ljimbo423
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This is just a few posts I read at an SIBO forum. Many of the symptoms from their SIBO are exactly like ME/CFS. Pain, debilitating fatigue, food allergies and sensitivities etc.
I'm convinced that my ME/CFS started in my gut and now I have a better understanding of why I've struggled so long and still haven't gotten 100% healthy. Although I'm fairly mild and use to be severe. The struggles these people are having, I think explain my struggles too.
As these people show, putting SIBO and all it's symptoms into remission, can take a very long time and be extremely difficult!
SIBO is a very "chronic" condition.
Here are 2 quotes from below for those that don't want to read the entire 3 posts-
http://www.beatsibo.com/forum
I'm convinced that my ME/CFS started in my gut and now I have a better understanding of why I've struggled so long and still haven't gotten 100% healthy. Although I'm fairly mild and use to be severe. The struggles these people are having, I think explain my struggles too.
As these people show, putting SIBO and all it's symptoms into remission, can take a very long time and be extremely difficult!
SIBO is a very "chronic" condition.
Here are 2 quotes from below for those that don't want to read the entire 3 posts-
SIBO Patient 1-
I'm 29 and have been forced to move back in with my parents since I can no longer hold down a job. I react to everything I eat, always bloated and uncomfortably distended, and can't workout anymore due to widespread joint pain and chronic fatigue.
SIBO patient 2-
I have: extreme bloating, I need to limit myself to 100 carbs, fructose intolerance, diary allergy (Eosinophilic esophagitis) – now dairy free, celiac disease (gf 1.5 years, no difference, tested for refractory etc), and pain in my lower left abdomin.
I am always getting hurt and can barley exercise (I used to be a college runner). Every 2-3 months I get way worse and life is put on hold.
3 Years later, same breathe test
Hi, I've had Sibo for three years and every single treatment has failed.
I have: extreme bloating, I need to limit myself to 100 carbs, fructose intolerance, diary allergy (Eosinophilic esophagitis) – now dairy free, celiac disease (gf 1.5 years, no difference, tested for refractory etc), and pain in my lower left abdomin. I am always getting hurt and can barley exercise (I used to be a college runner). Every 2-3 months I get way worse and life is put on hold.
I've tried:
FODMAP multiple times – I discovered fructose
Specific Carb Diet – low carb diet helps
Autoimmune Paleo diet – only helped bc low carb, reintroductions fine
Multiple Rounds of Rifaxmin – not even a dent in the bloating
Iberogast – motility stimulator – helps a little bit – If I stop this I can no longer function
Candabacitin AR/BR – herbal antimicrobial – helps a little but then it evens out
Gotten tested on CT scans, 7 endoscopies in last 3.5 years, coloscopy, breath tests etc. The only thing I know for sure is celiac (90% confident but I was not bloodwork positive), EOE (dairy makes my thr oat swell), and positive breathe test (same exact results as 2 years ago meaning nothing has worked.)
I've tried other diets and supplements too. My fifth gastroenterologist and my functional nutritionist have both said they are not sure and are referring me on.
Anybody have a similar story?
Thanks,
Mike
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Melissa SteeleAdmin 25d
Hi Mike, I'm so sorry to hear you're struggling. Your story is similar to so many who go through years of searching for the answers to no avail. I'm incredibly sorry you're going through it. I've worked with Spark Health in Solana Beach for years, have you tried a naturopathic or more natural approach or have you been working with western medicine through your experience? I will be up front in the fact that I had every test under the sun with western medicine, many of them several times, and the results were always inconclusive. They had NO IDEA what to do with me.
It wasn't until I started my journey with naturopaths and natural medicine that I was able to make any progress. I do know that Spark takes clients remotely, I've worked with Dr. Cicerone for years if you wanted to reach out to them. Also, I tried all the diets you did and none worked to alleviate any of my symptoms. While it's incredibly strict, the dietary protocol on this website has helped myself an d several others who have stuck to it religiously. I'd encourage you to give it a try and see if it improves your symptoms. Sending you lots of love, light, and healing vibes during this difficult time.
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kylesquad 21d
Hey Mike, I find myself here preparing to share my story as it is incredibly similar to yours. I hope you are able to manage your mood better than me as I've been dealing with this for 3 years now too.
I'm 29 and have been forced to move back in with my parents since I can no longer hold down a job. I react to everything I eat, always bloated and uncomfortably distended, and can't workout anymore due to widespread joint pain and chronic fatigue.
Had every test done and tried everything you mentioned to no avail as well. I can't see myself existing through another year being this miserable, but have one more possibility to consider. I'm pursuing a Small intestine aspirate and fluid culture test.
The idea behind this test is that it is much more specific and can help identify certain bacteria and respond accordingly with the antibiotic best suited to treat them. I have tried rifaximin multiple times as well with no improvement so I'm holding out hope this will help.
I'm afraid if this doesn't pan out it's going to be my last attempt as I don't have the strength to continue like this. I sincerely hope you and everyone else here can manage to find your way through this. Best of luck.
http://www.beatsibo.com/forum
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