SIBO Update #4: Complete Protocol Change

After my last post, I kind of plateaued for a while. I kept taking my herbs and roughly following the diet, but nothing was moving. I was 40% better than when I started but no more, and I felt pretty stuck. At the same time, I was having some hip and low back problems, and to keep that very long story short, I decided to see an acupuncturist. After that, two things happened – first, the session was so effective for my digestion that I decided to make it part of my healing protocol and second, I realized that not only was I tired of driving half way across town to see my naturopath, I also didn’t trust where my treatment was headed.

Last time I saw Dr. Cole, who I firmly believe is a great doctor, she had me take home a kit to collect a sample of my stool and send it to a big, fancy lab that basically runs a bit of an insurance scam in order to do their fancy tests for only $99 out of pocket. The sketchy thing is that they bill your insurance and when it doesn’t pay, which is usually doesn’t, they send you two bills that you aren’t supposed to pay (they’re like, a formality) and promise not to send you to collections. The whole thing just hit some alarm bells inside my head. Plus, through the research that I’ve done, it doesn’t seem like the results would have changed my treatment protocols very much, so I didn’t understand the point. My doctor was waiting for me to do a stool sample I didn’t want to do. I could have gone back and communicated this to her, which I would have done if I hadn’t have found a new doctor much closer to home who is a great naturopath and also an acupuncturist.

I took my new ND, Dr. Sabrina Kimball, my SIBO breath test results from last September, as well as my blood work. She took one look at them and said, “I understand that at the time you couldn’t afford the antibiotics. But given your test results, it will take you at least 4-5 years to heal using herbs. It’s not that I don’t like herbs, but from what I see here, it’s going to be a long, painful recovery.” She went on to explain her philosophy in healing SIBO, which was thoroughly fleshed out and based not just on several cases of treatment, but also on the research being done at Stanford and Cedar-Sinai, the two places doing any sort of research on SIBO. She had also read the study my last ND had presented about herbs being just as effective if not more than drugs, but said that with my test results, she would urge me to rethink them.

She explained, so much more throughly than my previous doctor, exactly what was happening in my gut, why it was different than things like celiac disease, and the protocol for healing. In a nutshell, kill the bacteria to set the slate clean, then use enzymes and other methods to restore each part of the digestive tract to full motility. In her opinion, treating SIBO requires check-ins at least every two or three weeks, not months like I was doing before. Because SIBO is so tricky and so unique with each person, frequent check-ins are necessary to adjust the protocol to keep up with the healing. All of this made a lot of sense to me. This, plus some help from acupuncture, sounded great.

My new protocol

My new protocol is to take the antibiotic Xifaxan (which is said to stay only in the gut) for two weeks. After those two weeks, I’ll follow that with a quarter of a tablet of erythromycin at bedtime, which is technically an antibiotic but, my doctor said, at such low doses it instead acts as a motility agent. During the time I’m taking the xifaxan, my doctor doesn’t expect me to really feel better, which makes sense to me – I’ll be in die-off mode again. Detoxing the system through lots of water and moderate exercise will help my body flush all the crappy bacteria out.

Additionally, she has changed my diet. If you’ve read my previous accounts, I was on a combination of the SCD and Low-fodmap diet. From the research she has done, my ND believes that I only need to be on the low-fodmap diet. The SCD diet was created more for gluten intolerance or celiac disease, not SIBO, and is an extreme place to start out. The low-fodmap diet has more research behind it as it pertains to treating SIBO; she described it as a more fine-tuned approach. I was already eating fairly low-fodmap, but now that it is my main approach, some things will change.

The Low-Fodmap Diet

Fodmaps are certain carbohydrates or sugars that are found in foods, although not all carbohydrates are fodmaps. Fodmaps are osmotic, meaning they pull water into the gut which can trigger diarrhea and bloating. They are often not digested or absorbed well and could be fermented by bacteria in the gut and, when this bacteria is in excess like in SIBO, this can cause excessive gas and bloating.

Fodmaps means Fermentable Oligo-Di-Monosaccharaides and Polyols and include:

  • Fructose (fruits, honey, high fructose corn syrup)
  • Lactose (cow, goat, sheep and buffalo dairy products)
  • Fructans (wheat, onions, leeks, garlic, inulin)
  • Galactans (beans, lentils, legumes like soy and peanuts)
  • Polyols (sweeteners containing sorbitol, maanitol, xylitol, maltitol, stone fruits like avocado, apricots, cherries, nectarines, peaches and plums)

The low-fodmap diet also limits high fiber foods because they also have high amounts of fodmaps. The main differences in this diet than the one that I was on are:

  • Nuts and seeds are no longer so limited, neither are nut milks
  • Coconut products need to be limited more than I had been
  • I can try small amounts of rice, quinoa, amaranth, buckwheat, teff and corn.
  • I have more vegetables available, including bok choy, bamboo shoots, pumpkin, yams, potatoes and squashes
  • My main sweetener goes from honey to maple syrup

Although these may seem like relatively small changes, they have created a huge mindset shift for me. In my past diet, the SCD made more sense to me because of how the author explained gut damage. But, my doctor reminded me, we don’t know if my gut is even damaged that way since she was really talking about damage from gluten intolerance, which I don’t necessarily have (unless I’ve developed it, but I don’t have celiacs disease). So, when I’d cheat on the diet, I’d often cheat with fodmaps – things like onions, garlic and corn, rather than with SCD-limited foods like nuts. Understanding how the low-fodmap diet work with my system has helped me create a mindset shift around my next phase of healing.

Plus, this is a low fodmap diet, not a no fodmap diet. Just that distinction allows me to breath a little easier.

Week one of Xifaxan

I just started taking Xifaxan yesterday. This is an incredibly expensive antibiotic (it’s a name brand drug with no generic). When I started SIBO treatment last September, I had very bad insurance. Luckily, that has changed and now I have very good coverage – so good, in fact, that I paid a $10 copay for the drug while my insurance picked up the other $1000. Yes, you read the number of zeros correctly. I was expecting to have to pay between $200 and $400, depending on how generous the insurance company was, but I got lucky. (Maybe it’s time for a pair of new shoes. Hmmm).

Now, I must say that I have reservations about using an antibiotic to help me heal from something that antibiotics helped create. I tend toward the natural side of healing and prefer herbs when possible, so at first it felt a bit sacrilege to move toward medication. However, when I really looked at my belief systems around healing, I realized that my belief in natural remedies being superior was what was holding me back from allowing this new process to take place. I don’t have a problem with western remedies and doctors that really bring about healing; so often, however, their treatments act as bandaids and it’s the lack of whole-system understanding and natural alternatives that bothers me. I want to understand all the information, all the options, so I can make the most informed decision possible. And this seems like a situation for me in which the western medicine route is the way to go right now, especially since it’s being backed up through acupuncture, enzymes and system-supporting herbs.

So far, while taking xifaxan, the only thing I’ve noticed is an increase in gas. I’ve only had slightly more bloating, but not enough to write home about. I will keep you posted as I continue. In the mean time, I had a great time creating some new recipes to go along with my new diet. I have a week’s worth of meals planned out and I’ve posted two recipes (find them here) getting me through breakfasts and lunches for most of the week.

Motility – what’s stopping it?

I also want to bring up another really important component for me. I said in the beginning of the article that I was seeing a few specialists for some hip and low back pain I was experiencing. When I finally got to the root of the matter, it was the gentle therapy of visceral manipulation that cured me of the pain, in literally one session (I’d already spent a month in physical therapy and chiropractic with ZERO results). For me as a highly sensitive person, the way that stress affects my internal organs and connective tissue plays a huge role in the health of my gut.

Liz Koch writes about the importance of the psoas muscle for gut and pelvic health. The more I’ve worked with my VM practitioner and helped myself through the exercises Koch suggests, the better everything in my system works. I’ve spent time this month in her constructive rest pose and with a small soft ball under my back to soften the deep psoas muscle. I believe that it is this, combined with my acupuncture treatments, that lead to my first menstrual period in several years with NO CRAMPING. Additionally, my bowel movements have improved tremendously, which is a big deal when you’re suffering from SIBO.

I also have a history of sacro-illiac and pelvic hypermobility, a condition in which the sacrum and pelvis move out of their normal ranges of motion, causing pain and discomfort in the low back and hips. From my years in various physical therapies, we’ve come to understand that it’s not so much my external skeletal muscles pulling my joints out of alignment, but rather small adhesions on my internal organs that causes the movement. Interestingly, the right sacro-illiac joint is the attachment point for the end of the small intestine. When the sacrum is out of place, the end of the small intestine can’t empty properly into the colon. Further, disruptions in the psoas (a messenger muscle for the nervous system that responds to our fight or flight stress response), can cause inflammation, leading to small internal adhesions anywhere in the gut, and likely in some of the meters of small intestine. As these adhesions become stuck, they can pull on the side of the sacro-illiac joint, internally causing rotation.

For these reasons, I’m finding it increasingly important not only to reduce stress, but specifically to reduce stress through constructive rest. Finally, I’ve booked a once-a-month appointment for visceral manipulation to continue to free up my small intestine and improve motility.

The psoas-SIBO connection is a HUGE topic, and one that I’m currently researching more thoroughly in order to understand and write about. I just thought I’d let you know what I’m discovering and where my treatments are leading me.

Well, that’s where I’m at! I hope this helped you along your journey; I’ll be updating you more frequently as I work more closely with my new doctor.

24 Comments on “SIBO Update #4: Complete Protocol Change”

  1. This is very interesting! Could I ask how high your test results were? Mine were in the 80s and I feel that I’ve got a loooong way to go. Currently on round two of xifaxan and metronidazole.

    1. Hi David,
      At 160 minutes, my Hydrogen levels reached their highest mark at 120 ppm! I’d love to hear what follow up procedures you tried the first time in regards to diet and digestion restoration. Thanks for reading!
      Anna

      1. Wow! Mine are at 156 ppm. I’m starting my recovery plan next week with my natural path/acupuncturist.

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  3. Anna,
    Your post have been so helpful, do you know if chlorella and spiralina could aggravate SIBO?
    Kristine

      1. Thanks for getting back to me Anna. I look forward to your update.

        I’ve been trying an herbal protocal while waiting for the antibiotic approval and it doesn’t seem to be helping. As I’m sure you know, there’s so much conflicting information on SIBO that it is difficult to choose the right course of action.

        Be well.

        Ali

        1. Hi Ali, I posted an update – yeah, finding the right course is difficult and, I’ve realized, finding a good naturopath who is well researched but listens and trusts you. On the herbs, I felt worse, then better, then plateaued with no end in sight. Now I’m on the uncomfortable end of antibiotics; it’s definitely not all fairy tales and rainbows. Seems to be part of the process, though!

          1. Hi Anna, I speed read your update while I should’ve been working. 😉 Will read it again tonight. Thanks for posting it for your readers.

            I have a naturopath I trust, but still waiting for the antibiotic. As soon as I get it I’m going to go to her to start healing my gut all over again. I imagine she’s going to tell me to go paleo/low fodmap and put me on seacure among some other things. She helped me last year get to a great place with my celiac and leaky gut. I was rocking a flat stomach until about November when i started to look slightly pregnant and my digestion couldn’t even be described as digestion. I stumbled upon ACV (love it, but hurts my teeth so no good), then HCL, FCLO butter blend, siliphos, etc which all help, but right now I feel f-d beyond belief.

            I’m on fc cidal and dysbiocide with very minimal oil of oregano. Some antibiofilm by Klaire labs arrived today so I took that before the anti-microbials and I plan on taking a gram of activated charcoal tonight. Let’s see how that goes and if it is another nightmare, I’m just going to chill till the antibiotic.

            Have a good night,

            Ali

  4. Pingback: SIBO Update #5: My experience through antibiotics and the aftermath |

  5. Hi Anna,
    This post is so amazing. I’ve just been diagnosed with SIBO, which is something I suspected I had for a while. I also have scoliosis which I’ve had since adolescence. The main curve is in my lumbar and I’ve had chronic pain in my low back and hips for years due to the twisting in my pelvis. It was an amazing Pilates instructor who got me understanding the psoas and hypermobility and what effect they have on my spine. I’ve been working on finding the connection between the psoas, scoliosis (or back pain), and, well now SIBO. This is the first time I’ve read anything that connected the three. Thank you thank you thank you!!!

    1. You’re welcome, Chloe. It’s a continued interest in mine and something I think is important though, you’re right, I don’t see anyone else putting it together, except maybe Liz Koch in her books about the psoas. I don’t know anyone who has studied the connections in detail, but it’s something I hope to do in my upcoming sibo study. Glad you found me! Another update will be coming this week 🙂

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  7. Pingback: SIBO Update #7: One minor set back and my healing plan outlined for easy reference. |

  8. Ive been on an elemental diet for sibo for about a week although Im having a problem with my carbohydrate sources.I cant tolerate honey or dextrose but have been great with maple syrup.Problem is that of course is scd and elemental diet illegal.What are your thoughts on maple syrup aggravating sibo?Ive seen some mixed opinions on this and wondering if keeping it in my diet would be okay. I know it would make my life a heck of alot easier.

    1. I follow the low fodmap diet, which allows maple syrup as the ONLY sweetener for the diet. I seem to do fine with it. However, I’ve pretty much gotten used to life without too much sweet after I gave up sugar a year ago, so I’m used to things less sweet and don’t tend to use too much. I hope that helps!

    1. No worries, Tippy – as I like to say, there are no stupid questions, just arrogant teachers 😉 Yes, the low fodmap diet is used to treat SIBO. When I first started, an ND put me on a combination of the low fodmap and the SCD diet. My new ND, following the research by Dr. Pimentel and Standford, just has me following the low fodmap. It really has seemed to help, as you will see in my later posts. Good luck!

      1. Thanks Anna, so many opinion sometimes it can have your head spinning.So glad to hear the protocol is working out for you. Gives me hope I can clear my gut issues as well and looking foward to your future posts!

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  10. Hello, I too have SIBO and lower back/hip/psoas problems. I find your link between the two issues fascinating. My back flare ups coincide with any inflammation or bloating, including menstruation. Please keep us updated in your research and treatment.

  11. Hi Anna! I hope it isn’t too weird for me to post this comment so much later than your publishing date. I just stumbled across this post researching the most randomly connected health issues and treatments, and I can’t believe what I’m reading!
    I’m also hypermobile, and my right side has been a mess for YEARS. It’s my psoas and SI joint! And then this year, I’ve been having these digestive problems! I honestly can’t believe you’re finding a connection, and I don’t know if you’ve discovered more, but I’m so thankful that you wrote about it. Maybe there’s hope for us yet! 🙂

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