Has your severity NOT been affected by foods?

[Wishful]

My severity, and more importantly, the severity of my baseline symptoms, has been quite strongly affected by foods and my gut microbiome (and its response to foods). Rather than just assume that this is universal, I thought I'd pose the question. This isn't about whether you have IBS, allergies, or symptoms from some other digestive disorder; this is about your ME-specific symptoms.

My baseline can be normal for me for months, then something happens, such as losing a bacterial strain, and my baseline gets much worse. For that particular incident, I took a probiotic capsule and abruptly went back to my previous baseline. Various foods make my symptoms much worse. Foods can make the difference between unhappily trudging a short distance or enjoying a brisk multi-hr hike.

So, are there PWME who don't experience this gut-ME connection?

 

[Estel]

Hmm. That's a difficult question. I voted "not sure" because while there does seem to be a connection between my gut health and my ME symptoms (I generally feel better when my gut feels better) I haven't noticed that connection being affected by specific foods. But I may very well be missing something.

As a result, I am curious how that connection manifests for other members and how they identified the problem.

@Wishful Your experience with shifts in your microbiome is really interesting. How did you discover that problems arose from losing a particular strain? Did you need only one does of probiotic to solve them?

 

[ilivewithcfs]

I don't have this connection. I feel the same regardless of what I eat. I took tons of different probiotics with zero effect.
I still eat healthy most of the time though, just in case.

 

[Rufous McKinney]

Periodically I have some digestive problem/colon etc. 99% of the time it's not my stomach unless I get the full on gastroperesis event.

Usually it's hard to pin down why. Sometimes I can blame bread. I"m not gluten sensitive but it's too much or something sometimes, but even that I can't always tell. It's just easier to blame: bread.

I got a really lousy results back on cholesterol and triglycerides recently (I'm old, it's genetic). So now I"m not enjoying slathering butter on my bread. So forget that toast.

yes, If I was on a desert island I'd be craving bread, bread I want bread. And I am not supposed to eat any.

I think I mostly fixed SIBO or at least for now. More butyrate and the ellagic acid pill, the latter of which I don't take very often. Because it seems to slow down my digestion TOO much if I take it often.

 

[Treeman]

My baseline can be normal for me for months, then something happens, such as losing a bacterial strain, and my baseline gets much worse

I’m not sure how you can reach that conclusion? For me it’s more likely I catch an infection ( or have an infection reactivate) and that causes changes to my baseline health. I know I catch an infection due to the symptoms.

I have food intolerances, that causes changes, acid reflux and constipation but they make me feel crap rather than my baseline getting worse. Good luck.

 

[cfs since 1998]

No connection between food and severity for me.

 

[Wishful]

Good thing I asked, since for all I knew, all PWME had a strong food-severity connection.

@Wishful Your experience with shifts in your microbiome is really interesting. How did you discover that problems arose from losing a particular strain?

I think it was last year that I abruptly became intolerant of fermentable fibre. Non-fermentable (psyllium) was fine, but anything fermentable greatly increased my symptoms. That lasted about a year, then I had the idea of trying probiotics, which I hadn't thought of because I'd tried them before with no effect. One capsule, and my intolerance was gone, and it's still gone. Since we have 1000+ strains in our gut, I was really lucky that it was one of the 14 strains (lacto and bifido) in that capsule. It seems unlikely to lose such a common strain, but that seems to be the logical conclusion.

To @Treeman , I rarely get noticeable infections, and while they do increase my ME symptoms, they pass quickly. I've had intolerances (increasing my ME symptoms) to palmitic acid, proline, caffeine&theobromine, nightshades, brassicas, and most recently, something in plant embryos. The latter was cured by contaminated BBQ chicken, which flushed out my digestive tract quite well. The palmitic acid intolerance was treated by taking supplemental carnitine (critical for fatty acid transport), and disappeared after a few months. The proline one disappeared for no apparent reason. So, with these sorts of experiences, I conclude that there's a strong connection between my digestive system and my ME severity.

 

[Mary]

I crash regularly (PEM) if I exceed my energy envelope of 4 hours or so of light activity a day. Well, I'll do 4 hours of light activity in the first part of the day, and then have to rest all afternoon and then can do light cooking, maybe 30 minutes, depending, but usually don't do the dishes at night - afraid of going over the edge. Doing anything at night with other people (playing board games, watching a movie) is enough to push me over the edge too into crashing the next day.

Food doesn't seem to have any relation to my energy envelope. I do eat well - partly to keep from gaining weight which I do at the drop of a hat, and also I want to preserve the health that I do have. I know someone who is pre-diabetic and I want to scream at him - actually he's one of my brothers. He bought some "good for diabetics" cookies - they were supposedly low in sugar. Well, yeah, but they're pure starch, guaranteed to mess with his blood sugar. He has his health and is throwing it away. He's also on a statin, which increase the risk of diabetes by some 10 - 40%, depending. And they cause muscle damage etc and I gave him info on this and his reply was he'd talk to his doctor about lowering the statin. But not a word about taking responsibility for his diet and reversing his pre-diabetes. I've had to try so hard for so long to have the modicum of functioning that I do - I know we all have - so I have no patience with people who can't take a few simple steps to keep from destroying their health.

Sorry for the off-topic rant!