Small Intestine Bacteria Overgrowth (SIBO)
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?
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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?
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.
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!
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!
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.
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
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!
@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
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. ?
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.