What a surprise - gut bad = m.e bad

[Hopeful1976]

So, my guts gone bad again and hey presto, all m.e symptoms have worsened drastically. Help me please! I don't know what else to try! Done everything and it still keeps going bad

 

[gregh286]

Yea seen this correlation zillion times.
Nil by mouth and lactoferrin.
Soft fruits after that.
But that's my approach mightnt b for all.

 

[Rufous McKinney]

Did you try going to a Chinese Traditional Medicine herbalist? Their herbs for the gut are outstanding.

 

[Jyoti]

What HAVE you done, @Hopeful1976? And what particular aspect of GI tract is affected? Is it upper? Lower? The entire length? I have just gone through a bout of bad GI stuff/bad ME stuff, so it is fresh for me, but there are so many variants and so many good ideas about how to stem the tide.

And it is unspeakably miserable while it is flaring.... You have my whole-hearted empathy.

 

[Hopeful1976]

What HAVE you done, @Hopeful1976? And what particular aspect of GI tract is affected? Is it upper? Lower? The entire length? I have just gone through a bout of bad GI stuff/bad ME stuff, so it is fresh for me, but there are so many variants and so many good ideas about how to stem the tide.

And it is unspeakably miserable while it is flaring.... You have my whole-hearted empathy.

I haven't done anything I can think of. I'm pretty sure it's to do with bacteria imbalance (nausea high up, lower bloating/constipation, intense fatigue ect). I already have no sugar in my diet, no gluten or dairy. At a loss on how to stop the bacteria getting out of control. Whatever is causing m.e, I feel, is doing it, as it can happen for no apparent reason that I can understand...

 

[Hopeful1976]

Did you try going to a Chinese Traditional Medicine herbalist? Their herbs for the gut are outstanding.

I haven't tried it, i am abit scared to in case things become even worse (i am a mum with children to care for....)

 

[JES]

I often notice as well when I'm doing worse, my gut is worse. Food tends to stay in my stomach, transit time is slowed down, I feel more ill from eating certain foods and antibacterials cause a bigger "herx". Whatever the type of bacteria are, I have come to the conclusion it is very difficult to eradicate them.

Diet worked for a while and still sort of works for me, but at the end of the day, unless you can become one of those Indians who claim to live on eating sunlight, the bacteria will just go hide and still use whatever food is left available. Antibacterials can again do part of the job, but aren't probably able to fully eradicate them either. I'm now attempting to treat my gut issues with certain prokinetic agents and see where it goes, at least that way I might be able to reduce SIBO.

 

[Jyoti]

Obviously, this is a fairly complex (multi-factorial) problem. I will share what has worked for me--it is all I have at this point. I have episodes of difficulty and times where my digestion is ok--never great, but not really problematic, just so you know what I am attempting to treat with the following:

1. d-limonene
2. potassium (I have a hx of hypokalemia and when my potassium drops, my digestion just stops)
3. herbal bitters and digestive enzymes before eating
4. less fiber--I tend to eat a lot of vegetables, so cut back when my digestion is difficult
5. umeboshi plum (dissolve some paste in hot water--excellent for nausea and GI distress)
6. goldenseal tincture (for me, this is the 'big gun' that I use only when nothing else helps)
7. vagus nerve stimulation (some ideas here: https://www.healthrising.org/forums...us-nerve-and-vagus-nerve-stimulation.179/)--i use cold water face dunks and massage mostly

I hope this sparks some explorations for you @Hopeful1976; but mostly, I hope you feel better soon!!! That is a relative wish (I realize I kind of hate it when people say that to me because it implies that I will feel fine tomorrow if all goes well and we know that isn't happening!) that this GI stuff abates and you can get back to a level of function that allows you to live your life and take care of your children more readily. Terrible feeling incapacitated when there are important people counting on you.

 

[Jyoti]

Oh, I forgot this: https://www.amazon.com/Michaels-Nat...&qid=1578261287&sprefix=antisi,aps,336&sr=8-2

Helps sometimes as well....

 

[Rufous McKinney]

i am abit scared to in case things become even worse

I take four herbs, in a powder form, that I get from an expert CTM herbalist and they only make life better. Very gentle.

They are for IBS-d....and if your having IBS -c or other issues you'd need to get a mix that works for your individual needs.

But it works quickly for what I deal with- a lifetime of gut issues. Things improve in 24 hours.

I also mostly eat cooked food. Warm, smooth, oily...(thats a translation). Salads, alot of raw food gives me considerable trouble. If I eat uncooked stuff, have at lunch and avoid at night.

 

[andyguitar]

I haven't tried it, i am abit scared to in case things become even worse (i am a mum with children to care for....)

Fairly safe type of treatment. You can always start with a small dose.

 

[Hopeful1976]

Not enough information

Gut bacteria imbalance starts and ends with diet. You're eating stuff that is bad for your gut bacteria, but only you can tell what that is.

(1) Eliminate harmful food (sugar, carbs, emulsifiers, preservatives).
(2) Add prebiotics and probiotics.
(3) Give it a few months.

So I've followed his advice for many years, and it's never cured me. The bad stomach always comes back, often with no apparent reason why. I am left thinking that whatever is the root of m.e is the cause of the bad gut.

 

[Frunobulax]

So I've followed his advice for many years, and it's never cured me. The bad stomach always comes back, often with no apparent reason why. I am left thinking that whatever is the root of m.e is the cause of the bad gut.

Then I would assume that the reason is not gut microbiome inbalance. It may be that you have fungi or other bad bugs that you'll have to get rid of. Unfortunately, our immune system is shot so that bad bugs have an easy time of returning. One remedy may be to increase stomach acid, as stomach acid kills bad bugs coming in through your digestive tract.

But there are other possibilities. You might be sensitive to one of the various antinutrients (lectins, oxalates and others) so you'll have to stop eating certain foods like nightshades (lectins), almonds/spinach (oxalates) and so on.

 

[EddieB]

Hello Hopeful,
This is exactly the middle of where I am. Gastro/severe nausea and fatigue symptoms that come and go for decades with no reasonable cause. Dozens of tests over the years that resulted in nothing.

Have you researched the Dr Chia/enterovirus theory? I’m sceptic of it being the cure all for everyone, but for a subset of us with reoccurring gastro symptoms, may be of importance. His office is about 4 hours from me, might as well be 400, I couldn’t make it that far. I have his product, Equilibrant, but don’t feel comfortable taking it without direction. Trying to get my PCP to get involved.

What have supplements have you tried? When I’ve tried taking pre/probiotics, I get a severe increase of symptoms. The same thing happened with iron pills. I’ve done a SIBO test that was negative. Still, can’t help but think it means something is overgrown.

Gregh286, please tell us what “nil” is, and more about lactoferrin, I just ordered some. I’m also have iron problems.

 

[gregh286]

Nil by mouth medical term.for no food.
Google lactoferrin best way.

 

[EddieB]

Nil by mouth medical term.for no food

As in live on lactoferrin?

 

[ljimbo423]

As in live on lactoferrin?

I think what he is saying, is to take it on an empty stomach, for it to work best.

 

[Murph]

Recently I felt like my symptoms had gone backwards dramatically. My gut was playing up at the same time. I weighed up the timings of everything and tried to work out which way the causation went.

In the end I reached a pretty clear conclusion: I'd been eating the wrong kind of peaches!

I'm FODMAP sensitive. I can't eat certain types of sugars. And the sugar content of different kinds of peaches is different (There's a great app that spells out all the different FODMAPS and what they are in.) Fodmaps are sugars that gut bacteria love. Eating a lot of one kind can make certain species of gut bacteria mutliply a lot and emit a lot of gases (which is what farts are made of!).

I'd been picking peaches off a local tree. They were delicious! But after three or four days of a peach each day my symptoms had gone from very mild to definitely moderate. I have a lot of responsibilties at the moment and I was failing to meet any of them and what's more I was bitter and angry. I was lying on the couch, moaning ,feeling like I could barely stand. To be clear, while my guts were bad, that wasn't the overwhelming problem. It really was classic ME/CFS symptoms - fatigue, irritiability and cognitive fog.

I looked up peaches on the app. While yellow peaches contain only sorbitol, which I'm okay with, clingstone peaches contain mannitol. I know I should not eat mannitol. The stolen peaches were clingstone peaches. So I stopped eating the peaches and here I am 6 days later feeling much better. Back to mild. Back to being able to walk the dog, look after my spouse, etc.

The lesson is to pay very careful attention to what you eat. Slight differences like a change in brand of some product (or a different variety of peach!) can make a big difference. If you have not tried going fodmap free, it's time to try it. It's quite easy really. Fodmaps are deeply backed by science (the app in question comes from a major university). If you have questions about them please ask me.

 

[EddieB]

If you have questions about them please ask me.

Do your ME symptoms follow your gastro flare ups?

I have been on a limited diet for years. Not a perfect FODMAP but in someways more restrictive. Very careful of everything I eat; no processed, organic, clean water, etc. I’m trapped on PPI’s for now, not good, want to get off.

I’ve had to stop eating anything with sugars. Something seriously shifted about 4 months ago. I’m not sure, but I think the Gaviscon Advanced I was taking caused it. It works wonders for silent reflux, but I noticed a lot more gas, cramps and bloating. It contains alginates. I’m afraid it fed something in my gut. I used to occasionally eat baked apple, honey, drink rice milk, I don’t dare now. Can’t even use a protein drink I used to drink daily; tried it a couple days ago and an hour later I was doubled over. Tried a tiny bit of a prebiotic, same result. Something is way out of wack. I did a SIBO test last May and it was negative. None of this is new, it’s gone on from time to time for many years. But this is one of the worst ever.

Decide to give the APO lactoferrin a try today. Took a half a capsule, about an hour later felt uncomfortable/nausea, but tolerable. Maybe a Herx?

 

[EddieB]

I think what he is saying, is to take it on an empty stomach, for it to work best.

Got it, thanks.