Substantial improvement with (strange) dietary adjustments

Wonkmonk

Senior Member
Messages
938
Likes
1,314
Location
Germany
@Wishful This is exactly what I think. Theories what may be the reason why some foods work and others don't can only go so far because of the enormous complexity of the organism. In the end, it's much more a trial-and-error process than a systematic search for what the cause and effect may be.
 

Wonkmonk

Senior Member
Messages
938
Likes
1,314
Location
Germany
Experimented a bit last week and my conclusion at this point is that high amounts of organic acids from whatever source are problematic, even in isolation.

That means fruit consumption will have to be limited, especially high-acid foods like citrus or sour berries. Also, tomato sauce and similar products contain a lot of acid.

It may be the case that it's not so much the acid, but the sugar/fructose. I don't think so, because tomato sauce wouldn't be very problematic in this case (relatively low sugar load, but relatively high acid load). I will check that probably next week with dates and bananas which both have very low acid, but high sugar content.

I had some encouraging results with isolated spinach, mushrooms and avocados, but I have to do some more provocation tests.

Nightshades are definitely in the green category again (apart from tomato products because of the acid). I tolerated Ratatouille and Baba Ghanoush (mashed eggplant) as well as substantial amounts of potatos (if very thoroughly boiled), both fried and cooked.
 

xploit316

Senior Member
Messages
118
Likes
68
Also i seem to be digesting starchy carbs a lot better with a small dose of benfotiamine B1 taken 30mins prior to a carb meal. My hair used to dry out and had that dry fuzzy look, with B1 they seem to look more shiny and settled.
 

Wonkmonk

Senior Member
Messages
938
Likes
1,314
Location
Germany
Looks like you do well on a low histamine diet/low fermentation diet. Have you done a breath test to see if you have SIBO?
Yes, I have done several tests with a gastroenterologist for H2 development after glucose ingestion as well as for fructose and lactose, all negative. I did a comprehensive gastrointestinal examination, all normal.

I also thought about histamine intolerance, but I do not benefit from DAOSIN, a medication against histamine intolerance that blocks biogenic amines. I also don't react negatively to canned fish for example which should be a big no for histamine intolerance. I only react negatively to high amounts (supposedly because of the lysine).

Regarding B1 and vitamins, I tried to take a high-dose multivitamin with B vitamins before or after meals, and it didn't seem to make a difference. No easy solutions, sadly.
 

Wonkmonk

Senior Member
Messages
938
Likes
1,314
Location
Germany
Did some more tests and unfortunately spinach and high-nitrate foods (all greens) continue to be out, even when separated from acid, sugar, fat and lysine.

After eaing a pound of cooked spinach pasta (ingredients: spinach, wholegrain spaghetti, vegan butter, almond milk, grapeseed oil, garlic, salt), I am still having symptoms almost a week later,

This time delay makes sense because digestion lasts for about 3-4 days, and nitrate is reabsorbed, meaning it goes into the bloodstream through the stomach and intestines and is then excreted again into the saliva after which it's absorbed again and so on.

That's why it makes sense that symptoms last relatively long.

So, sadly, I have to put nitrate-rich foods like spinach, all greens, beets, carrots etc. on the red list and continue to cook with nitrate-free mineral water.

I will check isolated sugar from fruit next. I will use dates as they are low in acid so I can separate the acid effect (seems like it's bad) from the sugar effect (tbd).
 

Wonkmonk

Senior Member
Messages
938
Likes
1,314
Location
Germany
Oh, and btw, I am relatively certain it is about the nitrates and not about the "green" part of the greens, because the exact same effect occurs with white cabbage which only has very low amounts of chlorophyll and carotenoids. I also had symptoms when I drank large amounts of tab water (contains nitrate in my region).

But most reveallingly, I had the exact same symptoms when I took a nitrate pill which people may take to lower blood pressure (contains isosorbidedinitrate). I am fairly certain that nitrates should be avoided as much as possible from whatever source.
 
Last edited:

Wonkmonk

Senior Member
Messages
938
Likes
1,314
Location
Germany
I found out that I did not take Vit. D (20,000IU per months) in February and March, which likely brought me below 20 ng/ml. Vit. D deficiency always leads to a flare up in symptoms. That's what's so difficult: I have to get everything right. As soon as one thing is wrong (this case, Vit. D), all gains are lost.

That means I have to check all the foods of the last 3-4 weeks again, because the Vit. D deficiency could have been a confounding factor.
 

Wonkmonk

Senior Member
Messages
938
Likes
1,314
Location
Germany
Not so sure about sugar, but organic acids definitely are important, even if largely isolated from what also seems to be problematic (sugar/fructose, nitrate, protein/lysine, fat).

I suspect citric acid to have the strongest negative effect. Reactions to citrus fruit are heavier than to sour blueberries or apples. I had the an eggplant dip with the juice of one medium lemon on Sunday evening (and some blueberries the next day) and still having symptoms, mostly heart palpitations and brain fog.
 

maddietod

Senior Member
Messages
2,754
Likes
2,635
Location
Baltimore, MD
Oh, and if you're new to this thread and you think "This guy is nuts," I have no hard feelings. I would think exactly the same if someone else wrote this, but the benefits I derive from these strange dietary adjustment is very clear and very reliably reproducable.
Hi, Wonkmonk. I'm just hopping on to say that I'm new to this thread, and you're very sane. My food issues are similarly complicated but entirely different, and not useful to this conversation. But it's fun in a weird way to read someone else's journey into the swamp of dietary interventions. Thanks so much for sharing all these details as you explore.
 

Wonkmonk

Senior Member
Messages
938
Likes
1,314
Location
Germany
Hi, Wonkmonk. I'm just hopping on to say that I'm new to this thread, and you're very sane. ... Thanks so much for sharing all these details as you explore.
Thanks so much for your kind words!

I am mainly sharing this here because the potential for improvement is just MASSIVE and it completely reverses once I deviate from the dietary interventions, so it CAN'T be a coincidence.

So far it took me from almost very severe CFS to the moderate/severe boundary where I can go for longer walks, I am no longer in pain most of the time and I am almost thinking of being able to do errands myself or go buy groceries.

My thinking goes: I am probably not the only person on the planet who has this type of disease/problem and can improve like this and if one more person ever reads this and can similarly improve, then it's worth for me to write this thread.
 

Wonkmonk

Senior Member
Messages
938
Likes
1,314
Location
Germany
When I browsed the internet for weird dietary intervention success, I stumbled upon this video of Mikhaila Peterson where she describes how just eating meat cured her medically indiagnosable, debilitating chronic multi-symptom disease.


Her story seems even more astonishing then mine because what sent her into remission was a carnivore diet of only beef and salt.

I tried this once for a day or so, and obviously it made me worse, not better (beef = lots of lysine/protein which I seem to have to limit). I just wanted to cite it as an example that there are these type of miracle stories (I think she is credible).
 

Wonkmonk

Senior Member
Messages
938
Likes
1,314
Location
Germany
What complicates things is that foods stay in the stomach/small intestine for different amounts of time.

Lentils for example (lysine!) stay in the stomach/small intestine for up to 8 hours, where as fruit (acid/fructose/sugar!) start moving from the stomach to the small intestine after less than an hour.

I learned this the hard way a few days ago, when I tried to eat lentils alone in the morning (should work because it's lysine only) and then 5 hours later ate fruit (blueberry-date puree) which is acid plus sugar but might work on its own with no other foods combined (still checking that).

This caused a substantial crash for about 3 days, presumably because the fruit moved quickly through the stomach while the lentils were still being digested in the small intestine and therefore the lysine and acid/fructose/sugar mixed even though eaten at different meals.

It should theoretically work the other way round (fruit in the morning, lentils 5 hours later), because the fruit should have moved on when the lentils arrive in the small intestine. I will check that.

It may be worthwhile to always make legumes the last meal of the day because digestion takes so long and that way maybe mixing with other meals can be avoided.

This is one reason why it was so incredibly complicated to find out what the offending foods are and why I think if anyone else has the same thing, it will be incredibly hard to find out that disease severity is so closely related to food selection.
 
Messages
245
Likes
606
I think it could be for some people. As I've said before, we have no idea if we're all dealing with the same illness or etiology, or if there are 50 distinct disorders.

Mine seems connected to foods a bit, but it doesn't usually make huge differences unless I eat something like MSG which gives me a full PEM crash. Yet even a multi-day fast makes my symptoms 'better', but maybe a 5%-10% improvement on Hummingbird (I think that's the scale I'm thinking of) as opposed to a jump from severe to moderate or something.

It's frustrating because it feels like we're in the dark and not sure if we're pulling levers or pushing buttons and if any of the instruments are connected to anything or not.
if thats true and theres so many ways the presentation of the illness can be caused, then its strange that nobody seems to have discovered one of them yet ? on a specific scientific level I mean. I seem to be in the food doesn't make much difference camp, and dont have ibs like reactions but my stomach does ache in a certain way during some types of PEM and also seems to change when I crash or close to it.
 

hapl808

Senior Member
Messages
1,222
Likes
3,032
I tried the Carnivore diet and I found it somewhat helpful, but not enough of a difference to justify the drastic change in eating habits or potential deficiencies. There's just not enough data on it to satisfy my concerns unless it made a drastic difference in my ME/CFS, which it did not. It gave me the same temporary 'slight' benefits that lots of dietary changes seem to offer.

I've also tried keto, Wahl's, failsafe, various elimination diets, long term fasting, vegetarian, vegan, and on and on. I'm apolitical when it comes to my health - I just want to get better if at all possible and I don't care what helps me. The 'establishment' will just tell me to go see my doctor, but over the last 20 years they've done far more harm than good, and I consider myself lucky to have avoided some of the awful problems people here have had with physicians.

My skepticism of Mikhaila and her father is the same as my skepticism of all people who claim to have found cures or treatments. If you listen to their stories, very quickly you find that they are still struggling with the exact same issues, but they 'believe' that their intervention has improved things. I'm not sure either of them has what would be counted as a cure or remission, but I stopped following their story years ago.
 
Last edited by a moderator:

Alvin2

The good news is patients don't die the bad news..
Messages
2,713
Likes
6,432
"Fixed" by a diet that would cause nutrient deficits as you mention which is often explained by experts.
Not consuming essential vitamins and nutrients will cause health issues no matter how strongly they deny it.
A beef only diet is extremely bad for your health.
I had read an account of someone who did it for a month, he was in very bad shape by the end of it, iirc he said a couple months later he was still not quite recovered :eek:
 
Last edited by a moderator:

hapl808

Senior Member
Messages
1,222
Likes
3,032
I just think their 'activism' would be much more 'easy answers' if Jordan didn't seem to be regularly having mental health crises and his daughter's health weren't still so compromised. They just seem to be two people struggling and trying to find answers.

I try to give people the benefit of the doubt when it comes to their own health, even if I disagree with their approach. I'm sure 99% of people would disagree with my own health care. Doctors told me to 'push through' (which I stupidly listened to), friends encouraged me to push harder with physical therapy, I was often prescribed more benzos (which I refused to take) or offered opioids (why?), told to eat things that fucked up my digestion, etc.

I do agree with you that there aren't a lot of easy answers. But I'm still going to try high dose thiamine, selenium on an empty stomach, methylation protocols, every diet that someone says helped them, etc. These may be 'easy answers' to some, but I'll take any answers I can find.
 
Last edited by a moderator:

hapl808

Senior Member
Messages
1,222
Likes
3,032
I would also say that the threads here about people having ME/CFS flares after vaccination would be considered political by some, whereas I just view them as what we are - outliers in a system that does not like to hear from outliers. Most of us can't even get our doctors to listen to anything outside of 'normal' reactions, so we have to be careful on how we present so we're not marked off as crazy conspiracy theorists for just discussing our own personal symptoms. ("There's no way one doctor's visit could 'crash' you, so you're either lying or need some antidepressants. Now please get out of my office so I can see someone with 'real' problems.")
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,713
Likes
6,432
I just think their 'activism' would be much more 'easy answers' if Jordan didn't seem to be regularly having mental health crises and his daughter's health weren't still so compromised. They just seem to be two people struggling and trying to find answers.

I try to give people the benefit of the doubt when it comes to their own health, even if I disagree with their approach. I'm sure 99% of people would disagree with my own health care. Doctors told me to 'push through' (which I stupidly listened to), friends encouraged me to push harder with physical therapy, I was often prescribed more benzos (which I refused to take) or offered opioids (why?), told to eat things that fucked up my digestion, etc.

I do agree with you that there aren't a lot of easy answers. But I'm still going to try high dose thiamine, selenium on an empty stomach, methylation protocols, every diet that someone says helped them, etc. These may be 'easy answers' to some, but I'll take any answers I can find.
I get what you are saying but they have earned my disdain, i don't offer it to anyone by default.

I have been through the same ME/CFS wringer as you have, but i don't grasp at straws, the all beef diet is silly.

There have been members that have done well on a keto diet for example, thats reasonable, we have energy metabolism issues and if sugars are not being metabolized but protein and fat is and helped their symptoms than that at least can be scientific.
 
Last edited by a moderator: