# SIBO 'Not Recognised In UK'



## ---- (Feb 5, 2011)

I had an Hydrogen Breath Test a short while back and was told that I had an overgrowth of bacteria in the bowel (i.e. SIBO). My consultant wanted to re-do the HBT just to confirm the diagnosis.However, I did this and the consultant has told me that despite a positive test for SIBO there is nothing that can be done and it is not the cause of my IBS-type symptoms. I said that I had read about American SIBO research and the treatment (Rifaximin), yet he said that the SIBO link is not proven and is merely an American 'theory' with no substance and that Rifaximin is only prescribed in the US.So, here in the UK nobody can be treated for SIBO!!!!!He said I'm stuck like this.This was my last chance of a cure. I've had dozens of tests and the HBT is the only one which has come up positive for anything.There are no other avenues for me to explore.


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## Kathleen M. (Nov 16, 1999)

Well see if they are willing to try any of the other antibiotics used for "clasic SIBO" rather than the "IBS-SIBO". Now it still is in the investigation stage rather than solid proven stage, but there are other antibiotics that can be used. It is not true there is one and only one drug. Classic SIBO has been around long enough and happens with certain other illnesses, that I don't think they can decide it doesn't exist.http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/page6.htmAlso you could get Pimentel's book and try the diet and that if no one will dare to give you any of the standard antibiotics.The main problem is that typically it isn't a one off on the antibiotics and you are cured forever. It usually comes back every few months, and yo may decide that isn't enough benefit to risk the antibiotics.


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## Naomi889 (Sep 11, 2005)

Is this correct, in other users' experience? Has anyone managed to get hold of rifaximin from a UK doctor or other healthcare practitioner?


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## King Of The Small Room (Aug 13, 2009)

Naomi889 said:


> Is this correct, in other users' experience? Has anyone managed to get hold of rifaximin from a UK doctor or other healthcare practitioner?


Hiya Naomi.I live in Liverpool and am an out patient of Prof Whorwell at Withington Hospital in Manchester where I go supposedly every 6 months, though it's usually longer than that these days.He has no qualms about prescribing Rifaximin which he's done for me twice with a private prescription. This gave me 3 months of comparative relief the 1st time, and slightly longer the second.When I've got the prescription, the drugs are then ordered by my pharmacist from a place in Surrey I think (I'll check to find out for sure as I can't remember at the moment) which specialises in non prescription medicines. It is quite expensive, but this place still did them for me cheaper than the place the Prof himself recommended.The beneficial effects don't last forever however, and you then tend to feel worse than ever when you return to the norm. The theory is that you should follow these drugs up with probiotics but speaking for myself, I haven't yet found any that have worked for me.Good luck anyway.


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## King Of The Small Room (Aug 13, 2009)

Just to add.....I really can't think of any reason why your GP wouldn't prescribe it with a private prescription just as the Prof did for me. Suppose it depends on how sympathetic/co-operative he is. It wouldn't do any harm to ask anyway for somebody who has been officially diagnosed with SIBO.Thinking about it further, I think that company in Surrey specialised in medicines not actually officially yet available in the UK more so than those not available on prescription, or maybe it was a bit of both.I'll try and find out the name of the company and how much it cost me some time tomorrow. It was over a year ago now since I got hold of them so that's why I can't remember straight away.


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## King Of The Small Room (Aug 13, 2009)

OK just in case Naomi is still about or anyone else in the UK is interested, the company that supplied the Rifaximin to my pharmacist was called IDIS and is based in Weybridge in Surrey.It cost me £130 for a 10 day course of tablets but this was a year ago and may have gone up in price since then. The company who the Prof pointed me in the direction of whose name I can't remember, wanted about £300 as far as I recall.There may also be a mark up cost by the Pharmacist for dealing with a private prescription, something which anyone pursuing this option should look into, as it was a pretty steep mark up cost in my case which added even more to the expense. I've since found out this mark up cost varies from chemist to chemist and some may not even do it at all, so ask around.


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## Naomi889 (Sep 11, 2005)

King Of The Small Room said:


> OK just in case Naomi is still about or anyone else in the UK is interested, the company that supplied the Rifaximin to my pharmacist was called IDIS and is based in Weybridge in Surrey.It cost me £130 for a 10 day course of tablets but this was a year ago and may have gone up in price since then. The company who the Prof pointed me in the direction of whose name I can't remember, wanted about £300 as far as I recall.There may also be a mark up cost by the Pharmacist for dealing with a private prescription, something which anyone pursuing this option should look into, as it was a pretty steep mark up cost in my case which added even more to the expense. I've since found out this mark up cost varies from chemist to chemist and some may not even do it at all, so ask around.


Thank you very much KOTSR, that is brilliant.


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## veejay (Apr 10, 2011)

King Of The Small Room said:


> Hiya Naomi.I live in Liverpool and am an out patient of Prof Whorwell at Withington Hospital in Manchester where I go supposedly every 6 months, though it's usually longer than that these days.He has no qualms about prescribing Rifaximin which he's done for me twice with a private prescription. This gave me 3 months of comparative relief the 1st time, and slightly longer the second.When I've got the prescription, the drugs are then ordered by my pharmacist from a place in Surrey I think (I'll check to find out for sure as I can't remember at the moment) which specialises in non prescription medicines. It is quite expensive, but this place still did them for me cheaper than the place the Prof himself recommended.The beneficial effects don't last forever however, and you then tend to feel worse than ever when you return to the norm. The theory is that you should follow these drugs up with probiotics but speaking for myself, I haven't yet found any that have worked for me.Good luck anyway.


Hi King Of The Small Room, were you able to see Professor Whorwell on the NHS? Did you get referred to him via your GP? Thanks!


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## King Of The Small Room (Aug 13, 2009)

veejay said:


> Hi King Of The Small Room, were you able to see Professor Whorwell on the NHS? Did you get referred to him via your GP? Thanks!


Hiya veejay.I eventually saw him on the NHS yes.But I did start off as a private patient of his when I went through the hypnotherapy programme. When this was over, at my own request I went straight on the waiting list to continue seeing him on the NHS which took just over a year as far as I can remember.There is no reason that I know of why your GP couldn't refer you to him if you ask, though the waiting list may well be even longer these days.Good luck anyway.


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## veejay (Apr 10, 2011)

King Of The Small Room said:


> Hiya veejay.I eventually saw him on the NHS yes.But I did start off as a private patient of his when I went through the hypnotherapy programme. When this was over, at my own request I went straight on the waiting list to continue seeing him on the NHS which took just over a year as far as I can remember.There is no reason that I know of why your GP couldn't refer you to him if you ask, though the waiting list may well be even longer these days.Good luck anyway.


Thanks for your reply KOTSR







that's really interesting. I wonder whether you would have to be based in the local area for a referral (I'm in Yorkshire). All I keep getting from GPs is basically "It's just IBS, there isn't really anything we can do". I guess you just have to keep going back until they get sick of you and refer you on.


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## King Of The Small Room (Aug 13, 2009)

Whorwell's patients come from all over the country and beyond, so you definitely don't need to be local.When it comes to IBS, huge numbers of GP's are nothing more than a joke, as you seem to be discovering now.There are so many things that can be done about it, as you will discover if you have a really good look at these forums.Finding a remedy that works however, is another matter and easier said than done. Which is why your GP, who clearly hasn't got a clue, should refer you to Whorwell or someone like him, though to be honest he hasn't worked any miracles for me.


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## designjunkie (Feb 5, 2013)

Hi everyone - hoping this thread is still being watched. My daughter and I both have an unpleasant gastro problem which has been diagnosed as IBS PI, although this is apparently very uncertain. I suspect that we both have SIBO - its the only label that fits our symptoms, and the cause of the problem (a bout of gastroenteritis).

I came across references to Rifaximin a few months ago, in a handout about IBS given to me by a previous GP - I had no trouble persuading my current GP to prescribe it for both of us - no mention of cost, and no problem getting it, so maybe its become a bit more mainstream.

However - it hasn't helped either of us, apart from a short period of relief for my daughter while she was actually taking it.

As everyone seems to have found out, there's very little if any credence given to the whole subject of SIBO in the UK. What I'm wondering is whether we had the wrong dose of Rifaximin, or need to try a different antibiotic (see for eg the list in this article: http://en.wikipedia.org/wiki/Small_intestinal_bacterial_overgrowth). My GP won't pursue the treatment, and my consultant completely rubbishes the whole idea, whilst acknowledging that he has no other suggestions.

Does anyone have any experience of this? Or any views?

Also - I've not been able to find out how to get the hydrogen breath test, and would really appreciate some advice about this.


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## Kathleen M. (Nov 16, 1999)

Unfortunately it is really hard to know if antibiotics didn't work why they didn't.

It can also be hard to tell SIBO from run-of-the-mill IBS (whether the IBS started from a GI bug or not) without the breath test, but I don't know how easy it is to get that testing in the UK. The question usually isn't how much gas you will make or how many symptoms you will have from the gas as the normal bacteria living where they are supposed to live can make more than enough gas (as there are many more billions in the colon even when you have SIBO then you will find in the small intestine). And from what I've read from people who did SIBO testing for all the classic reasons people used to get SIBO testing for before 2001 say is that it can be really hard to tell just on symptoms alone. They are often wrong even when they are sure someone has to have SIBO from the symptoms.

That makes it even harder to know if you should just throw antibiotic after antibiotic at it just in case, espeically since sometimes they come with their own problems (some can be very likely to give you C. diff which is a lot worse than either IBS or SIBO).

Sorry I'm not sounding more hopeful or helpful.

You may find not feeding any of the bacteria fermentable stuff will help (and Pimental does recommend reducing that food in addition to antibiotics). The low FODMAP diet (started in Australia) may be helpful if you are clear that gas volume is triggering the symptoms more than anything else. You can also try some of the reduce all carb diets rather than just reduce the fermentable ones if those kinds of diets are more available for you.


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## designjunkie (Feb 5, 2013)

Yes, I take the point about a random approach to antibiotics not being great, but we've tried so many different things - including the FODMAP diet, and various other sorts (for example, a high soluble fibre diet following a US approach to dealing with IBS), with no effect whatsoever.

I really don't even know whether the IBS label is appropriate - we both have persistent waves of very distressing nausea, which flares up and down. I know that this can be a less common symptom of IBS, but we have none of the other usual symptoms: no diarrhoea, constipation, bloating or pain; but I've read that nausea is a common SIBO symptom.

I'm aware that some of the antibiotics used to combat SIBO are quite nasty and can lead to C diff infections, and absolutely would not be prepared to take this risk. Some however don't seem too bad, and I'm wondering whether it would be worth trying just two or three at most. Nothing else has worked, and it does seem logical to wonder whether the original GI infection could have left something harmful behind. Obviously though it would be essential to find a helpful and persistent doctor, which seems to be a real problem.


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## Linda Barber (Feb 28, 2013)

Hope my post helps someone! I'm an American and I have SIBO (constipation type) I was diagnosed several years ago by my gastroenterologist. I have been treated with xifaxan (550mgx3 a day) and Neomycin (500mgx3 a day) for two weeks. This has worked really well for me (6 months to 8 months without symptoms). I did take Phillips Colon Health (probiotic) for the last 6 months also but I really didn't see any difference in the time before symptoms returned with probiotics or without. Actually, I went longer without symptoms when I wasn't taking probiotics. I seem to be able to eat anything I want during my symptom free episodes. I don't think I have any food allergies or sensitivities. Before getting SIBO, I had regular BMs and had no problems with digestion. I'm 58 years old. I read Mark Pimentels book "A New IBS Solution" and found that really helpful. I don't know whether I have IBS or not. I just know I have SIBO. I did not have a breath test which I've read is the gold standard test, but my doctor said all the tests have issues so he just did a urine indicans test which I was positive for and then said "Let's try the antibiotics. If they work coupled with your symptoms, that will tell us that you have it." Made sense to me. Now, I can immediately tell when it comes back because the bloating and nausea returns. I had a endoscopy so he knew I have gastroparesis. My symptoms are constipation, bloating and the worse symptom that really floors me is nausea -- that is so bad I really just try to go to bed for a few days --- even zofran really doesn't help much. I do not vomit. It's just horrific nausea. Can't eat or drink for a few days. Anyway, this is different for everyone but this is what has worked for me so far.


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## Guenon (Mar 4, 2013)

Just about everybody will get some level of SIBO. Alcohol kicks mine into gear. Takes months of no-drinking to clear it up with no antibioitics if I reach a certain level.

I guess I am not that bad compared to some though. You guys have had it rough wow!!!


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## eddiebelfast (Aug 27, 2013)

I am 67 yrs old/young and suffer from SIBO. For as long as I can remember I have had excessive wind which as I got older resulted in a bloated stomach. I believe my SIBO runs in the family . I recently came across a photo of my Father taken over 40 yrs ago and he had the same bloated appearance that I have/had. The most disconcerting aspect for me was the explosive burps and flatulence and the uncontrolled bowel movements that can only be descibed as explosive. Another prob was excessive Indigestion, any time of the day or night often resulting in waking up during the night thinking I was having a Heart attack. I got over this by eating my main meal at Noon.

One of the other symptoms I had was Nausea, my Mother suffered from this so again hereditory I believe. I suffered from this till about four years ago when I went on holiday to a place where fresh milk wasn't available, so I changed my Breakfast menu to an Orange , nuts and Toast. After three days I noticed my daily nausea had disappeared. Since then I have had an Orange before my normal breakfast and the Nausea is a thing of the past. Which to me means my stomach doesn't have enough Acid. If I do start to feel sick in the stomach I just eat an Orange and all is well.

SIBO, I have the Daily Mail to thank for bringing my attention to this thing called SIBO. A couple of years ago it ran an article about a little known stomach prob. I read the symptoms and realised that this could be one of my troubles. Went to my local highly paid pill pusher (LHPPP) and told him about this article and he looked it up ( he had never heard of it, just like the DM said he probably wouldn't ) he prescribed " Norfloxacin " which worked wonders. I went back to him four weeks later and said fantastic result but I felt another course would improve it even more. I took the extra course and all was well for about 18 months when I noticed the same old symptoms reoccuring. Another course was administered and big improvments resulted.

This was about three weeks ago. I sat thinking about this taking of Anti-Biotics and decided to look around for a natural treatment.

I came across a thing called "Kefir" and decided to try it. And glad I did too. What a difference, after one week my stomach has gone down further than when on the AntiBiotics . I now wake up after a nights sleep sans stomach pressure and no explosive burps/flatulence, it's wonderful!

Whilst on the subject of explosive flatulance.. I have always ( for as long as I can remember) suffered from an itchy anal area. All of the LHPPP I consulted suggested patting instead of wiping the offending area, alas no improvement. About ten years ago my newly wedded Wife suggested trying Baby Wipes instead of Toilet Paper, Oh! what a difference, what a relief, no more itching, no more scratching in public. I now realise that the explosions must have been depositing minute pieces of excretia around my nether regions resulting in itchyness.

Explanation of my cynical labeling of GPs as LHPPPs. I have high BP and have been taking BP pills for years. My LHPPP refused to give me blood thinning tablets, I can't take Aspirin so need the alternative treatment, reason, too expensive! go figure?. He sent me to the Hospital for a test consisting of walking/running on a treadmill whilst numerous wires where attached to various partsof my body. The Doctor running the test prescribed the blood thinning pills. When I told her my LHPPP said they were too dear she just raised her eyebrows.

And heres how I found out about so called GPs. Several months later I went to my GP but he wasn't there and I had to see another. She just about freaked when she saw that I was on Blood thinning tablets, she almost yelled at me, " Who prescribed these for you"? it was then that I realised the LHPPPs only prescribe the pills that the Pharmaceutical companies pay them too. She got quite upset when I asked her was this the case.


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## eddiebelfast (Aug 27, 2013)

It would appear I cannot edit my post. So further to the above post....

I have been taking Kefir twice a day for just over a week. My stomach is still deflating and my Fatigue is improving. Normally I have to eat at specific times or I suffer from inner body shakes resulting in a Nausea attack , yesterday I walked several miles and was two hours past my normal lunch time before eating without suffering at all.


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