SIBO (Small Intestinal Bacterial Overgrowth), does anyone have experience of this condition?

[Handcreamqueen]

After being told for the last 25 years that my gut issues are down to IBS, I have just tested positive for SIBO.

I don’t have an appointment with my gastroenterologist to discuss this until the end of the month.

I am not sure if this means that I have both IBS and SIBO or my issues have always been SIBO? I have joined several FB support groups and it looks as though it is a notoriously difficult condition to treat and many say there is usually an underlying cause which you should address before treating the symptoms. Many also say the NHS is fairly useless at treating this condition.

Urgh! Looks like it is going to be a long road of research and trial and error.

Hi @Handcreamqueen sorry you’re going through this. I have just tested positive on one test and negative on another. I have all of the symptoms and I am waiting to start working with a naturopath.
hope you get some help!

That’s interesting RMMerritt.
Which tests did you use? Do you know why it was positive on one and not the other? It’s quite a complex and confusing condition isn’t it?
Tbh, I don’t hold up much hope of getting too far with my NHS gastroenterologist, she has mentioned several times that she doesn’t really believe in SIBO! It was a different gastro who ordered the test for me but he is no longer at my hospital. I can’t really afford to see anyone outside of the NHS but if I get nowhere fast I will have to reconsider.
Does your naturopath specialise in SIBO?
I hope it goes well for you.

I was recently tested for it and specialist told me it's treated with antibiotics.

I’d never heard of SIBO until my gastroenterologist mentioned it and treated it. I have found it comes back. The antibiotics work but when you’re on them be prepared to fart the worst farts of your life that can clear not just a room but the whole house. The antibiotics can make you feel
grotty before you start to feel better.

Mine’s a lot more complicated than just SIBO, I’m in my 10th week of inpatient hospital treatment on the gastro ward with Ehlers Danlos and gastroparesis.

This time they started with both rifaximin and metronidazole but swapped the metronidazole for coamoxiclav when I got a UTI.

I find the SIBO treatment works for 6-18 months dependant on how my health has been (any infections etc).

StBrides I have been looking into this extensively since testing positive, I’ve also joined quite a few support groups. Apparently (and heart sinkingly), it is notoriously difficult to treat and many who take the antibiotics will need further rounds. The antibiotics can also make you feel very poorly. One lady who runs the U.K. support group has finally managed to rid herself of the SIBO, 58 months after first starting treatment 😞

Thank you mfhtoeh, I have joined a few supoort groups and they all say the antibiotics take several ‘rounds’ to tackle the SIBO. I suppose it also depends how long the person has had symptoms? I’ve had awful gut issues for 25 years so worry it is going to take a long time to recover. I have just purchased a book by Dr Mark Pimentel (who first recognised the connection between IBS and SIBO) it states there is always an underlying cause to SIBO so that will also be a task, to find out what it is.
I have suspected for years that I (and many in my family) have, at best joint hyper mobility and worse EDS (been laughed at by my GP over this!). My sister also has endometriosis and I’ve had decades of gynae issues so am going to start looking into that too.
I am glad I have tested positive as at least I now have something to get my teeth into but I suspect it is going to be a long journey and I don’t (from past and personal experience) have much faith the NHS will help too much.

Have you taken or considered taking anti microbials such as oregano oil or Berberine? I’m trying to gather as much info as possible before my gastro appointment at the end of the month, to find out the most appropriate path to take.
I hope you find some lasting peace from everything, good luck with your journey.

Hi Handcreamqueen,

I know this is an old post, but how are you getting on? Any progress?
I've had SIBO for years. IBS to the NHS. But they've been no help.
I have endometriosis and hyper-mobility. I'm sure these effect the GI tract. These may be our root causes. Endometriosis can be managed better but what can you do about hyper-mobility - that genetic I'm guessing?