Small Intestine Bacteria Overgrowth (SIBO)

Posted by jacque6977 @jacque6977, Feb 22, 2017

My wife, after years of suffering from debilitating nausea and fatigue, has finally been diagnosed with SIBO as confirmed by a hydrogen breath test. It is estimated the bacteria has had at least two years to grow and may be well established. She has started on Xifaxan, at $35 per pill, but it is estimated that elimination of the SIBO may take up to six months. Her day now starts with her waking up with nausea and when she has a cup of tea and toast in the morning she gets sick within fifteen minutes thereafter. Her sickness is accompanied by violent belching, and at times she regurgitates liquid vile. The only drug she has for nausea is Zofran which does nothing for her. Are there any other SIBO sufferers that are experiencing the same symptoms, and what are you taking to reduce the nausea?

Interested in more discussions like this? Go to the Digestive Health Support Group.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 27, 2017

Hi @april12mayo,

You may also wish to view this discussion about SIBO on Connect, https://connect.mayoclinic.org/discussion/hi-i-have-been-suffering-from-small-intestine-bacterial-overgrowth-since-last/ where @momochan @janovr @fa7100 @vwerner @lateacher and others have also written about their experiences.

Although I'm confident that Mayo Clinic does use the hydrogen breath test for many GI issues, (https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-lactose-intolerance-can-develop-at-any-age/), it would be best to call Mayo Clinic and confirm, as Teresa suggested.

@april12mayo, you mentioned, "I am having some relief with Atrantil." May I ask if you could share some more information about this?

april12gia | @april12mayo | Dec 27, 2017

In reply to @kanaazpereira "Hi @april12mayo, You may also wish to view this discussion about SIBO on Connect, https://connect.mayoclinic.org/discussion/hi-i-have-been-suffering-from-small-intestine-bacterial-overgrowth-since-last/ where..." + (show)

Hi, I heard about Atrantil on Sirius radio. The commercial said it was for SIBO. It was developed by a board certified gastroenterologist. It contains 3 natural botanical ingredients that target the bad bacteria. I know it is helping, but I would like to find out from a breath test if I have a lactose of fructose intolerance. I have been taking 2 Atrantil 3 times a day for over a month. It is getting expensive and SIBO is not completely gone. But I have improved.

saucy | @saucy | Dec 27, 2017

I had the lactose and fructose test at Mayo before my LYNX surgery. They were both negative. After surgery I still had to take meds, still had high A1C and a host of other problems. I cut out fruit and it changed my life. My point being don't relay on these tests they are not always correct. It's better to cut out food groups one at a time and see how you feel. You'll know in a few weeks. A good start is lactose. Cut out all dairy. Then if no change in how you feel in a few weeks slowly add back one item at a time. Next cut out all fruit, by the way I got my A1C down to 5.7 but couldn't get it lower until I found out that things like cucumbers and peppers are also considered fruit! Once I cut that out my A1C went to 5.4! My doctor was shocked. Now if I eat something that I shouldn't I have problems for 2-3 days so it's not worth it! As far as SIBO once again don't wait for a test treat yourself as though you have it, it won't hurt you if you don't but change your diet. A good probiotic, no sugar in any form including breads and pastas, drinks, protein bars. Yes i know what does that leave you to eat!! Not much, eggs proteins and some vegetables! I can tolerate cheese and whey protein, but watch the protein bars some are very high in fiber and I have a hard time digesting them. I know it's a lot of work but when you find the hidden food you will feel sooo much better it will be worth it!

april12gia | @april12mayo | Dec 27, 2017

Oh... I am just seeing this and thank you so much. I don't know what lynx surgery is or a1c but it does make sense to figure out which food or foods started this. I have learned a lot about fodmaps and the foods in each fodmap group. I use the Monash app. I was surprised to learn how some foods are in a group that I would not have guessed. So your advice makes sense. Thank you!

pjeurissen | @pjeurissen | Jan 3, 2018

In reply to @lizbee78 "I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and..." + (show)

Hi SweetMaize, My hydrogen breath test levels never peak until 90+ minutes, but luckily my GI doctor has figured out that's how my body works (based on results of my gastric emptying scan). So, in my case, and possibly yours, it was diagnosed "Late Positive SIBO". If you were given Xyfaxin and your symptoms improved significantly, that could be your answer.

Teresa, Volunteer Mentor | @hopeful33250 | Jan 3, 2018

In reply to @lizbee78 "I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and..." + (show)

Hello @pjeurissen, I see that this is your first post - welcome to Mayo Connect!

We appreciate the information that you provided about Late Positive SIBO, I had not heard of that before. it sounds like your Gi doctor has the ability to think outside the box and compare the results of different tests. You are very fortunate to have an answer for your problem. One of the great things about Mayo Connect is the way we learn from each other and we appreciate your adding to our knowledge base.

How are you feeling now? Are you taking meds or a diet plan that is helping?

Teresa

pjeurissen | @pjeurissen | Jan 3, 2018

In reply to @lizbee78 "I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and..." + (show)

Well, after a Christmas where I was feeling amazing and was starving for some "good" food (the kind that is not SIBO friendly) I indulged a tiny bit for a week. I started feeling the familiar slight stabbing pain in my upper gut and I panicked. I am strict, strict, strict right now holding my breath that I didn't bring it all back again. UGH!! On the bright side (if there is one!) my insurance company just approved a third round of Xifamin today. I will hold on to it until I know for sure it's all back again. So frustrating!! I might go down and get another breath test just to be on the safe side to see if it's back for sure, and also to confirm if I really can tell that it's back from my own intuition!

Teresa, Volunteer Mentor | @hopeful33250 | Jan 4, 2018

In reply to @lizbee78 "I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and..." + (show)

@pjeurissen I hope that your discomfort is just temporary and that after you adherence to your food plan you will feel better. That is good news, though, about your insurance covering the Xifamin. I hope that you won't need it, but it is good that it is available,

Your experience with SIBO is certainly enlightening.

Will you update us as to how you are feeling and let us know if you have another breath test?

Teresa

edithbeaujon | @edithbeaujon | Feb 26, 2018

In reply to @jacque6977 "Today, even though very sick, my wife went to her gastro doctor to seek some relief..." + (show)

@jacque6977

Today, even though very sick, my wife went to her gastro doctor to seek some relief from her daily nausea and fatigue I took along my breath test lab report that showed "Presence of Bacterial Overgrowth is Supported". The doctor, who has been trying for four years to find a cause, got upset when I referred to the lab report showing SIBO. He said that if I was going to use a outside lab for a diagnosis, he no longer wanted my wife as a patient, and beside that, he didn't believe SIBO was her problem even thought the lab report showed SIBO to be present. The medical profession had spent four yeas at a Medicare billed cost of over $250,000 trying to diagnosis her nausea and he couldn't accept the fact that in two weeks at a cost of $170 I was able to at least come up with a possible diagnosis. It should be mentioned that in December I requested the doctor perform a gastro emptying study. The study showed a 21 minute dump, and though it raised no red flags with the doctor, it did with me. This meant food was passing thru the stomach without the benefit of the stomach acid to aid the digestion and would now required the small intestine to do both its work and the work of the stomach. Following the Mayo Clinic web site, the next step would be to perform a hydrogen breath test. When I asked the doctor to do the test he said the practice did not do the test because they could not find a local lab. I went on line, found a lab, got the kit and my wife performed the test at home. Five days later I had the test results back.The problem is the doctor will not accept the suggestion as to what I think her problem might be, even though I had researched chronic nausea on at least twenty medical web sites. His final comments were that he was not able to diagnosis her nausea, he didn't believe it was SIBO despite the lab report, she should go to the Mayo Clinic and he no longer wanted her as a patient. He also refused to re prescribe any of her current drugs. So I now have a sick wife who has lost seven pounds in the last month with no relief in sight. I am now in the process of finding another gastro practice who will accept a reject from a competing practice. As an aside, two months ago, on one of my wife's frequent ER visits, as usual all of the ER test results were normal and the doctor said he saw she was sick but he couldn't admit her because she had no diagnosis. I happened to have the breath test printout with me and told him what I thought her problem might be. He said the results looked valid and he asked ME what I wanted him to do. I said prescribe Xifaxan, 550mg, 3/day for 14 days. He did and I was able to put her on a 14 day anti-bacteria, 14 day probiotic regiment for two cycles. Since the doctor has refused to refill the script, and progress toward treating the SIBO has come to a stop. So, since I was the one asking for a gastric emptying test, the one who obtained the breath test and the one who prescribed the medication, my WebMD degree has served me well. If I could only write the drug scripts I wouldn't have to experience the two hour wait in the doctor's office.

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oh my gosh similar thing happened to me what city do you live in i was losing weight lost 50 pounds . did my research listenen to podcasts . Dr told me i should stop reading . asked him to refer me to one of his colleagues who did breath test he refused. Since he is a big wig in this are and many of the gastro practices are under one corporate umbrella no one else wanted to see me.
Went to john hopkins wasn't impressed with person i saw but she did write Rx for breath test. Came back positive took anitbiotics for 2 weeks better for short time then came back even though i was following SIBO diet. Went to Mayo they did endosocopy took fluid which showed i had SIbo still . Another round of Antibiotics. just finished my third round. have lost almost 60 pounds. I do also have cancer but two oncologists say weight loss is not from cancer. Life has become very difficult. wondering how your wife is doing. ?

chergil | @chergil | Feb 26, 2018

Hi Everyone,
My 19 yo son is having similar issues. Is extremely thin due to weight loss. He is in the 15 percentile for his height. I feel like I am watching him starve to death. He has been ill with anxiety and diagnosed last August with gastroparesis. Severe nausea upon waking and inability to eat much throughout the day. No nausea meds seem to help and has been on too many to list. Toast in the AM is about all he can handle. There are times he can eat at night, but the nausea is back in the morning and he doesn't eat again all day. In August the doctor tested 8 stool samples for giardia, and other parasites, fecal fat, to H-py etc. along with a phelora of bloodwork. No positive results. We did switch doctors after his primary insisted he eat more. That was helpful. His new doctor is suggesting the SIBO test. My son is in good spirits but is unable to work or go to school due to being constantly nauseous and anxiety ridden. I am so sorry to hear of others with similar issues. It is very difficult feeling helpless with a loved one.

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