Substantial improvement with (strange) dietary adjustments

[Dysfunkion]

Interesting observation:

*White bread, peanut butter and raw honey --> relatively strong symptoms
*White bread, refrigerated peanut butter, refrigerated raw honey --> no symptoms so far

Probiotic bacteria are known to be abundant in honey:

https://pmc.ncbi.nlm.nih.gov/articles/PMC10336281/

Could the refrigeration slow their activity down until the nutrients they make harmful (to me) compounds from are absorbed or used up by other bacteria?

Could this also work with dates (which I would suspect also contain lots of bacteria)? Could the presence of these bacteria be the reason why porridge with date-berry jam causes symptoms, but not berries alone or porridge alone?

I will explore that further.

I never thought about the temperature of the food. I wonder if refrigerating peanut butter before even heating it would do anything. I kinda doubt it if its changing temperature again when it goes in the oven but its another weird thing to try. I dont know what is going on with gluten based products but I barely touch them anyhow so I'm focusing in this next.

 

[Wonkmonk]

I never thought about the temperature of the food.

The symptoms actually appeared yesterday, but much later for the refrigerated honey. I will now try freezing the honey, which should make the bacteria go dormant and take even longer to wake them up. I might also try pasteurizing the honey to test the theory, which should get rid of all the bacteria.

 

[Wishful]

Experiment in progress: I'm soaking some chopped-up balsam poplar buds.

Well, whatever I'm intolerant of in embryos isn't in dormant buds. I tried twice, with no noticeable effects. I'll have to search for a list of other water-soluble embryo hormones.

 

[Wonkmonk]

I couldn't make porridge with berries and bread with honey and peanut butter work. It always caused strong symptoms, only the time when they appeared seemed to change with the temperature. Also, cooking the dates for the berry jam didn't help much.

But berries only is ok and dates and berries only also seems ok if meals are splitted into two times 350 calories max each one hour apart. Will try plain peanut butter now. If that works, it would generally support the theory: The bugs need carbs, preferably fructose or fiber, protein and possibly some other compound like choline. Therefore, berries/dates only works (no protein) and peanut butter only should work, too (not much fructose/fiber for the bugs to eat).

 

[Wonkmonk]

Regarding the porridge, the fructose and fiber of the berries and dates cannot be the whole story though because the negative effect is much less pronounced if I eat porridge with bananas with about the same fructose and fiber load.

I suspect that the difference is the berry anthocyanins, which have been shown to affect the composition of the gut microbiota:

https://www.tandfonline.com/doi/full/10.1080/10408398.2023.2187212

https://www.tandfonline.com/doi/full/10.1080/10408398.2018.1533517

My theory is that one or more harmful compounds are produced by one or more otherwise beneficial microbes in the microbiome (or outside the body during fermentation). If so, these microbes seem to thrive when berry anthocyanins are present.

Again, this would offer an avenue to study this disease: Send porridge with bananas and porridge with berries in a artificial stomach (or real subjects) and see what the difference is when it comes out again.

 

[Dysfunkion]

Regarding the porridge, the fructose and fiber of the berries and dates cannot be the whole story though because the negative effect is much less pronounced if I eat porridge with bananas with about the same fructose and fiber load.

I suspect that the difference is the berry anthocyanins, which have been shown to affect the composition of the gut microbiota:

https://www.tandfonline.com/doi/full/10.1080/10408398.2023.2187212

https://www.tandfonline.com/doi/full/10.1080/10408398.2018.1533517

My theory is that one or more harmful compounds are produced by one or more otherwise beneficial microbes in the microbiome (or outside the body during fermentation). If so, these microbes seem to thrive when berry anthocyanins are present.

Again, this would offer an avenue to study this disease: Send porridge with bananas and porridge with berries in a artificial stomach (or real subjects) and see what the difference is when it comes out again.

Hey this actually makes sense in my case I remember over last Summer as things were getting a lot worse for me one night I remember eating a plum (my crash was due to saw palmetto over the course of a month, was also on lions mane which looking back was probably what primed me for severe) and it was the worst I'd felt yet and not too much further down the line I got tanked to severe for the first time. Many months later on my slow crawl back up I tried anthocyanin in supplement form and instantly regressed quite a bit but thankfully in the next few days I bounced back to my deep moderate baseline at the time. I have also almost gotten into a bad crash that could have tanked me further if I even had the slightest amount more of psyllium husk somewhat recently as taking a tiny sprinkle out of less than half a teaspoon. So I appear to have something that is very reactive to SPECIFIC kinds of fiber and fructose, and in the presence of anthocyanins it goes wild. In fact some fiber may even combat it which is part of my theory on why cinnamon likes my guts so much. I'm also now wondering if cooked salmon produces a compound that directly goes against the offenders and the reason I got better from rebounding off that reaction to it so much is because I was pushing back and another bacterial colony more beneficial was able to gain dominance over it and due to other factors that improved things like cinnamon it was able to keep itself in place. I also noticed the more coffee I consume but not caffeine alone which barely does anything for me itself the better off I am, propolis is also crucial for me. The trend seems to be that high plant polyphenols plus rebounding off of salmon is what pushes me back to mild island.

I'm highly reactive to fruit, even recently I found tomato isn't much better than any traditional sweet fruits like apple or mango. Anything apple is the second to worse followed by plums which was one of the worst reactions to anything I had ever (I haven't tried any of the others high in anthocyanins). I have a funny feeling our microbiomes are pretty similar if this is the case but I have a lot more of something that tanks me much faster with fructose. It's not a sugar thing, I can eat all the white and brown sugar in the world and just feel a bit slower (I almost never do, maybe once in a blue moon I might have some ice cream or some cookies). Carbs and sugars may feed it but the show only really begins when fructose and now likely anthocynanins join the party. Keeping the glutamate level very low also seems to be part of keeping things running smoothly, soy sauce or tofu both make things much worse but in different ways. I don't think histamine is really part of my big picture even if it can get higher than it should sometimes, it may actually even be something my body isn't responding enough to, I remember when I was in severe and deep moderate if I had something with a ton of histamine I would feel nothing whereas before histamine would actually make me feel more wired and stimulated in a very raw way. Cortisol would also do just about nothing, one time I ate a whole capsule of adrenal cortex and just felt like I was going to have a muted panic attack.

What do you mean by outside of the body though, the skin microbiome or what is produced traveling through the body to the surface of the skin?

 

[Wishful]

Will try plain peanut butter now.

Keep in mind that not all "plain PBs" are identical. I do seem intolerant of one brand, while tolerant of another. Different effectiveness of embryo removal? Different soils or climate? Different storage times and conditions? Different microbes on/in them?

Biology is not as simple as inorganic chemistry, where all NaCl molecules are identical ... unless isotopic ratios make a difference.

 

[Wonkmonk]

I do seem intolerant of one brand, while tolerant of another. Different effectiveness of embryo removal? Different soils or climate? Different storage times and conditions? Different microbes on/in them?

Great questions. I haven't noticed being tolerant to one brand more than another, not with peanuts nor other products, but I haven't paid attention to it so for, so maybe I should watch out for it.

 

[Wonkmonk]

So I appear to have something that is very reactive to SPECIFIC kinds of fiber and fructose, and in the presence of anthocyanins it goes wild.

Thanks for sharing this, this is so interesting. Do combinations of foods matter to you? For me, I can eat blueberries alone (up to 3 pounds in one meal) and porridge (multigrain flakes, water) alone without much worsening, but when I eat them together, I get strong symptoms, especially after repeat consumption.

I'm also now wondering if cooked salmon produces a compound that directly goes against the offenders

The only thing I can think of is astaxanthin, which is a carotenoid which usually get more bioavailable when cooked. Does the same thing happen with raw (smoked) salmon?

 

[Wonkmonk]

I have now been living for 3 weeks in an own rental apartment completely on my own. I do all the shopping, cooking, cleaning. It still feels challenging, but I think I could now live on my own permanently.

On the foods front, I have noticed that I must always get all essential nutrients. For instance, my diet is deficient in Omega 3s because it's low fat and I mainly use sunflower and grapeseed oil. After eating a few tablespoons of flaxseed oil, my symptoms seem to have improved, so I suspect that corrected a deficiency in Omega 3 (alpha linolenic acid).

I am also experimenting with taking half of my daily thyroxine 2 hours after the first half (then 1 hour until the first meal). If splitting helps with calories, maybe also with thyroxine.

 

[Dysfunkion]

Thanks for sharing this, this is so interesting. Do combinations of foods matter to you? For me, I can eat blueberries alone (up to 3 pounds in one meal) and porridge (multigrain flakes, water) alone without much worsening, but when I eat them together, I get strong symptoms, especially after repeat consumption.

The only thing I can think of is astaxanthin, which is a carotenoid which usually get more bioavailable when cooked. Does the same thing happen with raw (smoked) salmon?

With the one that made me horrifically worse which was psyllium husk I'm not touching it again or anything that might be related in composition like oatmeal. To test this out more I'd be treading in dangerous waters and I don't think I wanna risk that for science at the moment.

On salmon raw doesn't do this, raw salmon or tuna has essentially no effect at all besides being tasty. That may be it though the effect isn't the same from eating shrimp but salmon could contain a large amount more. Can't comment on smoked fish, I never eat smoked anything.

 

[Wonkmonk]

With the one that made me horrifically worse which was psyllium husk I'm not touching it again or anything that might be related in composition like oatmeal.

It may be unsoluble or nonfermentable fiber, which is in both oats and psylliumm. It may also be the slimy, glue-like past that both form, which might be a breeding ground for some bugs that do bad things (for you, for others it might be healthy).

To test this out more I'd be treading in dangerous waters and I don't think I wanna risk that for science at the moment.

This is how I feel quite often. I am thinking "hey, I should really try and test this or that, would be so interesting", but then when I think this would probably mean another 3 days of severe symptoms, I say "no thanks" even though it would really be worthwhile to know what would happen.

On salmon raw doesn't do this, raw salmon or tuna has essentially no effect at all besides being tasty.

This is very strange and interesting at the same time because I can't really think of a reason why cooked salmon should be a problem while raw is not. As I understand, this is not a problem with other types of fish, so it must be something that's special in salmon and not present in other fish. So likely not protein or amino acids.

Only thing that would come to my mind is astaxanthin. As a carotenoid, bioavailability and cis-trans isomeres might in fact change for this compound when it is cooked. It only is in salmon (red color) and not other fish.

It's available as a supplement, if you want to do further testing with it.

 

[Wonkmonk]

I made a test: store-bought, long-fermented frozen pizza (48 hour fermented dough).

It caused moderate-to-severe symptoms later the same day and the next. (especially sleepiness, dizzyness and headaches)

Then again, similar pizza (every time only chees and tomatos) and then bananas as the next meal with about 4 hours in betweet --> MUCH stronger and longer-lasting symptoms.

So whatever is in the fermented dough gets activated or more readily converted if fruit/sugar is the next meal. I found the same for longer-fermented homemade pita. If eaten with honey (source of fructose) everything is much worse.

But it does cause symptoms (much less though) even if the next meal is mushroom pasta which contains no significant amount of fructose.

There is some sugar in the pizza though (tomato sauce) so I would have to check that again. Homemade bread and blue mussles cause (almost) no symptoms at all.

Maybe the whole "mealmixing" problem only or mainly pertains to fructose-containing foods.

 

[Wonkmonk]

I think I figured this part out (or I am at least close to figuring it out):

Any grain- or bean-based food that pre-fermented outside the body involving bacteria (not yeast alone!) will cause some symptoms on its own, but very severe symptoms when consumed with fat (esp. monounsaturated and omega 3), fructose or larger amounts of fiber together with it or in the meals before or after (meal mixing!).

I can't think of any case where this rule didn't hold up.

This is either a new medical condition or I am the only one in 8 billion who has it. The former is much more likely.

I call this condition Acquired Fermentation Product-Induced Fatigue Syndrome.

 

[Wonkmonk]

If anyone wants to try if they have the exact same thing: What reliably sends me into shock-like symptom overkill about 1 hour after consumption is almond milk heavily sweetened with pureed dates and with a lot of non-dutched (high-antioxidant) organic unsweetened cocoa powder. That seems to be a match made in hell.

Disclaimer: Try at your own risk, maybe use small quantities first. The symptom shock really made me think about going to the ER.

Symptom presentations and reactions to different foods may vary in this condition, however.

 

[Wonkmonk]

I call this condition Acquired Fermentation Product-Induced Fatigue Syndrome.

I borrowed the "Acquired" from AIDS because I think this new condition is also virally induced. This is an unproven hypothesis. So we might leave the "Acquired" out for the time being.

 

[Wishful]

I expect the almond milk or the cocoa would make me feel worse on their own, simply due to them having whatever is in the seed embryos.

I was going to pick up a container of sprouts on my last shopping trip, but neither of the stores had them. Sprouts were common at one time, but I guess they went out of fashion. I've got some chia seeds sprouting, to see whether the nasty substance disappears once the seed sprouts.

So far, I've found that the substance is in seed embryos but not in dormant leaf buds or roots (at least carrot roots, but is in tubers that can send out shoots), is water-soluble, survives cooking temperatures and even roasting (coffee/cocoa bean). I would expect ethylene to boil out during cooking or roasting, so it's probably not that.

 

[poohsilk]

Hello, I am late to this conversation and its a detour to what I was seeking! I have experimented a lot with foods. A couple of things I have learned:
1. A good list (scientifically tested, although there can be variables and between countries) of high oxalate foods from Trying Low Oxalates group.
2. Knowing my genetic snps issues. Slow COMT gene ( homogeneous snp)- problematic foods: reds and purples, apples, tyrosine, phenalalmine... and a bunch of the other supplemental amino acids. Cutting out those foods has made many symptoms subside.
3. Histamine issues: low histamine diet. getting your histamine bucket low for a few days means you can tolerate a bit more for a few days. And not just fermented but avocados ( also many are high oxalate) for example. Left overs, chicken can be challenging , and more. Funny about cooked salmon - fish if not super fresh, is high histamine -I had it three times in one week recently and am wondering if that accounts for a week of feeling better!
4. Sulphurs - Another gene problem - CBS ( can't remember which snip) homogeneous means I cannot eat any high sulphur/thiol foods. I am about to start treating this myself. But cabbages, cruciferous, definetly nothing in onions family. Very bad pain to head and body. Used to get suicidal. ( I have used a lot of brain retraining and stillness practices to calm the brain reactions down. )
5. Mold Illness /CIRS: Detoxification systems in me are messed up. Cant tolerate alot. Got out of mold again I hope. Feeling better. Daily coffee enemas.

 

[Wonkmonk]

Hi, @poohsilk, welcome to the strangest thread in the ME/CFS universe and thank you so much for sharing your experiences. I thought about some of them, too, but dismissed most ultimately, e.g., it can't be histamines for me, because the worst offenders (cheese, smoked raw salmon, saussage) do relatively little harm. I also don't have typical histamine intolerance symptoms.

The others are interesting. I would be interested to learn more about your experiences.

 

[Wonkmonk]

Up to 300 grams (dried, 900 calories in total) of various low-fat legumes seem to be relatively well tolerated if the meal is split in two parts at least 30 minutes apart.

Some legumes have a relatively high fat content, e.g. dried chickpeas have 6% fat, which surprised me. Soybeans are also relatively high. Low-fat legumes are lentils, white beans, pinto beans, kidney beans, green peas.

A very high load (300g dried) works if the meal is split in two and if that legume is the only food in the entire meal and if no fat is eaten in the next meal. Haven't figured out how fructose plays into this, but it may also have a role.

Here is my hypothesis:

Bacteria produce stuff that's harmful to me (not to healthy people) from nutrients that occur in legumes (I suspect protein and choline) and harmful stuff is fat-soluble. So the symptoms are very bad when
(a) a food is eaten that was pre-fermented outside the body (bread, pizza, soy yoghurt),
(b) a meal is eaten that contains protein, choline etc. and fat for solubility, possibly enhanced by fructose and anthocyanins which raise the activity of some bacteria,
(c) a meal that contains protein, choline etc. is eaten first without fat, but then fat is eaten in the next meal and the two meals mix and the harmful stuff can then be absorbed (which it couldn't before).

This is not so far fetched. Other cases where a lack of toxicity is (probably) a result of poor absorption of an otherwise toxic compound are known, e.g., for tomatine vs. solanine:

https://en.wikipedia.org/wiki/Tomatine#Metabolism

My findings on cocoa powder lend support to this hypothesis.

As I discussed earlier in this thread, cocoa powder - I used non-dutched, high-antioxidant organic - in almond milk sweetend with pureed dates tastes super-delicious and is very healthy, but once almost sent me to the ER. Symptoms were absolutely brutal.

Now why is this? Cocoa - surprisingly - is a heavily pre-fermented food. It ferments at tropical temperatures for weeks before being processed:

https://en.wikipedia.org/wiki/Cocoa_bean#Harvest_processing

Now add to that the choline, protein and fat that's in the cocoa (it's a bean!) and from the almond milk, and the fructose in the dates for even more fermentation, it would be absolutely consistent with my theory that an almond milk-based date-cocoa drink would make all hell break loose, and so it does.

The bacteria produced lots and lots of harmful products during the long fermentation of the cocoa bean at tropical temperatures and those can be very well absorbed because they are all dissolved (and can thus be absorbed) in the fat from the cocoa itself and the almond milk.

Nutella and it's me-too siblings also cause the same problems. This is not surprising because they are basically the same: Fat, sugar (fructose) and cocoa.

Now what can I do about it?

(1) Avoid any and all pre-fermented foods.
(2) Generally eat only low fat meals
(3) Restrict fat intake as much as possible to the essential fatty acids (alpha-linolenic acid and linoleic acid)
(4) So separate the fat from the other meals: Take the necessary fat in an own fat-only meal in the morning with 6 hours to the next meal (yes, fat-only, several table spoons washed down with water. It has to be done.)
(5) I haven't entirely figured out what's the deal with fructose, but for the time being, I will separate it like the fat as well.

This sounds totally strange and weird, but it's incredible to what an enormous improvement this has led. I have now been living in an own apartment unaided by anyone for one whole month. I do all the shopping, cooking, cleaning, errands. Before I tried the dietary adjustments, I was bed-ridden and could only get up for 1-2 hours a day.