I have been working on getting rid of SIBO for nearly two years now, and I’ve progressed and regressed many times. The whole thing is quite frustrating, and it can be difficult to maintain a positive outlook and have hope that I will be healthy again one day. I have attempted many treatments and spent a lot of time researching treatments. I figure all of my effort should be put to use somehow, so I have decided to share the details of my treatments as widely as possible. Perhaps my story will provide useful information to a healthcare practitioner or researcher. At the very least, I hope that others who are dealing with SIBO will benefit from reading my story. Remember, everyone is different, and if you have SIBO, your story will likely be different from mine. Nevertheless, sharing helps.
Please keep in mind, SIBO occurs in the gut, so I will be talking frankly about things that go on in and come out of the gut.
I have to catch you up on a couple of years, so this post is a long one! Here it goes…
Treatment 1 – Traditional Broad-Spectrum Antibiotics
The doctor who diagnosed me first prescribed a 14-day course of alternating ciprofloxacin (Cipro) and metronidazole (Flagyl). I no longer recall the strength of each dose, but I took Cipro one day and Flagyl the next for 14 days. On my first day of Cipro, I got a headache and felt very fatigued. I was nervous about the black box warning on the Cipro label. Rupture of the Achilles tendon is all too close to the plantar fasciitis problem I already had. I decided to lie low for the course of antibiotics and avoid putting strain on my muscles and tendons.
During the two-week course of antibiotics, my bloating was reduced by about half, and I experienced a big improvement in ease of urination. With all the bloating and pressure in my abdomen, I was also having urination problems. I had to go often, and the stream was slow and thin. During the course of these antibiotics, urination became normal again. Then, right at the end, I felt like the clouds in my brain had parted, and I could see and think clearly again. I was excited! Maybe this was working!
I did experience side effects on this treatment. Unfortunately I seemed to be allergic to at least one of the antibiotics, though it was hard to know which one since I was taking two of them. I broke out in an itchy, stingy rash on my torso, legs, and feet. The stinging on the bottoms of my feet would wake me up at night, and I could see the raised pink spots on my feet. I pushed through for about 10 days before I called the doctor, and she told me to stop the Cipro and finish the Flagyl, which I did. This allergic reaction did not disappear until a few days after I finished the Flagyl, so I could have been allergic to the Flagyl after all.
The other problem was that I seemed to be more constipated than before the antibiotics. This was a typical response for my body to antibiotics. During and after the antibiotics, things seemed to just dry up (yes, I did say that I will be talking frankly about poop – it’s important!). After about five days, I gave in and took some milk of magnesia. It took two doses over two days to get things moving, but when they did, it felt like I had awakened the SIBO monster! My belly blew up, and the aches and pains of gas trapped in my small intestine returned. Back to the days of waking up at 3 am feeling like I have an animal fighting to get out of my gut. Before I knew about SIBO, this feeling was TERRIFYING!
I had educated myself on SIBO, and so I decided to follow up the antibiotics with the introductory phase of the Specific Carbohydrate Diet (based on Elaine Gottschall’s book called Breaking the Viscous Cycle.) Starving the bacteria after bombing them made sense to me. I cooked up some chicken soup and beef burgers and ate only that along with grape juice (an easily absorbable source of glucose for energy) for the first 4-5 days after the antibiotics. I felt a bit dizzy and sluggish, like I needed more carbs, but I was bent on starving those bastards! I introduced carrots and spinach, and slowly expanded my diet but only ate low FODMAP foods that are also allowed by the Specific Carbohydrate Diet (generally, foods that are less effective at feeding gut bacteria).
After a few months on this diet, I dropped about 15 pounds, weight that I did not need to lose. I felt like a bag of bones with a giant, swollen belly in the middle. I would see stars and nearly black out when standing up after bending over. It was hard for me to get myself out of chairs. I was out of breath going up steps. Bloodwork showed that I had low T3 (one of the thyroid hormones, the more active hormone), and my doctor said that I was not converting T4 to T3.
I turned to Google again, and after some research learned that if you eat a very low carbohydrate diet, your body stops converting T4 to T3 to save on energy. While I don’t know for sure if this was the reason for my fatigue and lightheadedness, I chose to follow the advice from Dr. Siebecker’s SIBO Diet and added white rice back into my diet. She recommended white rice for those in danger of being underweight. I also figured that since my stool test showed that I was not absorbing fats properly, I may not have been able to get adequate energy from the fats, and therefore I needed more carbs. It took at least two to three months of eating white rice before I returned to normal, or at least my pre-diet normal. I don’t regret trying the strictest form of the diet. I want to get rid of SIBO and get my life back, and I’m willing to try all the reasonable approaches. However, I learned just how much a restricted diet can affect the functions of the body, especially when the body is not in a healthy state.
Treatment 2 – FC-Cidal and Dysbiocide
I came across some published research that showed certain herbal antibiotic treatments to be as effective as the leading pharmaceutical antibiotic for SIBO (rifaximin) (see publication here). With the approval of my doctor, I decided to give one of those treatments a try. I chose FC-Cidal and Dysbiocide. I took the dosage used by the researchers for four weeks. At this point, I was so bloated so high up in my intestines that I had trouble swallowing the capsules. My husband seemed to think I had some kind of mental hang-up with swallowing pills, but now that I have made some progress reducing the gases in the upper portion of my small intestine, I no longer have so much trouble swallowing pills! It really is incredible what gases in the small intestine can do to the body. Unfortunately, at the end of four weeks, there was no improvement.
Treatment 3 – Allimed and Neem Plus
By this point, I had joined the SIBO Discussion Group on Facebook and watched the entirety of the 2015 SIBO Symposium at the National University of Natural Medicine (NUNM) via webinar. I had learned all the latest information on the causes of SIBO and effective treatments. On the Facebook group someone had posted some of the latest herbal treatments used at the SIBO Center located at NUNM. This one (Allimed and Neem Plus) had a little note below it that said the SIBO Center doctors “claim it will drop methane by 40-50 ppm in 20-30 days.” Clearly this was the treatment I had to try next!
This was the first treatment that seemed to start reducing my upper gastrointestinal symptoms, including the belching, difficulty swallowing pills, and feeling full after my first bite of food. However, I was yet again more constipated than before I started the treatment. It’s a catch-22. Methane slows transit and causes constipation, and killing my gut flora with antibiotics and antimicrobial herbs seems to cause constipation!
Unfortunately I did not do a follow-up lactulose breath test after any of the above treatments, so I have no objective way of measuring the results of these treatments. I just knew based on my symptoms that I was not yet better.
I finished this treatment in August of 2015 and then waited all the way until December for my trip to Portland, Oregon to see Dr. Steven Sandberg-Lewis at the SIBO Center in the NUNM Clinic before trying any other treatments. All that time allowed the bacteria to multiply again, and my next lactulose breath test in January 2016 peaked at 112 ppm of methane!!
Treatment 4 – SIBO Center’s Latest Herbal Protocol
My husband and I made a quick trip to Portland in December of 2015 so that I could see Dr. Sandberg-Lewis at the SIBO Center at the National University of Natural Medicine (NUNM). Dr. Sandberg-Lewis gave me a couple of options to try next. Since rifaximin (the pharmaceutical antibiotic most widely used to treat SIBO) was out of my price range (~$1,500 for a two-week course unless you are lucky enough to have insurance that will cover it), I opted for the herbal protocol. This protocol included Allimed, Neem Plus, ADP (a brand of oregano oil), and berberine. I also took NAC (N-Acetyl Cysteine), which has been studied as a biofilm disrupter (bacteria produce what are known as “biofilms” to protect themselves, and antibiotics may not always work because bacteria are protected in these biofilms). Dr. Sandberg-Lewis recommended some other supplements as well, so I ended up popping a LOT of pills for a couple of months. This was the first treatment that started significantly reducing my bloating and relieved my methane-induced constipation.
Based on my symptoms, I knew that I was not SIBO-free. I was consulting with Dr. Sandberg-Lewis during his mentor shift (working with his students) by phone after my initial in-person visit in Portland. He and his students suggested I try the elemental diet next.
Treatment 5 – Elemental Diet
In April of 2016, one year after I was diagnosed with SIBO, I took on the most challenging and one of the most effective treatments for SIBO: the elemental diet. Imagine drinking what a patient on life-support might be given through an IV to keep them alive. This sums up the elemental diet. The idea is to feed the body the most basic elements it needs that can be absorbed readily by the small intestine while starving the bacteria. Bacteria help us break down a lot of our food, but if we feed ourselves food that has already been broken down into the essential components, the bacteria will starve, and our bodies will be fed.
I chose the homemade version of the elemental diet, both because it is cheaper, and because I could choose the source of the ingredients. I followed Dr. Allison Siebecker’s recipe for the homemade elemental diet. Dr. Sandberg-Lewis recommended that I also include one serving of meat each day.
On Day One I attempted to blend all the ingredients together for breakfast. I chose to follow the high fat version, since I figured I was eating a higher fat and lower carbohydrate diet already while following the SIBO diet. I dumped water, two tablespoons of the terribly stinky amino acids, five tablespoons of dextrose, and three tablespoons of coconut oil along with some salt into my blender and mixed. As you probably know, water and oil don’t mix. I have no idea how others are making shakes out of this stuff, but I wound up with water mixed with some of the amino acids and dextrose, and a layer of whipped topping that included coconut oil mixed with amino acids and dextrose. I took a few sips. At first I tasted the warm coconut flavor and the sweetness of the dextrose and thought it wasn’t too bad. Then I had to eat a spoonful of the whipped topping. I gagged! The sulfur-smelling amino acids had gotten stuck in the coconut oil and turned it into a nasty experience. About an hour later, I threw up!
After consulting my “SIBO friends” on the SIBO Discussion Group on Facebook, I ditched the blended drink idea and “ate” the ingredients separately. I stirred the amino acids with a couple tablespoons of the dextrose and some sea salt into water and drank it down quickly through a straw. Still disgusting!! However, I could get it down faster and then immediately eat a teaspoon of honey with sea salt sprinkled on top to erase the taste of the amino acids. Honey is another option for carbohydrates in the homemade elemental diet recipe. I was concerned about the fructose content of the honey, so I mostly used dextrose and just ate a teaspoon of honey to mask the taste of the amino acids. I then poured a few tablespoons of olive oil into a cup and sprinkled some sea salt on top and ate that with a spoon. I followed all this up with a cup of dextrose tea (dextrose mixed with hot water).
I continued with this method and counted calories from the dextrose and oil to ensure that I got enough calories to survive. However, it was very hard for me to drink enough dextrose tea to get the energy I needed, because it was so sickeningly sweet. I also learned the hard way that my body could not absorb much of the oil (I began to have diarrhea multiple times per day). I was weak and hungry, and I felt like I had the flu the entire time. I was extremely bloated, I was constantly belching, and my stomach was burning. I looked forward to my one serving of meat each night, something satisfying to chew on, but I often didn’t feel so well afterward.
I made it to Day 17 (I was shooting for three weeks), and after consulting with the doctor about the violent acid reflux I was experiencing on a daily basis, the doctor recommended that I stop and start introducing some soft cooked vegetables. That helped. A few days after eating real food again, the acid reflux calmed down.
I noticed a difference after this treatment. Eating felt a little more normal. Instead of feeling like my stomach blew up after a couple of bites, the bloating came later and not as much. I decided to do another lactulose breath test after this treatment, and my methane peaked at 55 ppm, down from 112 ppm.
Treatment 6 – Atrantil
Since I still had an overgrowth of bacteria in my small intestine, I needed to keep treating or it would just multiply – something bacteria do well – and I would be right back to where I started. This time my doctor suggested I try a new herbal concoction developed by a gastroenterologist out of Texas specifically for the methane-type SIBO called Atrantil. I ordered a couple of bottles and took two capsules three times per day for 20 days. After that I was supposed to take one capsule three times per day for a month.
During the first 20 days, I became even more bloated than usual. This could be a symptom of die-off (a worsening of symptoms as the bacteria die). However, I experienced no improvements by Day 20, so I chose to start another round (one month) of the “SIBO Center Herbal Protocol” (Allimed, ADP, Neem Plus, and berberine), which I knew at least reduced the bloating.
Although I felt like my digestive symptoms had improved since I was first diagnosed with SIBO, a follow-up lactulose breath test in June 2016 showed that my methane peaked at 91 ppm, up from the 55 ppm after the elemental diet. That was very disappointing.
Treatment 7 – Elemental Diet – Round 2
After a couple of months of other life distractions that I will save for another story at another time, I attempted another round of the elemental diet for two weeks in late August/early September of 2016. I was expecting a repeat of my experience during Round 1 of the elemental diet, so I chose to limit the diet to two weeks. This time Michael and I had started our travels, so I had to choose a good spot to park our travel trailer and hang out for two weeks. You can read my story on Round 2 of the elemental diet while traveling here.
Since we were traveling near Portland, Oregon, I made an in-person appointment with my doctor after the elemental diet. He gave me a “spot breath test,” meaning a baseline reading of my methane levels without the lactulose solution. Although not completely comparable to my other tests, we could at least find out whether I was still producing methane and generally whether it was low or high. This breath test came out at 32 ppm. That means I probably reduced the bacteria load since the last breath test, but I hadn’t progressed all that much since Round 1 of the elemental diet. It was time to try the pharmaceuticals.
Treatment 8 – Rifaximin and Neomycin
I finally managed to get my hands on two weeks worth of rifaximin, a very expensive antibiotic that works especially well for SIBO. Rifaximin stays in the gut unlike many other antibiotics that get absorbed into the bloodstream and kill flora throughout the body. Rifaximin has also been found to have a much lower risk of causing antibiotic-resistant infections than other antibiotics. These two characteristics make it a great choice for tackling bacterial overgrowth in the small intestine. Unfortunately the methanogens are not affected by rifaximin, but for some reason when it is combined with an older antibiotic called neomycin (which also stays mostly in the gut), the combo is effective at killing methanogens.
I had not yet tried this treatment for two reasons. The first is that rifaximin is crazy expensive. The second is that I have heard stories about irreversible side effects from neomycin, such as permanent ringing in the ears or hearing loss. I figured I would save myself some money and try to get rid of SIBO with more natural treatments that have fewer side effects. However, after a year and a half of treatments, when I finally managed to get rifaximin at a reasonable price, I decided it was time to take the risk and try it.
I had learned from the 2015 SIBO Symposium that these antibiotics work best when the bacteria are actively metabolizing rather than when they are dormant and protecting themselves. That means feeding them their favorite foods makes the antibiotics more effective. I fully embraced this recommendation and enjoyed foods that had been off my list for a year and a half. I started with a pizza the night before my first day of antibiotics. I also enjoyed some healthier foods that I have not been able to eat for a long time like oatmeal, onions, and garlic.
Feeding and killing made me extremely bloated, even by the end of the two-week course of antibiotics. Some other symptoms worsened too. For example, I had a lot of pressure in my head, making my eyes feel even more swollen than usual and my ears pop as if I were going up and down in elevation. Other than that, I did not experience any side effects. I did have to take the neomycin with food to avoid nausea.
I asked my doctor for another lactulose breath test to find out whether these drugs were worth the expense and risks. This time there was a big change! I peaked at 34 ppm of methane and 89 ppm of hydrogen! This may sound terrible, but I had learned from the SIBO Symposium that when a treatment is effective at killing the methanogens, you end up with lots of hydrogen, because the methanogens make methane from the hydrogen gas produced by the other bacteria. Fewer methanogens means more hydrogen from the other bacteria. Methanogens are the most difficult to kill, and this was the first treatment that was effective at killing them! If I am unable to deal with the remaining overgrowth through other treatments, I will have to find a way to get my hands on more rifaximin!
Treatment 9 – SIBO Center Herbal Protocol with a Biofilm Disrupter
Although the rifaximin and neomycin combo had made a difference, I had to keep treating if I wanted to beat SIBO. This time, my doctor suggested I try a biofilm disrupter along with the herbal protocol that does seem to help me (Allimed, Neem Plus, ADP – oregano oil, and berberine). For two months, I took these herbs along with a biofilm disrupter developed by Klaire Labs called Interfase. Interfase is taken between meals and consists of a bunch of enzymes that break down the biofilm that the bacteria create to protect themselves.
I read reviews online for Interfase Plus, which is the same as Interfase, but it also includes EDTA to bind minerals, preventing the bacteria from using them to create their biofilm structure. I was hesitant about taking something with EDTA. We all need minerals to live! I don’t want to kill myself in the process of trying to kill the bacteria! However, many people said that if taken between meals, it did not bother them. I took the plunge and tried it. I was a different story. Here’s the thing. Our small intestines are still busy absorbing vitamins and minerals from our food in between meals, so it seems to me that the EDTA could still be a problem between meals. For me, it was. I experienced heart palpitations, racing heart, and lightheadedness. Clearly I was deficient in some kind of minerals! Scary! I stopped taking the Interfase Plus and ordered some just plain Interfase. My body returned to normal, thank goodness!
After two months, I felt somewhat less bloated, but I still had symptoms of SIBO. I decided for myself that since bacteria multiply very fast, the only way to beat SIBO is to keep treating until it’s gone. Treating SIBO is a catch-22. We all need bacteria, especially certain strains, in our guts to help us digest food and train and regulate our immune systems, among many other responsibilities. However, I have too much in the wrong place, so I have no choice but to keep killing it if I ever want to improve my health. I planned yet another round of the elemental diet, and then a follow-up breath test. I’ll save that story for another post.