Worst luck with doctors and mystery symptom

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Summary of acid reflux issues for the past dozen years.

 I was going through a relationship breakup and one night experienced horrible pain on my left chest.  I thought that "heartbroken" was literally happening to me.  The pain subsized over night but from that point forward, I had a terrible sore throat. Months later, I started having heartburn.  After months of seeing an ENT and GI doctor, I was diagnosed with acid reflux.  I had all the tests done, including 3 endoscopies over the years. Basically the diagnosis is that I have mild inflammation but nothing has really popped up or panned out.  And yet for years, I have heartburn and a sore throat.

I have not had much luck with the doctors I have seen.  They tend to be dismissive and push PPI drugs on me.  Even when I tell them PPIs don't really work but leave me with terrible side effects.  My latest doctor, at least listened and didn't push a PPI on me, but instead prescribed rantidine.  Which luckily hasn't caused me any side effects but also doesn't help much with my acid reflux.  She scheduled me for a bravo/impedance procedure today, to be done by another doctor at the hospital.  I was getting ready to be put under anaethesia when a nurse tells me that it impossible to do bravo and impedance testing at the same time.  I asked for the doctor who was supposed to do the procedure and he explains to me the issue.  And since my regular GI doctor wasn't around, we weren't sure exactly what she wanted (and what was submitted to the insurance company for approval). Long story short, there was so much confusion that I decided not to have anything done and went home.  Thus the frustration and why I'm here.  I do feel cursed by this damn disease.  Why can't I or the doctors figure out what's wrong?  

The kicker is this one msystery symptom that has been grinding me down.  Ever since that "heartbroken" event, I have, to put it bluntly, intermmittent, extremely foul breath. From over 12 years, the best I can describe it that throughout the day, I get wafts of really foul rotten egg odor coming out of my mouth.  Sometimes I can smell it and it's really awful. I can't imagine how foul it must be to others.  When I can't smell it, I know an episode is happening because I can see people visibly jerk back and react when I'm talking to them.  And no, this isn't all in my mind, because my mother was the first person to point this out to me.  It explained why for months I noticed people jerking back from or turning away from me.  And why I would sometimes smell of rotten eggs. I also asked a friend to be frank as we spent an evening together.  I explained to her the situation and she promised to give me an asssessment.  By the end of our dinner, she told me she did not detect regular bad breath from me but that a couple of times, there was a really foul odor from me as I was talking.  So it's not constant, but  what can I say...it's like oral farting.  And no it's not burping, I burp a lot but that's not when maladorous episodes happen.  It's more akin to like a waft of the odor seeps out of my stomach and travels out of my mouth. This happens when I'm talking, when I'm silent, when I'm alone, when I'm with people, when my stomach is empty, when my stomch is full...it happens randomly throughout the day. It happens when I'm on PPI or other acid reducers and when I'm not.

It has affected my social life and career immensely as it's disheartening to see people reacted viscerally to something coming out of your mouth.  Luckily I have friends, but I pretty much stick to staying at home and found a job that allows me to work from home.  I have let a lot of life and opportunities pass me by.  Don't date, don't have a partner, treading water career-wise, etc.

This symptom started at exactly the same time as my acid reflux symptoms so though I can't be 100% sure, I'm convinced they are related.  And yes, I have seen doctors and dentists to rule out nasal and dental causes.

I'm not sure what I'm hoping to get out of this thread. Maybe I just needed to vent.  Or maybe there's a one in a million chance there's someone out there who knows what I'm going through?  And has some answers to share?  Please do not suggest I chew a mint or use mouthwash...I hope it's clear that this is not traditional bad breath...

 

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10 Replies

  • Posted

    I wanted to add that I have gingerly explained to my doctors the rotten egg odor issue but they just move on from the subject.  They either don't want to discuss it or tell me it's not important.  The only doctor who has taken it seriously is a GP doctor I have seen once--for my annual examination. She was the one who recommended I see a GI specialist again (after years of not doing so and just living with acid reflux).

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  • Posted

    Hi Jodo, I have had years now of acid reflux and just discovered that my hiatal hernia could be the cause.  A lot of people have hiatal hernias and don't know it.  None of the doctors told me it could be the cause of all my heartburn.  I'm like you the meds were not helping, probably because with the hiatal hernia its not effective?  Worth looking into in your case.  Good luck!

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    • Posted

      Kathy,

      From the tests I have done, no reports of HH nor H Plyori. I have asked.  Though I have read HH, especially, sliding ones, are difficult to detect.  

      Ten years ago, I had the following tests:

      Endoscopy

      mamometry

      PH test

      Test where they checked to see how long food stayed in my stomach...(can't remember name)

      All of which fell within the norm.  The PH test showed some acid but nothing extraordinary (interestingly, nothing when I slept.  Which makes sense as I started out with LPR).  The doctor concluded I had acid reflux and needed to stay on PPI.

      I have had 2 subsequent endoscopies and again, nothing out of the norm, aside from mild inflammation.  Since the tests above were done 10 years ago, my current GI doc wanted me to do a bravo and impedance test.  For some reason, she didn't know they could not be done at the same time...I don't know what the heck is going on and am waiting for her to call me.

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  • Posted

    Hello jodo, im on the same boat, you're not alone im dealing with my own acid reflux problems as well, my worst symptom is prolly that when i drink water or eat i feel it go down my throat and to my lower left side, everyday.

    I know its stressful, but have you tried switching to a vegan diet?I've heard by many that it has greatly impacted them, and that is what im going to switch too.

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    • Posted

      Good luck with the vegan diet.  I've not tried vegan but did do FODMAP and of course modified what/how I ate over the years.  Some of the worst burning is eating hard to digest foods.  And for me that includes vegetables--especially raw.  Some of the worst episodes were after eating salads, big meal ones.  I've learned that I do better with cooked vegetables as raw ones are difficult to digest.  Simple salads are better as opposed to salads with a large variety of vegs to digest.  

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  • Posted

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  • Posted

    Hi,

    Elevate the head of your bed 5-6 inches...this will help settle the nightly reflux in your stomach...no nightly reflux means no heartburn days.

    The sulfir odor is cauaed by anaerobic bacteria living in your mouth...these bacteria secret sulfur compounds as waste.

    Use an electric toothbrush and carefully, thoroughly brush your teeth 3 times per day...floss twice per day...brush and scrap your tongue clean of the white anaerobic bacteria eliminations 3 times per day...gargle with a non alcohol containing mouthwash 3 times per day...keep dental appointments twice a year...have your teeth professionally every six months. Keeping you mouth clean will reduce the locations for these bacteria to hide out.

    Anaerobic means without oxygen. Salvia contains oxygen...keep hydrated.

    You breath what you eat. If you follow the above, you should be odor free within a few days. If not, speak with your dentist about it.

    kind regards

    judith

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    • Posted

      Judith, please read my posts as your post offers standard advice when I've posted that my breath issue isn't the run of the mill bad breath.  And I've already posted that I've seen ENT doctors and dentists.  I also posted that I had a PH test and it showed I didn't reflux while I slept so I'm not sure why I should prop my bed up?

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  • Posted

    After much harrassment, the hospital rescheduled me for a PH Impedance test.  I went in this morning and had the catheter inserted and undergoing monitoring as I type.  The monitor shows the PH level and it's very difficult to stop staring at it ;0  So far, I've been mainly above 7.  I really do wonder if I have acid reflux at all!

    The odd thing is I was instructed to take my medication.  I would think the test should be while I'm off Ranitidine?  Drinking water brings down the PH level slightly--I guess the water I'm drinking is slightly acidic.

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    • Posted

      Oy, the gagging sensation is pretty terrible.  Talking triggers it so I have had to reschedule my calls today.  I read sipping water helps--which does a little but so far the best defense has been to simply keep my mouth closed.
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