Sibo treatment Rifaxamin and Neomycin

Just diagnosed with SIBO and my PCD recommended Rifaximin. I am scared it will kill all good bacteria in my gut. But also SIBO might be compromising nutrients absortion (especially Calcium). Anyone with experience with Rifaximin? How long to restore normal good bacteria levels after this antibiotic?

I have permanent SIBO as the result of removal of my ileocecal valve. Before my diagnosis - and before taking rifaximin - I had malabsorption issues and started a gluten and lactose free diet. After my SIBO diagnosis, I was prescribed rifaximin, taking it every other month for just over two years. I take a calcium supplement every day, as well as iron and vitamin D, and get a B-12 shot once a month. I no longer take rifaximin because it doesn’t seem to reduce my SIBO symptoms any longer. I stick to my diet - high protein, no beans or legumes or cruciferous vegetables, very little fruit or leafy greens - and take my supplements and do my best to treat the symptoms when I have a SIBO flare. The only “cure” for my SIBO is reconstruction of my ileocecal valve which I’m looking into.

I have SIBO and am now on an anti-biotic. I couldn't tolerate the xifaxan. I never knew one could have permanent SIBO. You seem to be doing everything right regarding your diet. Good for you. also am gluten and lactose free. When you say you have a flare up, do you mean nausea or stomach pain? Best wishes if you go forward with the reconstruction.

@bapetersen wondering what happened that resulted in no IC valve for you? I also no longer have one due to a cecal volvulous almost 5 years ago. I have been treated multiple times for SIBO with rifaximin and now am on a maintenance dose of 550 mg twice daily. Insurance coverage is a problem of course, and I am waiting for a 50 day supply to be shipped via a Canadian pharmacy. They are backed up, though, and it's taking longer than usual :(. It amazes me that GI professionals know so little about dietary recommendations. They teend to gravitate towards low FODMAP, but tell you not to follow it indefinitely. I have tried a few herbal remedies to treat SIBO in the past with variable results. Abdominal pain, gas, and fluctuations between constipation/diarrhea are my most challenging symptoms to manaage. I use a TENS unit, simethicone and/or activated charcoal caps, and a variety of laxatives, respectively. I am trying to find the right dose of cholestyramine for suspected BAD (bile acid diarrhea), but it fluxuates so much. Definitely a chronic, lifelong, and difficult condition to manage. It helps some to know we are not alone!

@jlstjohn
It does help, and I’ve learned a lot from friends struggling with this same, difficult condition. I was diagnosed with FAP, a genetic disease that increases the risk of developing all sorts of cancers. Most importantly, tho use with FAP have a 100% chance of developing colon cancer, so I had a sub-total colectomy in 2007. (There’s no cure for FAP, but having my 99% of my colon removed makes it far easier to monitor for polyps.) Although my ileocecal valve was removed during the surgery, I didn’t develop SIBO until 5 - 6 years after the surgery. I took rifaximin monthly for many years (also relying on the Canadian pharmacy!) but over time it became less effective. I tried the low FODMAPS diet which I found difficult and ultimately not helpful. I now follow a SIBO diet I found on the Cedars Sinai website that I’ve modified over time - high protein, low carbs, gluten and lactose free, no added sugar. I still get SIBO flares, however, and this past summer has been particularly difficult. A doctor prescribed metoclopramide to deal with low motility issues but the side effects are pretty scary so I haven’t taken it. I’ve read that oil of oregano can help, so that’s next on my list to try. Currently I take a small dose - 25 mg - of amitriptyline (recommended by a friend with chronic SIBO), l-glutamine, and berberine. And because of malabsorption issues, I get a monthly B-12 shot and take iron, calcium and D-3 supplements. I’ll report back on the oregano!

@jlstjohn
You are not alone! There are tons of people on the Facebook SIBO support group.
I’ve been dealing with this since 2021.
It’s pretty frustrating.

@bapetersen
I had my ileocecal valve along with all but 18" of small bowel (still have all my colin) removed in 1993 due to a blood clot. Well, as you can imagine, no one hardly knew anything how to deal with this, I was on TPN for 5 years. I finally found a great clinic, The Nutritional Restart Center, that helped me learn how to eat and heal etc. BUT no one really knew about SIBO and a lot of other side effects like kidney stones. Now, I'm 70 and was just tested for SIBO... Surprise! I have it. Thinking about it, I've probably had it for YEARS. I went through a course of antibiotics Metronidazole and Cehalexin 3 times a day for 2 weeks, which I thought was going to kill me with terrible side effects, so I had to stop one week in. I think maybe the diet I've been on (close to the Zoom diet) has kept it check, but I know I've had flares plus the odd symptoms like brain fog and anxiety and never knew what was causing them.
Now, just started looking into herbal products and diet suggestions. So disappointing when I realized this was actually chronic.
You are not alone, I know so well what that feels like!

Following Breath testing, I was DX with Methane levels double the normal. Started Rifaxamin 8 days ago with a strict dietary plan. It is working somewhat but not as well as my doctor expected. Yesterday together with caution we added Neomycin 500mg twice a day. You must radically alter your diet to get success and be vigilant about the change. It's tough to do because of flimsy US food labeling. So you must do as much home cooking of fresh food as possible!! I can't say that enough. I'm having much better results only this way. I'll be happy to share my diet success with anyone out there. It is complicated but it works and it takes individual allergies, sensitivities into consideration because everyone's chemistry is different. It's helpful to monitor what you are eating at every meal so I use the free online app My Fitness Pal, recommended by my dietician. The app is easy to use, allows you to set personal goals for weight, water intake, exercise, and each element of food intake (calories, carbs, protein, fat, sugar, fiber, sodium). It's become my guide for this strict diet change for SIBO treatment. I'm not there yet, so it's a work in progress, but I am more hopeful than I was before. I've been dealing with this chronic life-changing disease since 2019, lost 20+ pounds that year, can't get my weight up to 100lbs yet, but the research is starting to improve and there is new info to help us each year. In the past 3 months, I've endured 5 different GI tests that have finally determined my underlying problem- SIBO! For years I was told I had IBS-C and IBS-D mix. That was false due to a lack of medical knowledge. Now the medical community is indicating that SIBO is underdiagnosed. Hang in there. Happy to share my successes and challenges if you ask.

Was the Fodmap diet recommended?

@seabright2001
Hi.. thank you for asking. The Fodmap diet is not completely appropriate for SIBO but it is a guide. Basically the guidelines for me are gluten-free, dairy-free, low fat, low fiber, low sugar, and very limited for sugars both natural and artificial, of many kinds. I cannot tolerate glucose syrup, high fructose corn syrup, fructose, complex sugars. So that eliminates apples, pears, ripe bananas, mango, melons, peaches, avocado, dates, raisins, sweet potatoes, figs, beets or any other fruits or vegetables that produce methane (like chickpeas) when digested in the small intestine. I can eat small portions of berries (blueberries, raspberries, strawberries, pineapple, all citrus, kiwi, only cooked carrots, zucchini, green beans, parsnips, spinach, kale, chard, bok choy, rice, quinoa, oats, GF oatmeal, eggs, fish, 93% lean beef, pork tenderloin, chicken or turkey breast, non-dairy, low sugar yogurt, Whole Foods sourdough bread, nuts, nut butters that are sugar free. It's complicated but experimenting for each person is key to finding what works for you. Snacks are challenging!! I bake my own muffins with yogurt, banana, berries, and walnuts. Snack bars brands that are decent to buy are Aloha, GoMacro, and Lara. I like Skinny Pop for a snack. It's recommended to cook with olive oil mainly because of its purity and heart health benefits.