1. < Digestive Health

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?

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haighsue | @haighsue | Feb 27, 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.

Jump to this post

After years of struggling with a condition eventually diagnosed as SIBO and only marginal
Improvement on a rolling progmme of antibiotics, I was referred to an NHS FODMAP dietitian ( you can look up the FODMAP diet online). After six months of strict adherence to the diet my condition has stabilised and I’m eating more. I still make mistakes and suffer for it but it really did the trick for me. My only problems surround eating in restaurants and in other people’s homes, plus the fact that FODMAP isn’t supposed to be permanent - I don’t know if I can ever come off it.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 2, 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.

Jump to this post

Welcome to Connect, @edithbeaujon. I'm sorry to hear about your struggles with SIBO, and so glad you've joined the Connect community. If you would like to share more about yourself, we have an incredible Cancer group on Connect, https://connect.mayoclinic.org/group/cancer/, where I'm certain you will be warmly welcomed. May I ask why the doctor refused to do a breath test?

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Apr 8, 2018

Hi @chergil,

I wanted to follow up about your son; how is he doing?

I also wanted to mention that we have some incredibly informative discussions about gastroparesis which you might wish to view:
– Does anyone else have Gastroparesis not caused by diabetes? https://connect.mayoclinic.org/discussion/does-anyone-else-have-gastroparesis-not-caused-by-diabetes/
– mild gastroparesis with severe symptoms! https://connect.mayoclinic.org/discussion/please-read-mild-gastroparesis-with-severe-symptoms/

I'm tagging @darlia @aishia @katmandoo @ohimsick @kbelter @hymelchristy @donnamarie @loricarey and Mentor @gman007 all of whom have very recently shared their gastroparesis experiences. I sincerely hope to hear back from you, and wish your son all success.

REPLY
Gary, Alumni Mentor | @gman007 | Apr 9, 2018
In reply to @chergil "Hi Everyone, My 19 yo son is having similar issues. Is extremely thin due to weight..." + (show)
@chergil

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.

Jump to this post

Hi @chergil! I am so sorry about your son. It is difficult to suffer, but one's own suffering is nothing compared to watching your child suffer and I am sorry that you can't seem to find a solution. Has any doc recommended trying digestive enzymes or tested to see whether he has normal levels of pancreatic enzymes which are mostly responsible for digestion. I take very heavy dosages of enzymes to try and let my pancreas rest, but the man made does not work as well as what your body makes, so things still move slowly through my system, but it does make a big difference in the nutrition I get from my food. The ready to drink shakes from Glucerna, Boost, Ensure, etc...are a good way to get some nutrition when solid food is not an option. They are typically at least one of my meals every day because of nausea. You have my prayers and positive vibes going forward and I hope you can find some solution for his problem. Please keep us informed.
Gary

REPLY
12061948 | @12061948 | Aug 25, 2018

I was diagnosed with SIBO. HIGH METHANE LEVELS. CHRONIC constipation
I’ll try to make this short I got you in 2013 with something like vertigo and by January 2014 had the worst sore throat of my life do you have Dr. did in the scope and said I had esophagitis Candidus So I was given fluconozole
For 10 days and it did not knock out the sore throat the same day I was diagnosed with candida
My family doctor called and said I had a bad UTI and gave me 10 days of Cipro So I was taking drugs at the same time Sore throat never left and so G.I. doctor gave me 20 more days of the fluconozole. Still have a sore throat could not eat got down from 136 pounds and I weigh 2013 to 99 pounds So they put me in the hospital and put a prg tube in but did not work
So I just tried to eat and events like the doctor took the peg tube out because I gained a few pounds by just trying to eat. Two weeks after being in the hospital and getting the peg tube I had facial spasms and seizures
Went to the ER three times and the doctors knew what it was and said they never saw anything like it
So here it is 2018 and I’m still not feeling well and have neck problems and stiff Throat muscles and horse voice
Anyway I just did the Sibo test again
Waiting the result. I did take the rifaximin and it seem to help but then the SIBO Constipation returned
Anyway my point is I’m wondering if the peg tube they inserted had done something to my stomach and the scar tissue is causing my issues I keep mentioning it to the G.I. doctors I’ve seen and I think I’m crazy
Or if maybe it’s affected my Vegas nerve and causing my very slow motility

REPLY
3 replies
ohimsick | @ohimsick | Aug 25, 2018

I used Zofran with good results for 10yrs, which included use of Phenergan. My condition is gastroparesis. Finally, the nausea was so severe that I just didn't get off the couch. I would ask if there was anything else for nausea treatment and I was told no. I did some internet research and started coming across articles talking about the use of Marinol which has been around since the 80s (synthetic THC). I asked my gastro if I could try it and even though I'm still dealing with nausea it has given me the ability to get up again.

REPLY
alina151 | @alina151 | Aug 25, 2018
In reply to @12061948 "I was diagnosed with SIBO. HIGH METHANE LEVELS. CHRONIC constipation I’ll try to make this short..." + (show)
@12061948

I was diagnosed with SIBO. HIGH METHANE LEVELS. CHRONIC constipation
I’ll try to make this short I got you in 2013 with something like vertigo and by January 2014 had the worst sore throat of my life do you have Dr. did in the scope and said I had esophagitis Candidus So I was given fluconozole
For 10 days and it did not knock out the sore throat the same day I was diagnosed with candida
My family doctor called and said I had a bad UTI and gave me 10 days of Cipro So I was taking drugs at the same time Sore throat never left and so G.I. doctor gave me 20 more days of the fluconozole. Still have a sore throat could not eat got down from 136 pounds and I weigh 2013 to 99 pounds So they put me in the hospital and put a prg tube in but did not work
So I just tried to eat and events like the doctor took the peg tube out because I gained a few pounds by just trying to eat. Two weeks after being in the hospital and getting the peg tube I had facial spasms and seizures
Went to the ER three times and the doctors knew what it was and said they never saw anything like it
So here it is 2018 and I’m still not feeling well and have neck problems and stiff Throat muscles and horse voice
Anyway I just did the Sibo test again
Waiting the result. I did take the rifaximin and it seem to help but then the SIBO Constipation returned
Anyway my point is I’m wondering if the peg tube they inserted had done something to my stomach and the scar tissue is causing my issues I keep mentioning it to the G.I. doctors I’ve seen and I think I’m crazy
Or if maybe it’s affected my Vegas nerve and causing my very slow motility

Jump to this post

Rifaximin alone will not treat methane SIBO. It usually requires neomycin along with it, which has risks. But since you also have yeast issues (probably Candida along with SIBO which isn't uncommon) you might want to go the natural route for treatment. Antibiotics will only make yeast issues worse. You could see a naturopathic doctor who specializes in SIBO. I am seeing one for my chronic SIBO. It used to be hydrogen SIBO for years but now is methane. I also have yeast issues. My naturopathic doctor is having be try Candida SAP yeast formula by NFH. She said it can treat SIBO and Candida. There is a lost of other herbal antibiotics treatments for SIBO on siboinfo.com. The problem with SIBO though is that it will keep coming back if there is an underlying motility issue. I tried LDN (low dose naltrexone) multiple times but I can't tolerate it at all. To prevent relapse, they say it's best to take a prokinetic like LDN after treating SIBO to help it stay away. Ginger helps GI motility. I am taking it 30 mins after meals and before bed. I am really struggling with my GI motility still though. I have autonomic dysfunction and EDS. I am getting checked for Chiari again soon. My SIBO keeps coming back and back. I will see if this new natural treatment for a month helps.

Also, if you get a UTI again you should CIPRO and similar antibiotics if possible. CIPRO can cause permanent problems and had lots of risks for connective tissue. Things like tendon rupture and even spinal fluid leaks have been caused by CIPRO. I also have a chronic spinal fluid leak and many people I have talked to said their leak started after ciprofloxacin. Macro is best for a UTI if it is sensitive to it. It only effects the bladder, it's not a wide spectrum antibiotic. Many doctors will just treat with SIBO now instead of doing a urine culture to see what the bacteria is sensitive to. There are new FDA warnings that doctors are supposed to only use cipro as a last resort but most doctors don't know any better. My health went down hill after multiple rounds of Cipro. I have never felt the same since.

REPLY
12061948 | @12061948 | Aug 26, 2018
In reply to @12061948 "I was diagnosed with SIBO. HIGH METHANE LEVELS. CHRONIC constipation I’ll try to make this short..." + (show)
@12061948

I was diagnosed with SIBO. HIGH METHANE LEVELS. CHRONIC constipation
I’ll try to make this short I got you in 2013 with something like vertigo and by January 2014 had the worst sore throat of my life do you have Dr. did in the scope and said I had esophagitis Candidus So I was given fluconozole
For 10 days and it did not knock out the sore throat the same day I was diagnosed with candida
My family doctor called and said I had a bad UTI and gave me 10 days of Cipro So I was taking drugs at the same time Sore throat never left and so G.I. doctor gave me 20 more days of the fluconozole. Still have a sore throat could not eat got down from 136 pounds and I weigh 2013 to 99 pounds So they put me in the hospital and put a prg tube in but did not work
So I just tried to eat and events like the doctor took the peg tube out because I gained a few pounds by just trying to eat. Two weeks after being in the hospital and getting the peg tube I had facial spasms and seizures
Went to the ER three times and the doctors knew what it was and said they never saw anything like it
So here it is 2018 and I’m still not feeling well and have neck problems and stiff Throat muscles and horse voice
Anyway I just did the Sibo test again
Waiting the result. I did take the rifaximin and it seem to help but then the SIBO Constipation returned
Anyway my point is I’m wondering if the peg tube they inserted had done something to my stomach and the scar tissue is causing my issues I keep mentioning it to the G.I. doctors I’ve seen and I think I’m crazy
Or if maybe it’s affected my Vegas nerve and causing my very slow motility

Jump to this post

Thank you for your reply. I reread mine I had some mistakes in it but I think I got my thoughts over. It’s just miserable after the cipro.
I had it again in IV. In April When they were prepping me for the peg tube. They had to take it out right away. I got I’ll in mins. My arm had red streaks and hives come up. I guess that second exposure to. cipro started a cascade of health issues. Then some months later I had sinus infection the dr prescribed fluconozole and cipro
Nasal sprays. Used it 3 days. And them I started
Having body tremors. Did not know anything aboout the side effects of cipro until
Months later. My daughter did the research.
I do have chronic pain. Spine neck etc.
my chronic hives are finally getting better.
They started in Jan 2015.
Food sensitivities etc. are still bad.
chronic constipation. Rectal pain. Etc.
So we will see what my new tests show. My dr is a DO and functional. So she had broad view about health issues. It’s just I’m so sensitive to all things now. Even Supplements.
So thank you for responding
Just wondering if anyone has tried the new
Alantral it’s an herbal by a dr Brown In Plano Texas. For Methane type SIBO. He’s a GI DR.
Also another thing. I had saved a note i wrote in 2002
Not to ever take levaquin again. I broke out in horrible hives. I had been given it for a sinus infection. If I had only known cipro was related
To the levaquin I’d never taken it. I did not take anymore antibiotics after that until Feb 2014.
I just dealt with sinus issues naturally after that.

REPLY
12061948 | @12061948 | Aug 26, 2018
In reply to @12061948 "I was diagnosed with SIBO. HIGH METHANE LEVELS. CHRONIC constipation I’ll try to make this short..." + (show)
@12061948

I was diagnosed with SIBO. HIGH METHANE LEVELS. CHRONIC constipation
I’ll try to make this short I got you in 2013 with something like vertigo and by January 2014 had the worst sore throat of my life do you have Dr. did in the scope and said I had esophagitis Candidus So I was given fluconozole
For 10 days and it did not knock out the sore throat the same day I was diagnosed with candida
My family doctor called and said I had a bad UTI and gave me 10 days of Cipro So I was taking drugs at the same time Sore throat never left and so G.I. doctor gave me 20 more days of the fluconozole. Still have a sore throat could not eat got down from 136 pounds and I weigh 2013 to 99 pounds So they put me in the hospital and put a prg tube in but did not work
So I just tried to eat and events like the doctor took the peg tube out because I gained a few pounds by just trying to eat. Two weeks after being in the hospital and getting the peg tube I had facial spasms and seizures
Went to the ER three times and the doctors knew what it was and said they never saw anything like it
So here it is 2018 and I’m still not feeling well and have neck problems and stiff Throat muscles and horse voice
Anyway I just did the Sibo test again
Waiting the result. I did take the rifaximin and it seem to help but then the SIBO Constipation returned
Anyway my point is I’m wondering if the peg tube they inserted had done something to my stomach and the scar tissue is causing my issues I keep mentioning it to the G.I. doctors I’ve seen and I think I’m crazy
Or if maybe it’s affected my Vegas nerve and causing my very slow motility

Jump to this post

You said spinal fluid leak. ??
Maybe that’s why I had spinal tap few weeks ago. I had reaction the next morning. I could only hear vibration in voices etc. the dr who did it said he never in 20 years had this happen to anyone my age. I’ve not said my age. 69.
They said it could cause spinal leakage but never seen it in anyone but younger patients
I had terrible reaction. Jibberimg when I stood up. Pain. Put me In hospital for one day. But thank God that got better. Didn’t need another
Body part breaking down.
Before I got the vertigo in end of 2013 I was very healthy never went to dr except wellness Checkups. Never had hot flashes menopause symptoms etc. mowed my huge 2 acre yard
Worked. Etc. Had a very wonderful life. Now all I have is tremors and pain etc. by the way the reason I had spinal tap was because Neuroligist had said I have Tardive dyskinesia. He was the 4th one I’ve seen. He wanted to rule out
A viral bacteria etc in spinal fluids causing my side effects. Now I read cipro can cause Tardive dyskinesia. Especially women. Older than 60.
So does Mayo Clinic review these comments
Have any opinions about what it commented on.

REPLY
angelaguptill | @angelaguptill | Oct 3, 2018

I had the same symptoms . My awesome GI put me on the Low FODMAP diet and I tested + for SEBO so went on Refaximin. Just starting another round of Refaximin after doing great for almost two years. For more info and APP for low fodmap diet go toMonash University web site. The low fodmap diet SAVED MY LIFE as I was slowly starving to death. We were terrified and the doctors were coming up with nothing until I got to see my new GI. RD Kate Scarletta has a great web site that is a life saver too. All the best.

REPLY
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