Treatment for SIBO, leaky gut and general gut dysbiosis

[EddieB]

I did a lot of testing so far regarding my CFS and nothing turned out to be wrong with me (on the surface at least). What they did find though is, that I have a dysbiosis in the gut (microbiome), SIBO and a leaky gut. With that information provided by the doctors, I decided to stick to this treatment-sub-forum for now as I think that it could help me the most to ease my symptoms.

Now my questions would be the followings:

How would you suggest to treat the mentioned conditions? Did anybody with these conditions experience major relieve of the CFS symptoms? I've already tried rifixamin (antibiotic mainly used for traveller's diarrhea and SIBO) but with no success. Is there any treatment protocols for this ? I've heared that the keto-diet could be of use here as well.

I am very thankful for everyone's suggestions!

Wanted to check in and see if you’re still pursuing this. Any updates?

 

[EddieB]

for totally disabling epigastric pain

kangaSue, could you describe this further please? And any theory on how fmt helped it?
I have reoccurring pain that rises up from my stomach, into the throat, and sometimes the jaw. Endoscopy shows only mild gastritis. X-ray and scans show nothing. It comes and goes, but is pure agony.

 

[Rufous McKinney]

I found these You Tube Videos by the Gut Doctor, which contain great video graphics of the Functioning gut...maybe these might be helpful...there is a acid reflux one.....gosh the eosphagus is long!

 

[kangaSue]

kangaSue, could you describe this further please?

I have impaired microvascular blood flow to the bowel so eating causes some epigastric pain because the increased demand for blood flow during the digestion process isn't fully being met. My GI system would just randomly shut down occasionally and the epigastric pain would ramp up significantly, to the point where breathing hurt and I couldn't stand upright (chronic intestinal ischemia flaring to an acute ischemic event).

Pain for me in these acute attacks is mostly epigastric (often constant but can come and go in waves) but can radiate to the LUQ, and sometimes to the left shoulder or lower back. I don't have any issue of pain in the throat or jaw area

And any theory on how fmt helped it?

I assume FMT helped with epigastric pain by immediately addressing a gut bacterial imbalance (due to a diet that includes little in the way of fat or fiber - the joys of having chronic gastroparesis). I suspect the cessation of the acute events in the longer term though came about from taking a vasodilator med (for the intestinal ischemia), and the growth of collaterals to get more blood flow to the bowel during the digestion period. Having (idiopathic) Autonomic Neuropathy causing low bp though could be a factor affecting bowel blood distribution and contributing to pain not resolving more fully.

 

[EddieB]

Oh, do we have our troubles. I’m sorry you’re having to deal with this. From what you described, I have something different going on. I have pain from the stomach coming up the throat.

I have impaired microvascular blood flow to the bowel

So this is not something I’ve heard about, celiac artery that’s obstructed?

My friend/ neighbor has a device called a bemer. It is supposed to use magnetic pulse (PEMF) to increase micro blood flow. Could something like that possibly be helpful to you?

by immediately addressing a gut bacterial imbalance

I believe this is where my troubles originate from.

 

[kangaSue]

From what you described, I have something different going on. I have pain from the stomach coming up the throat.

Do you get chest pains from it as well? Jackhammer or Nutcracker Esophagus can cause chest pain and/or throat or jaw pain. Sublingual nitrate spray can be effective for either of these.

So this is not something I’ve heard about, celiac artery that’s obstructed?

Yeah, celiac artery stenosis can cause the same symptoms. I have been tested for this in ruling out Median Arcuate Ligament Syndrome as a cause of my GI problems and don't have any occluded bowel arteries. Impaired microvascular blood flow is also the end result from celiac artery stenosis though.

My friend/ neighbor has a device called a bemer. It is supposed to use magnetic pulse (PEMF) to increase micro blood flow. Could something like that possibly be helpful to you?

I have an implanted Gastric Pacemaker to help with gastroparesis symptoms so stay away from using other sources of electrical stimulation (TENS, Interferential Current Therapy or PEMF) just in case it's messes up the benefit I get from the implant.

 

[kangaSue]

I found these You Tube Videos by the Gut Doctor, which contain great video graphics of the Functioning gut

Dr Vincent Ho (the Gut Doxctor) is one of Australia's leading experts on gastroparesis.

 

[Hope4]

For intestinal distress,
I have used iodine, nattokinase, digestive enzymes with extra pancreatic enzymes, ox bile, and L-Glutamine. Slippery elm and boiled okra have helped some too.

Also avoiding foods and other substances which I have found out cause me trouble.

Some of the things I avoid:

anything processed, additives, preservatives, etc.
grains, legumes (except green beans)
salicylates
anything that promotes growth of bacteria or fungi (the usual things: sweets and starches, dried fruit, nuts/nut butters, cheese)
nut and seed oils (due to Omega-6 and inflammation)

I use the FailSafe Diet from the Prince Albert Hospital Allergy Unit (in Australia) as a basis for eliminating the chemicals which naturally occur in foods, which might be problematic.

I don't eat food that other people make or cook.

I cook meat on low heat and not for too long.

----

Being careful about meal timing and amounts, being strict about food sources, and taking the supplements has helped a lot.

Being careful about washing dishes and cookware very thoroughly to rule out possible contamination.

Not eating food which is too old, or which might have been left too long in the temperature range of 45 - 150 degrees (Fahrenheit), which promotes growth of pathogens.

I have to stay careful or the intestinal distress returns.

For some time, I have to just eat beef, plain beef gelatin, and could add milk made more digestible with rennet tablets (Junket), and then added some yoghurt. Homemade yoghurt does better than store-bought. Then added green beans. Later okra.

 

[EddieB]

Do you get chest pains from it as well?

Yes.

Nutcracker Esophagus can cause

This supposedly was ruled out, but they tried treating me for it anyway with andiDs and klonopin, which was a disaster.

Sublingual nitrate spray

Is this by script?

so stay away from using other sources of electrical stimulation

Yeh, that wouldn’t work...

I’m also trapped on PPIs which I’m sure is adding to the problem.

 

[kangaSue]

Is this by script?

It's by script in Australia but that's not the case for every country.

I’m also trapped on PPIs which I’m sure is adding to the problem.

I found all the acid blockers weren't helping. My reflux improved significantly from ditching them all and just having sodium bicarbonate an hour before food. I get rebound acidity from stoppin PPI's though and the reflux got much worse before it all settled down, which took about 10 weeks.

As it happens, I've just been reading an interesting paper about GERD that tells me what I already knew - that
it's not a condition where one size does fits all, and not every patient benefits from increased potency of doses for acid inhibition;
https://www.cghjournal.org/article/S1542-3565(19)30748-7/fulltext#

 

[EddieB]

I found all the acid blockers weren't helping

I’m fairly certain that the reflux is being caused by whatever is going wrong below. I had gut troubles long before I ever had reflux.

A year or so ago, I had a brief, but significant improvement while on an antiD. The reflux also backed off and I halved the dose of PPI. I believe one of two things happened,
- the antiD changed the gut flora, disrupting the overgrowth
- the antiD acted as a motility agent

But it didn’t last, and left me in a much worse condition. So no more of that.

sodium bicarbonate an hour before food.

Interesting that you used the baking soda before meals. I know I have to get off those things.

 

[EddieB]

Also, came across this, about using guar gum to boost the effectiveness of Rifamixin,
https://pubmed.ncbi.nlm.nih.gov/20937045/

 

[bertiedog]

Also, came across this, about using guar gum to boost the effectiveness of Rifamixin,
https://pubmed.ncbi.nlm.nih.gov/20937045/

I have used this before but it actually gave me terrible SIBO so had to stop it. Really didn't suit me at all but of course it all depends what one's actually issues are - mine are hydrogen and methane going by my symptoms and the benefit I got from 10 days of Rifaximin and my last Genova GI Effects stool test showing high methane archea. This would make sense going by the symptoms I have had for a very long time, and IBS mixed picture.

I realise I am very fortunate in that I have never had reflux at any time, symptoms apart from the bowel ones are bloating and pain under my ribs but these have virtually gone away since the Rifaximin unless I eat a slightly too strong Tikka Masala which I really like!

Pam

 

[EddieB]

I have used this before but it actually gave me terrible SIBO

Well, that’s not good.
I kinda wondered about that after researching it further. It’s a fiber, which technically feeds the bacteria.

Now I’m thinking this may be along the lines of Dr Pimentel’s suggestion, to eat high fodmap foods while taking the Rifamixin to draw the bacteria out to be killed off. But that isn’t going to work for everyone, as you discovered.

 

[bertiedog]

Now I’m thinking this may be along the lines of Dr Pimentel’s suggestion, to eat high fodmap foods while taking the Rifamixin to draw the bacteria out to be killed off. But that isn’t going to work for everyone, as you discovered.

Yes I tolerate many high formal foods without any problems but do things like cooking apple in the microwave and cooling it before eating it in relatively small amounts. I add it to frozen berries, psyllium husks, ground flax plus coconut yoghurt and have this sort of thing after my main meal(s). I am also ok with cooked onion and garlic which are very high fodmaps so I do think it goes to show how individual all this is.

Pam

 

[EddieB]

I may have mis-spoke about the fodmaps. I think he (Dr Pimental) said eat, and not to avoid carbohydrates during Rifamixin treatment.

The whole Cedar-Sinai SIBO diet is pretty liberal compared to what most are preaching.

How do you do with sugars? They are like putting gasoline on a fire for me.

 

[bertiedog]

ow do you do with sugars

They are a nightmare for me too and avoid them like the plague! I used to be a sugar junkie up till I was 50 and my health had deteriorated so much and learned about the negative effects so had to change my diet to a low carb zero sugar one (apart from that in low glycemic veg and fruits) and soon lost the taste at all for sugar. Now I hate it.

I was delighted last week to find Lizi's Low Carb low glycemic load Granola made mainly from oats and seeds with a tiny bit of nuts and coconut and of course no sugar. This has really suited me for breakfast with a few added frozen redcurrant and blackcurrants and coconut milk. It was such a relief to actually find something I could eat for breakfast that I didn't have an allergic reaction to. (Sorry a bit off topic but 3 weeks after my first Pfizer vaccine I had the first bad allergic reaction to my usual breakfast of egg, low carb gluten free bread and tiny bit of Gouda. Since then I have had another 11 reactions which vary in intensity from mild to severe and I really don't understand it as I have never had reactions like these in my 73 years, hence my delight in finding this Granola. I keep meaning to start a new thread to find out if others here have experienced anything like this since having the Covid vaccine).

Pam

 

[EddieB]

They are a nightmare for me too and avoid them like the plague!

Last year, around this time, I ate a cookie. One cookie. About 3 hours later, stabbing pain in the lower gut, cramps and diarrhea. Pain lasted through that night and into the next day. So yes, I avoid sugars.

have never had reactions like these

Im sorry you’re going through that. Hopefully they are lessening?

Also, my SIBO test came back negative. Great, now what?

 

[ljimbo423]

Also, my SIBO test came back negative. Great, now what?

How disappointing. Sorry this didn't give you some answers. Don't give up. There are answers to be found, although finding them can be a nightmare.

One cookie. About 3 hours later, stabbing pain in the lower gut, cramps and diarrhea. Pain lasted through that night and into the next day. So yes, I avoid sugars.

This would seem to indicate SIBO wouldn't it?

 

[EddieB]

How disappointing.

I knew I shouldn’t have gotten my hopes up, but I was so hoping to get some answers, big let down.

This would seem to indicate SIBO wouldn't it?

You’d sure think so.

As we speak, the just got the results from the GI map testing. I can PM them to you if you’re interested.