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The four biggest mistakes I made treating chronic SIBO and IMO...

Today I want to focus on Small Intestinal Bacterial Overgrowth (SIBO). I have been battling this nasty little bug for the past three years and I honestly believe it is one of the main reasons I became a COVID Long-Hauler in the first place.

Put into perspective, it makes sense. According to assistant professor of pathology at the Johns Hopkins University School of Medicine, a huge proportion of your immune system is in your GI tract. So when your gut is busted (like mine), it leaves your immune system wide open to invaders (hello, COVID-19) and your body can’t fight those invaders as well as it should.

So, what is SIBO? What is IMO? According to the Mayo Clinic, “Small intestinal bacterial overgrowth (SIBO) occurs when there is an abnormal increase in the overall bacterial population in the small intestine — particularly types of bacteria not commonly found in that part of the digestive tract.”

Symptoms of SIBO vary depending on the type of SIBO that you have. There are three kinds of SIBO; hydrogen, methane, and hydrogen sulfide. I have methane dominant SIBO which tends to be harder to treat. Recently, methane dominant SIBO was reclassified to Intestinal Methanogen Overgrowth (IMO) because research studies showed the “bugs” that produce methane are not bacteria, they are in fact arcae…a totally different species…blah blah blah. If you want to read more about it, check this article out:

What are some of the symptoms of SIBO and IMO?

· Loss of appetite

· Abdominal pain, mild to severe

· Nausea

· Bloating

· Gas

· Burping or belching

· An uncomfortable feeling of fullness or slow motility

· Diarrhea or constipation

· Unintentional weight loss or weight gain

· Malnutrition

· Fatigue

· Nausea

How do you even get SIBO or IMO?

Some people don’t know how they contracted SIBO, but I do. Three years ago I had the worst stomach virus EVER. It felt like someone lit a match and tossed it down my throat and it just kept burning. If I ate anything other than plain bagels I would be doubled over in pain for hours. And it lasted weeks. Years later I would learn that stomach viruses and food poisoning are the most common causes of SIBO, followed by intestinal surgery or overuse of antibiotics.

During my first ER visit, I thought for sure I had an ulcer or stomach cancer; the pain was so intense. But, after running several tests and doing an ultrasound, the doctor couldn’t find anything wrong with me. On my second ER visit, I distinctly remember being doubled over in pain and the ER nurse kindly alluding to the fact that it was all in my head a.k.a stress. She passed along the title of a book about the gut-brain connection, gave me a look of annoyance as if I was “wasting her time” and left the room.

I wanted to cry. At that moment, it was literally the most demoralizing thing she could have said to me and I couldn’t get out of that ER fast enough. A year later when I finally got my SIBO diagnosis, I wanted to march back into that ER, find Katie and shove my test results in her face…

My four BIG mistakes:

I made a lot of mistakes when it came to treating my SIBO (which I now know is actually IMO), but there are four really big ones you’ll want to avoid. Avoiding these mistakes would have saved me a lot of time, money, and stress but I’m hopeful that sharing them now will help others avoid them.

Stay tuned for my next blog where I’ll share my current treatment program that actually seems to be working!

Mistake #1: Don’t go to any old GI doctor

I cannot stress this enough. Your average GI doctor will not know how to diagnose or treat SIBO so run for the hills. I spent the first year being treated by a regular GI doctor. He ran blood tests, stool tests and performed an endoscopy which revealed mild inflammation, but the results weren’t definitive. After 10 months he diagnosed me with what all GI doctors who haven’t stayed up to date on their research diagnose patients with: Irritable Bowel Syndrome or IBS. Turns out 70% of IBS patients actually have SIBO and not IBS. Lucky for me on my last visit my doctor was unavailable, so I saw his nurse practitioner instead. When I begged her to keep looking she mentioned there was one more test they hadn’t done…a breath test to check for SIBO. This was news to me. I had never heard of SIBO.

Two weeks later, I got my positive test results back. This is also when I made mistakes #2 and #3.

Mistake #2: Antibiotics (or herbals) alone won’t kill a tough case of SIBO or IMO.

The nurse practitioner told me I needed one or two rounds of an antibiotic called Xifaxan and that it should cure my SIBO. Xifaxan (although well document to treat SIBO) isn’t covered by most insurance companies as a treatment for SIBO. Out of pocket, it will cost you about $3k. Luckily, they were able to give me enough sample pills to get me through the first and second rounds of treatment. Unfortunately, Xifaxan alone won’t treat a complicated case of SIBO so it didn’t work.

Note: if you are looking for an inexpensive way to purchase Xifaxan, you can do so through Marks Marine Pharmacy in Vancouver, Canada. Your doctor will need to fax a prescription and then you have two options. You can buy the Canadian version for $600 and have it in a week, or you can do what I did and buy the version that comes directly from India for $79 but also takes three to four weeks to arrive.

Now, I’m no expert, but over the past three years, I’ve seen exactly 7 different GI doctors and naturopaths. I’m currently under the care of a functional medicine specialist. Aside from the functional medicine doctor, each specialist had a similar but different approach to treating my SIBO. The doctor who came closest was a pediatric GI doctor who had treated several SIBO patients. He did the most extensive testing and used a combination of herbal antimicrobials and antibiotics. He was on the right track, it was just the wrong combination of drugs.

All the research I had done taught me that the best way to get rid of a tough case of IMO was a combination of Xifaxan and Neomycin. This was according to Dr. Mark Pimentel who is basically like the GI SIBO god. I guarantee you, if you read any medical journal articles about SIBO, they will have his name attached to them. Unfortunately, the pediatric GI doctor did not want to give me Neomycin due to its potentially harmful side effects, so we tried four rounds of other combinations first…none of which worked. I wish I had spoken up earlier and insisted on the course of treatment I knew had the best chance of working.

Mistake #3: I didn’t do enough research.

Most of the time when you are sick the last thing you should do is head for the internet and click the search. In the case of SIBO and IMO, I say google the shit out of it, just make sure you are using legitimate sources. Due to the fact most doctors aren’t familiar with and don’t know how to treat SIBO, you are going to be on your own until you find a practitioner who knows what they are doing.

When I was first diagnosed, I did a little research, but I figured the doctors knew what they were doing. Every time I went to a new doctor, I did a little more research, but it took me two years to figure out exactly what type of SIBO I had, how severe it was, and what the best course of treatment would be. I found all that from researching and reading on my own, not from what doctors told me. In fact, I oftentimes would tell doctors what my diagnosis was.

So, read as many journal articles, blogs, papers, and practitioner websites as you can find and then take notes. Your research combined with a positive breath test as well as other test results will be your best weapon at fighting this nasty little bug. If you aren’t sure where to start, read anything and everything you can by Dr. Mark Pimentel.

Other resources:

Mistake #4: One diet does not fit all.

When you have SIBO, a big part of feeling better is diet. However, to be clear, it’s my experience that diet alone won’t cure SIBO, it simply helps mitigate the symptoms and it can help your gut heal during the treatment process. However, one diet does not fit all in this case.

Several doctors told me to stick with a LOWFODMAP diet which is helpful for IBS patients; however, for someone with IMO, carbohydrates tend to make symptoms much worse (remember all those bagels I ate) so while the LOWFODMAP diet is wheat and gluten-free, and limits some vegetables, rice and potatoes and some gluten-free carbs are allowed. These carbs aggravated my SIBO and thus I felt worse on the LOWFODMAP diet.

After much research (see mistake #3) and trial and error, I finally found the best diet that worked for me: the SIBO Biphasic Diet. It’s basically like eating KETO but with a few more restrictions…fun, right?! When I stick to the Biphasic Diet 100% I feel completely symptom-free. The only problem is, it’s not meant to be a long-term diet as it severely restricting and limits several fruits and vegetables. That’s why finding the right course of treatment is important…so you don’t have to be stuck on the diet for three years, like me, and face losing key vitamins and nutrients your body needs.

Other diet options people have found helpful: the Specific Carbohydrate Diet (SCD), Low Fermentation Diet, the Elemental Diet, the SIBO Specific Diet by Dr. Siebecker, and the Gut and Psychology Diet (GAPS diet). Basically, choose the one that works best for you and the one that you can follow the easiest based on your lifestyle. It’s my experience that the diet is most important after your treatment is finished…stick to it for at least 6-8 weeks to give your tummy time to heal but if you cheat a bit here and there it won’t set you back.

Here are a few other tips that helped me:

- Avoid snacking, eat 3 solid meals per day and give your digestive system time to recover in between meals (when I stick to this, I feel sooo much better)

- Intermittent fasting may help relieve symptoms but make sure you check with your doc first

- Avoid sugar like the plague; the SIBO and IMO bugs crave sugar and it’s the easiest way to feel bloated and get a stomach ache

- Drink hot lemon water before meals

- Drink a lot of water...and by a lot, I mean A LOT

- Chew your food until it’s basically mushy baby food

- Avoid raw veggies; unless you want some serious stomach gas

Whew, that was a lot of information but I hope it was helpful. Please keep in mind, I'm not a doctor and this advice/information is not meant to diagnose or treat any condition, it's simply to help educate you in hopes that you won't have to suffer as long as I did.

Stay tuned for next week’s blog where I’m going to break down my current course of treatment and how it’s different than what I’ve done in the past.

Until then,

XOXO Carri E.

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