Substantial improvement with (strange) dietary adjustments

Wonkmonk

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Identifying problematic nutrients is difficult.
Yes, absolutely, and what makes it even more difficult is that there appear to be combinations of nutrients that make things worse or cause symptoms in the first place.

Like I always thought I have a problem with lysine and that it somehow feeds a dormant virus like arginine feeds herpes or something.

But then I found out that I can eat substantial amounts of lentils if I eat them plain with only mustard seeds (still not sure if that's important) and cooked in nitrate-free water. So the lysine alone doesn't do too much, but if I cook it Indian style with onions sauteed in olive oil (which adds monounsaturated fat, sugars and pectin), it's much worse, and when I eat a bowl of blueberries (acid) and some spinach (nitrate) on top of it, I'm crashing for like 2 days.

I was hoping that tomatine was well-researched, but it really isn't.
I looked into this as well, and, yes, there isn't, but I once found a paper that said some varieties contain almost no tomatine at all. I can't find it anymore and don't remember the name of the cultivars, but it was one of the large ball-shaped ones.

The search for why these foods are a problem goes on...
It will go on for quite a while, but I am making real progress in finding things out. By separating the foods, I could reintroduce new meals that I missed very much, e.g., pasta with a little tomato puree and kale. Just can't add more than a teaspoon of oil and no fruit allowed (acid/sugar).
 

Wonkmonk

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Have to validate this some more, but it appears that I can tolerate steamed and grilled cauliflower (just with salt, no oil) with bread (optional: ground mustard seeds) quite well, but only if the cauliflower is very fresh. If it sits in the fridge for a week, it causes symptoms.

That's consistent with my theorie that fermentation outside the body can also create the compound(s) that cause trouble. This happens for instance in soy yoghurt and tofu which both contain lysine, fat, fiber, some nitrate plus in the case of yoghurt acid from the fermentation. The microbes do something bad here, because I can eat plain, fresh, cooked legumes (though I didn't explicitly try soy so far).

Cauliflower has lysine, nitrate and pectin, so that's probably enough for the microbes to make something bad while it sits in the fridge for several days.
 

Wishful

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It would be nice to have a database of foods, their nutrients/chemicals, and biological effects of those things, along with a convenient UI. List some foods that give you the same symptoms, and it would list the components they have in common at similar levels (eg: they all have high levels of lysine, or malate), or perhaps that they are all immunostimulants.

If we had a list of food components that worsened ME symptoms for the majority of PWME, researchers might find the metabolic pathway involved.
 

hapl808

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Have to validate this some more, but it appears that I can tolerate steamed and grilled cauliflower (just with salt, no oil) with bread (optional: ground mustard seeds) quite well, but only if the cauliflower is very fresh. If it sits in the fridge for a week, it causes symptoms.

That's consistent with my theorie that fermentation outside the body can also create the compound(s) that cause trouble. This happens for instance in soy yoghurt and tofu which both contain lysine, fat, fiber, some nitrate plus in the case of yoghurt acid from the fermentation. The microbes do something bad here, because I can eat plain, fresh, cooked legumes (though I didn't explicitly try soy so far).
I think that points down the road of histamine as well. Which is a whole rabbit hole. I think there's more going on here than just histamine or fermentation or whatever, but our issues may be adjacent or related.
 

Wonkmonk

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Sadly have to retract that. Cocoa is banned, at least in higher doses. Did a provocation test with 3 oz yesterday morning, crashed badly and still have a headache.

It's probably the theobromine or caffeine. Green tea seems to be problematic, too.
I will try this one again because I added almond milk pureed dates as a sweetener, which combined sugar and monounsaturated fat from the almond milk, It might work with glucose or swerve as a sweetener. The problem might have been the fructose in the dates in combination with the fat.
 

Wonkmonk

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I think that points down the road of histamine as well. Which is a whole rabbit hole. I think there's more going on here than just histamine or fermentation or whatever, but our issues may be adjacent or related.
I think I can rule out histamine in my case, because super-high histamine foods like smoked salmon do not induce a worse reaction than foods that include much less histamine. I also don't have the allergy-like symptoms or itching commonly associated with it. I also found no improvement from antihistamines like loratadin or DAO inhibitors like DAOSIN.

I don't think histamine plays a role in my case.
 

Wonkmonk

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It would be nice to have a database of foods, their nutrients/chemicals, and biological effects of those things, along with a convenient UI. List some foods that give you the same symptoms, and it would list the components they have in common at similar levels (eg: they all have high levels of lysine, or malate), or perhaps that they are all immunostimulants.

If we had a list of food components that worsened ME symptoms for the majority of PWME, researchers might find the metabolic pathway involved.
That's a great idea, If anyone reading this thinks they are reacting to food, please post your experiences and maybe we can try to make such a list.

That being said however, I am struggling to even make that list for myself. The main complicating factor is I think that there appear to be combinations of foods that individually don't cause problems (e.g., avocados and bananas). There also appear to be substantial time lags, in some cases several days. This is all so difficult and complicated.

But I am really making progress. Last few weeks gave me a lot of very important insights.
 

Wonkmonk

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I have made some very surprising, but also very useful discoveries.

First and most of all, neither lysine nor legumes alone appear to be causing symptoms. They do it only in combination with fat, mostly monounsaturated or Omega 3 fats. It looks like I can eat 300g of dried lentils every day as long as I don't combine them with any fat. I can even combine them with fruit. This was hugely surprising to me,

Sadly, my hopes that fat might be the one limiting factor that explains everything have not been confirmed. Fruit along causes symptoms, but only after repeat consumption in higher quantities.

The most important insights summarized succinctly.

*Lysine alone or in combination with other carbs (even acid) doesn't cause symptoms in the absence of fat.

*Fruit does cause symptoms if consumed with several meals in a row in higher quantities.

*The problem in fruit likely is the fruit sugar or a fruit fiber (pectin), NOT the acid content.

*I believe so because (1) apples are especially problematic and contain high fructose, (2) bananas and dates are problematic, but contain no acid, (3) mandarines aren't more problematic than other fruit, but have high acid.

*Drinking 4-6 8 oz glasses of water in the 1-2 hours after a meal appears to help reduce symptoms, possibly because the water-soluble nutrients get absorbed more rapidly and are no longer available for fermentation by the microbiome.

*High insulin spikes appear to be causing symptoms. That can be managed by having smaller meals and make meals in advance and let starchy foods cool down overnight to increase resistant starch.

*Monounsaturated fat causes symptoms alone when consumed in high quantities, but some can be tolerated. It must not be consumed in the same meal (possibly on the same day) as high-lysine foods or fruit. E.g., Guacamole (avo, garlic, salt) with bread is ok. Avo + banana pudding is not.

*It seems to be important to avoid greens, possibly because of the nitrates, though some can be tolerated when eaten in a non-fat meal. Nitrates are reabsorbed in the gut over more than 1 day, so any future fatty meal on the same day or even a day later as the greens might be problematic.

*Most spices I tried (ginger, paprika, chili, black pepper, cinnamon) appear to be problematic no matter what they are being consumed with.

*Cocoa with almond or oat milk sweetened with pureed dates causes very strong symptoms. Jury's still out on cocoa with almond or oat milk sweetened with swerve (erythritol).

*It appears that onions, garlic and cauliflower can be consumed in isolation or added to meals containing no or very low amounts of fat. They are all low in nitrates. There appears to be no difference for garlic and onions raw vs. cooked vs. pre-crushed with wait time (for organosulphur compound production)

*Adding a quarter teaspoon of ground mustard seeds to cruciferous vegetables (e.g., cauliflower) for glucosinolate/sulphoraphane production does NOT cause additional symptoms. (it also does not appear to be particularly helpful)

*Nightshades per se do not appear to be causing symptoms when consumed without fat. In higher amounts, they may be problematic with a high calcium intake.

*Calcium appears to be causing symptoms if it's either very low or very high, so the intake should be calibrated to about 800-900mg a day. That seems to be about the goldilocks zone.

*Green tea appears to be harmful, probably because of the caffeine.

*Omega 3 fats (both long-chain and very long chain) appear to be detrimental in higher quantities no matter what they are combined with. I suspect because they are involved in thyroid hormone metabolism. There are essential so can't be avoided. I am limiting consumption to 1-2 handfuls of walnuts a week. In lower amounts, walnuts are working well, but of course only if not combined with a fat that needs to be separated from fats.
 

Wonkmonk

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These insights have openend up huge possibilities for a greater diversity of my meal plan.

The following meals do seem to work quite well:

*Lentils, plain, cooked until very soft, cooled overnight for resistant starch. (adding salt is ok)
*Wholegrain pasta with tomato passata, cooked until very soft, cooled overnight.
*Peeled potatos, cooked very soft with tomato puree, cooled over night

These meals can be combined in a single meal. Adding a bowl of fruit appears to be ok, most fruit seem to be ok, though I'm not sure about apples and raspberries. Mango, blueberries and bananas definitely work.

Onions and garlic can be occasionally added, but they contain fructose and pectin and therefore must be treated as fruid.

Other meals that work include if fat and sugar/lysine/nitrates are strictly separated:

*Guacamole (avo, garlic, salt) with bread, if sufficiently distant from all other meals (fat content!)
*Plain nut selection (walnuts, brazil nuts, macadamias), have to be distant esp. from fruit and greens
*Microwaved or oven-roasted cauliflower (no oil, no spices!) with bread
*Roasted mushrooms (shiitake, cremini) roasted with a little grape-seed oil with bread.

Sadly, oatmeal with almond or oat milk sweetened with berries or date puree doesn't work (probably because oats and the plant-based milk hat a higher amount of fat than pasta). Also adding cinnamon or cocoa seems to be problematic. I will try it with swerve next week.

It appears that nutritional yeast can be added to all meals that contain no added fat (also natural fat from nuts and avocados).
 

Wishful

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apples are especially problematic
They're also high in malic acid, something that makes my symptoms worse. I was surprised to find that sour (malic acid) candies would cause me problems.

*High insulin spikes appear to be causing symptoms.
Many years ago, I noticed that quickly-digested carbs would increase my symptoms 20-30 minutes later, but that effect was blocked if I took BCAAs with it. Insulin increases TRP transport into the brain, while BCAAs block it. That's an experiment you can try if you're curious.


It's interesting how different our responses are. Some are similar, but others are not, and it changes over time. I assume that means that these are varied responses from downstream effects of ME, and also affect ME via downstream effects of whatever these molecules do elsewhere in our body. It's all so interconnected.
 

Wonkmonk

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They're also high in malic acid, something that makes my symptoms worse. I was surprised to find that sour (malic acid) candies would cause me problems.
That's so interesting because I thought for so long that acid is a major problem for me, but I now think it is NOT, because when I limit the fruit amount and eat the fruit without any fat in the meal (both pressed oils and natural fats like nuts), sour fruit does NOT cause any noticable symptoms.

In those cases where fruit does cause symptoms (with fat or nitrate in the meal), sour fruit are just as bad as non-sour fruit like bananas or dates.

So for me, I have concluded (at this point, it may change again) that acid is NOT a problem. Of course this doesn't mean that it's not a problem for you, if you feel like malic acid worsens your symptoms, it's probably best to avoid most sour fruit as they almost all contain malic acid.

Many years ago, I noticed that quickly-digested carbs would increase my symptoms 20-30 minutes later, but that effect was blocked if I took BCAAs with it. Insulin increases TRP transport into the brain, while BCAAs block it. That's an experiment you can try if you're curious.
This is also very interesting. I have crashed quite substantially with both a lysine and a glutamine supplement, so I'm cautious with protein/AA supplements. But the thought is very interesting.

That being said, I have a possibility to reduce glycemic index of the starchy foods by letting them cool down in the fridge, which creates resistant starch and thereby lowers GI. When I do so, I don't feel a worsening because of the insulin/high blood sugar.

It's interesting how different our responses are. Some are similar, but others are not, and it changes over time. I assume that means that these are varied responses from downstream effects of ME, and also affect ME via downstream effects of whatever these molecules do elsewhere in our body. It's all so interconnected.
Yes, absolutely, there are differences, but it's so interesting to see someone who also reacts negatively to certain foods that are not known to cause particular diseases (like Celiac) or intolerances (like histamine). I think it's definitely part of the puzzle in some CFS cases.

Again, I cannot stress enough how much I improved since I am systematically trying to figure out these food reactions. I'm definitely nowhere close to figuring out the entire riddle. Still so many open questions and often I think "Now, this should work in theory" and then it doesn't. But the benefits are enormous.

And when I go back to old ways (e.g., when we have guests or someone brings food and I can't resist), it invariably worsens again. I have no doubt there is a causal link in my case.
 

Wonkmonk

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I should also add with respect to fruit that I have noticed that negative effects tend to be stronger when the fruit have a viscous, custard-like consistency as opposed to a watery, fluid-like consistency.

For instance, avocado-banana puree (thick, puddling like) doesn't work, but a strawberry-almond milk shake (thin, watery) works much better. Pureed strawberries and blueberries (thin, smoothie-like) works much better than pureed mango (thick, custard-like).

It also seems to improve when I drink lots of water with it, presumably because the consistency gets more watery.

A possible explanation could be that the problem is in fact fermentation by the microbiome. If so, nutrients from a watery fruit smoothie are absorbed more quickly and then are no longer available for fermentation. In contrast, a thick, viscuous puree would be digested more slowly and many nutrients would reach deeper in the microbiome and more nutrients would be available for fermentation and thus the emergence of the offending compounds.

There is no way to prove it, but I think this is mainly a fermentation problem,

But that can't be the entire story, because if I either underdose or overdose my thyroxine even just a little bit (5 micrograms or so), I worsen considerably, and there is no convincing theory how to connect that with the microbiome. Also when I take either too much or too little calcium, I worsen. That's also unlikely to be microbiome related.

So I suslect it's a complex interaction between the microbiome and other things that are going on in the body, possibly the fermentation products as well as low or high thyroxine or calcium (re)activate vestiges of a dormant virus or help in the virus's replication.

It's very complicated, but I have made enormous progress in figuring out how I can positively affect it.
 

Wonkmonk

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I'm currently experimenting with the amount of time necessary to separate meals that contain foods that must not be mixed.

First indication is that 6 hours between a lysine and sugar meal (lentils, onion and fruit) and a fatty meal (guacamole with bread) does NOT suffice.

I will for the time being restrict any fat and oil consumption to "fat days" and have at least a 12 hour intervening period overnight before the next meal that contains sugar, high lysine or nitrate.
 

Wonkmonk

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For those who think they may have the same thing (a probably very rare, food-related form of CFS):

The new updated rules (forget those I started the thread with!) are as follows (they will certainly change and be updated again):

1. Do not add any fat or high fat foods in any form (oils, nuts, avocado, olives) to any meal that contains higher amounts of fruit, lysine or nitrates, And I mean none whatsoever. Even a teaspoon is too much.
2. That means most animal products are out because they usually have high fat and high lysine (eggs, cheese, minced meat). I haven't tried very lean meta or fish.
3. Avoid all high nitrate foods and use nitrate-free water for drinking and cooking.
4. Up to a pound of fruit can be combined with fat-free meals, but only 1-2 meals in a row. You need to pause at least a day after that.
5. For the time being avoid all spices, especially ginger-family spices (includes turmeric), nightshade spices (chili, pepper, paprika) and cinnamon.
6. Drink 4-6 eight-ounce glasses of water (250 ml) in the 1-2 hours after each meal.
7. Avoid large blood sugar and insulin spikes. Don't have too large meals and take measures to reduce the glycemic index of the foods, especially cooling starchy foods overnight to create resistant starch.
8. If you need thyroid hormone replacement, you have to get TSH measured at 10am in the morning to 0.4-0,9 range. Even minor deviations will cause symptoms. For me that means to get the right dose down to a 3 microgram range. Any ever so slight deviations cause a strong flare up in symptoms.
9. Fix calcium intake with foods or supplements (4 hours after thyroxin!) at 800 to 900 mg a day on average (doesn't have to be the exact same every day). Don't deviate up or down for more than a few days.
10. Try to avoid or limit monounsaturated fat (Omega 9) and don't consume too much Omega 3 fat. 1-2 handfuls of walnuts max.
11. If you ever think you have to use pressed oils for cooking, use high Omega 6 oil (e.g., grapeseed oil, safflower oil). I know that goes against conventional wisdom, but I found it very important. Saturated fat might work, too.
11. Avoid caffeine in any form. That includes cocoa and chocolate.
12. Exercise (yes, I can on good days without PEM!) in the morning on an empty stomach.
13. Avoid fermented foods even if they don't mix fat, lysine and sugar like sauerkraut. I'm not yet sure about oat milk. That includes tofu, it's not fermented, but it rests for a long time during production.
14. High-nitrate foods like kale may be consumed occasionally (a few ounces) in a meal without fat (possibly with low lysine, not sure), but the next fatty meal should not be within the next 48 hours.
15. Don't have meals loaded with too much fat, especially monounsaturated and Omega 3. One large avocado or 2 oz of nuts max per meal.
16. Keep vitamin D between 25 and 30 ng/ml. I should check this again next summer, but the very high levels this summer (daily sunbathing) probably weren't good.
17. Keep room temperature not too hot and not too cold. That seems to matter. 20-22 C seems to be optimal for me.
 

Wonkmonk

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And remember, if you get only one of these wrong, just one, you might see NO benefit or a benefit so low you might think it's not worth it. That's what makes it so difficult to figure out. Any minor deviation destroys all the progress.

If you get everything right, but eat a tablespoon of olive oil in each meal, expect no progress. If you get everything right, but have half a tsp of pepper and chili in your meals expect no progress. If your thyroxine isn't right, even by just 5 micrograms, expect no progress.

That's what makes it so enormously difficult to figure out (and follow).
 

Wonkmonk

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Hi, everyone,

I wish everyone a belated Merry Christmas and a Happy New Year.

Thought I might drop a quick update. Some exciting news. (exciting for me at least)

*Nitrates in kale and spinach do NOT appear to be causing symptoms if consumed very thoroughly cooked (boiled at 100 C for at least 10 minutes) and if no fat is consumed the same day (not sure about fruit/fructose).

*It's probably alright to have a fatty meal after a 10 hour overnight fast, but I still have to check that.

*The limited fat content of pasta does not seem to be very problematic. I checked two meals that both did not cause a discernible flare up in symptoms: (1) 300g dried lentils, 200g spinach, 200g kale, 2 cloves of freshly crushed garlic. All boiled in pressure cooked for 20 minutes. (2) 250g of dried wholegrain pasta, 200g kale, 200g spinach, 3 tbsp. tomato puree, 2 cloves of freshly crushed garlic. Boiled at high temp in a normal pot for 15 minutes.

*The greens caused severe problems if they were only heated a little in the microwave. The long boiling in water seems to be decisive.

*Kale alone with pasta or lentils (but not spinach) did cause some symptoms when eaten several times in a row, but I suspect that's because that pushed me over the calcium limit. 100g of kale can have over 200mg of calcium with high bioavailability.

*I think I mentioned that before, but fruit that has a puree- or custard-like consistency does cause symptoms (e.g., pureed mango), but watery fruit like an orange does not. I suspect the same with oils. Hummus with a little olive oil on top might be much better than avocado puree in which the fat is pureed into a viscuous emulsion.

*The same appears to be the case for Christmas cookies, which I could tolerate better than I thought. They contain fat (butter, margarine, nuts) and sugar (fructoose), but both is in a "free" form and not as a pureed emulsion or mash. I think that plays a big role somehow.

*A drink of raw cocoa with almond milk and pureed dates (theoretically delicious and healthy) caused a terrible crash with headaches for several hours, but the same drink with erythritol instead of dates caused only a short minor episode of headaches. I suspect it makes a difference that the date induce an insulin response.

*Insulin and blood sugar appear to play a role I haven't apprreciated enough so far. Maybe some reactions only occur if the food (like cocoa) is consumed together with an insulinergenic food. This could also explain that I can tolerate physical exertion so much better on an empty stomach in the morning than with a breakfast.

I find the fat that custard-like foods cause much worse symtoms than watery foods intruiging. I think the reason might be that in purred or emulsified form, the foods take longer to digest and reach deeper areas of the microbiome whereas the fructose in watery fruit, for instance, is rapidly absorbed and no longer available for fermentation.

The same could be the mechanism why I can tolerate the throughly cooked greens so much better than undercooked or raw. I suspect the nitrates are liberated from the cell matrix during the cooking. Nitrates are water soluble and rapidly absorbed if they are liberated. So they don't reach the microbiome and therefore cannot do harm.

If that theory is correct, that would affirm my suspicion that this is in fact at least in part a problem that comes from the microbiome. I think, however, that it cannot be ONLY the microbiome. There must be something wrong in the body itself, otherwise, it would make no sense that I am so sensitive to even minor chances in then thyroxine dose (both on the upside and the downside).
 

Wishful

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The theory of depth of gut penetration of the chemicals seems reasonable. You could test it by putting the test samples in controlled-release capsules (I assume empty capsules are available somewhere). Quickly-digested carbs give me insomnia, but if I take them with psyllium or other fibre which slows absorption, no insomnia.

I also agree that it's not really the microbes that are causing the problems, but your body's absorption rate and responses to the byproducts of the microbiome. I suppose you could test that by taking the chemicals (nitrates or whatever) sublingually, bypassing the microbiome.
 

xploit316

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@Wonkmonk Experimenting with food is fun isn't it. I have recently added Glutamate and Choline to the list of aminos that are giving me neurological symptoms (Depression, Anger, Cognitive delays). High vitamin C or anything sweet after dinner is sureshot insomnia.

Recently added small amounts of fructose fruit back after avoiding it for many years. Too soon to start a victory parade with a new thread, but fructose is seeming to help with my hypoglycemia symptoms.

To a Happy and Healthy 2023!