Sibo Rifaximin

[Chefboy2478]

Well after 7 months of problems i have been tols i might have Sibo although the test was negative. Has anyone had side effects from the Rifaximin? Did it cure the Sibo?

[Scunner]

I too had negative test but my gastro suggested that given my symptoms (and the fact SIBO test is far from fool proof) giving a course of rifaximin a go was a good way to go so I paid to have a 2 week dose. Unfortunately didn't help but I still feel it was worthwhile to do. Side effects - thankfully very little, about day 2/3 I felt a little increase in stomach cramping. To be honest though, I was probably just looking for something. Good luck if you give it a go.

[xjrs]

I responded to a similar question you posted a while back:

healthunlocked.com/theibsne...

I know you want to get to the bottom of your symptoms, but my belief is that SIBO is the latest health fad. I am only saying this to protect people from the hell and extreme expense (£4.5k in therapist fees, private prescription antibiotics, extortionate supplements, liquid diet etc.) I went through treating it (including taking Rifaximin) when in the end it was highly unlikely I ever had it - I got extremely ill from the treatment and lost loads of weight and had absolutely no improvement in symptoms.

If you truly suspect SIBO, I was presented with this handout which shows the root causes of SIBO, unless you are suffering from one of these it is unlikely you have SIBO:

clinicaleducation.org/docum...

On the right hand side you will see the box containing the heading "Aetiology" which actually means 'a set of causes'. I went through this list with my gastroenterologist and I have added comments from my own health perspective.

He said that these areas would be covered by the Small Bowel MRI scan that I had:

• Stasis: dysmotility – not apparent

• Surgery (loops, vagotomy, bariatric) – not apparent

• Short Bowel Syndrome - not apparent

• I also added ileocecal valve (which sits between the small and large intestine) to this list, which my therapist kept going on about. She said that my ileocecal valve was stuck open allowing bacteria from my large intestine to wash back into my small bowel and I'd need to visit an osteopath who practices visceral (organ) manipulation to get them to close it for me (or you can do it yourself via a youtube video). I had to go to another city 1.5 hours away to visit such an osteopath who eventually said he didn't manipulate the ileocecal valve (although a phone call indicated he might), but I had a couple of sessions of him manipulating my intestines because they were stiff. My small bowel MRI showed there was nothing at all wrong with my ileocecal valve - it was closed and showed no inflammation or any abnormality that would cause SIBO.

And now for the rest:

• Achlorhydria – no stomach acid – he said this was highly unlikely and also considering I can experience acid reflux

- I also would have thought a fecal elastase test would show if you aren't breaking down proteins correctly (which require stomach acid for digestion) and mine came back OK.

• Hypochlohydria – low stomach acid – same answer as above – the only real test is a PH test directly into your stomach, but he said they didn't do this any more and home testing is inaccurate

• PPIs – my therapist said that I hadn't been on PPIs long enough to make a difference

• Malnutrition – no

• Collagen vascular disease – immune system inflammation e.g. arthritis – not in my case

• Immune deficiency - unlikely

• Advancing Age – no

• Chronic Pancreatitis – this causes constant abdominal pain/fatty stools - no

. It is interesting that another IBS Network member had responded to Rifaxamin but was also diagnosed with a compromised pancreas.

• Chronic ABX use – no

• IgA Deficiency – my tests show this is normal range

• Coeliac Disease – I had blood tests with the GP and these came back fine

• Crohn’s Disease – I had blood tests with the GP and these came back fine

and colonoscopy was OK

• NASH – non alcoholic fatty liver disease –looked at my records for this and this is normal

• Cirrhosis - no

• Fibromyalgia – widespread pain - no

• Rosacea – no

I don't know whether this list helps at all, but might be worth working through from your perspective.

If the person who is telling you that you might have SIBO is a nutritional therapist, please note some of the nutritional therapy qualifications only have a prerequisite of maths and English GCSE, but the kind of tests they do and diagnosis they make are not much different from a doctor. I had two of these and spoke to many others and I've not been impressed with any of them. Their advice has been so contradictory. There may be some out there who are really switched on, but they are operating in an unregulated area and some of the science they are relying on are based on small studies and haven't undergone rigorous testing.

Sorry to go on about all of this, but I really wouldn't want anyone else to go through what I went through.

There is loads of help here regarding IBS depending on what you unique set of symptoms are:

theibsnetwork.org/the-self-...

Some people who were diagnosed with IBS and didn't respond at all to the fodmap diet within 2-6 weeks and still had diarrhea, had received a test for Bile Acid Malapsorption and received a separate treatment for this and became well again. It really depends on what your symptoms are.

[Chefboy2478 in reply to xjrs]

Hi xjrs

Many thanks for your reply. Yes i do remember you kindly replying to me a while ago. I saw my gastroenterologist on Tuesday and it is him that has suggested i have Sibo due to my enormous bloating that ive had since August. I've been on the Lowfodmap diet for 4 weeks tummy did seem to be setting apart from the bloat. Since starting the antibiotics on Thursday my bloats worse, tummy ache and now constipated. It alk seems never ending!!

[xjrs in reply to Chefboy2478]

Oh dear. You are going through it! You have to be a bit of a detective about it since IBS symptoms can have numerous causes. Have you tried the free 2 month trial of Alflorex probiotic on joining theibsnetwork.org? It has been scientifically tested to reduce IBS symptoms such as bloating and pain for many IBS sufferers. One of its mode of actions is reducing inflammation in the digestive tract - also if you have some bad bugs that are in higher quantities than they should be, it might help to bring things more in balance. However, I know the advice is if you have SIBO you shouldn't be taking probiotics - although it's not an exact science and the tests for it aren't accurate. If working through the list above with your gastroenterlogist and completing the course of Rifaxamin you are no further forward - might be worth giving the probiotics a go? Are you UK based or elsewhere? The reason I ask is that gastroenterlogists aren't able to prescribe Rifaxamin on the NHS in the UK and I had to buy mine privately.

I am taking Alflorex alongside Linaclotide for IBS-C and intestinal nerve pain. Both are helping a lot with the pain and I am now able to eat far more foods when I'd previously been on a highly restrictive diet to control symptoms.

[Chefboy2478 in reply to xjrs]

Hi xjrs

Yes i am uk based i live in Leicestershire. My gastroenterologist is Nhs and i got then on the Nhs. I've got 1 weeks supply. Ive got to phone his secretary when i have finished then. If no better he's going to prescribe another 7 days! He told me to start taking Kefir which i have. He also said in the future i could try the probiotic Symprove but it's very expensive. I find it all so annoying the gp tells you one thing and the gastroenterologist tells yoy another. If i don't improve i will start taking Alflorex

[xjrs in reply to Chefboy2478]

Wow. The NICE guidelines say it's not approved in the UK for SIBO. I had to get at £150 private gastro appointment to get the prescription and then I'd paid £300+ privately for it! You are very very lucky to get it on the NHS! Good luck with trying different things. Hope you land on something that works for you soon.

[Chefboy2478 in reply to xjrs]

So do i it's all driving me mad!@

[Alysm in reply to Chefboy2478]

Hi I was given Rifaximin on the NHS too after a positive test for SIBO. My problem is I feel great all the while I am taking the Rifaximin but as soon as I stop, I get all the symptons straight back.