Measured high endogenous acetaldehyde blood levels, discovered something.

[AcH influenced]

>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 ?

----

>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.

----

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]

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]

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]

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]

"> 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]

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]

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

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4753689/pdf/OMCL2016-1543809.pdf

* 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)

 

[Issie]

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".

 

[AcH influenced]

Just something because of the other post https://www.healthrising.org/forums...-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.
-----

related : the site of Brooke Herrin is luckily online again also mentioned at https://www.healthrising.org/forums...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 !

On Autism & Chronic Fatigue Syndrome - Syndrome A

On Autism & Chronic Fatigue Syndrome When I was in second grade, a little girl started calling me Weird One. I was elated. I felt that I had been knighted with some sort of public identity and it felt wonderful. I felt as though I belonged in some way and I hardly ever felt

www.syndromea.org

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.

 

[Issie]

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.

 

[Issie]

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".

I found this information on catalase. Appears it ups acetaldehyde in the brain. But they don't think it has that same effect peripherally.

Role of Acetaldehyde in Mediating the Pharmacological and Behavioral Effects of Alcohol

Acetaldehyde is the first active breakdown product (i.e., metabolite) generated during alcohol metabolism. It has toxic properties but also exerts other actions on the body (i.e., has pharmacological properties). Recent studies have shown that the direct ...

www.ncbi.nlm.nih.gov

Catalase plays an important role in acetaldehyde production in the brain, and manipulations of catalase levels were shown to alter acetaldehyde concentrations when brain tissue studied in vitro was treated with ethanol (Smith et al. 1997). Similarly, catalase inhibition is expected to decrease brain acetaldehyde concentrations, and catalase activation is expected to increase brain acetaldehyde levels after ethanol administration in vivo. However, catalase only marginally contributes to ethanol metabolism in the liver, and experimental manipulation of catalase activity therefore should have no significant effects on peripheral acetaldehyde levels.

 

[Issie]

That being said, as I mentioned before.......balance with acetaldehyde is what is important. Take acetaldehyde down too far and it possibly lowers dopamine. (I seemed to cause this to happen recently with one of my supplement experiments.)
____________
Some finds I had too in this search:

very interesting but very complex:

Mitochondrial composition and function under the control of hypoxia

Hypoxia triggers several mechanisms to adapt cells to a low oxygen environment. Mitochondria are major consumers of oxygen and a potential source of reactive oxygen species (ROS). In response to hypoxia they exchange or modify distinct subunits of the ...

www.ncbi.nlm.nih.gov

"Mitochondrial composition and function under the control of hypoxia"

Hypoxia and mitochondrial oxidative metabolism

It is now clear that mitochondrial defects are associated with a large variety of clinical phenotypes. This is the result of the mitochondria's centra…

www.sciencedirect.com

"Hypoxia and mitochondrial oxidative metabolism"

Ethanol and acetaldehyde action on central dopamine systems: Mechanisms, modulation and relationship to stress

There has been a great deal of activity in recent years in the study of the direct effects of ethanol on the dopamine reward system originating in the ventral tegmental area (VTA). In addition, recent evidence suggests that acetaldehyde formed from ethanol ...

www.ncbi.nlm.nih.gov

Acetaldehyde in the VTA in vitro
In line with the in vivo reports on the effects of acetaldehyde on posterior VTA mentioned above (Foddai et al., 2004; Rodd-Henricks et al., 2002), in vitro electrophysiology of posterior VTA dopamine neurons also supports a crucial role played by acetaldehyde in alcohol-induced activation of midbrain dopamine cells (Melis et al., 2007). Indeed, ethanol-induced excitation of posterior VTA dopamine cells in a midbrain slice preparation appears to require ethanol’s first metabolite (i.e. acetaldehyde), since an inhibitor of catalase is able to completely prevent ethanol’s actions on VTA dopamine neuronal firing activity (Melis et al., 2007). It is important to stress that the above-mentioned study focuses on posterior VTA dopamine neurons, which have previously been shown to play not only a key role in alcohol rewarding and/or reinforcing actions in vivo (Rodd et al., 2004a; Rodd et al., 2005a; Rodd et al., 2005b; Rodd-Henricks et al., 2002), but also to be more sensitive to the rewarding properties of ethanol in those rat lines selectively bred for their alcohol preference (Rodd et al., 2004b; Rodd et al., 2007). Interestingly, it has been shown that the medial posterior VTA is a quadrant of this region with a substantial population of hyperpolarization activated inward current (i.e. Ih)-dopamine neurons (Margolis et al., 2008), primarily projecting to the NAc (Ford et al., 2006). It is, therefore, more likely that dopamine neurons located in this quadrant of the VTA form the mesolimbic dopamine system, which has long been implicated in reward-related learning, motivated behaviour and memory processes (for a review see (Alcaro et al., 2007). Given this key distinction, conflicting reports can be considered from a different point of view, especially given the thoroughly established heterogeneity of dopamine cell populations within the VTA (Ford et al., 2006; Lammel et al., 2008; Margolis et al., 2006a; Margolis et al., 2006b; Margolis et al., 2008; Wanat et al., 2008a).

Since, however, the hydrogen peroxide-catalase system is highly abundant in the VTA (Hung and Lee, 1998), we must consider the possibility that ethanol is oxidized in the VTA. Thus, the observation that when acetaldehyde formation is prevented, ethanol ceased to enhance the spike frequency of dopamine neurons, strongly suggests that acetaldehyde mediates ethanol-induced effects on dopamine neuronal spontaneous activity. In addition, the evidence that acetaldehyde per se produces a fast increase in dopamine neuronal firing activity, which is dose-dependent, and it occurs in a smaller dose range when compared to ethanol, substantiates this hypothesis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778604/#S7title

Both ethanol and acetaldehyde increase the spontaneous activity of dopamine VTA neurons, and at least some of the actions of ethanol may be produced by the formation of acetaldehyde from ethanol in the brain. As increases of dopamine neurotransmission are associated with the rewarding and reinforcing properties of drugs of abuse, these actions of ethanol and acetaldehyde may be critical for ethanol-seeking behavior. Stress also increases the spontaneous discharge of dopamine VTA neurons. Stress may act as a priming event, increasing dopamine activity altering the physiology of dopamine VTA neurons,
________
glutamate and dopamine together give that OCD affect. 50% one article said. So glutamate is playing into the dopamine cycle too.
_________

Acetaldehyde increases dopaminergic neuronal activity in the VTA - PubMed

Acetaldehyde is the first and principal metabolite of ethanol administered systemically. To its rise in blood, after administration of disulfiram, is ascribed the aversive reaction that should discourage alcoholics from drinking. In the present study, we sought to determine the effect of...

pubmed.ncbi.nlm.nih.gov

acetaldehyde produces electrophysiological actions on VTA neurons in vivo, similar to those produced by ethanol, and significantly participate in ethanol-induced increment in DA neuronal activity.

(PDF) Acetaldehyde effects in the brain

PDF | The effects of alcohol have been widely studied during the past century as alcohol abuse is a major health problem in Western society. In the last... | Find, read and cite all the research you need on ResearchGate

www.researchgate.net

acetaldehyde is able to stimulate dopamine release in the nucleus accumbens through enhancement of firing rate, spikes/burst, and burst firing of ventral tegmental neurons

 

[Meirav]

I have found that taurine helps me.
I did get amino acids tested and it was the lowest one
I studied it carefully, to make sure that supplementing wouldn't make things worse.
and then tried it.

It helped me with:

1. cognition: the dementia light, ability to concentrate, overall sense of calmness
2. sleep: falling asleep at more normal hours, staying asleep and having restful sleep.
3. cardiovascular: stabilized my pulse pressure (the difference between systolic and diastolic). I still get POTS - I just don't get the symptoms that go along with it as much. My body is able to retain water, and I'm no longer drinking 3+ liters a day, not peeing and sweating it out anytime I am upright, and thus I'm hoping this will make a dent on my sodium/potassium levels (they are both low) too soon to tell.
4. Did it affect my eyes? They are better - but maybe indirectly.
5. Digestion: I am able to expand my dietary options, less allergic reactions. This goes in conjunction of reducing histamine in general (i.e. nettle infusions)

As always, too soon to tell if this will be a sustained effect.

Liver is high in taurine. So that is another route, if you can tolerate animal protein. It also has glycine, which also has a role in bile salts (amongst other functions). I got the tip to feed the (sick) garden cat with raw liver, it strengthens their immune system. (A feral and I cannot give her medicines). It's been amazing what it did to her health, daily for a few months. Tfu tfu tfu.
We are not cats but I am a Katz.

If you are interested in trying it, I advise to have your levels checked first.
And I also have a strategy for how to do it through the medical system, so it is not something you pay out of pocket, if you are interested.
And to also be careful not to take too much - either in supplement or liver form.
At first even though the body needs it, might need to slowly ramp up. I learned the hard way... I may have messed up the balance and wrecked something along the way... Knowing how different our states are, I wouldn't be surprised if it did nothing for some or worse, the opposite effect. Definitely try to get tested first.
It's advised to take closer to bedtime, in between meals, but if too irritating, then with food OK.
Low and slow - sprinkles.

Taurine regulates calcium transport in the cell and acts on bile acid - we've got digestion problems, yes?
Endogenous acetaldehyde levels can have different sources. If one of them is from faulty breakdown of proteins and food in our gut - I deduce that addressing stomach acid if that is a problem for the person, that can perhaps have an impact and can also 'allow' you to tolerate and eat more foods again. Enjoy life and not have such a restrictive diet. Plus all the improvements in health.

I haven't reached homeostasis yet - there are other things I tinker with, and let's see how that goes.

Examine.com

Examine simplifies nutrition and supplementation — through meticulous analysis of the latest scientific research — to help answer your questions on how to be healthier.

examine.com

interesting - there's a study on blood flows in diabetics.

Error - Cookies Turned Off

faseb.onlinelibrary.wiley.com

In good health!

 

[Meirav]

● https://academic.oup.com/alcalc/article/36/1/39/138001

● https://academic.oup.com/alcalc/article/36/1/39/138001

● https://onlinelibrary.wiley.com/doi/abs/10.1002/jnr.10027

● https://www.elynsgroup.com/journal/article/taurine-metabolism-in-humans

● https://www.sciencedirect.com/science/article/pii/S1347861315001826


● https://faseb.onlinelibrary.wiley.com/doi/abs/10.1096/fasebj.2019.33.1_supplement.765.1

● https://www.spandidos-publications.com/10.3892/mmr.2014.2544
​

 

[Issie]

Glad its working well for you Meirav.

It had been one thing I tried too. Didn't tolerate it. Thinking partly because of wonky CBS methylation dysfunction and issues breaking down sulfur and proteins. And taurine can add to sulfur load. Only reason I can figure out why possibly, as I couldn't tolerate even small amounts. It also connects and goes down pathways of GABA and I have some sort of issues there and it going into more glutamate vs GABA. A paradox response, and not a desired one either. Just the opposite of what they say it should do. And beta alanine didn't work for me either. Though, L- Carnosine has been a great help and it is made of beta alanine and histidine. And it is working well for me. (Sometimes, its the correct combination to send it in the correct pathway.)

This shows how CBS methylation dysfunction can affect both sulfur and create more ammonia.

The CBS Genes and Sulfur Metabolism: What to Know - Gene Food

Changes in the CBS genes change the way the body metabolizes sulfur. However, CBS gene variants are common and shouldn't be the sole basis for a new diet.

www.mygenefood.com

I have found supporting bile with a bitters spray before a meal, especially ones with proteins, to be helpful. And taking digestive enzymes mid meal to also be of benefit. Using bitters (is also an alternative to TMG, (that I don't tolerate) and helps with methylation) before a meal, ups that acid a bit and helps bile too, aiding with digestion.

Testing for stomach acids is also a good thing to do and can be done with baking soda. (Directions on-line.)

Nice to hear when one has potentially found themselves a nice "purple bandaid". I sure do hope it keeps working for you.

Dejurgen tried it too. (It wasn't something he stuck with either.) But, sure worth a try. Only one way to find out. What is great for one, may not work for another. But when it does......... CELEBRATE ?

Thanks for sharing!

 

[dejurgen]

And alanine didn't work for me either. Though, L- Carnosine has been a great help and it is made of alanine and histidine.

You seem to have forgot to add BETA Issie ;-).
BETA-alanine for those looking into it. In healthy people the synthesis of L-carnosine requires beta-alanine and histidine. Again in healthy people beta-alanine is the rate limiting resource in L-carnosine production.

I do fairly well with a modest amount of beta-analine. I use it rather then the way more expensive L-carnosine for saving money. Trying L-carnosine instead is on my long list of things to try.

Note: There is *some* chance that L-carnosine might be less ideal for people with H. Pylori or SIBO. What is good for you *might* also be good for those buggers. When providing beta-analine instead they lack histidine to make L-carnosine to protect themselves against acetaldehyde. Acetaldehyde is toxic for them too at elevated levels.

The strength of L-carnosine is that it is absorbed inside the cells including those of heart and brain and scavenges / "mops up" acetaldehyde *inside* the cells. Excessive ROS can produce acetaldehyde inside the cells as a byproduct of damaging the cell walls. It doesn't help to stop this oxidative stress damage of the cell walls directly, but it helps according to us reduce the toxic effects of acetaldehyde and the "vicious circle" of acetaldehyde creating more ROS creating more acetaldehyde creating more ROS...

So L-carnosine and / or beta-analine *can* IMO be of help for those that would generate themselves ROS *inside* (?near all of?) their own cells.

Note to those experimenting: "just" upping it is not without risk. Changing levels too much too quick can create a strong shift in osmolality. In plain English: it can damage nerves and brain cells *UP TO DEADLY EFFECT* when going wild.

Such a strong shift in osmolality is part of "refeeding syndrome" where starving people can suddenly die by eating a normal full meal at once to refeed.

Issie BTW got bad MCAS when taking beta-analine but does fine on modest levels of L-carnosine. The reason may be that she has bad MCAS, related to histamine intolerance and histamine has to be not too low nor too high. Histamine is made from histidine. That component *can* possibly get depleted if you have histamine issues and top up with beta-analine (as adding beta-analine takes histidine from the body to produce L-carnosine).

 

[dejurgen]

I have found that taurine helps me.
I did get amino acids tested and it was the lowest one
I studied it carefully, to make sure that supplementing wouldn't make things worse.
and then tried it.

It helped me with:

1. cognition: the dementia light, ability to concentrate, overall sense of calmness
2. sleep: falling asleep at more normal hours, staying asleep and having restful sleep.
3. cardiovascular: stabilized my pulse pressure (the difference between systolic and diastolic). I still get POTS - I just don't get the symptoms that go along with it as much. My body is able to retain water, and I'm no longer drinking 3+ liters a day, not peeing and sweating it out anytime I am upright, and thus I'm hoping this will make a dent on my sodium/potassium levels (they are both low) too soon to tell.
4. Did it affect my eyes? They are better - but maybe indirectly.
5. Digestion: I am able to expand my dietary options, less allergic reactions. This goes in conjunction of reducing histamine in general (i.e. nettle infusions)

Congratulations Meirav. You likely have found yourself more then just a small purple band aid as Issie would say, but a box of them as I would reply to her .

For people with CBS issues adding taurine makes sense.
***EDIT: Issie has CBS mutations AND problems with sulphur metabolism; she stresses that for people with sulphur problems it might be no good EDIT***

I do not have known CBS issues. When taking it, even in small amounts, it made me way more relaxed but to borderline depression levels and decreased my physical energy remarkably.

It can indeed increase cell hydration and with it IMO blood volume to an extend.

The combo of both has fair chances to improve the gut and digestion (better matched stomach acid production, less "osmotic shock" when eating and hence reducing gut inflammation, more even blood flow and hence less hypoxia and ammonia production helping reducing spikes on the urea cycle and likely producing less ornithine and putrescine.

So, with a bit of luck... A full box of purple band aids (still building up some over time). Complete health is very optimistic, but remarkably better health is already big isn't it? Keep us posted and congratulations on your smart and dedicated search for better health!!!

 

[Issie]

Thanks Dejurgen, I could still edit, so did so. Thanks for catching that.

L-Carnosine has also been shown to help get histamine into the brain and help with neurodegenerative issues. Helps modify calcium channels and lowers lactic acid after exercise. Improves mitrochondria function, improves energy, helps with ROS and inflammation. Is thought to help many nurological diseases and help prevent ischemia in the brain. Also can help alter dysfunction with neurotransmitters.

The Potential of Carnosine in Brain-Related Disorders: A Comprehensive Review of Current Evidence

Neurological, neurodegenerative, and psychiatric disorders represent a serious burden because of their increasing prevalence, risk of disability, and the lack of effective causal/disease-modifying treatments. There is a growing body of evidence indicating ...

www.ncbi.nlm.nih.gov

THIS ARTICLE IS A MUST READ. TOO MUCH GOOD INFO FOR ME TO TRY TO COPY AND PASTE.

 

[dejurgen]

When taking it, even in small amounts, it made me way more relaxed but to borderline depression levels and decreased my physical energy remarkably.

For me I think the failure to get taurine work in even very low doses is due to my years to decade long living with and need for *VERY* high stress hormones.

I believe that taurine not online improved my water balance and (overly) calmed my nerves system and brain but also tanked my (very much needed) production of stress hormones. Stress hormones can increase energy production a lot and likely do so in plenty of ME cases, even if one has barely any energy. I need(ed) coffee to sleep better, likely increasing energy above the basic level to even be able to sleep well. Figure that ;-).

I had several moments / periods where my stress hormone levels dropped a whole lot quickly and on some of those ocasions I was so weak as to be barely able to breathe enough to survive the night or would "fall through my legs" when trying to stand.

So for those that still depend on (very) high stress levels (or just have them day in day out), keep an eye out for this "side effect"!

I still have the box of taurine. I hope it'll be of help once I can decrease my need for stress hormones enough. I'm slowly getting there .

I'll repeat the warning above and that of Meirav:

Don't "just" play or fiddle around with increasing taurine levels. Seek medical aid first!

Good work Meirav!

 

[Issie]

Another aid with bile, that I use when I'm having gallbladder and liver issues, is Ox Bile. When I feel soreness on the upper right side and feel there are issues, using this will help take down this inflammation, help bile move better and provides relief.

We also learned that Ox Bile is high in Taurine. Despite my not being able to take Taurine, I do well on Ox Bile. Dejurgen will explain that one.