Welcome to Connect, @nobleone,

Thank you so much for sharing; this is what Connect is about: learning from one another's health journeys, struggles and experiences.
@jmmb @saucy @ginpene05 have also discussed the holistic approach to finding relief from such chronic conditions, and I hope they return with their thoughts as well.

@nobleone, may I ask if you would share a few more details? When were you diagnosed with SIBO? Has the FODMAP diet helped?

So since I was diagnosed with Non Hodgkin Lymphoma after a small bowel resection in July, I mostly spend my time trying to get my GI system working. I have had 2 more obstructions. The plan is for me to progress to a relatively normal diet while we treat the Lymphoma. I am fairly freaked out but dealing with it.
Thanks for your interest. Ginny

I was diagnosed with SIBO 5 years ago from my G.I Dr. Did several rounds of antibiotics. Didn't help me. Wanted to put me on more. I decided against it. I just gave up on it. Two years ago I started feeling worse. All kinds of different symtoms. Achy joints, mood swings, depression, not being able to focus, couldn't sleep full nights, tired, sick stomach, and back pain. I just thought I was going through menopause. The biggest thing I was having was anxiety. That was so not me. My gyno wanted to put me on estrogen pill and cream. Did not want to take the chance of getting cancer from it. That's when I went to a Holistic Dr.He did a test on my hormone levels. They weren't that bad for the way I was feeling. We got to talking and I knew this Dr specialised in the GUT. Told him I had SIBO. It all clicked to him. Sibo has all the side affects I listed plus more. Did another breathe test. A normal reading was 20 and mine was 88.He also did blood work to see if I had any food allergy symptoms and did a poop test. Those came back good. I have been treating in for almost a year now. Just took another Breathe test and I was down to a 30. It's been a long and expensive process. Insurance doesn't cover Holistic Dr. At least mine doesn't. I had to pay for every test.
The Fodmap diet does work just really hard to stay on. I am very confident that this journey is about to end. SIBO takes a long time to treat. My heart burn is gone. I have regular bowel movements and my anxiety is gone. I hope u find relief cause I know what u are feeling. Good luck.

Hi @ginpene05,

I wanted to follow-up and ask about your progress; I hope you are doing well? I was wondering if you had the opportunity to view these discussions about Non Hodgkin's lymphoma on Connect; they are incredibly informative groups, and you may also wish to post your questions and suggestions there:

– CAR T: A New Treatment for Complex Cancer Cases https://connect.mayoclinic.org/newsfeed-post/chimeric-antigen-receptor-car-t-cell-therapy/
– Non Hodgkin's lymphoma https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-2c0eb7/

Hi, Kanaazpereira, Thank you for the info. I have had 2 of the planned 6 treatments of R CHOP and gratefully seem to be tolerating it well. My GI system seems to be settling down after my two intestinal resections. I feel fortunate.

Hi SweetMaize, My hydrogen breath test levels never peak until 90+ minutes, but luckily my GI doctor has figured out that's how my body works (based on results of my gastric emptying scan). So, in my case, and possibly yours, it was diagnosed "Late Positive SIBO". If you were given Xyfaxin and your symptoms improved significantly, that could be your answer.

Hello @pjeurissen, I see that this is your first post - welcome to Mayo Connect!

We appreciate the information that you provided about Late Positive SIBO, I had not heard of that before. it sounds like your Gi doctor has the ability to think outside the box and compare the results of different tests. You are very fortunate to have an answer for your problem. One of the great things about Mayo Connect is the way we learn from each other and we appreciate your adding to our knowledge base.

How are you feeling now? Are you taking meds or a diet plan that is helping?

Teresa

Well, after a Christmas where I was feeling amazing and was starving for some "good" food (the kind that is not SIBO friendly) I indulged a tiny bit for a week. I started feeling the familiar slight stabbing pain in my upper gut and I panicked. I am strict, strict, strict right now holding my breath that I didn't bring it all back again. UGH!! On the bright side (if there is one!) my insurance company just approved a third round of Xifamin today. I will hold on to it until I know for sure it's all back again. So frustrating!! I might go down and get another breath test just to be on the safe side to see if it's back for sure, and also to confirm if I really can tell that it's back from my own intuition!

@pjeurissen I hope that your discomfort is just temporary and that after you adherence to your food plan you will feel better. That is good news, though, about your insurance covering the Xifamin. I hope that you won't need it, but it is good that it is available,

Your experience with SIBO is certainly enlightening.

Will you update us as to how you are feeling and let us know if you have another breath test?

Teresa

I would love to know how you are doing. I was just diagnosis with SIBO. Its debilitating. My doctor started me on amoxcicilin as xifaxan is not covered by insurance and I'm nervous to take CIPRO because my grandma used it and her tendons tore in her feet. I feel stuck and sick. I lost 30lbs in 2 months last year. I want my life back. I want to work and be a mom. I believe my underlying cause was slipping rib syndrome because my GI issue started after the injury.
Thank you! So happy you are doing well!