Brake for Nature

Health Update – Excerpts From My SIBO Journal

May 7, 2017 – A Slip in the SIBO Diet

It’s the early morning hours on the day after my 38th birthday. I am awake with bloating and indigestion, just hoping that things will move along in my intestines enough to settle my stomach and allow me to sleep. Ok, I will admit that I ingested some foods that have been on my “avoid” list for the last couple of years due to my SIBO diagnosis, but I figured I could get away with it for one day.

My two loves – besides my husband and family and friends, of course – are nature and eating delicious, fine foods. One of my favorite birthday celebrations involved freely roaming around the Mojave Desert in Michael’s pickup truck, exploring back roads, hiking, and camping in the back of the truck. When I turned 35, I had already developed this chronic illness and could barely walk with all the pain in my feet. To make the day special, Michael and I bought some fine cheeses, breads, fruits, and wine and took them to a park up near Ojai, California. I couldn’t walk, but I could sit out in nature and satisfy my taste buds!

This year, we took a walk in the woods the day before my birthday. Then, on my birthday, I broke down and tried the frozen custard in the town of Alamogordo, New Mexico, where we are currently staying in our travel trailer. Frozen custard is a rare find. Many places claim to serve frozen custard, but it turns out to be some lame soft-serve ice cream. It has been years since I have enjoyed frozen custard, and there it was in my search of restaurants on TripAdvisor – real frozen custard!

Unless a person is allergic, I don’t believe anyone’s health should be completely compromised by the occasional treat. I am also certain that one treat on my birthday will not be the sole reason for my failure to beat SIBO. In the long run, beating SIBO is way more complicated than avoiding a treat on my birthday. I figured on a temporary increase in my discomfort, but allowing myself some pleasure for my taste buds would make the day special. I fully embrace the idea that some days should be special in life.

So, I ate frozen custard in the afternoon, and I even drank some red wine with dinner and combined it with dark chocolate for dessert. Now my guts are so full of methane that they are shoving my stomach up into my esophagus and causing indigestion. I popped some herbal antibiotics, the only way I can manage these days, and now I am just waiting for things to settle enough for sleep. I figured I might as well take this opportunity to catch you up on the latest in my health saga.

Results of My Latest SIBO Treatment

After two years of treatments and special diets, I still have SIBO. I’ve made progress in reducing the bacteria load, but I just can’t seem to eradicate it. That means it just multiplies again between treatments.

Since the treatments I described in my last post on SIBO, I attempted a third round of the elemental diet (back in February 2017). This time, I managed to stick with it for a full three weeks. I also did not eat any meat this time for the first 10 days, only liquid. (I previously ate one serving of meat each day of the elemental diet.) By Day 10, I was so weak and lightheaded, I decided that I better add some meat to the diet. It helped. That one serving of meat each day perked me up just enough to make it through to the end. I know some people manage the liquid diet for three weeks, but I will tell you, it is especially hard when boondocking without electricity. I could get through it in the daylight, but after the sun went down, and the cold air settled in, all I wanted was a hot meal.

The elemental diet is hard, but I’m a pro now. After three times, I know I could do it again if it might help. This was the first treatment that actually completely eliminated the bloating. Unfortunately when I started eating vegetables again, the bloating returned. As for my long list of other symptoms, nothing budged.

After this third round of the elemental diet, I retested. My lactulose breath test peaked at 32 ppm of methane and no hydrogen. I was disappointed. I had peaked at about 35 ppm of methane after the rifaximin and neomycin (the pharmaceutical antibiotics used to treat the methane type SIBO), but I had also peaked at 89 ppm of hydrogen at that time. To me, this means that the only treatment that really killed the methanogens was the rifixamin and neomycin. (The methanogens create methane from hydrogen gas in the intestine, so having a peak in hydrogen for the first time in my breath test shows that the rifaximin and neomycin actually killed methanogens.) This third round of the elemental diet simply starved the leftover hydrogen-producing bacteria but was not effective at starving the remainder of the methanogens.

July 25, 2017 – What’s Next?

Now what? Well, some people on the SIBO Discussion Group on Facebook have shared that it took them five rounds of the elemental diet or a full year of herbal antibiotics to beat SIBO. This makes sense to me. We are dealing with a large load of bacteria, and bacteria multiply fast. You have to be persistent. Perhaps I have been too cautious, trying one treatment at a time and then waiting to retest.

Many people eradicate it over and over, and it returns over and over. In my mind, this definitely indicates a motility problem that allows the colonic bacteria to repopulate the small intestine. However, in my case, I have never actually eradicated the overgrowth in my small intestine. 32 ppm of methane is still a fairly large load of bacteria, and they can easily multiply again.

I suppose this is what has kept me going, trying treatment after treatment. I experience some progress with each treatment; I know that others have been successful after very long treatments; and I know that if there are bacteria remaining in my small intestine, they will multiply quickly. All of these things have made me believe that if I just keep treating, I will eventually eradicate SIBO, at least temporarily. Then it’s just a matter of allowing the gut to heal and waiting to see if SIBO returns.

On the other hand, perhaps I need to dig deeper and address some other underlying health issue that is preventing me from healing. This is the direction I have decided to take. After many, many treatments, I believe I have learned that a combo of rifixamin and neomycin and the elemental diet work best for me. I believe if I could be persistent and alternate between these two treatments, I might have a chance at eradicating SIBO. However, I do not want to put my body through all of this if there is some other unknown factor contributing to my chronic health problems and setting me up to develop SIBO over and over.

There are many, many diagnostic tests to which I have not yet subjected my body. I need to at least attempt to find the root cause of my SIBO. There are many known causes of SIBO. Dr. Allison Siebecker shows a long list of diseases associated with SIBO on her website. To list just a few, there’s food poisoning, genetic abnormalities in the structure of the intestines that cause blockages or motility problems, tick-borne illnesses, and endometriosis (where the lining of the uterus grows outside the uterus and may strangle the intestines). I have never been tested for any of these or any others. I had always assumed based on my health history that my SIBO developed due to a combination of factors, but probably mostly because of my long-term antibiotic use for acne in my late teens and early twenties. My guts certainly have not been the same since.

I have too many symptoms outside of my digestive system that may not be entirely explained by the diagnosis of SIBO. Before I take on the costly and challenging treatment plan of alternating rifaximin and neomycin with the elemental diet, I need to know what else may be attacking my body. And so, I am back to searching for a doctor…

5 thoughts on “Health Update – Excerpts From My SIBO Journal

  1. Imkelina and Michael

    Hi Christina & Michael…we were reviewing some campground reviews on Campendium and that path brought us to your blog. Although we are not very familiar with SIBO, this post is the 2nd time we have read about the symptoms of the infection. You may or not know that Leigh of Aluminarium (AKA Campendium) also has posted about her trials with SIBO and her efforts to combat it. A connection with her may bring some new ideas to treating the issues. We admire your dedication and courage to dealing with SIBO and will definitely send you well wishes to getting a handle on any and all heath issues. You have a wonderful travel blog and want to see you continue your celebration of nature.

    1. Christina Post author

      Hi Imkelina and Michael! Thanks so much for following the link and checking out our blog. Leigh and I have met. She also visited our blog after reading some of our reviews and got in touch with me on the subject of SIBO. It’s crazy how many people I meet with chronic illnesses. Thank you for suggesting that I meet Leigh and for your well wishes.

  2. Sumit

    Hello Christina,

    Landed on your website while researching SIBO issues. I have struggled with this for a long time as well. The two things that have helped me the most in my recovery are:

    1. Attacking Biofilms: Interfase didn’t work for me. I think its the lysozyme in their ingredients. Also NAC is not strong enough to degrade existing biofilms. The bacteria are well entrenched, and unless you attack the biofilms, no anti-microbial will work. I used the biofilm protocol recommended for Lyme patients. Look up Anju Usman protocol.To summarize – they rotate between Lumbrokinase / Serrapeptase / Nattokinase. Also essential oils have been a huge help in attacking biofilms. The three best oils for biofilms are – Eucalyptus, peppermint, and Tea Tree oil.
    http://roberttisserand.com/2012/10/tea-tree-oil-biofilm/
    https://christinasantini.com/blog/2017/6/19/top-3-essential-oils-to-degrade-biofilms
    I add a couple drops in whatever food I’m eating.

    2. Working on motility: I use Magnesium Oxide in the night, Iberogast & Trifala between meals. Also SCD diet & Low FODMAP can be highly constipating. Just going to carrots and chicken never helped me. But adding vegetables rich in Vitamin C like broccoli helped in detoxing, even though it is supposed to be higher FODMAP. I just limit the quantity.

    Based on your nine rounds of treatment, I know you are a warrior – you will conquer this disease. Hopefully these tweaks work for you

    1. Christina Post author

      Sumit,

      Thank you so much for reading my story and taking the time to share your recommendations. I actually have recently been diagnosed with Lyme Disease and a couple of co-infections as well. I plan to continue to share my stories, but I’ve been pretty overwhelmed lately trying to figure out all of the factors involved in my chronic health problems.

      I have read about biofilms and definitely agree that they can be a serious problem when fighting infections. I will read more on your tips on biofilm disrupters. I’m definitely interested in the essential oils.

      Foods are so different for everyone. Broccoli is far too fermentable for me. I can’t handle even a little bit. I know what you mean though. Feeding the bacteria is important to good stools, but in the case of methane SIBO, it can also slow things way down with what I call the methane bloom!

      Thank you again! I hope to find some time soon to share the latest on my health story.

      1. Sumit

        Christina – I understand. I’m sorry to hear about your lyme diagnosis and new co-infections. Thank you for sharing your journey. I came to your website searching for elemental diets, since its touted so much in the SIBO community. It was humbling to know that it may not necessarily be the knock out punch that I was thinking it might be. I have a long history of antibiotic usage, esp in early childhood, and with that much time for the bacteria to establish their stranglehold, I suspect that bacteria will keep coming back unless biofilms are taken care of.

        Personally, the most valuable test for me was GI Effects Comprehensive Profile. It gave me the exact species of bacteria plaguing my gut. Now, i could personalize the treatment specifically based on the three pathogens that were discovered.
        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4220539/

        I do this test once a quarter to see if the pathogens have been eliminated.
        I hope you will heal and continue to share your progress.

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