Measured high endogenous acetaldehyde blood levels, discovered something.

>Meirav B6 toxicity would have been more fitting because I had a blood test result for B6 of say something like 10 percent over the limit if I can remember. This was when I was very ill at the neurologist with mild polyneuropathy and such. B6 toxicity can cause neuropathy symptoms but those levels had to be a lot higher than mine to cause that as far as I know. A lot later I tested in the normal range for B6 so I don' t see it as very important I don't know what to think about it. But yes when I was very ill my skin reacted very strange to sun exposure.

In Cort's blog discussion you mentioned your facial skin redness / irritability, weight gain, food reactions, body odor changes and night sweats and such. All that I have experienced too. My joints were more flexible and prone to over-extending and literally my whole skeletal system was not "solid" anymore and I was very careful about that because I could hurt myself terrible when I made a wrong movement and such. Sorry I can't give extensive answers too your problems just keep following the acetaldehyde topic. Have you developed alcohol intolerance / strange reacting to btw ?

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>issie did you know that when I fell ill I actually looked into MCAS myself as a possible cause ? Also because of the flushing face and such. But it just didn't seem to explain all my symptoms and I never thought much about it anymore later on. I am more receptive now to the idea of MCAS for some explanation of some symptoms but then more seen as a result of the acetaldehyde excess. It creates the MCAS problem as secondary problem following it if you know what I mean.

I agree with what I think you meant with "labels" and such. The question is which is causing what ? As an example some people say "I have auto-immune problems" or something like that seen as a cause completely on its own. And maybe they really have something like that going on as a physical process but is that really what they have in the first place ? In reality it may all be actually triggered by something else.

This endogenous acetaldehyde problem seems to bring out all the weaknesses in an individual but they will be a bit different for each person.

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Something has to be "systemic" in the whole body to cause all the weird symptoms seen in people with ME / CFS I can' t stress that enough. The symptoms are too many. That is also why they don't believe us and think we are all making it up in our heads. But they are wrong and shortsighted because all those symptoms are as real as can be they just don't understand what causes it.

All the ideas being brought up and discussed everywhere so far as to what causes all these symptoms can never explain them all but it is my own experience that they are exactly correlated with my level of endogenous acetaldehyde. I personally think the chances of acetaldehyde being NOT involved in a lot of this is ZERO. So that makes it an important blood marker.

But there has never been any research done with endogenous acetaldehyde levels and people with such specific health problems. Not that I know ! As far as I know I am the only person in the world who has done an acetaldehyde blood test for my illness.
 

Issie

Well-Known Member
Addressing possible issues with too high acetaldehyde with diet and supplements is also helping my mast cell issues. So, I do feel there is a connection. Which came first????? I had started addressing mast cell issues with a totally different approach FIRST. It has taken me awhile to get that right. And then added on things to address both "cause" and "result" of possible/seeming too high acetaldehyde. What a difference that has made. Still tweaking! Made some royal mistakes with my tweaks too......but back on track now.

Need more time to analyze, but will keep adding as I'm more certain of positive results.
 

Issie

Well-Known Member
Also appears to be genetics at play. I have been doing a study on that and have access to my gene data and that seems a really good clue. And also issues with the MTHFR methylation cycle. More than just that gene. Especially with CBS issues and sulfur metabolism. There appears to be a connection with too high acetaldehyde and this being wonky genetically and functionally. A few more things in this pathway to be observed too.
 

Issie

Well-Known Member
As for B6........I tried to take it, and it too can take acetaldehyde down. Helped a few things initially, but caused some very vivid dreams and what Dejurgen and I are calling "narcolepsy light". Not restful sleep at all. And then a big backfire. Not something I intend to take again.

Maybe Dejurgen later will share the science we uncovered as to why the failed experiments.

Also, L- Carnitine, which should had taken acetaldehyde down, was also a disastrously failed experiment. Appears I took my acetaldehyde down too low. We need a certain amount and lowering too much........lowers dopamine. Not good for emotional well being. But was doing other things for acetaldehyde and that tipped me over too far. There is also science we connected, as to why that wasn't so good either. (And on paper, that should had been a good "fix", for many reasons.)

But, some of the other things have helped!!!!!

One thing I highly recommend is Nettle tea! Has helped us both. I use a little green leaf stevia or monk fruit to sweeten mine. Dejurgen doesn't sweeten his. But he also doesn't sweeten his coffee.....he likes the bitter taste and I don't.
 

dejurgen

Well-Known Member
"> Issie and dejurgen I am curious to what you come up with concerning supplements that may help in general."

For the past several years I have taken many supplements and never noticed them doing anything for me. Now Issie and I are zooming in to what our bodies react too. We both learned that fairly innocent changes can cause quite a strong reaction at times when we directly touch and modify a troublesome pathway. Some things that on paper should be helpful fire back strongly and others can only be taken in ridiculous small amounts and slowly build up over time or they backfire too.

We both tend to believe that many symptoms are the downsides of compensations mechanisms, like fever is not the disease itself with the flu but the unpleasant side effect of the body trying to kill the pathogens. Only if it becomes dangerous it seems to help health by suppressing it moderately. If it is moderate to start with, suppressing symptoms often makes healing more difficult. That could be one cause of backfiring.

The other chance to backfire is when we likely modify the right pathway, yet many other body processes seem to be long time modified in order to cope with that dysfunction. Trying to correct it at once doesn't balance out the new state with the old compensation mechanism. For example: when we are for years very often in partial hypoxia, our body will adapt to hypoxia and optimize many body processes in order that we can sort of function and survive with these lower amounts of oxygen. Then coming up with a way to restore oxygenation to near normal levels quickly is like getting a person that lived for years in a dark cave in clear sunlight. It will overload the body.

It will be clear that for now I will avoid mentioning things to try so long both Issie and I don't get it safe and working. There are far too many desperate people on Health Rising that are willing to try anything that makes another more healthy. I can understand that as I once was one of them. But many of them lack the careful approach, keen senses and deep study in biological pathways that we do. Therefore we must understand things better in order to not put people even weaker then us into harm. But we sure intend to get there sooner rather then later!

One thing that I believe in is trying to intervene at several points a bit over going all in at fighting a single hotspot in our disease. In the case of acetaldehyde: I believe in my case much of it is generated inside my cells and mitochondria due to frequent poor access to oxygen. Therefore I deem slowly starting with light circulation exercises and slowly building up to be an important part of building down acetaldehyde. Do so under the guidance of a good physical therapist for the best and safest results and go slower then what they would advice an 80 year old person at first. Good breathing therapy helped me a lot too.
 

dejurgen

Well-Known Member
But yes when I was very ill my skin reacted very strange to sun exposure.
UV radiation is a major source of oxidative stress and radicals generation in cells, potentially creating plenty of oxidated cell lipids and aldehydes with it. That in turn should mount an immune reaction to it that can resemble both an acetaldehyde/alcohol flush as well as an excema or other type of rash.

I don't try and downplay the acetaldehyde being formed from gut based pathogens or food. Those are more then difficult to tackle by themselves. But the acetaldehyde generated in the mitochondria themselves might be the most troublesome and hardest to detect even in the blood before it becomes rather extreme. The generation of high spikes of acetaldehyde this way IMO happening locally and in bursts mainly wont help understanding and detection.

MCAS seems to have several properties helping with the defense against mitochondria and own cell generated (acet)aldehydes but they do for sure come at a cost. The histamine can react with acetaldehyde lowering its concentration and it can dilute blood vessels both flushing it away from concentration hotspots towards the liver for decomposition. It can also help reduce the formation of new acetaldehyde by improving blood flow and oxygenation.

All is an act of balance however. Too much "improvement" in blood flow and too strong reperfusion (strong inflow of oxygen after a long time of local hypoxia) can do a lot more damage then good.
 

Meirav

Member
"Lipids and Oxidative Stress Associated with Ethanol-Induced Neurological Damage"

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* Alain Moreau found that vitamin C is low in a subset of males in the ME group he studied in Canada. Also, high in homocysteine.


I KNOW NOTHING

(I went briefly down this rabbit hole
while I'm working on another one.
These are just quick jots to be looked into / studied with time and seriousness)
 

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Issie

Well-Known Member
I looked into catalase too. Especially since I also have vitiligo and it has been determined it is low in vitiligo people. BUT, supplementing with it was one of my failed experiments. Made me feel sooooooo much worse.

Sometimes, things being lowered may have another reason and what seems to be an obvious "fix" may not work as desired. Lots has to be taken into consideration as there could be other reasons for it to be low. It may be a compensation. But just because it didn't work for me, doesn't mean it won't for someone else. But go very low and slow and pay very close attention. What Dejurgen takes, I can't. But have found similar other things for same desired response, that I can take.

But keep adding......love to have all the information. Together we may all find our "purple bandaids".
 
Just something because of the other post https://www.healthrising.org/forums/threads/is-the-link-between-cfs-autism-what-youve-been-looking-for.6375/

There are researchers who seriously consider that autism and ME / CFS could have something to do with each other and you get papers like

https://pubmed.ncbi.nlm.nih.gov/29738079/ " Patients With Chronic Fatigue Syndrome Do Not Score Higher on the Autism-Spectrum Quotient Than Healthy Controls: Comparison With Autism Spectrum Disorder "

That does not surprise me in the least of course, I mentioned it before : you can not expect that an adult person with ME / CFS under the influence of acetaldehyde suddenly becomes exactly the same as an autistic person. They are not "set" like that from an early age and it is reversible if you get the disease under control. But I can guarantee you that if a baby's brain right in their most important developing stage in the beginning of their life would have the same or even less acetaldehyde influence than what I have experienced when I was really ill it will change that baby's brain for the rest of their life. The brain will also "self-condition" itself differently permanently. This acetaldehyde stuff is toxic enough for that (most likely though the salsolinol and such neurotoxic effects).

But yes I am convinced that ME / CFS is the same process happening as autism just later in life.
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related : the site of Brooke Herrin is luckily online again also mentioned at https://www.healthrising.org/forums/threads/naviaux-the-me-cfs-autism-connection-and-a-treatment-success-a-new-website-opens.6071/

This is really interesting she developed ME / CFS with strange symptoms just like me later in life !


See especially paragraph onwards “When I was sixteen, I became ill with ME/CFS.”

She experienced : Hot flashes and flushing red, sweating, bladder control, speech effects, severe anxiety, irritable, bad social functioning, memory problems, sleep problems, sensory hypersensitivity and so on.

All those things just like me when I was the most ill / most acetaldehyde-drunk.
And she can vary her autism symptoms and severity.

In https://www.syndromea.org/2019/05/15/mast-cell-activation-syndrome-low-blood-volume/

she mentions "I flushed hot all the time in my face and ears and started getting hives like giant mosquito bites on my face. This happened every time I ate, for hours afterwards, every day."

Minus the mosquito hives thing in the face (although I definitely did have general hives-like things happening) this is exactly what I had with food / drink reactions. Strong flushing for hours afterwards.
 
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Issie

Well-Known Member
I found out one thing, the hard way.......it is all a matter of balance and homeostasis. We don't want to take acetaldehyde down too low. It does serve a purpose in the body and it is all a matter of balance. We don't want too much, but some is needed.

Same with histamine, we don't want too much.....but we need it.

What you talk about with the food reactions sounds like too much histamine without the H2 receptors putting the brakes on.
 

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