What a surprise - gut bad = m.e bad

[EddieB]

Hopefull,
I’m sorry, didn't mean to take up your thread. Can you describe more of what’s going on?

 

[Rufous McKinney]

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.

Dunno- more than that might be going on....

I just had a disastrous IBS day and the body boiled over in inflammation and pain- In bed all day SEVERE ME.

Blame the food- sometimes that just does not work, something else is happening..

 

[EddieB]

I think that for some of us, there is more to it than food.
Yes, at better times in the past, if I ate something known to cause problems, I could expect trouble. But I’ve been on a super strict diet for a long time and symptoms continue to get worse. I'm doing all the right things, and my system wants no part of it. There has to be another variable.

 

[Frunobulax]

Dunno- more than that might be going on....

I just had a disastrous IBS day and the body boiled over in inflammation and pain- In bed all day SEVERE ME.

Blame the food- sometimes that just does not work, something else is happening..

You need to look past the day-to-day symptoms. Nutritional imbalances and leaky gut develop over decades and the only symptoms we get are diffuse. Sometimes symptoms get worse before they get better (detox).

Have a go at nutrition. Learn about the carbohydrate-insulin-model, antinutrients like lectins/oxalates/fodmaps, and leaky gut. Something might cause your issues that you consider to be completely healthy, but you're the only one who can do that diagnosis.

 

[EddieB]

Google lactoferrin best way.

Do you have a recommendation on how much to take a day? Taking 2 a day now (250 mg each) right now, seems to be tolerable.

 

[starlily88]

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

I feel badly for you. I have Gastroparesis (paralyzed stomach) and Colonic Inertia so my gut is bad all the time.
But if you don't have Gastritis, IBS, Gastroparesis - then see a doctor ASAP, or a GI.
Make sure you are emptying your bowels - that makes the gut worse if constipated.
I took reglan awhile ago to help my gut motility - but bad side effects like anxiety/depression, tardive dyskinesia.
I don't know what you mean "guts gone bad" - if you are cramping, take BENTYL for intestinal spasms.
Make sure you eat lightly - like just plain rice, boiled potato, oatmeal, hot water with few tbsp honey for hydration. Eat saltines to settle your tummy, a spot of Pepto Bismol.

 

[Hip]

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

When you say "gut's gone bad", can you be more precise? Do you know what gut condition you suffer from? SIBO? IBS? Dysbiosis?

If you know what you are suffering from, you can select the right treatment to keep you gut in better health. SIBO in particular causes fatigue symptoms, so if you have SIBO alongside ME/CFS, that will compound the fatigue.

 

[Hopeful1976]

When you say "gut's gone bad", can you be more precise? Do you know what gut condition you suffer from? SIBO? IBS? Dysbiosis?

If you know what you are suffering from, you can select the right treatment to keep you gut in better health. SIBO in particular causes fatigue symptoms, so if you have SIBO alongside ME/CFS, that will compound the fatigue.

I have a sour sensation in my mouth, a nausea through my stomach and bloating. It affects all other m.e symptoms, so when I'm getting these symptoms, I feel extra fatigue/ weakness ect.
I'm actually giving up now on fighting it and figuring out how to fix it. Tried everything. Nothing helps, or does a while then stops. I hate m.e so much. Hearing nothing from dr phair and others kills me. Cant the world see how utterly desperate we all are??? This suffering is so so wrong. If I was a brilliant scientist, I would work on a treatment or cure for free. If the answer really does just come down to having enough money to figure it all out, then shame on our world and the governments that hold the purse strings. Im utterly disgusted with being human in this unfeeling and uncaring world.

 

[Hip]

I'm actually giving up now on fighting it and figuring out how to fix it. Tried everything. Nothing helps, or does a while then stops.

What about your doctors, what do they say? If you have stomach symptoms, doctors should be able to investigate this, independently of your ME/CFS.

 

[Jyoti]

@Hopeful1976 --just wanting to say "I hear you." And of course I know that place you are in, that ugly, painful, despairing dead end where all of the hard-fought effort you have put out to create some improvement, some forward movement, comes to naught. I think we all do, which is one of the reasons why PR can be so helpful. I have yet to post on such a day myself, but I have plenty of them. And still, I find such comfort in the comradeship we all share. Your posting above reminds me that I am not alone and so I wanted to reach out and just remind you that you are not alone.

I will be hopeful for you today.

 

[Hopeful1976]

What about your doctors, what do they say? If you have stomach symptoms, doctors should be able to investigate this, independently of your ME/CFS.

Dr wont do a thing. I'm in the UK. They do nothing for is here.

 

[Hopeful1976]

@Hopeful1976 --just wanting to say "I hear you." And of course I know that place you are in, that ugly, painful, despairing dead end where all of the hard-fought effort you have put out to create some improvement, some forward movement, comes to naught. I think we all do, which is one of the reasons why PR can be so helpful. I have yet to post on such a day myself, but I have plenty of them. And still, I find such comfort in the comradeship we all share. Your posting above reminds me that I am not alone and so I wanted to reach out and just remind you that you are not alone.

I will be hopeful for you today.

Thank u. It means a lot to hear you. I do feel so alone at times.

 

[EddieB]

Hopefull,
I am so sorry you’re in a bad place. What I can say, is I know, because I’m in exactly the same place.

The sour taste/coating in the morning, the crushing weakness, and the non stop nausea. Lump in my throat that won’t go away. Everything I’ve tried that was supposed to help either does nothing or (usually) makes it worse. It’s like a parallel universe where nothing works. I’m happy for those that have found relief, but it’s so frustrating when you read about supplements and cures that have helped others, yet they do nothing (or worse) for us.

What I think is happening, is at night while we are asleep, gas is pushing up as a vapor past the stomach into the mouth. The gas is from dysbiosis, a very out of balance digestive system. The fatigue is a result of poor absorption, stress, toxins, and possibly low iron.

Although the wrong foods can add to the problem, I seriously believe it’s not going to solve it either. I’ve felt better, worse, with no change in diet. There has to be another variable.

My gastro has done endoscopy and colonoscopy, found nothing. He felt it’s a neurological problem, had me start taking mirtazapine last May, he claims it’s helped many of his patients with similar symptoms. I had a horrible flare up in symptoms when I started. They tapered off and I had a couple of OK months. Then the worst crash ever last Oct, been house/bed bound since.

I saw him last week, and showed him Dr. Chia’s research on enterovirus; at first he wasn’t too receptive, but now thinks it could be the cause. Both he and my PCP wrote letters referring me to him, we’ll see what happens.

All I can say is what I think I know at this point,
1. It’s possible we have a virus or bacteria disrupting our system, co existing like a parasite. For those of us with gastro problems, it’s in our gut, possibly in the CNS as well. Given time, our bodies should have recovered and rebalanced, but can’t.
2. We have a neurological/chemical imbalance as well, possibly caused by #1. Antidepressants may mask symptoms, but not indefinitely.
3. We have absorption/methylation problems, possibly caused by #1. Attributes to fatigue.
4. Until recently, I’d never tested iron levels, mine are off. Leads into the theory of our bodies “hiding” iron from circulation to withhold it from bacteria. Doctor wants me taking iron, so far, not going so good. Taking lactoferrin now, too soon to tell.

I don’t know what supplements/remedy’s you’ve tried, but like myself, it sounds like quite a few. In the past times when I’ve somewhat recovered, there was no “cure”, just rest. I keep telling myself that, and I can get better without some magic bullet. Where I feel I’ve blown it, was at those times to do more to capitalize on the improvement. I always seem to try helpful things when I’m already in the tank.

You are not alone, others like us have gotten better, and we can too. The mind battles we go through are as bad as the illness itself. In the meantime, we can compare notes and help each other with encouragement.
I too, will be hopeful for you today...

 

[Rufous McKinney]

doctors should be able to investigate this, independently of your ME/CFS.

But- whats wrong is likely intertwined with the ME. So they just look at is as a single symptom when there is in fact a long list.

I could go to some gastro person- and they will know nothing about ME.

 

[Rufous McKinney]

Tried everything. Nothing helps, or does a while then stops.

Chinese traditional herbs have helped my gut and stomach. Substantially reduces the severeity of symptoms.

Its the only thing I find that helps.

Weary- I simply stopped most protocols recently and you just watch it all unravel, literally, within hours. yet again.

So they help something alot, but don't cure it. Its still always: lurking...

And PEM is still- common.

 

[Rufous McKinney]

Hearing nothing from dr phair and others kills me. Cant the world see how utterly desperate we all are??? This suffering is so so wrong. If I was a brilliant scientist, I would work on a treatment or cure for free.

don't wish to whine but feel similarly.

We have this new Chief Science Officer at OMF (Dr. Tompkins)...so....WHATs the plan? Is there a Plan?

We hear we need a few 100 $$ for a new nannoneedle- Tick, Tock...whats with that?

update on Gulf War Syndrome Research? Anyone? Anything there for us?

Enervating...its enervating! (see Hanson lab, new name at Cornell)

 

[EddieB]

I could go to some gastro person- and they will know nothing about ME.

I’ve been to several over the years, no help. It amazes me that they won’t even talk about dysbiosis. Took me forever to find one that would even test for SIBO.

 

[BeADocToGoTo1]

I’ve been to several over the years, no help. It amazes me that they won’t even talk about dysbiosis. Took me forever to find one that would even test for SIBO.

Indeed. It is exactly why I wrote a book on it and sent it to my doctors (and there were many) and gastros in a few countries. Exocrine pancreatic insufficiency, SIBO, Candida overgrowth, dysbiosis, acid reflux, silent reflux, malabsorption, nutrition, nutrient deficiencies, metabolic effects of such deficiencies are all areas that you think a gastro would be an expert on. You would think the first thing they would want to know is all the details of what goes into your mouth and how it comes out the other end to get a picture of the gastro system. Sadly, nothing is further from what happens and I had to figure all those elements out myself.

The favorite go-tos like antacids, PPIs, colonoscopy, endoscopy are easy money makers. They did not show a thing in my case, and 4 doctors stated that my pancreas, stomach, esophagus, and intestines were fine. One gastro just told me to eat more fiber. The term microbiome was never uttered. Food and drink intake were never looked into. Nutrition tests like the organic acid tests are not even on the radar of gastros. Comprehensive stool tests or MRI of the abdomen were not brought up, until I was absolutely adamant they needed to be done. Not until I had asked for the right tests and spent a tremendous amount of time researching and experimenting on myself was I able to turn 6 years of misery around. Luckily there was a functional medicine doctor who was willing to order the tests for me.

Don't give up. You are your own strongest health advocate and have the most time of anyone to dedicate to research. Don't take no for an answer.

 

[Hopeful1976]

Hopefull,
I am so sorry you’re in a bad place. What I can say, is I know, because I’m in exactly the same place.

The sour taste/coating in the morning, the crushing weakness, and the non stop nausea. Lump in my throat that won’t go away. Everything I’ve tried that was supposed to help either does nothing or (usually) makes it worse. It’s like a parallel universe where nothing works. I’m happy for those that have found relief, but it’s so frustrating when you read about supplements and cures that have helped others, yet they do nothing (or worse) for us.

What I think is happening, is at night while we are asleep, gas is pushing up as a vapor past the stomach into the mouth. The gas is from dysbiosis, a very out of balance digestive system. The fatigue is a result of poor absorption, stress, toxins, and possibly low iron.

Although the wrong foods can add to the problem, I seriously believe it’s not going to solve it either. I’ve felt better, worse, with no change in diet. There has to be another variable.

My gastro has done endoscopy and colonoscopy, found nothing. He felt it’s a neurological problem, had me start taking mirtazapine last May, he claims it’s helped many of his patients with similar symptoms. I had a horrible flare up in symptoms when I started. They tapered off and I had a couple of OK months. Then the worst crash ever last Oct, been house/bed bound since.

I saw him last week, and showed him Dr. Chia’s research on enterovirus; at first he wasn’t too receptive, but now thinks it could be the cause. Both he and my PCP wrote letters referring me to him, we’ll see what happens.

All I can say is what I think I know at this point,
1. It’s possible we have a virus or bacteria disrupting our system, co existing like a parasite. For those of us with gastro problems, it’s in our gut, possibly in the CNS as well. Given time, our bodies should have recovered and rebalanced, but can’t.
2. We have a neurological/chemical imbalance as well, possibly caused by #1. Antidepressants may mask symptoms, but not indefinitely.
3. We have absorption/methylation problems, possibly caused by #1. Attributes to fatigue.
4. Until recently, I’d never tested iron levels, mine are off. Leads into the theory of our bodies “hiding” iron from circulation to withhold it from bacteria. Doctor wants me taking iron, so far, not going so good. Taking lactoferrin now, too soon to tell.

I don’t know what supplements/remedy’s you’ve tried, but like myself, it sounds like quite a few. In the past times when I’ve somewhat recovered, there was no “cure”, just rest. I keep telling myself that, and I can get better without some magic bullet. Where I feel I’ve blown it, was at those times to do more to capitalize on the improvement. I always seem to try helpful things when I’m already in the tank.

You are not alone, others like us have gotten better, and we can too. The mind battles we go through are as bad as the illness itself. In the meantime, we can compare notes and help each other with encouragement.
I too, will be hopeful for you today...

Thank you so much for taking the time to write to me and share your experiences. Knowing im not alone makes me feel a little less on my own. Your story certainly sounds like me... thank you for reaching out and caring enough to bet beside me today. It means so much...

 

[Judee]

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

Do you keep a food/symptom diary? Through the years we've uncovered food sensitivities to very odd things like cinnamon, coconut and sulfur/thiols. Look at everything you have been eating or taken lately even if it was something you could handle before, you may have developed a sensitivity now.

Nil by mouth and lactoferrin.
Soft fruits after that.

Thank you for that. I think that may help in my mom's diverticulitis situation. We tried avocados yesterday because her gut won't handle any strong fiber. They're listed as a fruit and they're very high in what I consider a gentle fiber. I'm going to add papaya today because that also seems gentle plus has natural digestive enzymes in it.

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

Can you tell me what they are? And what they help with? Are any of them Haritaki or Triphala?

Google lactoferrin best way.

Do you know if Goat's milk Colostrum counts? We have cow's milk allergy but I have some Goat's milk Colostrum in capsules.

EDIT:

I have a sour sensation in my mouth, a nausea through my stomach and bloating. It affects all other m.e symptoms, so when I'm getting these symptoms, I feel extra fatigue/ weakness ect.

Could your stomach be too empty? This always happens when my mom's stomach is empty but it took a while to figure out what was going on. Even just eating something small like a 1/2 cup applesauce takes the sour taste and nausea away and the extra fatigue/weakness could possibly be a hypoglycemic episode.