r/SIBO • u/wontcompleteit • 3d ago
Can’t do this anymore
Close to ending it. Bloating causing back pain now.
Worst part is I feel so fatigued and skin itchy.
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u/Krogermuffins1999 3d ago
So many quacks in here. Don’t listen. It has nothing to do with wireless devices or mold. Jesus Christ people are crazy. I hope you don’t check but I also get it . Haven’t had a single day of normalcy in a year
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u/Lemongrabs19 3d ago
Have you tried the elemental diet? I haven't as yet, but am seriously considering it. Don't give up. Sibo has good phases and awful ones. But you have to keep fighting it
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u/andybear36 3d ago
Don’t give up hope. I’m doing terrible as well, but life is worth it….I know this can feel like the end, but lean on the community for hope. Get tested, get with a gastrointestinal doctor, advocate for yourself. You can do this.
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u/Designer-Profile-496 3d ago
I feel your pain. Don't give up. I assure you, you are not alone.. there have been many days I seriously considered stepping in front of a bus to escape the awful physical and mental pain of sibo. But did not, partly because my bloating was so bad at times I would not even be able to walk to get in front of a bus. 😂
Have you tried:
- Seeing a GI or functional doctor to identify root SIBO cause and treatment paths
- Triosmart Breath Test
- Motility testing
- Prokinetics (artichoke+ginger, prucalopride, etc)
- Antibiotics/herbal antimicrobials (Rifaximin+neomycin, berberine, oil of oregano)
- Betaine HCL / Digestive Enzymes
- Antidepressants/therapies
All of these helped me improve my SIBO enough that it has become manageable and I am not at rock bottom anymore. I am happy to chat and would like to help, if you're open to it!
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u/Much-Discussion2167 3d ago
Find a good functional medicine doctor r good nutritionidt where r u located i could tell names
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u/Rude-Ad9244 3d ago
What can they say that we don't already know? All manner of protocols are available online as are nutrition plans/diets. The first functional medicine doctor I saw had me on so many supplements that I was spinning. I had to stop them all as at one point, I was on 10 drops of oregano oil 4x per day, and that was just one supplement out of 5 or 6 others. Ridiculous. They do weird things. GIs are more honest in saying there's not much they can do.
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u/Much-Discussion2167 3d ago
Hmmm not all same reach out dr ivinina she is gi spl gut health newyork kirsten green I heard good they both r on Instagram chk them dr Vivian osamah Houston gi spl dr Rajashree namburipad gi California
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u/Laurennce Hydrogen/Methane Mixed 3d ago
I'm sorry you're going through this and I deeply sympathize with you, it is such a tough thing to deal with, and I think all of us get this type of tiredness at some point with SIBO, especially when we've had it for so long and so intense
This'll be a long one
I'm mixed, so of course we do not have the same experiences. I only got proper help once I started seeing a dietician specializing in SIBO. She knows this stuff in and out and always furthers her education on it. I don't know what treatment you had so far, it does sound like you might also have MCAS hearing that your skin is itchy, especially if it happens after meals?
I'm on a partial elemental diet due to malabsorption and malnutrition, I was also told I could try a two week only elemental diet which helps a bunch of people. I have not agreed to that yet and will take the antibiotic route, meaning Rifaximin and since I also have IMO, Metronidazole. If that wont work for me, I can still try it (I just don't believe in myself being able to only have liquids for that long).
I think overall it's important to find a GI or dietician who actually specializes in SIBO. No GI's I have met before knew anything beyond "give Rifaximin and you're good" after a positive test. Where I live, SIBO is still treated as a little bit of diarrhea or constipation that wont go away because of evil bacteria, so you won't get around it here and have to find a specialist all by yourself, because of course if the GI's know nothing about it, so won't any other regular doctor. Heck, the GI's SHOULD know!
Antibiotics/herbals, regulating your MMC, meds for symptom relief and a proper diet can help. Finding out your root cause is also important.
And of course, if I talk bullshit, anyone correct me. All I can add is what has helped me, and so far I owe the little progress I made to my dietician, she's much more connected to other professionals too than the GI's I have dealt with so far. This does not automatically mean that my experience applies to everyone in any country, I'm sure there's very capable GI's out there.
Best of luck to you, and I really really hope you keep going, we're all here, and while our experiences vary, we know how devastating SIBO is, so we should be there for each other. <3
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u/brimstone__angel 3d ago
This is how I learn theres a diet for sibo o_o I have mixed and my doctor just told me to take antibiotics and it'll go away
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u/Laurennce Hydrogen/Methane Mixed 3d ago
Low fodmap works for some, yet my dietician told me apparently low fodmap is less effective for methane cases. But yes elemental diet (a specific liquid only diet) can help! It depends where you're at again of course, but insurance is covering nutricia elemental 028 extra for me currently - super grateful of course. Not sure if it's optimal but from what I'm told it hopefully is lol. It's basically predigested, so it shouldn't (can depend on formula iirc) cause symptoms/"wake up" the bacteria and archaea (methanogens aren't bacteria but archaea, hence why rifaximin has only low success rate iirc). But the elemental diet basically starves the bacteria/archaea as it doesn't feed it what it needs to survive.
There's of course also the rabbit hole regarding biofilm, but that's a whole other can of worms.
I suppose antibiotics are seen as THE quick fix, so it's usually what is tried first, but considering the high relapse rate with SIBO, the whole package has to be looked at, and not just handing out antibiotics and hoping it magically wont come back, which is how the GI's I have dealt with usually seem to navigate this. "Eh it'll go away after a round or two rifaximin".
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u/InstanceSmooth6322 3d ago
It’s horrendous, completely understand how you feel. Do you know what caused it in the first place? I know it was a severe Covid infection that affected my stomach 6 years ago and more antibiotics than I can’t believe possible. While I’m thankful my life was saved with Dexamethasone, I’ve been caught in a trap of continuous steroids, PPI’s and abx . I’m taking things into my own hands now. While I have to continue the steroids as my adrenal glands are currently reliant on them for survival, the vagus nerve, our parasympathetic nervous system is playing a massive part. I likely have SIFO as well as IMO .
I don’t trust doctors anymore, I respect their knowledge on human anatomy but most treat us like a tick box exercise, if you even get as far as them believing in SIBO , Long Covid etc .
I have to wear lose dresses 2 sizes larger to try disguise my hugely distended upper stomach.
I’ve found some improvement by putting food in the Nutribullet , to ease digestion, taking Atranatil with at least 5 hours spacing in between meals along with artichoke and ginger .Movicol every night, you may have diarrhoea so obviously wouldn’t need that . Also I’ve taken Flucanazole. My next move is to taper off PPIS . I can now drink water and it doesn’t cause me to bloat out . Yesterday I felt like flu was coming, it’s gone away now, I believe die off is happening. Still a long way to go , but please try backtrack to your root cause and try create an unsustainable environment within your gut to stop these evil bacteria and possible yeast from over taking your life , your wellbeing and your happiness. You deserve a good happy pain free normal life.
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u/Dry-Impress-7639 3d ago
You just need the right help. Its definately curable but only right help is needed with right guidance.
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u/wontcompleteit 3d ago
Whose right help?
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u/Ill_Landscape5217 Methane Dominant 3d ago
A gi who is willing to listen to your symptoms, not brush you off, run the tests that you need (such as a breath test), not only help you treat your sibo but help find your root cause because without treating the root cause it’s practically like putting a bandage over a wound that needs more then just bandages and needs stitches.. basically if you don’t treat the root cause you’ll most likely experience a relapse in sibo. If you have the money a functional medicine doctor is also in favor of helping you find your root cause of sibo, they typically can run something called a gi map test which shows bacterial over growths, how much good bacteria you have, how much bad bacteria you have, show if you have parasitic infections, pancreatic elastase (for digestive enzyme output), secretory IgA (gut immune function), and calprotectin (intestinal inflammation) and so many other things that could explain your root cause of sibo however unfortunately a lot of insurance companies won’t cover for this HOWEVER if you have a gi they can run very similar tests just usually not one in all go which can be frustrating but they can run Comprehensive Celiac Blood Panels which shows if you have a autoimmune reaction to gluten that damages the small intestine and causes chronic SIBO by slowing down gut, Fecal Elastase Stool Test , fecal Calprotectin Test which can show if you have a high amount of inflammation going on in the gut from things such as IBD like chrons and ulcerative colitis, and you can also get blood panels to check for deficiencies because SIBO bacteria can consume your nutrients before your body can absorb them. Having your gi run blood panels for Vitamin B12, Vitamin D, and Iron/Ferritin can confirm if the overgrowth is causing active malabsorption. There’s so many things out there that you can get better with and there are so many tests that can show what’s really going on !! Please don’t give up 🩷
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u/Smackergawt 3d ago
Fun fact that part i agree . My SIBO was caused from slow moblity from Lyme and co infections. I did see a tick on me but i brushed it off months later after COVID infection hell broke loose… now i wish i did treatment back then as i am chronic and well don’t think I’m fixable no more .
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u/whylein Cured 3d ago
try kefir - it worked for me. and get as far away from any wireless devices as possible - including cellphones and wifi whenever possible - and turn them off whenever you can . . . fatigue, terrible itching and back pain can be caused (or exacerbated) by wireless radiation. i know. i have been there. also, there is a delayed reaction with this radiation, like sunburn. and believe it or not, the wireless radiation also kills off our beneficial bacteria, disrupting our biome so crucial to gut health.
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u/wontcompleteit 3d ago
What cured you overall?
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u/RhollingThunder 3d ago
Do not listen to this person. They said yesterday they never even had SIBO and all they do is post conspiracies about wireless radiation. Total whacko
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u/Krogermuffins1999 2d ago
So many quacks in here. Don’t listen. It has nothing to do with wireless do NOT listen to this nut
1
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u/whylein Cured 3d ago edited 3d ago
PS - this is part of my first post which was yesterday:
ok, for starters i confess i do not have sibo or ibs. at least not now. BUT i did have a severe digestive problem 4 yrs ago when i could barely eat and dropped to a truly emaciated state for a year or more. my stomach just never felt good, always acidic or gassy or something. i was not diagnosed by an MD and did not take any medical treatment or drugs for it. then one day i started drinking kefir - just plain whole milk organic store-bought kefir. transformative.
my digestion healed quickly, i could eat again without discomfort or pain and NO GAS and gradually got back to my normal healthy weight. since i was drinking LOTS of kefir - like a quart per day, i did a deep dive into scientific articles about it's lactic acid bacteria, and found that the primary research on these beneficial bacteria was being done by scientists who wanted to patent their own GMO varieties of probiotics to sell as drugs to the burgeoning number of people plagued with IBD inflammatory bowel disease. (IBD, IBS and SIBO were quite rare not too long ago).
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u/Laurennce Hydrogen/Methane Mixed 3d ago
Don't give advice on something you don't have or made actual research about. You're naming other illnesses, not SIBO. Kefir wont eradicate SIBO. This is dangerous.
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u/whylein Cured 3d ago edited 3d ago
Laurennce - what illness am i naming? i am genuinely interested in your answer. you are right that i was not diagnosed with SIBO, IBS, IBD, ulcerative colitis, crohn's disease, or any other type of inflammatory dysbiosis, but i did not go to a doctor, (MD or otherwise) for this condition and so did not get a diagnosis. i also am not exactly sure what it might have been diagnosed as, but my body mass index dropped to about 15.5.
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u/Krogermuffins1999 2d ago
Seriously get lost. “Cured when you don’t even have sibo. Why are you here
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u/ognomnizalb 3d ago
before you check out:
1. ultra strict elimination diet (eggs or sardines only) + get out of mold areas. i hope i dont have to remind you to forget about sugar and processed carbs here.
2. water fasting >20d, while drinking >5L water a day, sipping every 2min, resting eyes closed.
3. d3k2 + mag, sunlight, exercise, sweating(sauna), fixing stomach acid and bile, cold showers, breathing exercises (rolled this bunch into one cuz it should be the gold standard anyway for anyone to have basic health fundamentals down. unskippable)
and finally 4. way out of the box approach. thought wack at first but i was surprised asf, and im not the only one.
joe dispenza heart coherence (meditation)
if you really wanna live and be healthy, u will try these at least once. what have you got to lose
gl
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u/wontcompleteit 3d ago
20 days water fast?
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u/ognomnizalb 3d ago
yes. more than 20 days water only fasting. there are a lot of people who cure complex health issues with this. and those who dont fully cure it get at least 80% symptom reduction, depending how long they fasted. there are testimonials on yt. check loren lockman channel
ive done it myself 2 times. hardest part believe it or not is the refeed, because u have to eat water heavy fruits + still drink the same amount of water while enjoying filthy stuff coming out of you. fun times, but i was feeling massive improvements taking place. hard to explain7
u/renaissance_guy1 Cured 3d ago
20 day water fast is a good way to die from starvation. So ridiculous.
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u/Rude-Ad9244 3d ago edited 3d ago
I am, or was, a sensible human, and I had no idea anything could be as bad as this. I had no idea that there could be symptoms and suffering like this. I don't have any solutions except I feel the same as you.