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Hi @pbleonar2 I haven't had time to read what your problem is – but I just finished 2 (separate weeks of evaluation/consults at Mayo – and am VERY disappointed, rather disgusted; in fact. They actually did diagnose my problem – or what seems to be a big part of it, and while I know from my own research and info that other centers make available to the public – that my problem is quite treatable.. and in many people, good resolution of symptoms can happen…. in fact. I've had a positive response to the first round of antibiotics I was put on. however, from what experts in this area do, I should have a little longer course, and possible another AB, based on the type of bacteria I have. However my GI doc, who is a Fellow, appears to have no interest in "fixing me", nor looking at any of the research or information from a major center that Specializes in SIBO., nope, he wants me to go to a "chronic pain program"… and as you say, "learn to live with it'! I'm thinking ,, WHAT? You're giving up already? I haven't even had a chance to go through a decent treatment protocol, and i wrote these concerns to him along with the fact that I am getting sick from the Miralax he wants me to take (BAD for SIBO), which I told him before… he thinks constipation is causing my pain.. I KNOW it isn't.. I now know the SIBO is likely making me constipated at times.. but now I have diarrhea thanks to his "treatment". The he got mad because I was asking him to many questions on the portal (I thought he might want feedback on how I was responding.. I asked for a prescription for something for my SIBO protocol that he actually suggested, and 2 weeks, I can't get him to answer.
I told the urgent care Doc (I had so much diarrhea I was really dehydrated).. she said, get a different doctor, and go to Cleveland Clinic.. She said that's what Mayo does.. you see the people in training.. that's why you don't see anyone who "specializes" you your problem (I don't know the initials.. it would help if people write things out maybe. if you don't know SIBO, I will). I've heard Cleveland Clinic is really good for GI problems from several other people, so I'm thinking of going there next.
It's probably not popular b/c this is Mayo's site, but maybe the feedback is something they need, and if they want to improve their GI care, they'll listen. It's terrible I (and my insurance company) have paid them over 20K , and I'm on the internet coming up with my own treatment protocol, found a SIBO diet from Cedars-Sinai in LA (they sent me to a dietician who knew NOTHING, told me to eat three times a day and eat a lot of Fiber (EXACTLY the opposite of what us SIBO people should do… LOW fiber for us), so she gave me BAD advice.
I hate to say it, but after 3 bad experiences, I'd move on. Don't know where you live, but Cleveland Clinic is in midwest, so maybe close. The SIBO centers are on east and west coasts, I'm trying to see if I can get someone local to write scripts for me. But it's really sad.. that there is treatment for me.. and the doctor won't write the scripts.. and I told him I was miserable… on Aug 21. This is substandard care, IMO.
And no, I don't want to "live with it", that was why I came there.. I have a treatable problem, and I think there are other things that could be ruled out. The GI Fellow also didn't have correct information about some other things.
Other places, you make an appointment with a specialist, and see them. I wouldn't mind seeing a Fellow (someone still training) if they were open minding and wanted to learn and were open the idea that there is so much to know nowadays one doctor can't even know it all, and work with me… HE could actually learn a lot too, which is what he is supposed to be doing. But he doesn' t give a damn (sorry can I say that), it seemed to fit. After all, he doesn't get paid for answering questions on the portal. I should drive 4 hours and make an appointment, so he can charge me $400 to write a prescription. That is crazy.
You can't change people, if the docs aren't taking you seriously they aren't going to change. Like the one I saw. I don't bother to waste my time. Cut your losses. I learned the hard way, spend too many years with docs like that, and all I did was lose years of my life. Check into the Cleveland Clinic… you shouldn't have to beg for decent care.
Good luck and I'm with you..
Oh.. FYI.. I just met a retired Family Practice doc who has SIBO (my problem) and was looking for info.. I sent him my collection (I've done a LOT of research).. he's actually written a book and has a website calling "managing your doctor".. it's all about what i've been kvetching about .. and he agrees is a huge problem with the medical system.. he wants to help people learn how to be their own advocates , how to be assertive about getting care… …I just ordered it, looks fabulous! You can also write him on website.. doesn't look like many people do, but he's interesting in hearing stories from people who have had to basically help themselves b/c the system didn't….
Replies to "Hi @pbleonar2 I haven't had time to read what your problem is - but I just..."
Hello , I've read your post for 2019 , have you found a doctor or solution that has helped solve you problems ?
I'm desperate because this is all tertiary care has given me so far. I understand them when they say dysbiosis is difficult. What they seem to dismiss is the idea that there is some 'thing' that's causing the dysbiosis. While I'm sure the guy I saw is content on insisting dysbiosis just magically appears sometimes, I am not. There's a reason for the problem. Your body's microbiome doesn't just go off kilter from isolated stressful incidents. Whether it's tropical sprue or some furtive parasitic organism, something is causing all of this.
Personally, I think it's just apathy among doctors. They face large volumes of patients and they don't have time to devote investigative work for diagnostic testing to arrive at a lucid conclusion. And I understand it. I get it. I work in a bureaucratic system myself. BUt I'm willing to pay funnel extra money into this for more serious inquiries from doctors and they're staunchly set on sticking with whatever idea they've inculcated in their head.
I'm tired of this and I'm tired of being told to live with it. I guarantee if they had the same problem and had to stick with the same strict diet day in and day out, they certainly wouldn't be so damned smug with their closed-minded conclusion. I get the microbiome is a complex system, but it DOESN'T just go off and do it's own thing permanently without something else affecting it. Parasitic infection, hypochlorohydria, tropical sprue, and many other things can impact the microbiome– and if they're not addressed the problem never goes away.
So again, I'm begging this organization to address the topic, and if they can't come up with something cogent and collected to answer it with, send us someone outside the clinic that can address it and start recommending more detailed testing. This has been a 7 year nightmare, and it's absolutely ridiculous how many doctors are quick to dismiss this. And if I raise my voice during the interview when they start being dismissive, then I"M the problem.