Recalcitrant SIBO ongoing for 3 years

[Bluebell]

If I were you, I would definitely try giving it up, and give up the coconut water at the same time. Zero coconut oil, and zero coconut water, and give it some days/weeks for an effect. In my case, I really had not connected the coconut oil to my digestive problem, because I did not get any immediate problems when I started it. And when I gave it up, I started feeling better in days, but in your case this has been years so could take a bit longer, if coconut is your problem.

Looking at your list of diet and supplements, you are taking a lot of different things. It's a lot of herbal stuff to be taking at once: cascara, artichoke, ginger, allicin, berberine, neem, cat's claw, SF722. I can tell you that if I took all that today, my stomach would go nuts and I would be in a lot of pain. Supplements and herbs promise so much, each one advertised to help this or that, but each one can be a stress on the system and cause adverse effects if not specifically needed by your body at this moment in time. Herbs have toxic components too.

Do you always take all your herbs and supplements and OTC medications (except T3) with food, or on their own? It can be irritating to the stomach if they are taken on an empty stomach.

For me magnesium glycinate (Doctor's Best brand) severely upset my digestion. Again I didn't realise at first, because the bad effect took a few weeks to come up. Stopped it and the stomach problems went.

Your poor digestive system is crying out for some TLC, and if I were you I would experiment with stopping all of the non-food additions: herbs, supplements and OTC medications. They can always be added back slowly one by one in the future, tested one by one for benefits and adverse reactions, and reviewed often to see if they are still helping or have started harming. The T3 medication I expect you are working with your doctor on.

Digestion thrives on regularity. For what it's worth, I'd say consider trying this:
- 3 meals a day at the same times every day
- outside of mealtimes, fast (don't eat)
- no drinking with meals (except a small amount coffee if you are having it)
- I don't know how much coffee you are having, but reduce it it down to a minimum and the least amount of liquid, and have it with a meal
- much later, possibly add a tiny bit of something to stimulate digestion 5-10 min before meals, such as a teaspoon of apple cider vinegar or a little bit of Swedish Bitters, in a very small amount of warm water, sipped slowly. Only if tolerated though. To start with, don't add anything so you don't affect the experiment of having food only
- drink room temperature water only, and only to thirst, well away from meals. Let food digest completely before drinking, and don't drink too close to your next meal either
- create balanced, satisfying, delicious-to-you meals. Personally I'd balance the meals with a little easily digested white rice or potato, as I find it works better for me, but I guess it depends on the person
- over time, aiming to experience real hunger before a meal, and a satisfied feeling after

However before doing any of that, if it were me I'd continue exactly as-is for a little while and test removing all coconut products from the diet. Would be useful to know if you are sensitive to it or not.

Then I'd do the rest of what I suggested above, whether the coconut removal helped or not.

What do you drink generally apart from coffee? And how many cups of coffee a day and in what form?

 

[dogtrainer]

If I were you, I would definitely try giving it up, and give up the coconut water at the same time. Zero coconut oil, and zero coconut water, and give it some days/weeks for an effect. In my case, I really had not connected the coconut oil to my digestive problem, because I did not get any immediate problems when I started it. And when I gave it up, I think I started feeling better in days, but in your case this has been years so could take a bit longer, if coconut is your problem.

Looking at your list of diet and supplements, you are taking a lot of different things. It's a lot of herbal stuff to be taking at once: cascara, artichoke, ginger, allicin, berberine, neem, cat's claw, SF722. I can tell you that if I took all that today, my stomach would go nuts and I would be in a lot of pain. Supplements and herbs promise so much, each one advertised to help this or that, but each one can be a stress on the system and cause adverse effects if not specifically needed by your body at this moment in time. Herbs have toxic components too.

Do you always take all your herbs and supplements and OTC medications (except T3) with food, or on their own? It can be irritating to the stomach if they are taken on an empty stomach.

For me magnesium glycinate (doctor's best) severely upset my digestion. Again I didn't realise at first, because the bad effect took a few weeks to come up. Stopped it and the stomach problems went.

Your poor digestive system is crying out for some TLC, and if I were you I would experiment with stopping all of of the non-food additions: herbs, supplements and OTC medications. They can always be added back slowly one by one in the future, tested one by one for benefits and adverse reactions, and reviewed often to see if they are still helping or have started harming. The T3 medication I expect you are working with your doctor on.

Digestion thrives on regularity. For what it's worth, I'd say consider trying this:
- 3 meals a day at the same times every day
- no drinking with meals
- much later, possibly a tiny bit of something to stimulate digestion 5-10 min before meals, such as teaspoon of apple cider vinegar or a little bit of Swedish Bitters, in a very small amount of warm water, sipped slowly. Only if tolerated though. To start with, don't add anything so you don't affect the experiment of having food only
- drink room temperature water, only to thirst, well away from meals
- create balanced, satisfying, delicious-to-you meals. Personally I'd balance the meals with a little easily digested white rice or potato, as I find it works better for me, but I guess it depends on the person
- over time, aiming to experience real hunger before a meal, and a satisfied feeling after

However before doing any of that, if it were me I'd continue exactly as-is for a little while and test removing all coconut products from the diet. Would be useful to know if you are sensitive to it or not.

Then I'd do the rest of what I suggested above, whether the coconut removal helped or not.

What do you drink generally?

Thanks for your advice and typing all that out. I will definitely cut out coconut products that’s an easy enough change.

ive tried to cut out everything but food and trust me I would love to stop taking stuff. But when I wake up bloated, and go to sleep bloated with no hunger at all it is always always painful to add food on top of that bloating. I have been bloated up and severely distended throughout a 48 hour fast. I’ve tried to just force and force and force meals regardless of my bloating level or hunger and it always ends with me being in such painful bloating that I have to cancel my schedule and stay home in bed until it passes.

but when I’m not symptomatic, I pretty much cut out most supps because my guts move. Problem is through the years I’m trending in the direction of symptomatic more than I am non-symptomatic. This lends itself to the idea that something is seriously blocking the normal digestive process, since it isn’t tied to any particular food. I started the SF722 with the idea that this could be a fungal overgrowth, as tiny amounts of glucose should NOT cause bloating 10 minutes after ingestion. It takes longer than that to reach the small intestine. I started the cats claw with the idea that it could take down some inflammation, which I definitely have. My guts get so hard and swollen that not even osmotics will pass thru. When I’m non-symptomatic everything feels “open” and 1-2 pills of magnesium will do it’s job! Just like they used to in my 20s!

SOOO all of this is to say that the fact that I still have good days and good weeks leads me to think that if I can align all the variables properly and address whatever fungal/bacterial issues I have going on...that I can get my intestines to REMAIN non-inflamed which will SUPPORT normal motility and bring back my appetite. I just Have not Figured out how.

yes I take herbs with food, unless it’s something like ginger to try and pass some gas after a meal. Artichoke, I take before. SF722, between meals. THANK YOU again for your advice!

 

[Bluebell]

I agree, never force yourself to eat when you are ill, best to just rest and don't eat. The 3 simple meals a day thing is more for day to day living when you are not ill and hoping to avoid another bad phase.

Hopefully you might identify what sets off the bad symptoms for you, as that could be such a good clue as to the cause. I expect you keep a daily diary of symptoms vs food/drink/supplements/medications taken/anything else going on.

Good luck with the coconut experiment! Even if it doesn't work, at least you'll have that info.

 

[Korven]

I got a GI MAP done last year, showed high bacillus, high strep, high pseudomonas.

everything else unremarkable. No h. Pylori.
I’ve tried single strain b. Longum, single strain S. Boullardi. No change.

do you know of any others that seem to work for my symptoms?

This study (Open-label pilot for treatment targeting gut dysbiosis in myalgic encephalomyelitis/chronic fatigue syndrome: neuropsychological symptoms and sex comparisons) showed good results with reducing strep count with erythromycin 400 mg x2 + D-lactate free probiotic (L. rhamnosus, B. lactis, B. breve, B. longum). But if you've already tried single strain B. longum and erythromycin without success I'm not sure if it's gonna help you.

Other "safer" strains that are supposed to improve gut health:

- L. Rhamnosus GG
- L. Plantarum
- L. Reuteri
- L. Gasseri
- Could even try E.coli probiotics such as Mutaflor or Symbioflor 2

To be completely honest I don't know if these will help you or just make things worse. Still I believe that repopulating the gut with beneficial bacteria can be super helpful for some things, my hand eczema that I've had for years completely resolved with taking L. plantarum. It was like a night and day difference, skin went from dry, red and itchy to supple and hydrated.

Finding ways to shift back the gut microbiome towards bifidobacterium/lactobacillus seems to be key. Some people fixed SIBO with large doses of Inulin FOS, which is obviously not Ray Peat approved. The polyphenols in cranberries and pomegranates could also help.

 

[dogtrainer]

This study (Open-label pilot for treatment targeting gut dysbiosis in myalgic encephalomyelitis/chronic fatigue syndrome: neuropsychological symptoms and sex comparisons) showed good results with reducing strep count with erythromycin 400 mg x2 + D-lactate free probiotic (L. rhamnosus, B. lactis, B. breve, B. longum). But if you've already tried single strain B. longum and erythromycin without success I'm not sure if it's gonna help you.

Other "safer" strains that are supposed to improve gut health:

- L. Rhamnosus GG
- L. Plantarum
- L. Reuteri
- L. Gasseri
- Could even try E.coli probiotics such as Mutaflor or Symbioflor 2

To be completely honest I don't know if these will help you or just make things worse. Still I believe that repopulating the gut with beneficial bacteria can be super helpful for some things, my hand eczema that I've had for years completely resolved with taking L. plantarum. It was like a night and day difference, skin went from dry, red and itchy to supple and hydrated.

Finding ways to shift back the gut microbiome towards bifidobacterium/lactobacillus seems to be key. Some people fixed SIBO with large doses of Inulin FOS, which is obviously not Ray Peat approved. The polyphenols in cranberries and pomegranates could also help.

Thanks very much. I will ask my doctor what she thinks about erythromycin.

 

[dogtrainer]

I am cautiously optimistic and feel I may have turner a corner with my three year struggle to digest.

the first thing I did was eat more. I decided there was no way fasting indefinitely would cure me. I never felt better when fasting - I still had gas that wouldn’t move. I decide to just eat more. I started with one fruit (melon). Just ate that all day long as much as I could.

I was very uncomfortable for a few meals but then miraculously the gas started moving. I was farting a lot all the time but that was better than being constantly bloated and toxic feeling. My poops were strange (mucous) and smelly at first. I’m assuming this is a shift in microbiome.

I stayed with just fruit for a day and then added green beans and cod.

then on the third day, I had an appetite in the middle of the morning. Haven’t felt an appetite in over two months at this point.

Then, I re-consulted my emails, food journals from the last time I felt well for a , and noted the interventions I was making at the time.

B1 high dose
Potassium rich foods
Magnesium bicarbonate
Systemic enzymes
Lactoferrin

my visceral therapist visit on June 18 said that I had some pretty deep scar tissue in my intestines which she massaged through my booty. She said I must have fallen on my **** at some point and not remembered. She also said my Ileocecal valve was inflamed/scarred up. No doubt to the constant infection of the last three years. She massaged the valve and it did feel softer afterwards. She encouraged me to keep taking enzymes consistently.

In addition to the interventions above this time I am noticing that If I can just keep stool moving I do not really bloat and burp. So I am taking cascara 425mg twice a day to keep me regular. My naturopath says this will cause a dependency and I should avoid taking it more than once a week. I think at this point a cascara/coffee dependency to go poop is better than letting the infection get a stronghold again. And I believe cascara twice a day is better than Zelnorm twice a day like my GI doc prescribed!

 

[Korven]

I am cautiously optimistic and feel I may have turner a corner with my three year struggle to digest.

the first thing I did was eat more. I decided there was no way fasting indefinitely would cure me. I never felt better when fasting - I still had gas that wouldn’t move. I decide to just eat more. I started with one fruit (melon). Just ate that all day long as much as I could.

I was very uncomfortable for a few meals but then miraculously the gas started moving. I was farting a lot all the time but that was better than being constantly bloated and toxic feeling. My poops were strange (mucous) and smelly at first. I’m assuming this is a shift in microbiome.

I stayed with just fruit for a day and then added green beans and cod.

then on the third day, I had an appetite in the middle of the morning. Haven’t felt an appetite in over two months at this point.

Then, I re-consulted my emails, food journals from the last time I felt well for a , and noted the interventions I was making at the time.

B1 high dose
Potassium rich foods
Magnesium bicarbonate
Systemic enzymes
Lactoferrin

my visceral therapist visit on June 18 said that I had some pretty deep scar tissue in my intestines which she massaged through my booty. She said I must have fallen on my **** at some point and not remembered. She also said my Ileocecal valve was inflamed/scarred up. No doubt to the constant infection of the last three years. She massaged the valve and it did feel softer afterwards. She encouraged me to keep taking enzymes consistently.

In addition to the interventions above this time I am noticing that If I can just keep stool moving I do not really bloat and burp. So I am taking cascara 425mg twice a day to keep me regular. My naturopath says this will cause a dependency and I should avoid taking it more than once a week. I think at this point a cascara/coffee dependency to go poop is better than letting the infection get a stronghold again. And I believe cascara twice a day is better than Zelnorm twice a day like my GI doc prescribed!

Awesome to hear!!!

Yeah I've disovered that massaging the ileocecal valve can really help move things along, here's a sort of guide on how to do it yourself:


View: https://www.youtube.com/watch?v=SopsK_1ybmc&ab_channel=DrDavidJockers


Used to have some serious issues with my IC valve when I ate a grain/starch heavy diet. Seems like SIBO really aggravates that area of the intestinal tract.

 

[Motif]

Did bad fat digestion cause my histamine issues?
I got Gilbert syndrome and maybe (but maybe not) this is causing my bad fat digestion.

Maybe this got me sibo . Sibo caused me zinc and copper deficiency that I can’t get rid of even with high doses and all this got me histamine intolerance.



How would you treat that, cause oregano oil , grapeseed extract and much more of that stuff got me terrible histamine symptoms , but no improvement after.

And could tight muscles (neck ; back , hips everything ) have something to do with this ?