Substantial improvement with (strange) dietary adjustments

[Wonkmonk]

Oh, and if some people get annoyed that this thread gets bumped up to the top so often, I fully understand that, but I really think this discussion is important given how extraordinary my improvements have been.

People might think "This guy is nuts"...no hard feelings, I would think the same if I weren't experiencing this myself.

 

[Wishful]

That's what makes it so complicated. It's very difficult to test individual foods, much less individual compounds within foods, because of the time lag of the effects and the difficulty in separating the foods.

Yup, it's tricky. You might even be sure of the culprit, and then find some counterevidence. Does that counterevidence disprove the theory, or is there another factor involved that counters the expected reaction to that culprit? Such fun!

 

[Wonkmonk]

Yup, it's tricky. You might even be sure of the culprit, and then find some counterevidence. Does that counterevidence disprove the theory, or is there another factor involved that counters the expected reaction to that culprit? Such fun!

Yes, spot on. It's a nightmare. But on the other hand, I'm so grateful that this does in fact work to some extent. I'm one of the few CFS patients who seem to have a method to improve my condition substantially and (so far) sustainably.

 

[Wonkmonk]

Had a strong protein craving two days ago which led to a cheese craving session. I worsened considerably a day later.

But I had the cheese with wholegrain bread. My theory is that the bread provides the substrate for whatever microbiome fermentation happens that produces the compounds that make me worse.

So I am going to try the cheese without anything else to see if that's a possibility.

Cheese doesn't contain any meaningful amounts of fibre or carbs, and the lysine from well-chewed cheese is 100% absorbed. That should preclude any fermentation. Theoretically, it should not lead to a worsening. Let's see...

 

[Wonkmonk]

Got a thyroid test, which showed TSH is at zero, which means I am currently overdosed, probably because I lost a good amount of weight on the vegan diet in the past couple of months.

When I am even slightly overdosed on Thyroxin, I get much, much worse and I cannot make any progress with diet. I need a TSH of about 0.3 to 0,8 any deviation from this in either direction is a catastrophy (the norm is 0.3 to 4, some say 2.5). Even a 5 microgram overdose or underdose leads to a strong deterioration of symptoms. This is again very strange and unexplainable as most people don't even realize when their dose is 10 or even 20 micrograms off.

On a positive note, my triglycerides stand at 61 (optimal level is <90) and total cholesterol is only 114, meaning I am close to a heart attack proof level. This is despite me eating a high-fat diet due to the avocados and macadamias. A vegan diet really pays off for these blood markers.

 

[Wonkmonk]

Ok, I'm not sure exactly what's going on right now, but I worsened considerably in the past 4-6 weeks, and I am strongly convinced that the reason is that I started a vegan algae oil Omega 3 supplement, which threw my thyroid hormones out of whack.

I have seen several studies that strangely I can't find real quick right now that say Omega 3 fatty acids do affect thyroid hormone levels and their efficacy within cells. I suspect that that's why my thyroid hormone levels shot up without any good reason (a few pounds of weight loss usually don't change much for me).

I took a daily dose of about 400 mg of DHA and 200 mg of EPA. I stopped the supplement and will avoid and very long chain Omega 3s henceforth. Sadly, the symptoms persist, which is unsurprising given that Omega 3s accumulate in the fatty tissue and are only slowly released in the blood stream. I also adjusted my thyroid dose, which was probably wrong as this was likely an effect of the Omega 3s. I will go back to roughly the old dose and maybe adjust for 2-3 micrograms because of the weight loss.

I will also avoid ALA alpha linolenic acid (hemp seeds, flax seeds, chia seeds etc.) since some of it is converted into DHA and EPA in the body. The conversion ratio is 2-5%, lower for DHA and higher for EPA. The EPA dose of 200 mg that I think caused my current problems could be reached by as little as a teaspoon of ALA per day, so I'll cut down on high ALA foods completely.

ALA is an essential nutrient so it cannot be eliminated completely. But I think I'll get the minimum required amount from my avocado consumption. Avocado contains a low amound of ALA, and the minimum amount needed appears to be rather low.

 

[Wonkmonk]

I would certainly think it's more likely there is a common factor X, or two or three, somewhere among all your dietary adjustments rather than them all alone having some unique impact. It would make more sense as per Occam's razor.

I've been thinking about this comment again in light of my latest findings and I more and more think that it has merit, but maybe not in the sense that there is one (or 2 or 3) compound found in all these foods and that's why they are causing problems. The diversity of foods that cause problems and the different nature of symptoms some foods are causing speaks against that.

BUT: It is a very real possibility that these foods/compounds all do similar things in the body.

Like they might all be upregulating some enzyme or affect the thyroid hormones in a similar way or be pro-inflammatory for some reason or something.

I think that may in fact be the common factor X. That will be hard to prove though.

But it's indeed rather unlikely that each food does its very own thing in the body and that all these actions on different targets lead to the symptoms. It's more likely that they are doing similar things, affecting similar pathways.

Just a thought.

 

[Wonkmonk]

Another possibility that just came to my mind is that it could be the vitamin D and calcium. Maybe it's not as well tolerated as I think it is, even with lysine restriction.

My vitamin D is now over 50 ng/ml from daily sunbathing (and mushroom consumption, which also contain some). I think it never was that high. In addition to that I am taking about 700 mg of calcium as a supplement because my vegan diet which doesn't contain greens and other calcium-rich foods is deficient in calcium.

Maybe that's too much.

I'll cut down the calcium to 350 mg and see what happens. If that's not helping, I'll have to stop the tanning for a while. Would rather not do that though because it has a really positive effect on my mood.

What's making all this so frustrating is how complicated it is. If only ONE factor is wrong (protein, calcium, thyroid medication, one wrong food...) then most of the gains are lost and it's so hard to figure out what went wrong, because it is almost impossible to isolate the different effects and keep all but one factor constant.

 

[Wonkmonk]

Omega 3s in all forms (algae oil, fish oil, alpha-linolenic acid from flaxseed oil etc.) seem to be bad in larger doses, presumably because they are messing up intracellular T4-T3 conversion. Symptoms feel very much like being overdosed, but cannot be remedied by lowering my thyroid dose (which in fact seems to make it worse).

Since alpha linolenic acid is an essential nutrient, it cannot be avoided completely, but like lysine that doesn't seem to be necessary. A low amount should be ok or at least not cause strong symptoms.

 

[Methyl90]

No starch, low fat (Major satured), High protein from yogurt greco, no meat, only One time a week liver 150gr. Lot of fruit.

 

[percyval577]

I have noticed that I can make very substantial improvements of all symptoms with some strange adjustments to my diet. "Strange" because they don't concern any of the usual suspects like gluten or wheat,

I also have some experinece of the very phenomenon.

Once I had huge effects from eliminating fats or carbs or ... I have forgotten right now (but I have it recorded somewhere). Back then I had figuered out an explanation, which I do not consent anymore, but the effect was realy good, though the measurements have been hard to stick to and didn 't continue to work.

Still working is my first influence though, a low manganese diet. Once in a period - but very seldom - I have good effects from higher manganese food, but after that it turns bad.

I also had bad effects from spice, but now It 's good! For a while I had good effects from pommes frits (soleley taken). For a while Eggs have been somewhat helpful.

I had good effects from avoiding caffeine, but it worked only for two weeks or so, and then it made no difference. I am just on a track to check it out in new circumstances. I had good effeccts from drinking beer for three cold seasons (bad during the summer then though) after having induced ma low manganese diet, but now its horrible. Oranges/orangejuice are/is helpfull, yesterday even very good.


Later, after some food inquieries, I noticed that small amounts of some supplememts do work. When they get out of effect, the effect comes back after some time. I now have 13 oftin taken supplements and five seldom ones, (two further ones in trial). There is even a dosage when the effect turns bad, so when I drink a sip, then I suddenly notice, I should stop the intake. - It 's very cheap . For a long time I had strong good effects from tyrosine (normal dosage), and then it turned bad, now it's strong again (low dosage).

For four months I had very helpfull effects from natural inhibitory stuff, which suddenly turned bad. I remember to have felt completely good after eating a salad with vinegar. Once a mineral water gave complete relief (I figuered out that it shoud have been the chloride Cl-, which was much more in there than N+).
__

I think this may tell something over the nature of the illness. In my opinion the illness is a derugulation of the macrostructure of the/a synaptical net in the basal ganglia and parts of the thalamus. If there is no derugulation or damage in the cells, the illness should clearly be reversable, but it 's a mess in my course of treating the illness and if I am allowed to speak in my interpretation.

 

[Wonkmonk]

No starch, low fat (Major satured), High protein from yogurt greco, no meat, only One time a week liver 150gr. Lot of fruit.

That would probably not work for me because of the lysine in yoghurt.

 

[Wonkmonk]

I also have some experinece ...

Thanks for sharing this, this is so interesting, because it's very different than what makes me worse. For examples, oranges...no way.

But interesting to hear that other people's symptoms are so sensitive to foods as well.

 

[L'engle]

Your disease severity cannot depend on whether or not you have a bowl of kale for lunch.

I would definitely feel worse if I ate a pound of kale. I generally have to stay away from the dark green veg.

Thanks for sharing your diet. It provides clues that might help other people.

 

[Wonkmonk]

I have not improved further, but made the following observations during the summer:

*A too high Vitamin D appears to be bad and it cannot be offset by a lower calcium intake.

*Surprisingly, I seem to be improving somewhat when I eat 1 teaspoon of ground mustard seed with every meal. The more pungent yellow variety seems to work better than the milder brown seeds.

*Nitrate seems to be mainly a problem when it is combined with other problematic foods, especially monounsaturated fat, but also fat in general, fructose, possibly pectin or acid. For example, I can tolerate this meak surprisingly well: 6 oz of wholegrain spaghetti, 5 oz of kale (nitrate!), on sliced carrot (nitrate!), a few florets of cauliflower (some nitrate), a tablespoon of concentrated tomato puree, 300ml of water, all pressure cooked for a few minutes until the pasta is soft. Separately a teaspoon of ground mustart seeds. I used to think this would never work because of the nitrate, but because it has low fat, low sugar, low acid and low pectin, it seems to be ok. What's very interesting is that this meal isn't even so low in lysine. So I think it's the combination that matters.

*Mushrooms and nutritional yeast work quite ok if they are not combined with fructose, acid, pectin or a lot of fat, especially monounsaturated.

*I probably have to have a closer look at pectin, because its main sources, e.g., onions and apples, are worse. For instance, adding a large onion seems to make the meal mentioned above much worse and apples and oranges (both high in pectin) appear to make me worse than other fruit. Also, undercooked potatos in which the pectin isn't broken down completely are very problematic, while thoroughly cooked potatos are much less problematic. I think the pectin has to be combined with protein (probably lysine), fat and/or nitrate to have its worst effect. I will soon try to see if an onion soup that contains basically just onions makes me worse.

*Glucosinulates in cabbage family vegetables (brassicaceae) do NOT appear to be the culprit, because adding ground raw mustard seeds (which leads to the creation of glucosinolates like sulforaphane) to cooked cabbage veggies does NOT make me worse. I'm not yet sure about organosulfur compounds in allium family vegetables (onions, garlic, leek...).

*Caffeine seems to be bad, but I seem to be able to tolerate some vegan hot chocolate (coco contains caffeine) every once in a while. Same with cinnamon.

 

[Wonkmonk]

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.

 

[Wishful]

Yes, overdosing sometimes shows effects that aren't noticeable by simple avoidance. I have foods that don't really bother me in the amounts I normally consume, but maybe some days they add to other factors, so I really should avoid them altogether.

 

[Wonkmonk]

With respect to protein/lysine, the longer I am doing this the more I think the problem is with a compound that's created by fermentation or in the gutt rather than the lysine itself.

I have noticed that I can tolerate plain lentils with a teaspoon of ground mustard seeds (yellow!), no other ingredients, in the evening with 6 hour distance to the last meal (no mixing in the stomach!).

I suspect that the compound(s) in question only form(s) when foods are combined. Currently, I suspect that protein/lysine may not be mixed with fat (esp. monounsaturated), nitrates, certain fibers (e.g., pectins in fruit or onions), organic acids (esp. citric acid) or fructose.

That could explain why I can tolerate the following meals quite well:
*Wholegrain pasta with a low amount of tomato puree, some kale and a carrot and a teaspoon of grape seed oil (nitrates in kale don't seem to matter as lysine, pectine, acid, fructose and fat is very low)
*Pureed avocado, banana and oat milk (high in monounsaturated fat and pectine/fructose, but low in lysine and nitrate)
*Plain lentils with ground mustard seeds (high in lysine, but low in everything else. Not sure if lentils contain pectine)
*Thoroughly cooked potatos (pectine breaks down) with green beans and a low amount of tomato puree and a teaspoon of grape seed oil (low in acid and sugars and fat, but moderate in lysine and nitrate)

When I use real tomatos instead of puree, all these meals become no longer tolerable, presumably because that introduces higher amounts of acid and fructose. Also, undercooking the potatos makes all meals that include potatos produce strong symptoms because the potato itself contains lysine and the pectine isn't broken down when they are undercooked.

I'm also not sure if the mustard seeds are needed to make the lentils work.

But the main takeaway from my last experiments is that the mixing of the foods makes a real difference. It's also important to make sure the foods don't mix with previous meals.

 

[Wonkmonk]

At this point, maybe a reminder that although I haven't improved further since the summer, selecting the foods based on these criteria has gotten me from absolutely bed-ridden and in terrible pain all-day to a relatively normal life at home and the ability to go on hikes for several miles.

When I abandoned this diet, all symptoms always snapped back immediately, so there must be a connection. It's not possible that I am confusing the effect of the foods with a recovery that would have occurred anyway or has other causes. There must be a causal link. I tried it so often to broaden my diet again and make it easier, it never ever worked.

 

[Wishful]

Identifying problematic nutrients is difficult. It took me quite while, and lots of staring at nutrient data lists, to figure out that proline was the most likely culprit. I didn't have a convenient source of pure proline, so I couldn't prove that it was the cause. That sensitivity passed, except that proline still gives me dose-dependent double-vision.

That problem was followed by the present fibre sensitivity, and, as you suspect in your case, it's most likely microbial metabolites. I ruled out acetates, but still suspect propionates, and there are plenty of other possibilities.

I recently re-tested tomatoes (BBQ sauce, to be precise). Nasty horrible day after that. Lysine wasn't a problem before, and I'm not getting the problem from meat, so it's probably not an amino acid. I was hoping that tomatine was well-researched, but it really isn't. The search for why these foods are a problem goes on...