New SIBO diagnosis

Hi-

I have tested positive for SIBO by breath test twice. My symptoms have been non specific most of the time - low grade constipation dominant IBS. Occasional I have a bout of more intense symptoms. I was positive for both gases on both tests. I was offered the antibiotic but declined because cost and likely recurrence.

I have mentioned in other posts that I have malrotation of the intestines leading to having my small intestine being on the right side of the abdomen and my large intestine being on the left side. Malrotations can also create adhesions and affect motility so I think my issue may be mostly structural.

I have cycled on and off a low FODMAP diet. I have a friend with SIBO and a very serious case of IBD who follows the diet religiously. I find a avoiding onions and garlic for a while really helps,

I am not sure if you have heard about a device called the Foodmarble. It is an at home device that measures methane and hydrogen in a user’s breath. The app also tracks diet. For me personally I have found the device to be accurate. I tracked the accuracy by using the device while taking my second clinical SIBO tests. The results were nearly identical. Others have said they got different results. As always everyone has to do their own research and evaluation. I do wonder if breath tests both the clinical ones and the Foodmarble ones might be affected by lung disease. The AI response says it’s possible that lung bacteria could affect the results. I had my tests before I knew about the Bronchiectasis. It might be something you want to discuss with your doctor.

Good Luck.

Gets to be overwhelming, doesn’t it?!

@annalaine , How interesting. No, I have not heard of Foodmarble, but I will check it out. My results were actually marginal, but they said that they qualified. I have also never heard of the Martin that you mentioned. I do know that the problems with SIBO can be structural in origin. Low stomach acid is also implicated.

Yes, the medicine is expensive. I was fortunate that my insurances left me with only a $60 copay, but that is also not cheap. I know that treatment for methane dominant is slightly different, as is treatment for both types.

Another issue with SIBO is motility. The motor complex (can’t remember the name) does not function as it should, and so the muscular contractions and messaging are off. I read that having meals that are well spaced out three times daily helps to reset that. Well, with MAC and bronchiectasis, in order to keep weight on, we are advised to eat multiple small meals a day, which I had been doing and never used to do.

It is a multi factorial issue, including stress, as stress raises cortisol levels, increasing tension, and the cortisol also affects stomach acid.

Gut brain and gut lung connections are very real. I believe that traditional Chinese medicine really has it right.

@formergardener

Yes - I am reading more and more about the role the gut plays in all sorts of other conditions especially the immune system. In my case I may have a mild phenotype type of Primary Ciliary Dyskensia which is genetic and can cause problems with congenital intestinal development (malrotation) and bronchiectasis (in my case mild) via ciliary problems. Still waiting on some tests to confirm.

Dealing with SIBO can definitely be complex as different people have different triggers. And you have the additional burden of needing the small meals for MAC so I definitely think a dietitian would be the way to go - preferably one who has SIBO experience.

@hoopsnest17897 , as another member said, it stands for small intestine bacterial overgrowth.

It can be caused by slow food transit time, low stomach acid, long term PPI use, a malfunction of the motility of the digestive tract, a lot of stress, and other causes.

There are two types: hydrogen dominant and methane dominant. I have the hydrogen. I had begun having intense bloating and belching about two months ago for no apparent reason. I had it all day long, even when I was not eating. I would even occasionally experience slight reflux in my throat, but only after the extreme bloating began. I also had a burning pain in my stomach.

I had not done anything differently with food choices, what I drink, habits. No smoking or drinking, no carbonated beverages, good protein, both animal and vegetable, lots of fresh fruits and veggies, and healthy fats.

I did have Covid for the first time in December and had to take Augmentin because the cough got so bad. I coughed for a month, despite my twice daily nebulizing with 7% saline and use of airway clearance PEP. I am thinking that maybe I coughed so hard that I may have gotten a hernia or something. The ultrasound may reveal something.

The medicine is only about 50% effective, and the condition often reappears. I am not experiencing any reflux at all since I started the antibiotic, but I am concerned that Inmay have an ulcer, and an endoscopy can look at that.

I had taken azithromycin, ethambutol, and Arikayce for two years for mycobacterium pulmonary infection with absolutely no gut issues. I took good probiotics and ate yogurt and kept my intake of sugar very low while eating very healthy. That has not changed.

@formergardener my gastric problems started after I finished 23 months of MAC treatment- terrible abdominal pain all day long. I had all test that excluded many illnesses and the pain was still there. It was diagnosed eventually as bacterial dysbiosis( even though I took probiotic etc and had no gastric issues during the treatment). I contacted Michelle McDonald and she helped me step by step, week by week to get my insides work. Honestly it took 6-7 months. She worked with me on my diet and certain enzymes combination, gas relief meds which come without additives etc. May be you could try 2-3 conferences with her.

@lilianna I so much appreciate your suggestion. It helps to have the input from someone who has also undergone the MAC treatment. I will definitely contact Michelle for consults. I saw that she is no longer with National Jewish. Can I just google her? Since she is in another state, are teleconferences covered by insurance? I know that there was a period where Medicare was no longer going to even cover any televisits. Also, after Covid, insurance stopped covering many out-of-state physician televisits because the doctors were not licensed in other states.

@formergardener Michelle has a private practice only and we worked via zoom or FaceTime. I don’t know what the hourly charge is now.