liked the process) so if I am away for a couple of days you know why. Sometimes I just want to relax, do nothing or only do things that come natural at the moment without stress. I really want to give you all lots of information but for me it is all a real load on top of my illness, just another difficult extra thing in my life to do. What somebody else types in a couple of minutes sometimes takes me days. This disease turns you into a snail with only half the brain function it seems.... I just mention a few now so you have at least something to think about. I will describe it as if in peak of severity in illness (now better, some things have gone away / gotten less).

- Severe fatigue / crashes / no energy. Exactly as described in ME / CFS. Everything feels heavy and is difficult. Everything physical that I do will have a consequence in the future that I have to recover from in a couple of days. Mental effort same thing. Need constant rest / recuperating in everyday life. Everything normal in life becomes a problem that has to be overcome. The constant 24 hour a day background level of acetaldehyde seems to rob all the available energy away from me in some way.

- Pain. Everywhere.... practically no part of my body that not hurts in some way. Was a complete wreck, run over by a bus is a good description. The acetaldehyde seems to create pain on a living tissue level in the body everywhere. It makes you into a complete wussy too, I was literally afraid of falling because I knew how painful it would be, I did everything careful and deliberate. Joint pain : I have had severe joint pain everywhere, I was also a cripple at times could hardly walk...

- Muscles : prolonged exercise of the same muscle is not possible. Weakness : maximum strength is a whole lot less. I have had it that opening / stretching and closing my hand 10 times rendered them completely unusable. Could not use my computer-mouse or keyboard anymore at times. Muscle-pain and some sort of cramp-like things.

- The alcohol intolerance / different reacting to : the more ill I get the more this effect, goes completely linear with severity of illness. So IF ( and not WHEN ! ) I drink alcohol I can’t handle as much as normal and it has more negative and strange effects. It becomes more easily “overwhelming”. You become more drunk than usual on the acetaldehyde part of it, it has its own qualities in itself that are actually part of what it is to be under the influence of alcohol. I become even more red skinned and start to flush because of the higher converted acetaldehyde level on top of my already higher endogenous acetaldehyde level !

- Shortness of breath : this is a MAJOR sign of my illness ! Severe shortness of breath when
putting an effort into just anything... Just a single staircase was difficult and I had to do that slowly and recover when I was up there. Working out or something like that is absolutely completely impossible. And when I push it / put too much effort into something I start to feel REALLY bad, I get the feeling as if a heavy thick iron plate lies on my chest while my heart beats hard and tries to pump blood around and you really think at those times “do I get a heart attack from this ?”
It is however not a heart or long problem on itself, those organs are fine, but what seems to happen is that the acetaldehyde does something with the oxygen uptake / transport or the oxygen exchange happening in the blood or into the organ or something like that.

- Sleep : I NEVER feel rested anymore no matter how much or how long I sleep. Unrefreshing and disturbs sleep rhythm completely and the pattern is never the same, but also insomnia when you want to sleep. Shorter sleep cycles, slept 3 times a day. The acetaldehyde disturbs sleep. Problems follow severity of illness exactly linear ! The more acetaldehyde, the more sleep disturbance ! Who could ever have thought that sleep problems could be related to the digestive tract ? Really, that is such an interesting find if you think about it.... Well I claim to have discovered it

- Polyneuropathy / nerve pain / numbness / tingling sensations : I had mild polyneuropathy legs confirmed by EMG. It is a strange thing to have pain and numbness at the same time. I have had it that I could not feel the front half of my feet anymore ( like a solid numb block) Tapping fingers on a surface felt like I had been working with a pneumatic hammer for to long. Really weird, even all the nerves of my teeth hurt a bit so it is a general nerve-thing throughout the body. The acetaldehyde does something with nerves that makes them give of signals / makes them sensitive / gives of (pain-) signals but also numbness etc.

- the lymph node thing : mostly neck / under my jaw. Swollen and slightly painful when pressing. Comes and goes a bit in severity but practically always present.

-the sore throat thing : continuously inflamed painful mouth and throat, painful thicker tongue, sometimes slightly more difficulty swallowing.

- Dry eyes and mouth : I have used many, many eye-droplets to make me feel comfortable again throughout the day and when I woke up in the night. Really dry mouth. In the development of my illness I really thought it could be Sjogren syndrome ! Also because of the other auto-immune like symptoms.


More symptom describing some other time when I feel up to it, but I do want to mention especially that the acetaldehyde does very weird but interesting things to the brain. That is such a big topic on itself how on earth can I even begin to describe all those things ?
But this acetaldehyde stuff really messes with your brain in so many ways. What I can definitely say is that it gives me all those typical ME / CFS brain problems.

Also : if a person has something like this a lot of these shortsighted doctors and researchers mistakenly think that a lot of these symptoms are psychological in nature, but they are not ! The brain is under the influence of a weird drug-like substance, and it just functions differently. Someone who has this is simply a victim of it and can’t help it or override it with willpower, it is a brain-functioning problem mechanistic in its nature.

 

[dejurgen]

It is mostly a stomach problem for me.

Hi AcH,

I looked into it a bit deeper as there are some things I can related too.

Let me start with:

It is mostly a stomach problem for me. Very quick effect when ingesting foods / drinks high in sugar / carbs etc. Also reacting to some herbs / seasonings.

Problems I originally thought that originated from the stomach do strongly seem to originate from the big bowel in my case. Within an hour or sometimes as little as 5 minutes after starting eating (certain?) food, my belly began rumbling. Often around the hour after starting eating mark I got belly aches. I guessed it had to be the stomach, as food can't go that fast from mouth to gut. But then I learned that my small intestine very likely starts "peristaltic movement" of the food from the small intestine to the large intestine (preparing to make place for when the food leaves the stomach?). That goes hand in hand with the initial rumbling of my belly. It's rumbling but gas production is present but limited.

Somewhere between half an hour and several hours later gas production is way up. It didn't make sense as it shouldn't happen that fast (specially the half hour mark). But then I realized there was plenty of food for the bacteria in the large intestine to feed on. That is, plenty of "rich" fiber containing food coming from small intestine and ending up in the large intestine where gut bacteria have for the first time massive access to it (if you don't have bad SIBO). It also coincides with sharp rising pain at the location where the small and large gut are connected. So I would not dismiss the (large) gut to be the location of trouble too soon. It seems the amount of small gut movement depends on what and how much (weight and volume) I eat so that could explain that some extent a different reaction to different food or spices.

It is mostly a stomach problem for me.

The reason I started to consider the gut over the stomach is both my personal experience and the fact that very few micro organisms are known to survive longtime in the stomach. I assume it's micro organisms and not your own cells that do produce this acetylaldehyde as producing it without a source of alcohol is far more a thing of micro organisms then human body cells. In the human body the generally accepted idea seems to be that our cells only produce it out of ethanol, not out of pyruvate.

Larger organisms like parasites can survive IMO, but I did not find any connection between them and acetylaldehyde. So there was only one big suspect left: Helicobacter Pylori. That's one of the very few micro organisms that thrives in the stomach.

First thing I did found is that Helicobacter Pylori indeed can produce acetaldehyde, but the paper discussed it as "from alcohol". So that does not fit your case. It also mentioned some other bacteria that can produce acetaldehyde but does not mention location nor from what they convert it. See https://www.sciencedirect.com/science/article/abs/pii/002432059290632Y

Looking further to see if there was a study on the reverse process, production of acetaldehyde from food/pyruvate by Helicobacter Pylori, I did found indeed there is such evidence: https://www.tandfonline.com/doi/abs/10.3109/00365529409094841

"By virtue of possessing alcohol dehydrogenase activity, cytosol prepared from Helicobacter pylori produces toxic acetaldehyde from ethanol in vitro. To approach the in vivo situation in the stomach, we have now investigated whether intact H. pylori–without addition of exogenous nicotinamide adenine dinucleotide–also forms acetaldehyde. Furthermore, to assess the energy metabolism of H. pylori, we determined whether the alcohol dehydrogenase-catalyzed reaction can run in the opposite direction with ethanol as the end-product and thereby yield energy for the organism. Intact H. pylori formed acetaldehyde already at low ethanol concentrations (at 0.5% ethanol, acetaldehyde, 64 ± 21 and 75 ± 9 Hmo0 (mean ± SEM) for strains NCTC 11637 and NCTC 11638, respectively). H. pylori produced ethanol in concentrations that can be significant for the energy metabolism of the organism."

So yes, Helicobacter Pylori, the only known bacteria that thrives in the stomach, can produce acetaldehyde from food (as well as from ethanol).

=> Did you ever test for H. Pylori? There are some specialized tests for it and you need often to combine results of multiple tests to have a sufficient degree of certainty. There does also exist very specific antibiotics that leave most other organisms intact and only need to be taken shortly if what I heard is correct. A new test then is needed to see if H. Pylori is eradicated and if new treatment is needed.

If the test is not done, it may be worth doing so. I think I'll might look into it as well as I suspected I may have H. Pylori as well and your symptom description sounds a bit too familiar with me. I just thought it was but one and not that important problem.

H. Pylori can also live in mouth (between teeth and on a white deposit at the back of the tongue) and in the gut but that is not it's main habitat.

 

[dejurgen]

So mostly stomach problem however when was very ill also small intestine / colon problems. Lots of bubbling / gas forming / motion in small intestine. Lots of sulfuric acid like horrible blubber diarrhea

Would you ever had blood in the stool when having either that horrible blubber diarrhea or, if it alternated with stone dry constipation like in my case, with bad constipation. Asking because your description sounds sounds not uncommon.

 

[dejurgen]

Not all holds of what you described in your last comment, but it sounds you describe how I feel *very* well. I tend to see that as a warning sign I may share a bit more of your problems then I anticipated. While I don't feel to have any Autisitc behavior now (apart from being more rigid in doing things and interacting with people as my brain forces me to do so in order to save energy IMO), I probably would have qualified for some sort of autism spectrum disorder at my early childhood.

For *some* aspects your words hit closer then what many patients with ME do when describing their symptoms.

it has its own qualities in itself that are actually part of what it is to be under the influence of alcohol

I have this when drinking beer without alcohol. I get half the "alcohol" effect without any alcohol in it. After I learned I have plenty food intollerances, I attributed it to my moderate wheat intollerance. But in fact that is the only intollerance that is moderate so I would not expect such clear effect of drinking 1/3 of a liter non-alcohol beer. It could be the combination of the yeast in it (many brews of beer contain plenty of somewhat alive yeast in it) or much of the wheat being predigested by yeast leaving "pre-processed" food ingredients ideal for rapid acetaldehyde formation by alive mirco organisms like H. Pylori.

As to the bread discussion of previous comment: the baking process should kill most yeast but some bread is not baken well enough. Doesn't mean you should go for over-baked bread. That has it's own set of problems.

Unrefreshing and disturbs sleep rhythm completely and the pattern is never the same

Would that involve increased frequency of waking up over time, like waking up a lot of times near the end of the night and "moving around" the bed each time you wake up? Would it involve increasing frequencies of nightmares near the end of the night?

Also: why exactly do you divide sleep into 3 times a day? I divide sleep just as well and it helps me. What is the more elaborate reason to do so and what problem does it resolve?

Shortness of breath : this is a MAJOR sign of my illness ! Severe shortness of breath when
putting an effort into just anything... Just a single staircase was difficult and I had to do that slowly and recover when I was up there. Working out or something like that is absolutely completely impossible. And when I push it / put too much effort into something I start to feel REALLY bad, I get the feeling as if a heavy thick iron plate lies on my chest while my heart beats hard and tries to pump blood around

Would that happen to often get (a lot) worse during the night (and again especially late night)? Would the feeling to get not enough breath go hand in hand with very deep (or fast) breathing (at night), both rapid and intense hart beat and being "adrenaline pumped up"?

If so, would dividing your sleep into 3 parts have helped reducing these problems to a clear extend?

Dry eyes and mouth

No flushing skin here. Maybe I lack the needed blood volume for it (as ME patients often have low blood volume). But dry mouth and eyes and red eyes like in https://acetaldehydetoxicity.com/toxicity/ but less bad are common. The later could be due to wearing contact lenses however.

It is however not a heart or long problem on itself, those organs are fine, but what seems to happen is that the acetaldehyde does something with the oxygen uptake / transport or the oxygen exchange happening in the blood or into the organ or something like that.

You seem to be a clear observer ;-). I agree. You'll love my next comment!

 

[dejurgen]

Well I wanted to write an extensive concise list with my symptoms and explanations for it but there are times I cannot write anything down because of dysfunctioning

Thanks for having put in the effort! I learned plenty from it. Just take care of your energy envelope!

It took but reading a few lines that, while you claim your disease is different from ME, you use the words to describe ME symptoms that only "true" ME patients do. I mean that I never met a person that did not experience these symptoms by himself fully understands when trying to explain these symptoms, let alone they can describe them accurately themselves.

Now IF you are correct that you don't have ME then that is helping me a lot. With IF I don't question your observations and deep understanding of your health problems. It's that we're both not a doctor and even doctors often disagree to what is or is not ME.

I'm working with Cort to write a blog on "the oxidative stress core element". It's going slower then desired as I still have problems when things get complex. Complexity tends to block me and let my brain go bananas. But that is a huge improvement over the time I had trouble writing short pieces of text like you experience now.

The idea is that one can look at ME as a set of distinct disease mechanisms that interact. Many of the symptoms we experience would in this model be the result of specific mechanism being triggered. Some mechanisms would be "damage type", others would try and reduce damage. Many to most symptoms would in this model result from mechanisms trying to save us.

One such proposed mechanism is the "oxidative stress core element". The idea is that, when oxidative stress gets chronically and body wide strongly increased, the cells MUST reduce energy production and go into a sort of hibernation mode in order to protect against devastating oxidative stress damage. I'm working on detailed biological pathways and there seem to be plenty of specific pathways that all enable/encourage the cells to reduce energy production a lot and increase anti-oxidant production a lot when oxidative stress gets rampant.

So I searched for "actealdehyde oxidative stress" and it was an instant hit. See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4078068/ with title "Acetaldehyde is an oxidative stressor for gastric epithelial cells"

Even small amounts from 0.01 to 0.02% volume based acetaldehyde double to triple oxidative stress present in cell in vitro (figure 3).

That doesn't even take into account that oxidative stress production is probably a lot higher as with increased oxidative stress production also anti-oxidants become more active, meaning that for example a five fold increase in H202 production rate may yield a significantly lower increase in H202 present in the cells as more H202 will most likely increase H202 clean up rate as well.

Figure 1 also shows the devastating effect of acetaldehyde on cell survival rates. And that aren't even brain cells which are highly sensitive to toxins!

If you indeed would have a disease sufficiently different from ME then it would be more then a serious indication that this hypothetical "oxidative stress shifter core" would be real and would convert massive body wide chronic oxidative stress to massive chronic cell hibernation and its slew of symptoms going with it.

In ME a chronic strong immune activation could be the source of this high oxidative stress. The immune system produces plenty of it when attacking pathogens and uses plenty of NADPH, needed for glutathione recycling. In your case, chronically high body wide acetaldehyde levels may trigger this massive oxidative stress. Once massive levels of chronic oxidative stress are generated, the "resolving" mechanism may be largely identical except for a few pathways influenced by specific chemicals present. Hence that would make symptoms so identical and potentially point to a core mechanism in both diseases.

As to the question: but if autism was related to this hibernation mechanism, wouldn't most people with autism have very few energy too, I'll write the following:

Oxidative stress by itself does influence cell repair and division. So if that happens during childhood then probably even moderately increased chronic oxidative stress levels can affect brain development. These levels may not cause full hibernation but be sufficient for impacting brain growth and development.

ME most often develops at a later age, when the brain is largely full grown. An adult brain has very few cell growth and division so this would not impact structure as bad as when the oxidative stress occurred during childhood.

Probably you mentioned it, but I'm too tired to reread now. Did your symptoms started early on but only increased a lot after childhood? That could yield the combination of a mild autism aspect and severe ME like symptoms later in life.

Question: what tests do determine acetaldehyde in blood reliable? Is it affordable? Is it "exotic (convincing a doctor to do any testing is an art by itself with ME :-()?

 

[AcH influenced]

dejurgen, bad week for me but I managed to write the following, more later about your thoughts.

You getting a bit “drunk-like” on the alcohol-free beer, now THAT is really something that you mention that yourself out of the blue.... and coupled with dry bloodshot eyes / dry mouth / digestive tract problems could be a sign that you have the same problem as me. Alcohol-free beer is like the perfect “food” for whatever lives inside me, it is liquid bread.... And I could make myself acetaldehyde-drunk with it and make my symptoms worse.

I could make myself go into a daily “dreamy” acetaldehyde-drunk state when taking sugar / carbs.
So interesting... a “half-drunk” state is something special I can tell you. You get more thoughts in your brain in some way, I hope to tell more about that in the future what it does to the brain.

I also want to mention that it is part of the “wired but tired” effect. The acetaldehyde has an energy component to it and it gives that effect also in the brain but at the same time you can’t use it because it also makes you incredibly tired and ill and dysfunctioning. Strange combination of having 2 things at the same time !

My eyes were completely bloodshot on and on 24 hours a day from the endogenous acetaldehyde, just like an Asian person with the ALDH problem who drinks alcohol.

Can you make yourself “acetaldehyde-drunk” ? Maybe test it out a bit ? Wear glasses for a couple of days while taking that alcohol-free beer / carbs / bread / sugary drinks. See if is really bloodshot eyes and whether your complaints get more severe ? Testing if you get reactions when drinking Lugol in water also is a good way, I believe it could even serve as a sort of a test whether a person has this problem.... I react strongly very quickly to that stuff but it is not the Lugol that is doing that.... It is whatever lives in me that does not like the Lugol that does that. It reacts and punishes you for doing so !

Have you changed the way you eat because of your ME / CFS problems ?

I know about H. Pylori but I have had a hospital endoscopy because of my stomach problems and they took several tissue samples that tested for it. It was negative so my guess is that is the best reliable way to test for it ? So no H. Pylori... Also acetaldehyde seems to be produced directly so no ethanol pathway necessary. Plus reactions and acetaldehyde production of things that can never be considered “food” for whatever lives there, as if the organism has a “reservoir” of acetaldehyde ready to influence you. Although I do believe that if I drink alcohol then there is indeed more acetaldehyde converted from it. Candida can produce acetaldehyde directly from sugars and convert ethanol to acetaldehyde too as far as I know, so both seem to be right in that aspect.

Acidic blubber diarrhea is typical for candida overgrowth they say. All carbs / sugar are converted to this acidic blubber diarrhea I have tested this out, there is absolutely no doubt about that, that is my experience when it was severe. Stool sample was high in candida amount although I think they are not reliable enough to say how severe it all is or whether it says something about it in stomach / small intestine. If candida then not the white fluffy stuff but must be the hyphal phase. Whatever it is it acts “as if it is candida”.....what else can I say ? No blood ever in stools. Only trying to kill it with general anti fungal stuff + low carb improved situation. No probiotics no veggies no healthy whole grains no fiber nothing of that stuff, only denying it food and killing it helped so far. Interesting : meat and fat seems neutral stuff, but I do react to seasonings a bit. The more low carb / keto, the stronger the reactions treating it ! You become very sensitive then to everything. Seems to be part of the problem.

What is so incredibly interesting is that you can have so many symptoms / influence with very little gut problems.... it was there but just not much of a problem, still ruined my life for a large part looking back. Completely hidden illness. It ruled me. People can be ill without understanding that it is actually caused by a digestive tract problem.

 

[dejurgen]

I searched for "iodine acetaldehyde" and did find:

http://www.labchem.com/tools/msds/msds/LC15590.pdf
"Incompatible materials Ammonia. Strong oxidizers. aluminum. Aldehydes."

and

https://aip.scitation.org/doi/10.1063/1.1725113

"The reaction is initiated by an iodine atom attack on acetaldehyde to abstract a hydrogen atom and produce hydrogen iodide and an acetyl radical."

and

https://cameochemicals.noaa.gov/chemical/25035

"IODINE is an oxidizing agent. Reacts vigorously with reducing materials. Incompatible with powdered metals in the presence of water (ignites), with gaseous or aqueous ammonia (forms explosive products), with acetylene (reacts explosively), with acetaldehyde (violent reaction),..."

Sounds like acetaldehyde is not compatible with iodine products, and Lugol appears to be an iodine product. Maybe it is a cheap but violent test for acetaldehyde. Note of importance: iodine can cause strong allergic reactions in rare cases:

http://dept.harpercollege.edu/chemistry/msds/Iodine Fisher.pdf

"Rare instances of allergic reactions to topical iodine solutions characterized by fever and generalized skin eruptions have lead to death. At least one death after topical application of a strong iodine tincture to one-third of the body has been recorded."

 

[AcH influenced]

Holy crap dejurgen what sort of toxic stuff have I been ingesting all this time ? But those links that you gave describe it in its pure form mostly and then of course substances can be very dangerous. Lugol is usually a 5 percent solution of that and you dilute that even further in water so not much of a problem. You can find a lot of info about people taking that stuff online. Everything can have its drawbacks / dangers that people should be aware of but it seems relatively safe, at least for a while. Never ingest topical Iodine products and such, they are different.

Even just a little bit of Lugol gave me quite a reaction when I started taking that stuff, which got progressively less as my disease got better. Lugol was the thing that helped me the most and made my illness a bit less. You don’t test for acetaldehyde, but I mean that you test for the organism that makes the acetaldehyde, it does not like it very much in my experience ! So the idea is that you now found the cause of your illness.

Which is actually a real problem, because if something makes a person feel worse when taking it as a treatment, they have a tendency to stop doing that. I mean why take something that makes you feel worse, right ? But unfortunately that is how it seems to work with this problem and you have to work yourself though it somehow and after a while I noticed that if I stopped treatment, I felt just a little better than before. But man this organism seems difficult to kill.... and it will make you suffer all the way. It is not a “herxheimer” reaction, but more of a “reacting to” and just maybe ? a little bit of die-off something like that what is causing it.

 

[AcH influenced]

Would that involve increased frequency of waking up over time, like waking up a lot of times near the end of the night and "moving around" the bed each time you wake up? Would it involve increasing frequencies of nightmares near the end of the night?

Also: why exactly do you divide sleep into 3 times a day? I divide sleep just as well and it helps me. What is the more elaborate reason to do so and what problem does it resolve?

I do not divide my sleep with a purpose, it is just the way it goes and there is not much that I can do about. More ill = shorter nighttime but more naps. Sleep times practically never the same, constantly varying. But of course when I was very ill ( at times my bed was soaking wet from sweating, just overall very ill in general) then I woke up many times in the night and falling asleep again in a diseased state. But overall the portion of sleeping at night is never as long as normal. Nowadays because I am better usually 2 times sleeping. The less ill I get the more I move towards a normal sleeping pattern and the sleep quality gets better, you crash less because of wanting to sleep / rest, and I feel better after sleeping. And what I said : amazing that this whole sleep pattern and quality follows disease severity EXACTLY, it is a true direct process involving the influence of the level of acetaldehyde it seems. Really, really interesting.... Not necessarily more nightmares but with strange sleeping patterns you get more waking up with a dream and noticing it anyway I think.

An almost flat lowish saliva cortisol curve by the way too, yet another thing so common in ME / CFS.

Would that happen to often get (a lot) worse during the night (and again especially late night)? Would the feeling to get not enough breath go hand in hand with very deep (or fast) breathing (at night), both rapid and intense hart beat and being "adrenaline pumped up"?

If so, would dividing your sleep into 3 parts have helped reducing these problems to a clear extend?

Not especially at night and it also does not solve anything when sleeping different. But what I did have was some strange kind of “air hunger” doing nothing lying in bed, but not like hyperventilation. Where I had the feeling as if the normal breathing was not enough. What I can tell you is that say 10 years before I fell ill I could do a workout on a cross-trainer in the gym and after 15 minutes or so of steady workout everything went bad, increasing hart rate through the roof and having to stop because of hyperventilation / over-breathing during the workout, could not get the oxygen to work in my body it seems... And I can remember myself thinking about that then “this does not make sense, this is not normal for a work-out exercise, it is not the same thing as being in a bad physical shape / condition, what is this ??”

I have read someone else posting that kind of experience with that “hyperventilation -like / over-breathing experience “ when exercising so that seems to be happening more ?

It is all a part of the problem and very interesting to think how that would all work. Something happens with the oxygen exchange mechanism in the blood. Shortness of breath is a key component in it all.

Just a thought : you make someone quite drunk and put them on a treadmill. Can they produce the same output like when sober ? Can they run a marathon ? There must have been research done on that but I really doubt that haha. Maybe it is the higher acetaldehyde levels that prevents that and plays a part in it....

I'm working with Cort to write a blog on "the oxidative stress core element". It's going slower then desired as I still have problems when things get complex. Complexity tends to block me and let my brain go bananas. But that is a huge improvement over the time I had trouble writing short pieces of text like you experience now.

The idea is that one can look at ME as a set of distinct disease mechanisms that interact. Many of the symptoms we experience would in this model be the result of specific mechanism being triggered. Some mechanisms would be "damage type", others would try and reduce damage. Many to most symptoms would in this model result from mechanisms trying to save us.

One such proposed mechanism is the "oxidative stress core element". The idea is that, when oxidative stress gets chronically and body wide strongly increased, the cells MUST reduce energy production and go into a sort of hibernation mode in order to protect against devastating oxidative stress damage. I'm working on detailed biological pathways and there seem to be plenty of specific pathways that all enable/encourage the cells to reduce energy production a lot and increase anti-oxidant production a lot when oxidative stress gets rampant.

So I searched for "actealdehyde oxidative stress" and it was an instant hit. See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4078068/ with title "Acetaldehyde is an oxidative stressor for gastric epithelial cells"

Even small amounts from 0.01 to 0.02% volume based acetaldehyde double to triple oxidative stress present in cell in vitro (figure 3).

That doesn't even take into account that oxidative stress production is probably a lot higher as with increased oxidative stress production also anti-oxidants become more active, meaning that for example a five fold increase in H202 production rate may yield a significantly lower increase in H202 present in the cells as more H202 will most likely increase H202 clean up rate as well.

Figure 1 also shows the devastating effect of acetaldehyde on cell survival rates. And that aren't even brain cells which are highly sensitive to toxins!

If you indeed would have a disease sufficiently different from ME then it would be more then a serious indication that this hypothetical "oxidative stress shifter core" would be real and would convert massive body wide chronic oxidative stress to massive chronic cell hibernation and its slew of symptoms going with it.

In ME a chronic strong immune activation could be the source of this high oxidative stress. The immune system produces plenty of it when attacking pathogens and uses plenty of NADPH, needed for glutathione recycling. In your case, chronically high body wide acetaldehyde levels may trigger this massive oxidative stress. Once massive levels of chronic oxidative stress are generated, the "resolving" mechanism may be largely identical except for a few pathways influenced by specific chemicals present. Hence that would make symptoms so identical and potentially point to a core mechanism in both diseases.

As to the question: but if autism was related to this hibernation mechanism, wouldn't most people with autism have very few energy too, I'll write the following:

Oxidative stress by itself does influence cell repair and division. So if that happens during childhood then probably even moderately increased chronic oxidative stress levels can affect brain development. These levels may not cause full hibernation but be sufficient for impacting brain growth and development.

ME most often develops at a later age, when the brain is largely full grown. An adult brain has very few cell growth and division so this would not impact structure as bad as when the oxidative stress occurred during childhood.

You seem to know a lot about this and that could be (part of) the way it all works. I look at it very simply less = better and only know that this acetaldehyde is quite the nasty stuff in my own experience. But it also possesses a lot of special qualities. I think you will find plenty info about its bad properties and how it influences biological things. I think that it indeed affects cells in their overall functioning.

The interesting thing to keep in mind is that acetaldehyde is, in some way, a natural substance occurring in the human body. Slightly higher than usual levels will not exactly kill you right away because of that but it will give problems if the levels get too much.

Probably you mentioned it, but I'm too tired to reread now. Did your symptoms started early on but only increased a lot after childhood? That could yield the combination of a mild autism aspect and severe ME like symptoms later in life.

Well I sort of tried to summarize that in my first blog post on my website but it is all the same process at work during my whole life.... From my earliest memory on, only the severity differs. It is a really weird thing to have in your life really ! It is just that I was unaware of it until I fell really ill.

There is a reason why some researchers think ME / CFS could have a link with autism / sc. The way the brain starts to work in ME / CFS gives rise to that idea, you start seeing some things that are somewhat the same. I watched many a documentary of autism and ME / CFS and I get it, there is something about the general function which leads to such ideas.

But obviously you can not expect that if you take a neurotypical adult person, and if you would just add a lot of acetaldehyde to them, that they would suddenly become completely autistic... it just does not work that way. They are not the “set” variety of the acetaldehyde influence to begin with. They are adults, they just start to have brain dysfunction in a lot of different ways and hopefully that is reversible if you take the influence away.

My own symptoms in a both physical and brain way match the symptoms of ME / CFS so much that I am not at all afraid to say that a whole lot of people out there have the same problem as me. The question remains if it is the same and only cause for ALL of the people with ME / CFS...

The symptoms of ME / CFS are way too wide and varied concerning the whole body. And that is quite the special thing to have actually if you think about it. To have it influence everything means that there must be something wrong at a very basic level. It can not be otherwise. Especially that it affects brain functioning is just weird you don’t see that a lot with other physical illnesses. And a lot of these ideas that go around about the cause of ME / CFS simply can not explain that all together. Nice ideas but... they just can not be true.

But in my own experience these higher endogenous acetaldehyde levels really DO seem to explain the body-wide symptoms.... Its effects are literally everywhere, the amount of symptoms is simply bizarre ( and that is also why doctors / researchers just don’t believe it / get it ).
And of course everyone is not exactly the same, so you will still see differences in how it will show itself. One will get a bit more of this and another more of that etc...

Question: what tests do determine acetaldehyde in blood reliable? Is it affordable? Is it "exotic (convincing a doctor to do any testing is an art by itself with ME :-()?

Hahaha , with “exotic” I had images of palm trees for quite a while thinking of better times afterwards ! But yeah something like that. I will get back at that.

 

[dejurgen]

You getting a bit “drunk-like” on the alcohol-free beer, now THAT is really something that you mention that yourself out of the blue.... and coupled with dry bloodshot eyes / dry mouth / digestive tract problems could be a sign that you have the same problem as me.

My eyes aren't that bad as in the pictures I saw, but the problem is known to me. Hydrogen peroxide (oxidative stress) can cause red eyes too. I learned that when putting in my contact lenses with poorly neutralized disinfectant (hydrogen peroxide solution). Then it gets as bad or worse as the pictures I've seen.

Stool has improved a lot lately. I used to had a bunch of "rotating" smells so it wasn't always acid type stool. That was not the dominant smell. I also had odorless, sulfuric and sort of a sweet buteric acid kind of smell. It's still oscillating between too loose and too hard. But I'd say I'd hesitate to call it any longer real diarrhea and real constipation. That's quite an improvement. It's oscillating faster then before with sometimes the "front part" of the stool constipated and the "rear part" loose.

The first improvement was diet: find out more precise what I am intolerant too and avoid it. The second part: take daily twice an small amount of Psyllium caps. It's sort of undigestable fiber in powder form, but encapsulated. I achieve best results if I take it twice a day no matter if I have loose or hard stool. I think it works by providing very large amounts of surface area allowing the gut bacteria to stick to this surface and thus binding these bacteria and some of their side products to the fiber rather then to the gut wall. As such, the gut wall *might* "see" both less bacteria and toxic chemicals and hence have less of an immune response to it and absorb less toxins. If you haven't tried it yet, it might work for you too as your gut problems seem related too mine. Start with small amounts (my current daily dose is 750 mg) and look out for products "enriched" with prebiotics. My gut reacts very poor to those prebiotics.

I'd rather not try the provoking diet to see if I get red eyes. Last time I provoked my food intolerances badly my disease reacted like a ferocious beast. It took months to normalize my health again and my gut must have been injured pretty bad by it, judging by the amount of intense blood red stools I had for 2 weeks after it. But I could leave out my 1-month lasting contacts when I have to renew them.

I also will explore the few things I'll write in the next posts. I think you might find some things in it very interesting.

 

[dejurgen]

The similarity of your food intolerance list to mine and the annoying nausea I had today gave me a flash-back:

I have really high pancreas enzymes and so does my mom. I strongly believe it was amylase to be specific but I can't remember where I did put the lab tests and don't find it. First time my mom got a blood test the doctor responded by "this can't be wright, we'll have to redo this test". She had pancreas enzymes as high as a heavy alcoholic while she obviously ain't one. But results remained very high the second test. I appeared to have the same deviation as here. As it didn't seem to cause any problems he left it like that.

Fast forward last year when I discovered papaya with it's protein digesting enzymes worked really well for me. Then I recalled that old pancreas test again and the pancreas is involved in digesting proteins. I started to believe these enzymes might be off again. I only was puzzled why they were so long in range and would pop up again. Still, I got my doctor convinced to do the test while he had to check for my cholesterol anyways. And yes, results were far too high again. When I asked my doctor how they could have been all these years so low in between two very high readings, he answered "It's not a standard test. As it is unspecific (meaning it could point to several hard to find causes) the test is no longer paid for by insurance." Now that clarifies "being in range" ;-) :-(.

Fast forward to today and combine it with severe gut problems *potentially* caused by acetaldehyde, dry eyes and mouth, headaches and "pancreatic values like those of a heavy alcoholic" for both my mom and me and wham, we may have a hit.

Acetaldehyde IS the major byproduct of alcohol so maybe the test did read high acetaldehyde levels.

 

[dejurgen]

So I searched for the combination of pancreas amylase test and acetaldehyde. I did find several papers that claimed high acetaldehyde levels should inhibit amylase production, the opposite of what I believe might happen with me.

Now call it cherry picking, searching until I find something that fits my ideas or good intuition. I continued looking as this ain't wright. I don't doubt the test results in those papers, but they used a drug to inhibit acetaldehyde breakdown. And that is not the supposed case and may have side effects.

After some searching I did found https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1358491/ with title
"The role of acetaldehyde in the pathogenesis of acute alcoholic pancreatitis."

Note that these high pancreas values could indicate acute or chronic pancreatitis. So this title kinda related to what I was looking for.

This is what I did find in it:
"Acetaldehyde (AA), the first product of ethanol metabolism, has been suggested as an important mediator in alcoholic pancreatitis, but experimental evidence has not been convincing."
"Prior work using the isolated perfused canine pancreas preparation has suggested that toxic oxygen metabolites generated by xanthine oxidase (XO) may mediate the early injury in pancreatitis. Xanthine oxidase is capable of oxidizing AA, and during this oxidation free radicals are released."
"The hypothesis that acute alcoholic pancreatitis may be initiated by AA in the presence of active XO (converted from xanthine dehydrogenase [XD]) was tested in the authors' experimental preparation by converting XD to XO by a period of ischemia, and infusing AA."

=> xanthine dehydrogynase (a body chemical) is converted to active xanthine oxidase !!!by a period of ischemia!!! that is used in the test setup. Ischemia is likely a major component of ME and it's problems getting oxygen and low blood volumes and low blood flow.

"One hour of ischemia followed by infusion of AA at 50 mg/hr or at 250 mg/hr induced edema, hemorrhage, weight gain (22 +/- 7 g [p less than 0.05] and 26 +/- 17 g [p less than 0.05]) and hyperamylasemia (2249 +/- 1034 U/dL [p less than 0.05] and 2602 +/- 1412 U/dL [p less than 0.05])."

=> note of mine: this happened only whit the combination ischemia and infusion of acetaldehyde. Doing one of them separately yielded different results.

=> So yes, acetaldehyde can induce hyperamylasemia rather then a shortage as the more artificial tests suggest and induce edema and hemorrhage (blood red stool after eating food I am intolerant too).

=> many of us don't have edema but if the hemorrhage would not only be in the bowel but throughout the body and brain then that would be a very good reason to reduce blood volumes as I hypothesized in the past. You kinda need sufficient blood to "hemorrhage well". Removing water a plenty with urine is a common thing in ME. So the (local) edema induced by the combination acetaldehyde / XO could be masked by the chronic response to remove water a plenty out of the body once ME sets in. I happened to change from having a lifetime of very low weight and very difficult weight gain to very rapid weight gain and a swollen look at the onset of increasingly rapid health decline.

"Pancreatitis induced by 1 hour of ischemia followed by AA at 50 mg/hr could be inhibited by pretreatment with the free radical scavengers superoxide dismutase and catalase and ameliorated with the XO inhibitor allopurinol."
"Toxic oxygen metabolites appear to play an important intermediary role."