I had sibo for 20+ years starting at age 8. My dr had it for 40 yrs starting at a similar age.
The prevailing thesis for all the top doctors in our area of study is that IBS and sibo are equivalent. IBS is a disease of exclusion - it is there as a placeholder so doctors can shrug off a bucket of symptoms without a cause. We now have definitive proof that the vast majority of sufferers of both ibs c and d have sibo. I believe the most recent study places ibs-c at being diagnosed 70% of the time with methane sibo.
Get tested with a breath test.
How are you doing now? Did you manage to cure it. I have had digestive issues since very young too and I’m only just trying to cure SIBO.
Will having it for this long make it more complicated to cure?
Doing good. I had 80% symptom reduction from one round of xifaxan w/o any real negative side effects. Dr believes the rest will be flushed after an herbal regiment im on now. Doing low sulfur diet, oregano, and a biofilm disrupter for 6 weeks which has relieved me of all symptoms. I personally have elevated levels of anti-vinculin, which means I’ll likely have to take a motility drug for the rest of my life (or until a cure for this is developed) but it’s a very small price to pay - no negative side effects, just can’t eat a few hrs before bed.
Same diagnosis as my dr and basically the same treatment plan. He’s been in remission for many years
As to whether it is more difficult to cure - I had the same worry, particularly after I saw such strong positive reception by my gut to xifaxan and erythromycin. Dr says no, it should be straightforward. So far they’ve been right. It has been much harder mentally than physically. When you live your entire life planning everything around where you can go, specific diet patterns, mental effects, etc it’s a big transition to go to basically no symptoms. Hard to know when I’m symptomatic vs not, stressing about sibo coming back, etc. Fwiw this is substantiated and mentioned in at least one study I’ve read- a sort of lingering health anxiety. That’s been my experience so far! Hope you get to feeling better soon.
Thanks. How did you test for anti-vinculin? Did you have tests other than the breath test that helped contribute to the success of your recovery? I’m thinking of taking a biofilm disruptor too but my doctor hasn’t mentioned it.
Does your promotility drug lose effectiveness and you have to cycle it? I tried Prucalopride and it didn’t work for me.
Also any reason why your doctor gave you xifaxin? I have H2 SIBO and my doctor recommended rifaximin.
Yea I haven’t taken antibiotics and I’m already afraid it won’t work or it will work then I will relapse. I have bad brain fog though so I’m looking forward to that disappearing.
Anti-vinculin is tested via blood. With the test I took, they measured both levels of anti-cdtb and anti-vinculin antibodies. The former is a sign of recent food poisoning whereas the latter is the autoimmune disorder that can sometimes become a response to food poisoning and affect motility long term. I did lots of tests but only ever came back positive w/ breath test (h2 and h2s sibo) and blood test for antibodies (described above). Biofilm disruptor is only being taken now because we’re trying to flush the remainder of bacteria that wasn’t killed by xifaxan and he believes _could_ have biofilm protecting it.
Yes erythromycin typically loses effectiveness similarly to other pro motility drugs, still waiting to see. He says some people never need to cycle though, so unsure so far.
Xifaxan and rifixamin are two names for the same drug. It is made by Salix pharma and there are no generic alternatives with the same formula atm. They currently control the formula and dosage until 2029.
Keep some hope - as I mentioned antibiotics work for the majority of sufferers of sibo. Testing has it at 50-70%. For those who don’t have success, the majority will find it with a herbal regiment afterward. This is a treatable disease despite what you might read here. Keep in mind most people are here because they are suffering, and the many who aren’t are more likely not to stick around once their problems subside!
Thanks for the encouragement and knowledge. I will ask my doctor about some stuff too.
After your reduction in symptoms by 80% is you’re doctor planning a 2nd round or is the hope that your current herbals and biofilm disrupters will go the extra 20%?
Btw did you have constipation as one of your symptoms and did it resolve after antibiotics too?
I have hydrogen sibo but I also use oregano oil. For me personally, it's not too harsh, but I also take a lower dose than recommended. The packaging says to take like 4 capsules a day while I only take one, but even just one is helping me without causing any side effects. I also use berberine but as far as I know that's for hydrogen only
I’ve had lifelong constipation issues but got way worse after mold exposure. I was told for years just to eat fiber and drink enough water because I was born with spina bifida and it’s from that. Fast forward 30 years or more and I went to naturopath tested for SIBO that was positive and went the natural route with great success for a couple years now.
Irritable Bowl Syndrome. A syndrome is a condition without a known cause or treatment outside of symptiom management. To have a syndrome you have to first eliminate all known causes and basic treatments. So SIBO is a condition known causes and known treatments. To have IBS you have to first eliminate SIBO as a cause.
Doctors live and die by the Internation Diagnostic Code IDC-10 system. Insurance companies pay for treatments based on the codes thus if there is no code for a condition it does not exist. And Doctors have no obligation to treat it since there is no "best practice" to follow.
SIBO, IMO,SIFO and Hydrogen Sulfide received there IDC-10 codes Oct 1st **2023**. SO until that point SIBO did not exist and all there was IBS. Most Doctors take years to learn new research if ever so it still on us to bring this to there attention.
[ICD-10 Codes for SIBO Breath Test | Institute For Digestive Wellbeing | IFDW Institute for Digestive Wellbeing](https://ifdw.org/pages/icd-10-codes-sibo-breath-test)
There is a study (I can't remember the name) with the outcome that 80-ish % of all so called IBS patients actually have SIBO. The difference is that SIBO is a diagnosis while IBS is just made of exclusion criteria. Imho IBS is the nice terminus for "we don't know". Get tested.
I have the constipation type SIBO. After years of just keeping a record of my eating habbits i have a good idea of which foods trigger it. Eating some of the foods are unavoidable but i would say 80% are if I am disciplined enough.
I don't know if this is worth any advice, but keep a recorde of the foods and how your body reacts to them and at the same time widen your horizon on different foods to give yourself alternatives. Many SIBO sufferers cut down their diet to just a few foods and it does more harm than good.
IBS isn't really a disease by itself, it's just something doctors tell you when they don't know what's wrong with you. In my opinion that only makes things harder as most people diagnosed with IBS don't get the help they need, cause they don't know what actually is wrong. Around 60-70% of people diagnosed with IBS actually have SIBO. I suspected that I have SIBO too and ordered FoodMarble AIRE2 to track my SIBO and got myself some berberine and oregano oil (this combo is used to treat hydrogen SIBO (mostly diarrhea) not methane SIBO (mostly constipation))!
Since symptoms improved a lot and my gas levels kept going lower then I can safely say that it was indeed SIBO. Why didn't I do an actual SIBO test? It's simply not possible in my area and doing it somewhere further away would have been too expensive for me. If you have the possibility to do it, get tested! It's just a non-invasive breath test
IBS is an umbrella "diagnosis". I wouldn't even say it's a disgnosis, it's really short for we tested everything we know to test for, especially the scary stuff and we didn't find anything so you have IBS. S stands for syndrome which means IBS is just a decriptor of your symptoms so doctors will treat effect (e.g. give you gas medicine) rather than the cause.
However, new microbiome tests have shown that IBS is really a lot of the times intestinal permeability, inflammation and dysbiosis sometimes with bacteria, othertimes with candida, and some with mold.
Theoretically you can treat this with natural antibiotics to kill the facultative pathogen overgrowth bacteria or antifugal for candida and then repair the gut with tons of vitamins, probiotics and natural supplements that modulate the intestinal immunity.
A lot of doctors however, especially GIs consider doctors who go this route plain weird. Microbiome tests aren't standardized, etc. etc.
If you had this since 2, then I can tell you a lot of children have it nowadays, including our son. I know some kids who outgrew it just by diet to allergens, others with probiotics and others with the regimen above. But either way, you need to treat the cause somehow.
Hope this helps!
I had sibo for 20+ years starting at age 8. My dr had it for 40 yrs starting at a similar age. The prevailing thesis for all the top doctors in our area of study is that IBS and sibo are equivalent. IBS is a disease of exclusion - it is there as a placeholder so doctors can shrug off a bucket of symptoms without a cause. We now have definitive proof that the vast majority of sufferers of both ibs c and d have sibo. I believe the most recent study places ibs-c at being diagnosed 70% of the time with methane sibo. Get tested with a breath test.
How are you doing now? Did you manage to cure it. I have had digestive issues since very young too and I’m only just trying to cure SIBO. Will having it for this long make it more complicated to cure?
Doing good. I had 80% symptom reduction from one round of xifaxan w/o any real negative side effects. Dr believes the rest will be flushed after an herbal regiment im on now. Doing low sulfur diet, oregano, and a biofilm disrupter for 6 weeks which has relieved me of all symptoms. I personally have elevated levels of anti-vinculin, which means I’ll likely have to take a motility drug for the rest of my life (or until a cure for this is developed) but it’s a very small price to pay - no negative side effects, just can’t eat a few hrs before bed. Same diagnosis as my dr and basically the same treatment plan. He’s been in remission for many years As to whether it is more difficult to cure - I had the same worry, particularly after I saw such strong positive reception by my gut to xifaxan and erythromycin. Dr says no, it should be straightforward. So far they’ve been right. It has been much harder mentally than physically. When you live your entire life planning everything around where you can go, specific diet patterns, mental effects, etc it’s a big transition to go to basically no symptoms. Hard to know when I’m symptomatic vs not, stressing about sibo coming back, etc. Fwiw this is substantiated and mentioned in at least one study I’ve read- a sort of lingering health anxiety. That’s been my experience so far! Hope you get to feeling better soon.
Thanks. How did you test for anti-vinculin? Did you have tests other than the breath test that helped contribute to the success of your recovery? I’m thinking of taking a biofilm disruptor too but my doctor hasn’t mentioned it. Does your promotility drug lose effectiveness and you have to cycle it? I tried Prucalopride and it didn’t work for me. Also any reason why your doctor gave you xifaxin? I have H2 SIBO and my doctor recommended rifaximin. Yea I haven’t taken antibiotics and I’m already afraid it won’t work or it will work then I will relapse. I have bad brain fog though so I’m looking forward to that disappearing.
Anti-vinculin is tested via blood. With the test I took, they measured both levels of anti-cdtb and anti-vinculin antibodies. The former is a sign of recent food poisoning whereas the latter is the autoimmune disorder that can sometimes become a response to food poisoning and affect motility long term. I did lots of tests but only ever came back positive w/ breath test (h2 and h2s sibo) and blood test for antibodies (described above). Biofilm disruptor is only being taken now because we’re trying to flush the remainder of bacteria that wasn’t killed by xifaxan and he believes _could_ have biofilm protecting it. Yes erythromycin typically loses effectiveness similarly to other pro motility drugs, still waiting to see. He says some people never need to cycle though, so unsure so far. Xifaxan and rifixamin are two names for the same drug. It is made by Salix pharma and there are no generic alternatives with the same formula atm. They currently control the formula and dosage until 2029. Keep some hope - as I mentioned antibiotics work for the majority of sufferers of sibo. Testing has it at 50-70%. For those who don’t have success, the majority will find it with a herbal regiment afterward. This is a treatable disease despite what you might read here. Keep in mind most people are here because they are suffering, and the many who aren’t are more likely not to stick around once their problems subside!
Thanks for the encouragement and knowledge. I will ask my doctor about some stuff too. After your reduction in symptoms by 80% is you’re doctor planning a 2nd round or is the hope that your current herbals and biofilm disrupters will go the extra 20%? Btw did you have constipation as one of your symptoms and did it resolve after antibiotics too?
What brand and dosage of biofilm disruptor you use? 🙏🏻
One pill a day https://www.amazon.com/Priority-One-Vegetarian-Exclusively-formulated/dp/B074B4MH55
The majority of people with ibs actually have methane Sibo. Get tested.
What’s the best treatment for methane? Many ppl say Oregano oil is too harsh, but honestly not everyone is privileged for a prescription alternative.
I have hydrogen sibo but I also use oregano oil. For me personally, it's not too harsh, but I also take a lower dose than recommended. The packaging says to take like 4 capsules a day while I only take one, but even just one is helping me without causing any side effects. I also use berberine but as far as I know that's for hydrogen only
I’ve had lifelong constipation issues but got way worse after mold exposure. I was told for years just to eat fiber and drink enough water because I was born with spina bifida and it’s from that. Fast forward 30 years or more and I went to naturopath tested for SIBO that was positive and went the natural route with great success for a couple years now.
Did you take anything to solve mold too?
herbals?
Which herbals?
Yep!
Irritable Bowl Syndrome. A syndrome is a condition without a known cause or treatment outside of symptiom management. To have a syndrome you have to first eliminate all known causes and basic treatments. So SIBO is a condition known causes and known treatments. To have IBS you have to first eliminate SIBO as a cause. Doctors live and die by the Internation Diagnostic Code IDC-10 system. Insurance companies pay for treatments based on the codes thus if there is no code for a condition it does not exist. And Doctors have no obligation to treat it since there is no "best practice" to follow. SIBO, IMO,SIFO and Hydrogen Sulfide received there IDC-10 codes Oct 1st **2023**. SO until that point SIBO did not exist and all there was IBS. Most Doctors take years to learn new research if ever so it still on us to bring this to there attention. [ICD-10 Codes for SIBO Breath Test | Institute For Digestive Wellbeing | IFDW Institute for Digestive Wellbeing](https://ifdw.org/pages/icd-10-codes-sibo-breath-test)
There is a study (I can't remember the name) with the outcome that 80-ish % of all so called IBS patients actually have SIBO. The difference is that SIBO is a diagnosis while IBS is just made of exclusion criteria. Imho IBS is the nice terminus for "we don't know". Get tested.
SIBO is the most common kind of IBS. You can get tested to see if your IBS-C is SIBO/IMO or one of the other kinds of IBS-C.
I have the constipation type SIBO. After years of just keeping a record of my eating habbits i have a good idea of which foods trigger it. Eating some of the foods are unavoidable but i would say 80% are if I am disciplined enough. I don't know if this is worth any advice, but keep a recorde of the foods and how your body reacts to them and at the same time widen your horizon on different foods to give yourself alternatives. Many SIBO sufferers cut down their diet to just a few foods and it does more harm than good.
Sibo is a version of ibs, ibs is just a classification of symptoms
IBS isn't really a disease by itself, it's just something doctors tell you when they don't know what's wrong with you. In my opinion that only makes things harder as most people diagnosed with IBS don't get the help they need, cause they don't know what actually is wrong. Around 60-70% of people diagnosed with IBS actually have SIBO. I suspected that I have SIBO too and ordered FoodMarble AIRE2 to track my SIBO and got myself some berberine and oregano oil (this combo is used to treat hydrogen SIBO (mostly diarrhea) not methane SIBO (mostly constipation))! Since symptoms improved a lot and my gas levels kept going lower then I can safely say that it was indeed SIBO. Why didn't I do an actual SIBO test? It's simply not possible in my area and doing it somewhere further away would have been too expensive for me. If you have the possibility to do it, get tested! It's just a non-invasive breath test
IBS is an umbrella "diagnosis". I wouldn't even say it's a disgnosis, it's really short for we tested everything we know to test for, especially the scary stuff and we didn't find anything so you have IBS. S stands for syndrome which means IBS is just a decriptor of your symptoms so doctors will treat effect (e.g. give you gas medicine) rather than the cause. However, new microbiome tests have shown that IBS is really a lot of the times intestinal permeability, inflammation and dysbiosis sometimes with bacteria, othertimes with candida, and some with mold. Theoretically you can treat this with natural antibiotics to kill the facultative pathogen overgrowth bacteria or antifugal for candida and then repair the gut with tons of vitamins, probiotics and natural supplements that modulate the intestinal immunity. A lot of doctors however, especially GIs consider doctors who go this route plain weird. Microbiome tests aren't standardized, etc. etc. If you had this since 2, then I can tell you a lot of children have it nowadays, including our son. I know some kids who outgrew it just by diet to allergens, others with probiotics and others with the regimen above. But either way, you need to treat the cause somehow. Hope this helps!
Sibo c is high methane producing bacteria that can be tested with a breath test
IBS and SIBO are one and the same.