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Replies to "I'm desperate because this is all tertiary care has given me so far. I understand them..."
Sounds like we are coming from the same place 🙂
It is difficult.. but that is why (in my case) I thought going to a major center would help.
I agree with your conclusions I talked about, and it's true. You have to find a doctor who is interested enough want to investigate your problem and learn, or be open to you bringing them information (i.e. in my case I have gotten a good treatment protocol from a major center that specializes in my problem, and just asked the doc if we could try it – it's from a major center, based on research, not from some unknown quack). I was ecstatic when I met Dr. Neustatter, who says there is so much to know nowadays, so much information, even one doctor can't know it all! I thought my doc would be happy that we had something to try. Instead, apparently it "offended' him and he is just ignoring me now, not responding to any messages through that portal system we are supposed to use to communicate. I asked him for a prescription for something that he had even listed as a possibility, and it's been 2 weeks and I've heard nothing. In the meantime, I'm suffering, and he knows it, because I told him. That's just brutal! I can't even believe it!
And sadly, that has also been my experience, if you try to stand up for yourself, or disagree with them (and I am very diplomatic, try to be polite and sensitive), you get branded a "problem" patient, and yes, you are the problem.
I'm glad (from the sound of you – that you still have the 'fight' in you, and haven't given up! We know our bodies! There is help out there. It's a long journey in getting to it, and you have to find it all on your own.
I'm going to have to read back to try to understand your history/ problem if I can, and if any of what I've learned applies to you I'll pass it on. You are not the "problem", and don't ever let anyone make you feel that way! This is a problem with our healthcare system, and you are not alone, in fact; your experience is all too common.. hence Dr. Neustatter's website and book.
Well, good luck trying to get help from Mayo.. let me know how it goes. I don't think they would want to send someone from outside the clinic b/c I guess they would think that wouldn't be good for their image (when actually I would be impressed by that). All the competition and 'politics's. I think you have to go get that help, but you can certainly try and see.. and yes, I agree they should! I know I even mentioned to my Dr I would be happy to switch to another doctor if he found me too "difficult" (I didn't want to say my case, I was trying to give him an easy 'out'.. and maybe I'd get someone more interested in my problem, that's fine. But he just won't answer me at all, he's just shut me off. That's really frustrating, when I feel I was going out of my way to be 'nice' to him, and you know what, I shouldn't even have to do that. Now I don't even know what is going on.
So where are you at? Do you have more appointments? Have you written to anyone asking for help, have you gotten any answers?
I suffer from the same condition and feel your pain. I've been to countless doctors and have even seen a psychiatrist who thought it was all in my head. I've been diagnosed with SIBO. What ever I have is causing the SIBO. I suffer from breath that smell like a fart, feces and butt odor. When under stress the smell come out in different parts of my body. I'm on a round of rifaxin which I've taken in the past and did not work. I believe that it is a parasitic. I visited South America got food poisoning and haven't been the same since. This condition is effecting my life traumatically. I don't like to go out, because of the constant comments. I am a teacher. The kids refer to me as dragon breath. They cover their noses when I speak or put their hoods over their face. No one wants to sit next to at meetings. The staff whispers and talks about me behind my back. The principal is trying to get rid of my despite being a great teacher. I've tried so many things. I have a 3 drawer cabinet full of supplements that don't work. I just tired! I really concerned about losing my job because they think it's a hygiene issue when I take two showers a day. I'm so tired of the medical community not taking this issue seriously. It seems like there should be an easy fix. So many people suffer from this condition, I don't understand why people are ignoring us.
I suffer the same issues and its awful!.. i dont know how i do it but its very embarrassing and as i read these comments couldnt help to laugh because it really fing sucks… i experience it every day after eating meats, dairy, certain veggies i havent had the discipline to figure out. I drink alot of water and trying to reduce sugar intake, now trying to avoid anything with corn. I read somewhere to avoid anything that can ferment. Also bacteria from the lower intestine has migrated to the stomach and esophagus causing early breakdown and sulfur breath or poop breath. Please let me know if you have looked into this and how your current treatments are going..
Google making Natto. It’s excellent for the gut. Also take vitamins D3 and K2. I buy K-vitamins.com