Mayo Clinic Connect
I’ve been battle SIBO for months now and have tried Rifaxin, Flagyl and antiviral meds. Also have tried Zithromax and am taking Atrantil (an herbal remedy). I can’t eat sugar or carbs or my stomach hurts quite alot. Any suggestions?
I started getting sick 4 years ago at 53 years old. I started having diarrhea, dyspepsia, sour taste in my mouth and I had rapid wt loss of 30 pound over 3-4 mos. I was not trying but having so much diarrhea etc couldn't eat. Stress was moderate normal and I had taken antibiotic month or so before symptoms. I was diagnosed with peripheral neuropathy unknown cause the year before. No diabetics, no health problem except overwrite since kids born. Since this began my symptoms have worsened to include severe abdominal pain,
face flushing flush and heart pounding(usually with eating or diarrhea) and some reflux symptoms, I have also found that I have low Igg immunity. I have had full GI workup, Ct scan Mri etc. Only positive findings are 2 breath tests positive for sibo.
I have take xifaxin antibiotic 6 times over 4 years base on 2 tests and return of symptoms, I am wondering if I could have an underlying motility disorder as my esphogeal manometry showed hypercontractile esophagus ang gsstric empying stud showed rapid gastric emptying. Can/ would Mayo dr help me? I can't stay on antibiotics forever. Also in the past year I now have diverticulosis and a hiatal hernia eventhogh I am much thinner and hardly eat
Jump to this post
That is certainly reasonable! I assume that you are not an AZ resident? I guess the real consideration would be how much $$ would be involved if there ended up to be numerous costly tests and procedures. Thanks!
Yes, I am not an Arizona resident. I had many blood tests run and really don’t remember any extra costs, so if there were some, they must have been minimal. I was concerned about that as well.
I called the Phoenix clinic today. Basically, they told me that because of the high demand for care in certain specialties (e.g gastroenterology) they are now not accepting anyone at all on a government health care program—that is anyone on Medicare (even with supplementary insurance) or Medicaid. So I guess that ends my quest for care at Mayo.
Wow, I am sorry to hear that!
Yes, in Phoenix. I don't know anything about out of state insurance stuff. I am glad that my insurance was in network. I feel very lucky to have gotten in, especially with my current situation. Although that came as a result of going to the ER and having to be admitted. Surgeons came to me, and even though the main one I saw is a general surgeon, he is working under a colo rectal Surgeon who also saw me and was in the operating room. My last 3 surgeries this past year were at a different hospital and just a general surgeon, not a specialist. While I really liked this surgeon, I just felt better going forward to being treated by somebody who specializes in the bowel.
Just thinking about you and wondering how you are feeling these days. I hope your recovery is still going well.
I am feeling pretty good, trying to work some(I am a realtor). I have been able to get out and show some houses etc. I have my follow up appointment with the surgeon 1/31. Everything seems to be going ok except my appetite is still not that great so keeping weight on is a challenge. The solid food seems to be hanging around in my stomach for quite a while and making me feel full. I wonder if being on liquids for so long made it go into shock or something!
Liked by Teresa, Volunteer Mentor
@thull I understand.
I've had three surgeries of the upper digestive tract and I still feel full very easily and solid food does stay around for a while.
I hope your surgeon provides you with some good information at your next appointment!
Liked by thull
If you would like to make an appointment at Mayo Clinic, you can call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments
Appointment coordinators will ask questions to help direct you to the best specialist.
Might I suggest you also call Mayo Clinic's Patient Account Services at 800-660-4582
For further information check out this resource about billing and insurance from Mayo Clinic: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
I also encourage you to view this discussion, https://connect.mayoclinic.org/discussion/xifaxan/ where @astaingegerdm @kltchrmn @contentandwell @drpepper @guthealth have shared their insights about Xifaxan.
Started taking Nexium, zantac, antacids, etc when belching started. When SIBO diagnosed, should you continue these products or eliminate as they should cut down on digestive acid which helps eliminate bacteria?
Liked by Kanaaz Pereira, Connect Moderator
Update: picked up script for Rifaxam ($700 for 30 pills 200mg). Decided to read a bit more before starting the antibiotic. On Atrantil website read that one should not take probiotics while trying to treat SIBO. My ileocecal valve was removed during a sm bowel resection in '99. Started having belching in 2015. Reflecting on my past medical history it was about that time I started probiotics that I started having belching problems. I started (dr recommend) more serious probiotics and belching got worse. Doctor after doctor and suggestion after suggestion e.g. – remove gall bladder, stop cpap use, repair hiatal hernia, and on and on… The site (Atrantil) said taking probiotics was like adding fire to fire. So I delayed the antibiotic treatment and stopped all probiotics. Within 2 days my insane belching was diminished by over 50 % and at this point close to 75 %. I have the Rifaxam on standby but right now I am feeling better than I have in years!..
Liked by JK, Alumna Mentor
I have been all over this forum after doctors told me I had this or that. I was starting to think I was crazy. Then one of my tests showed gastroparesis. Now my new gastro from down state has ruled out everything but now she has zeroed in on SIBO as well as BAM.
Between these two things my symptom list is long. One of my more annoying symptoms is this dang inner vibration that seems to be my stomach not working properly. My hair falls out, I have burning diarrhea then constipation. The Vagus nerve gets irritated setting off anxiety. Weird sweating episodes, light headedness, wright loss, dry skin. Insomnia and incredible fatigue. Low b12, low vitamin D. However they can't figure out my high calcium.
It has been absolutely awful. Doc should be prescribing antibiotics this coming week.
@bumble81, I'm so glad that you and your doctor finally got things figured out as you said, and that you have a diagnosis of SIBO that is possible causing bile acid malabsorption (BAM).
You'll notice that I moved your message to this existing discussion group called "Small intestinal bacterial overgrowth (SIBO)" I did this so you can connect with others like @astaingegerdm @sita @jackiem95 @thull and others. Click VIEW & REPLY to read through past posts.
@bumble81, you mentioned that you'll be prescribed antibiotics. When will you start and for how long? Did your doctor talk to you about pro-biotics?
I decided to join this discussion as it appears that I am now in what I call the SIBO limbo or no man’s land. From reading these posts it seems like my struggle has just begun. My symptoms began in mid July and it is believed that two consecutive rounds of antibiotics to treat two different conditions triggered it. I cracked a crown in late May and ended up with an extraction and implant. I took an antibiotic then but can’t remember what it was. Then I went for my annual physical in late June and was prescribed Clindimycin for a UTI. Symptoms of diarrhea, gas and bloating started about a week after I finished the Clindimycin. Long story short, my internist thought I had contracted CDiff from the Clindimycin and put me on Flagyl for ten days and performed a stool test which came back negative. The Flagyl helped for a week but then the symptoms restarted. My internist basically dismissed me at that point and told me to find a GI doctor, which took a few weeks and lots of phone calls. The GI doctor performed some routine blood work which was normal, and sent me for a CT scan of my belly, which fortunately also came back normal. He diagnosed me with SIBO and dysbiosis based on my symptoms (no breath test) and put me on another round of Flagyl. The cost of the Xifaxan would have been nearly $1500.00 for two weeks. So I took the Flagyl again since I tolerated it the first time. It helped for about two weeks and I then gradually slid back to the loose stools and lots of gas. He also put me on a low FODMAP diet, which helps a little but does not eliminate symptoms either. I have lost 15 pounds in three months due to diarrhea and being afraid to eat anything. I had a routine colonoscopy last year which was normal and I think that is why the gastro doctor is not in a rush to do another one (plus the normal CT scan). So here I am. I am not on medication right now, not eating much, afraid to eat anything. I am not even sure I have the correct diagnosis, but too many carbs make me gassier and when I am gassier I also tend to have looser stools. I go to work but rarely socialize with friends because it all revolves around food. Thankfully I am married and my husband has been very supportive. I cry a lot and have dark moments when I think I have cancer or will never be well again. I am afraid of what the gastro doctor will say when I see him next or that he will tell me there is nothing else he can do for me like my internist who basically abandoned me. How long have other group members been coping with this and what has helped? I am now researching a diet called the specific carbohydrate diet. Anyway, feeling desperate and looking for solutions like all of you. Thank you for “listening.” I hope I can also be of support to others here.
I found a technology from Ireland that has been a life changer in drilling down into what my specific food offenders are http://www.FoodMarble.com 40 million Americans have some form of this,you did a beautiful job describing the disease and lack of solutions. Also a new company that provides meal(very tasty) for us people is modify health.com
Best of luck
Anyone else tried this food marble thing, and how did it work for you ?
version 22.214.171.124.3.2Page loaded in 1.161 seconds