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Rifaximin (Xifaxan) and IBS (C) / bacterial disbalance, my experiences

Meleber profile image
53 Replies

Through this post I'll try to keep you informed about my experiences with Rifaximin, an antibiotic that I'll take for a month to treat my IBS (C) / bacterial dysbiosis. I've a lot of all over the body symptoms and hope these will 'disappear' or at least will become less severe. Also very curious if symptoms will stay away after the course of antibiotics has ended or if they will gradually return, as has happened in the past when I took tetracycline and augmentin for other medical reasons. Fingers crossed.

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Meleber
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53 Replies
Catatvet05 profile image
Catatvet05

Some of the medication you mentioned apparently is used to treat IBS. I would definitely take probiotics - helps me.

b1b1b1 profile image
b1b1b1

I also took rifaxamin for SIBO. May I ask what all over bodily symptoms you had? 🙂

Meleber profile image
Meleber in reply to b1b1b1

Amongst others: tinnitus, brain fog, inflammation of the skin (head / upper legs), deterioration of eyesight, low red blood count RBC, low hemoglobin, anxiety, depression, chronic fatigue, loss of muscle strenght and mass (notably in the (upper) arms) , weight loss, concentration problems, problems with memory, no mental en physical energy, excessive sweating, problems with body temperature, dizziness, not sleeping well since a very long time / non restorative sleep, chronic muscular tension, frequently urinating.

Edgar77 profile image
Edgar77 in reply to Meleber

I have many of these symptoms and just told its fibromyalgia.?

Meleber profile image
Meleber in reply to Edgar77

Hi, I'm not familiar with fibromyalgia but read that constant pain is the main symptom and I never have had this. It must be very hard, living with persistent pain. IBS might be one of the other symptoms of fibromyalgia. I suppose your doctors did a proper anemnese before they came to the conclusion that you have fibromyalgia.

Edgar77 profile image
Edgar77 in reply to Meleber

What is anemnese?

Meleber profile image
Meleber in reply to Edgar77

Sorry, probably Dutch word. It's medical history, not diagnosis.

A rough translation of the word anamnese using Google gives the following:

A medical history is what a patient can tell a healthcare provider about the history and relevant circumstances of their illness or condition.

Meleber profile image
Meleber in reply to Edgar77

Made a correction of the word anamnese. It's used to come to a diagnosis.

Meleber profile image
Meleber

First thing noticed is pain in the abdomen a couple of hours after I took the first tablet this morning. Pain lasted for several hours. Can be a side effect according to the patient leaflet but can also be due to constipation. I'm not sure but my best guess now (afternoon) is that it is the latter.

b1b1b1 profile image
b1b1b1

I had extreme tiredness, very low grade fever, redness & inflammation in my cheeks, and weight loss. In my case I think these were from SIBO, not from the rifaxamin. I took the antibiotic for 2 weeks, but the bodily symptoms took a good 2 months to clear up. Basically, I felt pretty sick the whole time.

Meleber profile image
Meleber in reply to b1b1b1

Hi, the all over the body symptoms are related to my problems with the intestines / IBS / bacterial disbalance and not to rifaximin. Hope they will go away and stay away as a result of the course of antibiotics (rifaximin).

Meleber profile image
Meleber

Feel and hear an considerable increase of (gas) activity in my intestines, more discomfort, since this Sunday morning. Need to stay close to the bathroom today💩

b1b1b1 profile image
b1b1b1

Hope it improves soon.🙂

Meleber profile image
Meleber in reply to b1b1b1

Thanks, hope so too. Are you currently free of symptoms?

b1b1b1 profile image
b1b1b1 in reply to Meleber

I am relatively free of symptoms, but am mostly careful to stay on the diet. I do have some gas (not painful) and occasional bloating, but compared to where I was, it's a miracle. What really upset me though was that the gastroenterologist did not take the bodily symptoms seriously and even said maybe they were not related to SIBO. I had a lot of anxiety from the bodily symptoms.

Also, I don't remember if you are on the Fodmap diet. I think that was a tremendous help to me.

Orchid99 profile image
Orchid99

Hi, I have large intestinal dysbiosis and methane overgrowth (confirmed by breath test) My symptoms were loose yellowy stools with horrible cramps, multiple food intolorences which has lead to 2 stone weight loss, bubbling feelings in large intestine and occasional gas. My gastro did a ct scan which showed faecal loading in the colon so he is now testing for motility issues, so he told me the loose stool was overflow d and that I was ibs c. He prescribed me Rifaximin for two weeks but because I'm methane dominant I need neomycin as well but he won't prescribe it, so I haven't taken it yet and done herbal antimicrobials instead prescribed by a functional practitioner that I did my stool analysis with, I am on my 5th week of 8 and will do a breath re-test after to see if my numbers have come down. If not I will have to try the Rifaximin with allicin next and then the gastro told me elemental diet will be last port of call which will starve the bad bacteria. Are you doing low fodmap after your antibiotics as this helps relapse? And you will need to find your underlying cause if not known already.

Meleber profile image
Meleber in reply to Orchid99

Not explicitly FODMAP but during time I've put a side many foods/ingredients that I found out were causing problems with my intestines. Underlying cause might be hard to find, maybe never will be found. As far as I know now it could have already started during early childhood (I'm almost 52 years old). Bad genes, not being breastfed, several courses of antibiotics during childhood for asthmatic bronchitis?

Orchid99 profile image
Orchid99 in reply to Meleber

Yeah it is a minefield to try and figure it out. Mine is either ppi use, antibiotics or motility problem. What foods do you find a problem, I'm wondering if it is similar to mine as we are both ibs c?

Meleber profile image
Meleber in reply to Orchid99

Insoluble fibres from vergetables/fruit, lactose, egg white, too much fat, histamine triggering food/medication (aspirin), spicy food.

Orchid99 profile image
Orchid99 in reply to Meleber

Yes fibre is definitely an issue for me, and dairy. Can't do wheat or gluten free bread either. I can have 2 eggs scrambled or in an omelette though, oats are a problem too but the annoying things is two years ago I could eat what ever I wanted.

Bcgkelly profile image
Bcgkelly in reply to Orchid99

Be careful as I was diagnosed by a gastroenterologist with Methane SIBO and the low FODMAP diet made my symptoms worse. Particularly daily cramping. I was put on rifaximin and neomycin but I never got any lasting relief & ended up with tinnitus from the neomycin.

Orchid99 profile image
Orchid99 in reply to Bcgkelly

Unfortunately I'm in a pickle with the low fodmap, I've been stuck in elimination since August last year and it has caused dysbiosis now and an eating disorder, I'm nearly anorexic and under a dietitian to try and reintroduce foods, mentally this bowel condition has really impacted me.

Meleber profile image
Meleber in reply to Orchid99

Also about 2 stone weight loss since 2018. Now stable, about 61 kilograms.

Andiball profile image
Andiball

I've been on Rifaxamin for years to help control my hepatic encephalopathy, I've found it to b an absolute miracle drug, I also have ibs d but don't remember it causing long term problems. Good luck everyone xx

Meleber profile image
Meleber in reply to Andiball

Thank you. I hope it will work for my intestinal and other related health problems.

Meleber profile image
Meleber in reply to Andiball

Does it help for your IBS?

Meleber profile image
Meleber

It has been five days since I started my course of antibiotics with rifaximin. Till now I can't say I feel any difference. Yesterday I did sent a message to my gastroenterologist asking him why he gave me a prescription for 2 tablets a day (1100 mg) during a period of 30 days instead of 3 tablets (1650 mg) during a period of 14 days. The latter seems to be the normal dosage currently used for treating IBS symptoms.

Meleber profile image
Meleber in reply to Meleber

Gastroenterologist said I could take three tablets a day but also added that I should take it for four weeks, not 2. In his experience the course should be long enough to prevent symptoms to reoccur. I'll now just stay with 2 tablets a day during a period of 28 days.

Meleber profile image
Meleber in reply to Meleber

I wrote yesterday that after five days on antibiotics I didn't feel much difference.

I have to add that since this morning, the sixth day, I do observe a difference namely that I seem to have a bit more mental energy. Normally I have to lay down after 3 hours to get some rest but now I have been awake since 5.30 am and it's almost 11.30! Feel that I need to lay down now to give my brain some rest. Hope this improvement will last.

Meleber profile image
Meleber in reply to Meleber

improvement didn't last

Meleber profile image
Meleber

Till now no difference in bm / bloating / stool / trapped gas. Also not yet sleeping better. But it's just a week ago since I started with the treatment so I should have some patience.

Mwaakas profile image
Mwaakas

I have similar symptoms to you, but have you done a colonoscopy to rule out other irritable bowel diseases?, as for me my doctors says, its psychosomatic disorder, a disease which involves both mind and body try google about it maybe it will open up your mind to what is going on within your body

Meleber profile image
Meleber in reply to Mwaakas

Yes, had all the examinations MRI/CT/X-ray/colonoscopy. When your digestion/intestines is/are not working properly it affects the whole body. Hippocrates already knew :-)

Meleber profile image
Meleber

Till now I can't feel or see any improvement in my IBS related symptoms. I know that it can take a while before antibiotics show some effect so I keep my fingers crossed. Still 16 days to go before my course of antibiotic ends. In contrary to what is most used I was prescribed a course for 28 days, 2 tablets (550 mg) a day.

Meleber profile image
Meleber in reply to Meleber

Maybe even more fatigued than before I began with the antibiotic.

Meleber profile image
Meleber

A couple a days ago I thought that my fatigue and tinnitus were increasing but this was just for a short while. Since last Friday (the 15th day of the antibiotic) it feels like symptoms are improving very slowly. I noticed that I have a bit more (mental) energy. And as a consequence I seem to do a little bit more without thinking. A ray of hope finally? (Hope I use the proper words, used a translation app for the Dutch word "lichtpuntje").

Meleber profile image
Meleber in reply to Meleber

So it seems my intestinal flora is slowly becoming more in balance as a result of the antibiotic and as a consequence all the bodily processes are normalised.

Meleber profile image
Meleber

If I start whistling or singing again this would mean for me that my intestines are working properly. I think this has to do with the production of serotonine in the gut that has been compromised due to my chronic bowel problems.

Meleber profile image
Meleber

This morning I had a normal bowel movement :-) Bristol stool scale 3/4. Didn't take a laxative yesterday evening before bedtime and also didn't grind/crush my evening meal.

Meleber profile image
Meleber in reply to Meleber

The second day that I didn't grind my evening meal and also didn't take a laxative. Felt and feel a bit more discomfort in my right lower abdomen but no pain. No proper bowel movement yet but it is stil early in the morning so nothing to be worried about. I drink a lot of (decaffeinated) coffee and still smoke (I know I should stop but first things first) so this (caffeine and nicotine) can have some stimulating effect on my bm :-) Some BM later in the morning but also a bit more constipation. I therefore took a laxative round midday.

Meleber profile image
Meleber

A couple of days to go till I finish my antibiotic. So far I didn't notice a remarkable difference in my symptoms. If there are improvements they are barely noticeable. In about a month my gastroenterologist will contact me to discuss the results. If things won't improve further I will ask him for a different antibiotic to try (a tetracycline, norfloxacin, augmentin or neomycin?). I have had augmentin and gentamicin but this was when I had Weil's disease and was treated in the hospital. Also will ask him if a bacterial culture of small bowel aspirates could be done before deciding which antibiotic to try next. And another thing I want to discuss is if there's a need for an additional physical examination, especially my right lower abdomen. If my gastroenterologist thinks that all of these suggestions aren't advisable, I think I will start supplementing with tryptophan to see what kind of effect this will have. So, not out of options yet :-)

Meleber profile image
Meleber

I link here to my other question on experiences with antibiotics and dysbiosis healthunlocked.com/theibsne...

Meleber profile image
Meleber

Curious, on Sunday and Tuesday I ate chips and Monday only bread. Tuesday and Wednesday I felt rather well. did eat macaroni on Wednesday evening and today I have more problems with my intestines. I know I ate fibres, some vegetables in the macaroni, but not much. The previous days I almost didn't ate any fibres.

Meleber profile image
Meleber in reply to Meleber

So fibres can be bad too. I will try the "unhealthy diet" :-)

Here's Prof Whorwell's guide to the fundamental dos and don'ts for IBS sufferers.

WATCH YOUR FIBRE INTAKE

For decades, doctors have been taught that IBS can be treated by getting the patient to eat more fibre or take fibre-based medication. In 1994, Prof Whorwell and his team published a study in The Lancet challenging this thinking - it showed that, in fact, for many, fibre and particularly bran could make symptoms worse.

"So many [patients] told me that fibre seemed to be making their bloating worse that I thought I'd better think the unthinkable and asked them to try cutting it out instead," he says.

Since then, he has been advising his patients to reduce their bran intake, cutting out high-fibre cereals and switching from brown to white bread, to see if they notice an improvement. "For the average punter, a high-fibre diet is good and keeps the bowel ticking over well, but if a patient has a loose bowel they probably need to be easing up on the cereal fibre. I think we need to see it as something that can be an irritant to the gut, and everybody will have their threshold."

HEALTHY FOODS AREN'T ALWAYS WHAT THEY SEEM

Many fruits and vegetables may exacerbate an irritable bowel. The theory is that a group of carbohydrates known as FODMAPs (fermentable oligosaccharides, disaccharides, monosaccharides and polyols) are poorly absorbed by the small intestine and so end up in the large intestine, where they are fermented by gut bacteria.

This process leads to the release of gas, which experts believe causes the characteristic bloating and pain seen in many IBS patients. Bread and pasta, fruit such as apples, pears and plums, and vegetables such as onions, cauliflower, sprouts and leeks are all high-FODMAP foods - so if you felt uncomfortable after your Christmas meal, the sprouts and cauliflower could be as guilty of causing the problem as the roasties and brandy butter.

Prof Whorwell says a low FODMAP diet benefits about 60 to 70 per cent of his patients. However, many people feel concerned at the thought of cutting out so many fruits and vegetables, as well as fibre, because these foods provide important nutrients and minerals.

"You can't get away from that," he says, "and in our clinic, when we put patients on this diet, we call it our 'unhealthy diet'. Patients worry about increasing their risk of colon cancer, or ask if their cholesterol will go up. I usually say that the statistics are slight, and they have to think about feeling well now, and the slightly higher risk of disease later in life."

He advises people to begin by cutting back on cereal fibre. If symptoms don't improve, go on to a low-FODMAP diet, then reintroduce foods one by one to see what the body can tolerate.

DON'T UNDERESTIMATE THE ROLE OF STRESS

We've all experienced how a nerve-wracking exam or big boardroom meeting can cause an upset tummy - and Prof Whorwell says this can heighten IBS. "The one personality trait the typical IBS patient has is that they tend to be worriers," he says. This may make them more sensitive and "hypervigilant" to pain and bloating than others might be.

"I always play down the role of stress in patients, because they are so fed up with being told it's all in their heads. I ask them to think about it in a points system, where certain foods will contribute a certain amount to their IBS, and stress will heighten their intolerance to these foods even more."

TRY HYPNOTHERAPY

Prof Whorwell's unit offers hypnotherapy to IBS patients, and he admits he has been surprised at how impressive the results have been. The sessions use deep relaxation and visualisation to teach patients techniques to manage and control their symptoms.

"All the patients get a CD, so they can take the therapist home with them and if things get bad again, they can use it." One large review of the literature, published in 2014 by the American Psychosomatic Society, found hypnosis brought a 54 per cent improvement in patients with IBS who had not responded to conventional therapy.

There are many treatment options to try, so Prof Whorwell stresses that those with IBS should not despair.

"For many GPs, it's still a 'heart-sink' condition, yet for me it's such fun treating these patients because they're so pleased at the end of the consultation. It's not one size fits all, but it's not rocket science - it's just listening to them and tweaking things."

IS IT IBS OR IS IT COELIAC DISEASE?

Coeliac disease - an immune response to gluten - shares many symptoms with irritable bowel syndrome.

The picture can be confused by the fact that having coeliac can leave you with IBS after it's treated. What's more, experts now believe that people who react to gluten but test negative for coeliac disease may have a condition called non-coeliac gluten sensitivity.

Prof Whorwell adds that it may be fibre that's causing their symptoms, but they're mistaking it for gluten. "If you're on a gluten-free diet and feeling substantially better then I wouldn't tell you to stop it, but bear in mind that fibre and FODMAP foods might be playing a role as well."

in reply to Meleber

It’s took me years of eating high fibre diet especially insoluble to find out it made my constipation worse all along !! Now I try and eat low fibre avoiding.stoned fruit , apples , whole grain bread , nuts and I take a soluble fibre guar gum And a stool softener and it’s working for most of the time . Even had to stop eating oats such a shame it’s hard as I love high fibre foods x

Meleber profile image
Meleber

Today is my last day (antibiotic for 28 days, 2 tablets 550mg a day) on the antibiotic rifaximin. As mentioned earlier I didn't notice a big difference. But since last Tuesday, the 8th of June, I seem to have more energy during daytime. I'm not sure yet if this is because the antibiotic or if it is food related. At the moment I suspect the latter but will try to find out the next few days. I ate more chips the last few days and less insoluble fibres (vegetables). This seems to have a positive effect on my intestines.

Meleber profile image
Meleber

So my first day after finishing the course of antibiotics. As from Monday the 14th of June I'll try to reintroduce vegetables in my diet to find out if insoluble fibres are (still) causing constipation/bloating/gas/abdominal discomfort or even pain in my lower right abdomen. Last week I almost only did eat chips (oven) and bread, buckwheat. I drink lactose free milk and cheese made from the milk of Jersey cows. Also do eat easy to digest (soft) meat. I'm not convinced yet that rifaximin did help. I have an appointment with my gastroenterologist in July. In the weeks to come I'll have the time to find out with changing my diet so I can tell him if rifaximin had a positive effect or not.

Meleber profile image
Meleber

This morning right lower abdominal pain and constipation with overflow diarrhea again and it started yesterday in the afternoon. To me it seems to be a still existent but not yet diagnosed physical problem that is also causing dysbiosis. If it keeps reoccurring this week I will ask if my appointment with the gastroenterologist can be rescheduled to an earlier date.

Meleber profile image
Meleber

Yesterday I did sent a message to the hospital asking if my appointment with the gastroenterologist could be rescheduled to an earlier date. They called me because the gastroenterologist would like to see me instead of having a consult by phone. I can go to the hospital today!

Meleber profile image
Meleber in reply to Meleber

I explained my symptoms again and have told my gastroenterologist that the course of antibiotics didn't have a noticeable effect, symptoms still occur intermittently. Discussed the possibility of a mobile ceacum syndrome and he told me I have to discuss it with a surgeon. He made a referral for me.

in reply to Meleber

I’ve read somewhere that after the bad bacteria have been killed you should take a good probiotic to establish good bacteria in the gut ,x

Meleber profile image
Meleber

On the 3rd of August I have an appointment with a surgeon to discuss the mobile cecum / caecal volvulus. I will be on a 'liquid' diet till this date. This is my own choice because my colon is working better when I do. Liquid means as soft as possible and no hard to digest food like insoluble fibres.

Meleber profile image
Meleber

I started a new subject on mobile cecum healthunlocked.com/theibsne...

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