• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Gut idea?

EddieB

Senior Member
Messages
609
Location
Northern southern California
the addition of antibiotics should quickly test the theory shouldn’t it?
Yes, for those that can tolerate antibiotics, it does work. Sort of the “nuclear option”; would need a complete rebuild of micro biome. And would require a doctor to prescribe.

About 12 years ago, a gastro talked me into trying a course of xifaxan. Testing for SIBO was scarce and unreliable back then. He said because it didn’t kill good bacteria, it should either help or do nothing. Wrong. After 3 days I was in agony, cramps, nausea, etc. I stuck it out for the 7 days, but it was a couple months before the effects subsided. The severe reaction should have been a clue to something, but till today, no one can tell me why. So for myself, I’d be terrified to try something like that again.

It sure would be nice to identify and knock down an offending virus/bacteria, without having to burn the house down.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
@ljimbo423 do you take prebiotics and probiotics? Also,did your dr give you rifaxamin?

I do take pre and probiotics. I don't have a doctor. I found a trusted online pharmacy, that had been in business for 20 years and found several people here that had bought from them successfully.

Once I found the Rifaximin on their website, I researched the type of generic drug it was and the company that made it. To make sure the drug I was getting was legit and it was.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I myself get improvement from diet but if dysbiosis and gut barrier function were the sole cause of our symptoms, fasting or an elemental diet, possibly with the addition of antibiotics should quickly test the theory shouldn’t it?

I don't know to be honest. My feeling is, it would depend on the person, the type of bacteria that are causing the dysbiosis and the type of antibiotic used to treat it.

I feel like a big mistake many people with ME/CFS have made is taking antibiotics to treat dysbiosis, without a low carb diet or even better an elemental diet. Because carbs, especially starchy carbs, feed inflammatory bacteria.

Taking antibiotics to get rid if SIBO or dysbiosis and eating a diet rich in carbs, is like trying to put out a fire by dumping a bucket of water on it with one hand and a bucket of gasoline on it with the other.

Then there are biofilms that make inflammatory bacteria very antibiotic resistant. I've seen estimates that 80-90% of inflammatory bacteria live in these biofilms. Unless these biofilms are penetrated and the bacteria destroyed within them, the SIBO or dysbiosis often continues to come back.

These are a few of the reasons IMO, SIBO and dysbiosis are often chronic conditions and so hard to put into remission and keep there.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I would be careful with oregano oil, it can torch your stomach/esophagus. Did mine.

I have been taking Oregano oil for about 3 years without issue. I do take it with a meal though. Did you take yours with a meal? I also don't take a highly concentrated form, it's just a 10:1 extract.

Some oil of oregano supplements are 70-80% percent carvacrol (the most active ingredient) which is a very powerful supplement.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
About 12 years ago, a gastro talked me into trying a course of xifaxan. Testing for SIBO was scarce and unreliable back then. He said because it didn’t kill good bacteria, it should either help or do nothing. Wrong.

That is wrong. Like all antibiotics, Rifaximin kills both good and bad bacteria. I don't believe there has ever been an antibiotic made, that doesn't. I don't think science has the knowledge or ability to be that specific with antibiotics yet.

After 3 days I was in agony, cramps, nausea, etc. I stuck it out for the 7 days, but it was a couple months before the effects subsided. The severe reaction should have been a clue to something, but till today, no one can tell me why. So for myself, I’d be terrified to try something like that again.

Sorry you had such a horrible experience with the Rifaximin. I didn't have any problem at all with it, except a few hours of loose stools one day. This is a good example I think, of how very different each persons dysbiosis can be.
 

Hopeful1976

Senior Member
Messages
345
I have been taking Oregano oil for about 3 years without issue. I do take it with a meal though. Did you take yours with a meal? I also don't take a highly concentrated form, it's just a 10:1 extract.

Some oil of oregano supplements are 70-80% percent carvacrol (the most active ingredient) which is a very powerful supplement.
Hi @ljimbo423 which make of oregano do you use? I'm uk and have been using higher nature oregano oil 50mg - I feel its maybe too strong? As we seem so similar in our m.e, I would appreciate knowing which you've been using. Thanks. And thanks for your input in this thread too. I really do value it
 
Last edited:

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Hi @ljimbo423 which make of oregano do you use? I'm uk and have been using higher nature oregano oil 50mg - I feel its maybe too strong? As we seem so similar in our m.e, I would appreciate knowing which you've been using. Thanks. And thanks for your input in this thread too. I really do value it

I use this one. However, there are liquid oil of oreganos' that are weaker and easier to adjust the dosage of. I use this one, it's only 3.5% carvacrol, to slowly increase my dose. I put 1-2 drops to start, in an empty capsule and just take it with some water.
 

kangaSue

Senior Member
Messages
1,861
Location
Brisbane, Australia
Something that I have seen suggested to be likely under diagnosed as a cause of intestinal permeability (and in the context of also having some degree of autonomic dysfunction) is chronic mesenteric ischemia (CMI). This is something few doctors realise can occur as a cause of only mild GI symptoms, and can occur without having evidence of stenosis of any of the main bowel arteries, chronic non-occlusive mesenteric ischemia (very much akin to what occurs in about 80% of cases of Ischemic Colitis (IC), and most often without the bloody diarrhea that tends to go with IC).

This is where autonomic dysfunction can come into it. Excessive dysfunction of a single blood flow regulator can precipitate intestinal ischemia so anything that can impair your cardiac output and/or regulation (i.e., vagus nerve dysfunction) can also affect the blood flow to the bowel

The intestinal mucosa layer is usually all that is affected, usually only occuring during the digestion process when the physiological demand for extra blood flow can't be met. With this, you might have severe debilitating abdominal soon after eating, or you might only have some mild abdominal symptoms, the latter quite possibly being put down to "just having IBS".

Very hard to prove CMI though as intestinal ischemia periods are very short lived and, as the mucosa layer is in a constant state of self repair, rarely causes any bowel or blood pathology to diagnose it from. There are no other specific tests for functional assessment of mucosal ischemia.

Trying things that can improve the blood flow to the bowel (nitric oxide boosters) can be all that you can do to see what happens. The catch 22 is that having intestinal permeability because of mucosal ischemia can render you intolerant of taking anything that can help with blood flow and for that matter, can be the same for the other usual suspects often recommended for gut healing.

Even if improving bowel blood flow helps with GI symptoms, the intolerance problems can still persist unless or until the cause of intestinal ischemia is eradicated (or fixed if it happens to be a vascular stenosis issue). Not easy to narrow down a cause when autonomic dysfunction is involved.

Clinical management of chronic mesenteric ischemia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498801/
[CMI is defined as insufficient blood supply to the gastrointestinal (GI) tract resulting in ischemic symptoms with duration of at least three months.1 Typical symptoms of CMI include postprandial abdominal pain with food aversion and weight loss. The abdominal pain is classically located in the mid-abdomen or epigastrium and starts usually 20–30 minutes after a meal with a duration of 1–2 hours. Atypical symptoms are constant abdominal discomfort, nausea, vomiting, diarrhea or constipation.1 Abdominal bruit may be present during physical examination; however, the “classic CMI triad” of postprandial abdominal pain, weight loss and abdominal bruit is only present in 16–22% of CMI patients.4,5

Chronic non-occlusive ischemia (NOMI) or “migraine abdominale”19 is characterized by symptoms of CMI in the absence of a vascular stenosis and is diagnosed in up to 13–16% of all CMI patients.10 Several pathophysiological mechanisms causing chronic NOMI have been suggested: underlying conditions such as cardiac and pulmonic insufficiency, shunts, occlusion of smaller arteries due to spasms or micro-emboli, and autonomic dysfunction. Therapy is directed to ameliorate the adverse effects of the underlying pathophysiological mechanism, that is vasodilating medication in case of autonomic dysfunction or optimizing oxygen supply to the GI tract in case of underlying cardiac or pulmonic disease. Successful treatment of these patients, however, is challenging because the etiology of chronic NOMI is not fully unraveled yet.]
 

knackers323

Senior Member
Messages
1,625
I don't know to be honest. My feeling is, it would depend on the person, the type of bacteria that are causing the dysbiosis and the type of antibiotic used to treat it.

I feel like a big mistake many people with ME/CFS have made is taking antibiotics to treat dysbiosis, without a low carb diet or even better an elemental diet. Because carbs, especially starchy carbs, feed inflammatory bacteria.

Taking antibiotics to get rid if SIBO or dysbiosis and eating a diet rich in carbs, is like trying to put out a fire by dumping a bucket of water on it with one hand and a bucket of gasoline on it with the other.

Then there are biofilms that make inflammatory bacteria very antibiotic resistant. I've seen estimates that 80-90% of inflammatory bacteria live in these biofilms. Unless these biofilms are penetrated and the bacteria destroyed within them, the SIBO or dysbiosis often continues to come back.

These are a few of the reasons IMO, SIBO and dysbiosis are often chronic conditions and so hard to put into remission and keep there.

Do you know if an elemental diet feeds gut bacteria, and if so which ones?

Do you have any idea how long without food it takes for gut bacteria to die off?

I’ve read it’s a matter of days

My guess is that bacteria can probably take some nutrients from an elemental diet but would be more beneficial to the good ones rather than bad ones

So if the gut bacteria and we’re a big part of the problem, we would likely see some decent improvement within a few days to a week of fasting and then an elemental diet
Antibiotics shouldn’t really need to be used to test the theory

If the bacteria and translocation is the root cause and this starvation doesn’t produce quick results, it could mean that it has somehow caused some damage to the brain and nervous system or it has triggered an autoimmune process and that fixing the gut problem may not reverse, at least not quickly

I have fasted for ten days previously.

After the first 12-24 hours without food, the benefit plateaued
 

tyson oberle

Senior Member
Messages
211
Location
tampa, florida
I do take pre and probiotics. I don't have a doctor. I found a trusted online pharmacy, that had been in business for 20 years and found several people here that had bought from them successfully.

Once I found the Rifaximin on their website, I researched the type of generic drug it was and the company that made it. To make sure the drug I was getting was legit and it was.
I think I would like to try Rifaximin. Can you tell me the online pharmacy that has legitimate Rifaximin?
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Do you know if an elemental diet feeds gut bacteria, and if so which ones?

An elemental diet (ED) is probably the best diet to treat SIBO/dysbiosis. Because the carbs in it are absorbed by the body very fast, leaving very little left for inflammatory bacteria.

I don't know of any way to tell which bacteria are being fed by what little food gets to them are. The downside of the ED is that it can't be maintained for very long without feeling drained and losing a ton of weight.

Do you have any idea how long without food it takes for gut bacteria to die off?

As I understand it, bacteria only have a 20 minute life cycle. So they wouldn't have to go without food for very long before they would die. However, they have evolved over millions of years and have learned ways to survive without us feeding them food.

Some of them can live off the mucus layer that lines our gut. Others have biofilms that might be a source of food for them and they might have other ways to sustain themselves.

My guess is that bacteria can probably take some nutrients from an elemental diet but would be more beneficial to the good ones rather than bad ones

I agree.

So if the gut bacteria and we’re a big part of the problem, we would likely see some decent improvement within a few days to a week of fasting and then an elemental diet
Antibiotics shouldn’t really need to be used to test the theory

I don't know. As I have said, these bacteria are extremely resourceful and also often live in biofilms, that are very hard to penetrate. Die-off symptoms could also make you feel much worse, for days, weeks or longer.

Treating the gut, from what I've learned, is as much of an art as it is a science and treatment is usually unique to the individual.

If the bacteria and translocation is the root cause and this starvation doesn’t produce quick results, it could mean that it has somehow caused some damage to the brain and nervous system or it has triggered an autoimmune process and that fixing the gut problem may not reverse, at least not quickly

It's certainly possible that dysbiosis and a leaky gut could trigger or be causing an autoimmune reaction and that could make it more difficult to treat it. However, it seems to be very, very difficult for many people without autoimmune illnesses of any kind to beat.