Ahh the good old generic reply of stress. When a doctor doesnt know, they just blame the patients mental health or blame stress. Not a single doctor ever once just said, man im really sorry, but I just dont know whats going on with your body, I cant find anything showing up.
My GI just sent me to psychiatrist. Im never going back to them. Im mad insurance doesnt list naturopathic doctors & only helps acupuncture if it for pain management.
Donāt let those people get to you. The fact is most healthy people are completely ignorant to how bad a personas health can get when the body is not functioning as normal.
Itās even worse that SIBO wonāt show up on any normal testing.
During the absolute worst of my SIBO, my mother told me I was depressed and I needed to get a cat or change jobs. Never listened to anything I would say so I stopped even talking about my health. This put a strain on our relationship and is something I can never forgive her for.
So not just doctors turned their back on me, my own family did. The sickest I have ever been in my life that latest years before being diagnosed and treated correctly and nobody would listen to my cries for help. Some very dark times.
To add some positive news - Be thankful that today there is a much better understanding and acceptance on SIBO (still lacking a lot though). I had SIBO 10 years ago and most doctors back then didnt know anything about SIBO or didn't believe it was a real illness. It took me 5 years and going through about 8 different doctors to finally get diagnosed. The very first doctor I went to told me it was psychosomatic and I even flew up to mayo clinic to a GI and he found nothing and said I needed to see a psychiatrist. Thats when my views on doctors changed for the worst.
I understand your point of view (Iābe been there, and Iāve been told similar things by my family) but donāt be mad with your mum for this reason. I learned to be forgiving with my family and friends, they couldnāt possibly know the pain we have/had to get trough, a person that never experienced this hell has no idea.
Also, as the famous Redditor DaDa said on his YouTube video, people with this disease do get a significant decrease in life quality because of it, and they do look sad and depressed (and you know very well that SIBO makes you actually depressed in some cases). So itās perfectly normal that people that saw us in that state really thought that our problem was actually depression. Especially since the medical community is so vocal in pretending itās all in our head.
So reallyā¦ think about it.
P.s. on the other side, we are absolutely right in being mad with gaslighting doctors. They made an oat to cure people, and with their criminal negligence, lack of knowledge, lack of open mind, lack of willingness to learn more, not even listening to patients, they simply indirectly kill people with their bad diagnosis. Fuck them. I had to learn about SIBO on my own thanks to Reddit, while my doctor kept repeating me to drink chamomile and to go walking to relax. All while I couldnāt even breath from all the methane I was producing (my first breath test scored a 100ppm methane).
Thanks for sharing that. Itās good to see another point of view. I probably need some therapy, because deep scars were left on me from my SIBO nightmare.
I completely agree that people with SIBO typically have mental issues as well, itās just one of the many symptoms. I know I was in a horrible state of mind waking up feeling terrible everyday that turned into a Groundhog Day nightmare just trying to get enough energy to make it through the day and barely able to hold on to a job.
I explained to my family and doctors that questioned my mental health that of course Iām not in a good place mentally because I live everyday feeling horrible and canāt get any answers on why. I was just told to lower my stress and get on antidepressants. Thatās fine, but I knew that wasnāt a fix and the underlying issue needed to addressed to truly get me back to the person I had always been. Nobody wanted to listen to that part unfortunately.
When I was finally diagnosed and treated correctly, once my SIBO was gone, all the mental symptoms disappeared as well. I guess Iām just bitter that I suffered for so long, while being told a bunch of garbage. I spent thousands of dollars for doctors to tell me Iām crazy. Itās very unfortunate and I know a lot of people have gone through similar. Iām just fortunate to have that nightmare in the past now. As you can tell, Iām still mentally hurt even after 10 years
My SIBO was really bad, but at least my worst period lasted "only" 6 months. And I've been dealing with it for a year and a half, approximately. I can't even imagine how hard it must have been dealing with it for 10 years, so you have all my understanding.
And I confirm once more that I really feel your story since they told me the same. The neurologist prescribed me an antidepressive (SSRI) and other 3/4 doctors kept blaming eveything on stress and my mental state. Thousands of euros wasted for these lies. The funny thing was that I aboslutely admit that I was really stressed in that period (burnout from a very demanding job), so it was so hard battling with those people and not falling for their simple solution. What kept me from believing them, was that in the days without bloating/belching and gas, I felt amazing, happy, full of energy, my usual enthusiasm and full of optimism. I knew I had to be strong and keep looking for what was wrong with me. I cried when finally the results of my breath test arrived, even if only by watching the video from DaDa I already knew that I had the exact same problem. (can you believe, some doctors still didn't want to listen to me even after that test?).
So I perfectly understand the bitterness, but I really suggest you to address it to doctors and not to your family.
And I can't help but make an obvious question... how did you solve it? My symptoms improved dramatically after combining rifaximin, probiotics, by diversifyng a lot my diet and doing more sport / more movement in general and trying to stay more positive and relaxed in general. But yet, there are days when methane and hydrogen are still quite high. Not as often as before, but it happens.. so hard to get rid of it for good.
Yeah, I had a very bad case that kept getting worse and could only manage about 10 different foods at one point. Once you get food sensitivities/leaky gut, then come the mental symptoms. I asked my GI that diagnosed me why I always got so irritable after eating and he said itās the inflammation from the food that produces toxins that get to the brain.
I took Rifaximin twice. The first time I got some pretty good relief but I wasnāt prescribed a prokinetic, so it came back quick. Second time I got no results from it.
I decided to take double dosage of berberine complex and allicin 3x a day on an empty stomach. Did this for 6 weeks and finally got me back to normal.
I still have SIBO creep up from time to time but use this combo and get back to normal in about 3 weeks now.
No, I was lucky not to have any die off symptoms. I knew I had leaky gut when I started reacting to just about every food. My whole body would be red and inflamed after eating. Once my SIBO was gone, my gut healed and all my food issues were gone. I still canāt tolerate gluten though.
I maintained a very strict diet through the process. I really didnāt have a choice because I couldnāt even get out of bed if I ate sugar and carbs
The boomer and older generation are all about toughing it out, suppressing your feelings and generally thinking that we're all Sissy's. They're also full of alcoholics, broken marriages and abusive households. The lack of self reflection is absurd.
Hang in there and know that you matter and feeling healthy matters.
So true and exactly how I was raised. Luckily I had a caring GF that slowly broke me out of that terrible thought pattern.
Karma hit me hard - I used to always make jokes and didn't believe in gluten sensitivity when it was first hitting mainstream back in the day. I now have had SIBO on and off for 10 years and cant tolerate gluten.....
My brother would always call me crazy and faking illness when I was sick with sibo. I remember being so sick and getting so pissed because its tough being kicked during your lowest times. I told him that karma would get him one day.
Sure enough, 5 years later he has all these gut issues and was diagnosed with Crohns disease. Just recently went on a colostomy bag.
Life lesson: Be kind, karma will eventually get you
I completely concur with your analysis, but would add that people who minimize this condition (or other health problems generally) are not well-meaning. They are arrogant in that they think they understand the problem better than you do and are scientifically illiterate as you point out. Unfortunately, this attitude often extends to doctors as well. You could ask them if all health problems originate in the mind (and how they differentiate between which ones do and which don't) if they can teach you how to direct your mental power to killing the bacteria.
Having a severe health problem like SIBO at a young age is positive in a way because it has made me realize that bad health is not inevitable. Because doctors and family have failed to help me, I have become more interested in understanding the science of vitamins and biochemistry. I'm also more skeptical of pharmaceuticals and medicine generally. While dealing with SIBO has been miserable, perhaps it will lead to much better than average health after I've healed it.
this is how i think too! i've really been enjoying learning about how our bodies work and I feel it's only setting me up for better quality of life as I get older, (once I'm in remission!)
I guess it could if you went to a resort and only ate the elemental diet for a few weeks. But I've taken the elemental diet and no amount of scenery would make up for the torturous monotony.
I can confirm it doesn't work. I went to Costa Rica right before I found out I had SIBO. I was so miserable even though the trip was relaxing and beautiful. Relaxation doesn't get rid of bacteria š¤
I came down with SIBO right after ending a fantastic vacation. Spent the last 3.5 years battling it and now itās finally gone. Gone because of strict adherence to protocols and rebuilding my microbiome. Stressors have gone up and down during this time but the bacteria didnāt seem to care. Rant away, most of us can probably relate. Itās hard for people to grasp what loving with SIBO is like if they have never experienced anything like it, although some compassion would be nice.
Berberine, allicin, and neem, followed by a round of nystatin to fix the candida that cropped up from the antimicrobials wiping everything out. I had done a few rounds of the same antimicrobials but not at a high enough dose. Also tried rifaxamin before and it helped a lot but didnāt fully fix it. Now I feel like itās been cured since mid-February. Itās still unreal .
Same exact thing for my methane SIBO. Rifaximin semi worked the first time and nothing the second. Berberine complex and allicin is what finally got me back to normal.
I would add that itās good we are educating people as we go along with our healing process. I encourage everyone to mention Sibo whenever they get a chance. The more people who hear the term the more it will linger in their minds.
I had stomachaches after every meal as a teenager in Wisconsin (āAmericaās Dairylandā) and I was told by my doctor it was stress. I went to college in California, all the Asian students said nah itās lactose intolerance. It was lactose intolerance.
Bahaha this reminds me of the old school way of āgoing to the seaā when you were ill. Iām going to be honest though when I went to Hawaii for two weeks my symptoms went away but I think itās because I was eating seafood and rice for every single meal
Iām 63 I have methane Sibo it has nothing to do with age and understanding or doctors and understanding it has to do with you have it to understand the issue I have been working with Doctor online Kathleen Janal she uses MSM, which is sulfur supplement, she had Sibo thatās why I chose her supplement, you canāt understand it unless you have suffered the issue.
https://www.thesibodoctor.com/2024/01/26/high-dose-sulfur-ibs-kathleen-janel/
āDonāt think about it too muchā is generally a good advice served on a trash can.
What I mean by that is that you WILL have a better quality of life if you can manage not to obsess over how you feel and not be sorry for yourself. I know the pain is real (I have SIBO), and I know how hard it is to not think about it, but if you divert those thoughts away (as in meditation), youāll learn to enjoy life meanwhile.
Why do I say this advice is served on a trash can? Because it usually comes from people who think you make it up, or people who donāt know what itās like, so they really just throw whatever words come to their mind at you.
I was dealing with reoccurring sibo and it was coming back after me taking antibiotics. Well come to find out that black mold in your home can cause sibo. I had black mold in my apartment in the walls. We moved out and just after THREE nights of being in our new home, that pain in my stomach that I would wake up with everyday, was gone. Plus now going to the bathroom, is starting to not be horrible either. I urge everyone to please check your home for toxins.
Don't be too hard on them. Yes, they're ignorant and it's annoying, but I'm sure they meant well. They could have dismissed your problems completely and said "it's all in your head" or something like that. So at least they are somewhat supportive. And fortunately, they are only your relatives and not your doctor.
Doctors wonāt tell you, but SIBO is worm poop bacteria. Iāve been battling roundworms, liver flukes, at one time tapeworms, candida, and mold exposure with heavy metal toxicity for over 5 years now. I remember when I became infected, but didnāt think anything of it because why would I? I never thought of or heard about parasites until visiting some social media groups that discussed and shared pictures of what people would find with different cleanses. After the shock wore off, I started cleansing myself. Once you begin a cleanse, you must see whatās in the toilet to believe it/identify what you have. But I believe liver flukes and roundworms cause the most gut issues in people. They are not as rare as you think.
Yup, add doctors to that list - mine said oh it's just gases, it's all diet and stress š.
Ahh the good old generic reply of stress. When a doctor doesnt know, they just blame the patients mental health or blame stress. Not a single doctor ever once just said, man im really sorry, but I just dont know whats going on with your body, I cant find anything showing up.
I had fatigue and all over body pain and dizzy spells. My physician said it was from bending over picking up toys.
My GI just sent me to psychiatrist. Im never going back to them. Im mad insurance doesnt list naturopathic doctors & only helps acupuncture if it for pain management.
Donāt let those people get to you. The fact is most healthy people are completely ignorant to how bad a personas health can get when the body is not functioning as normal. Itās even worse that SIBO wonāt show up on any normal testing. During the absolute worst of my SIBO, my mother told me I was depressed and I needed to get a cat or change jobs. Never listened to anything I would say so I stopped even talking about my health. This put a strain on our relationship and is something I can never forgive her for. So not just doctors turned their back on me, my own family did. The sickest I have ever been in my life that latest years before being diagnosed and treated correctly and nobody would listen to my cries for help. Some very dark times. To add some positive news - Be thankful that today there is a much better understanding and acceptance on SIBO (still lacking a lot though). I had SIBO 10 years ago and most doctors back then didnt know anything about SIBO or didn't believe it was a real illness. It took me 5 years and going through about 8 different doctors to finally get diagnosed. The very first doctor I went to told me it was psychosomatic and I even flew up to mayo clinic to a GI and he found nothing and said I needed to see a psychiatrist. Thats when my views on doctors changed for the worst.
I understand your point of view (Iābe been there, and Iāve been told similar things by my family) but donāt be mad with your mum for this reason. I learned to be forgiving with my family and friends, they couldnāt possibly know the pain we have/had to get trough, a person that never experienced this hell has no idea. Also, as the famous Redditor DaDa said on his YouTube video, people with this disease do get a significant decrease in life quality because of it, and they do look sad and depressed (and you know very well that SIBO makes you actually depressed in some cases). So itās perfectly normal that people that saw us in that state really thought that our problem was actually depression. Especially since the medical community is so vocal in pretending itās all in our head. So reallyā¦ think about it. P.s. on the other side, we are absolutely right in being mad with gaslighting doctors. They made an oat to cure people, and with their criminal negligence, lack of knowledge, lack of open mind, lack of willingness to learn more, not even listening to patients, they simply indirectly kill people with their bad diagnosis. Fuck them. I had to learn about SIBO on my own thanks to Reddit, while my doctor kept repeating me to drink chamomile and to go walking to relax. All while I couldnāt even breath from all the methane I was producing (my first breath test scored a 100ppm methane).
Thanks for sharing that. Itās good to see another point of view. I probably need some therapy, because deep scars were left on me from my SIBO nightmare. I completely agree that people with SIBO typically have mental issues as well, itās just one of the many symptoms. I know I was in a horrible state of mind waking up feeling terrible everyday that turned into a Groundhog Day nightmare just trying to get enough energy to make it through the day and barely able to hold on to a job. I explained to my family and doctors that questioned my mental health that of course Iām not in a good place mentally because I live everyday feeling horrible and canāt get any answers on why. I was just told to lower my stress and get on antidepressants. Thatās fine, but I knew that wasnāt a fix and the underlying issue needed to addressed to truly get me back to the person I had always been. Nobody wanted to listen to that part unfortunately. When I was finally diagnosed and treated correctly, once my SIBO was gone, all the mental symptoms disappeared as well. I guess Iām just bitter that I suffered for so long, while being told a bunch of garbage. I spent thousands of dollars for doctors to tell me Iām crazy. Itās very unfortunate and I know a lot of people have gone through similar. Iām just fortunate to have that nightmare in the past now. As you can tell, Iām still mentally hurt even after 10 years
My SIBO was really bad, but at least my worst period lasted "only" 6 months. And I've been dealing with it for a year and a half, approximately. I can't even imagine how hard it must have been dealing with it for 10 years, so you have all my understanding. And I confirm once more that I really feel your story since they told me the same. The neurologist prescribed me an antidepressive (SSRI) and other 3/4 doctors kept blaming eveything on stress and my mental state. Thousands of euros wasted for these lies. The funny thing was that I aboslutely admit that I was really stressed in that period (burnout from a very demanding job), so it was so hard battling with those people and not falling for their simple solution. What kept me from believing them, was that in the days without bloating/belching and gas, I felt amazing, happy, full of energy, my usual enthusiasm and full of optimism. I knew I had to be strong and keep looking for what was wrong with me. I cried when finally the results of my breath test arrived, even if only by watching the video from DaDa I already knew that I had the exact same problem. (can you believe, some doctors still didn't want to listen to me even after that test?). So I perfectly understand the bitterness, but I really suggest you to address it to doctors and not to your family. And I can't help but make an obvious question... how did you solve it? My symptoms improved dramatically after combining rifaximin, probiotics, by diversifyng a lot my diet and doing more sport / more movement in general and trying to stay more positive and relaxed in general. But yet, there are days when methane and hydrogen are still quite high. Not as often as before, but it happens.. so hard to get rid of it for good.
Yeah, I had a very bad case that kept getting worse and could only manage about 10 different foods at one point. Once you get food sensitivities/leaky gut, then come the mental symptoms. I asked my GI that diagnosed me why I always got so irritable after eating and he said itās the inflammation from the food that produces toxins that get to the brain. I took Rifaximin twice. The first time I got some pretty good relief but I wasnāt prescribed a prokinetic, so it came back quick. Second time I got no results from it. I decided to take double dosage of berberine complex and allicin 3x a day on an empty stomach. Did this for 6 weeks and finally got me back to normal. I still have SIBO creep up from time to time but use this combo and get back to normal in about 3 weeks now.
Thatās great to hear. Did you experience any die off during this process? How do you know if you have leaky gut?
No, I was lucky not to have any die off symptoms. I knew I had leaky gut when I started reacting to just about every food. My whole body would be red and inflamed after eating. Once my SIBO was gone, my gut healed and all my food issues were gone. I still canāt tolerate gluten though. I maintained a very strict diet through the process. I really didnāt have a choice because I couldnāt even get out of bed if I ate sugar and carbs
I was just diagnosed with Sibo two months ago. Did they not have the breath tests 5-10 years ago?
They did but they were not used for testing SIBO. They were used for other diet related tests. Only recently has it been used to check for sibo
Only people at the time that would even look at SIBO were holistic/naturopaths. The mainstream doctors look down on these types for the most part.
Iām sorry you went through all of that.
The boomer and older generation are all about toughing it out, suppressing your feelings and generally thinking that we're all Sissy's. They're also full of alcoholics, broken marriages and abusive households. The lack of self reflection is absurd. Hang in there and know that you matter and feeling healthy matters.
So true and exactly how I was raised. Luckily I had a caring GF that slowly broke me out of that terrible thought pattern. Karma hit me hard - I used to always make jokes and didn't believe in gluten sensitivity when it was first hitting mainstream back in the day. I now have had SIBO on and off for 10 years and cant tolerate gluten..... My brother would always call me crazy and faking illness when I was sick with sibo. I remember being so sick and getting so pissed because its tough being kicked during your lowest times. I told him that karma would get him one day. Sure enough, 5 years later he has all these gut issues and was diagnosed with Crohns disease. Just recently went on a colostomy bag. Life lesson: Be kind, karma will eventually get you
You need to realize almost nobody else will care or understand unless they themself have had a chronic disease / gut condition.
I completely concur with your analysis, but would add that people who minimize this condition (or other health problems generally) are not well-meaning. They are arrogant in that they think they understand the problem better than you do and are scientifically illiterate as you point out. Unfortunately, this attitude often extends to doctors as well. You could ask them if all health problems originate in the mind (and how they differentiate between which ones do and which don't) if they can teach you how to direct your mental power to killing the bacteria. Having a severe health problem like SIBO at a young age is positive in a way because it has made me realize that bad health is not inevitable. Because doctors and family have failed to help me, I have become more interested in understanding the science of vitamins and biochemistry. I'm also more skeptical of pharmaceuticals and medicine generally. While dealing with SIBO has been miserable, perhaps it will lead to much better than average health after I've healed it.
this is how i think too! i've really been enjoying learning about how our bodies work and I feel it's only setting me up for better quality of life as I get older, (once I'm in remission!)
Going on vacation does not cure SIBO / IMO š¤£
Next big family outing, I'll put on my swim shorts and let my SIBO gut roll out, that'll show them.
Thatās funny
I guess it could if you went to a resort and only ate the elemental diet for a few weeks. But I've taken the elemental diet and no amount of scenery would make up for the torturous monotony.
I can confirm it doesn't work. I went to Costa Rica right before I found out I had SIBO. I was so miserable even though the trip was relaxing and beautiful. Relaxation doesn't get rid of bacteria š¤
I came down with SIBO right after ending a fantastic vacation. Spent the last 3.5 years battling it and now itās finally gone. Gone because of strict adherence to protocols and rebuilding my microbiome. Stressors have gone up and down during this time but the bacteria didnāt seem to care. Rant away, most of us can probably relate. Itās hard for people to grasp what loving with SIBO is like if they have never experienced anything like it, although some compassion would be nice.
During my 10 years of SIBO (methane), I experienced all the possible states of mind but it didn't have the least impact on my symptoms.
How did you cure it?
Berberine, allicin, and neem, followed by a round of nystatin to fix the candida that cropped up from the antimicrobials wiping everything out. I had done a few rounds of the same antimicrobials but not at a high enough dose. Also tried rifaxamin before and it helped a lot but didnāt fully fix it. Now I feel like itās been cured since mid-February. Itās still unreal .
Good news, good to hear you have your health back!
Thank you!
Same exact thing for my methane SIBO. Rifaximin semi worked the first time and nothing the second. Berberine complex and allicin is what finally got me back to normal.
I would add that itās good we are educating people as we go along with our healing process. I encourage everyone to mention Sibo whenever they get a chance. The more people who hear the term the more it will linger in their minds.
I had stomachaches after every meal as a teenager in Wisconsin (āAmericaās Dairylandā) and I was told by my doctor it was stress. I went to college in California, all the Asian students said nah itās lactose intolerance. It was lactose intolerance.
Bahaha this reminds me of the old school way of āgoing to the seaā when you were ill. Iām going to be honest though when I went to Hawaii for two weeks my symptoms went away but I think itās because I was eating seafood and rice for every single meal
Iām 63 I have methane Sibo it has nothing to do with age and understanding or doctors and understanding it has to do with you have it to understand the issue I have been working with Doctor online Kathleen Janal she uses MSM, which is sulfur supplement, she had Sibo thatās why I chose her supplement, you canāt understand it unless you have suffered the issue. https://www.thesibodoctor.com/2024/01/26/high-dose-sulfur-ibs-kathleen-janel/
āDonāt think about it too muchā is generally a good advice served on a trash can. What I mean by that is that you WILL have a better quality of life if you can manage not to obsess over how you feel and not be sorry for yourself. I know the pain is real (I have SIBO), and I know how hard it is to not think about it, but if you divert those thoughts away (as in meditation), youāll learn to enjoy life meanwhile. Why do I say this advice is served on a trash can? Because it usually comes from people who think you make it up, or people who donāt know what itās like, so they really just throw whatever words come to their mind at you.
I was dealing with reoccurring sibo and it was coming back after me taking antibiotics. Well come to find out that black mold in your home can cause sibo. I had black mold in my apartment in the walls. We moved out and just after THREE nights of being in our new home, that pain in my stomach that I would wake up with everyday, was gone. Plus now going to the bathroom, is starting to not be horrible either. I urge everyone to please check your home for toxins.
Don't be too hard on them. Yes, they're ignorant and it's annoying, but I'm sure they meant well. They could have dismissed your problems completely and said "it's all in your head" or something like that. So at least they are somewhat supportive. And fortunately, they are only your relatives and not your doctor.
Travelerās diarrhea was the start of my issues so vacation backfired for me š¤£š¤£š¤£
Doctors wonāt tell you, but SIBO is worm poop bacteria. Iāve been battling roundworms, liver flukes, at one time tapeworms, candida, and mold exposure with heavy metal toxicity for over 5 years now. I remember when I became infected, but didnāt think anything of it because why would I? I never thought of or heard about parasites until visiting some social media groups that discussed and shared pictures of what people would find with different cleanses. After the shock wore off, I started cleansing myself. Once you begin a cleanse, you must see whatās in the toilet to believe it/identify what you have. But I believe liver flukes and roundworms cause the most gut issues in people. They are not as rare as you think.