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Esophagitis, acid reflux and now trying to taper off Nexium...any advice appreciated.

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  • Esophagitis, acid reflux and now trying to taper off Nexium...any advice appreciated.

    Hi, I have been reading this section of your forum for the last few days and found some very helpful suggestions. I would appreciate getting some more advice/input from people who have been through something similar as I am having a bit of trouble right now. I will do my best to summarize as succinctly as possible what I have been through in the last few months.

    I had shingles the first week of January 2014 and recovered pretty quickly on Famvir for 7 days. It was a surprise that I came down with shingles as I am a 48 year old healthy and active woman and rarely had health issues before. February 16th I woke up to burning of my arms, back and chest that did not abate. I went to urgent care (it was Sunday) and they had no clue. The next day (Monday) was President's Day so I saw my internist Tuesday and he also had no clue. He told me to wait and see. Meanwhile my upper body was burning on a scale of 1-10 about a 4-5. Not pleasant and constant. By Wednesday afternoon it stopped (temporarily but returned the next day) and by that night I had developed a lump in my throat/esophagus and the next morning a terrible squeezing of my chest. It was very painful (7 on a scale of 1-10) and I thought it could be esophageal irritation so I started 20 mg OTC Prilosec and saw a gastroenterologist the next day (Friday) and he
    scheduled an endoscopy and biopsy for that Monday and put me on 40 mg omeprazole AM and 300 mg Ranitidine at 8PM every evening. Endoscopy showed moderately severe esophagitis and gastritis, acid reflux and negative for H pylori.

    I continued on those meds for 4 and a half weeks and the burning of my arms, back and chest fluctuated and the gastroenterologist said the arm burning could not be due to acid reflux. I obtained some but not a lot of relief on the meds and started to get dull and sharp chest pain (different than the squeezing pain) while on these meds after a few weeks.

    I obtained a second opinion from a gastroenterologist my dermatologist goes to (the first GI doctor was an emergency situation and a friend recommended him and I didn't care for him and neither did my dh-he was running a factory basically trying to push every procedure under the sun). I liked the 2nd GI doctor and he was puzzled why my symptoms were not all better so he put me on 60 mg Dexilant bid and did another endoscopy because the first GI doctor did not biopsy the esophagus or take pics but just biopsied the stomach which he thought was odd and suspect. Anyway that second endoscopy and biopsy was clear and he switched me to 40 mg Nexium bid because the Dexilant did nothing to improve my symptoms. And he referred me to a neurologist and esophageal specialist.

    Neurological exam and head and neck MRI were normal save for UBO's (unidentified bright objects seen in migraine sufferers) in my brain which are unexplained because I do not get migraines. Neurologist gave me Lyrica for the unexplained burning pain which I do not plan on taking and told him so but he insisted and mailed me the Rx just in case.

    The esophageal specialist scheduled me for manometry and impedance testing May 8th to check motility and ph. Not looking forward to that. In the meantime I also had an appointment with another recommended esophageal specialist because I was waiting to see who had an earlier opening for me/cancellation slot and I just decided to see what he would recommend since my appointment for the ph testing etc was not till May 8th (at this point it was April 15th) and I was in moderate discomfort.

    I also saw a cardiologist and had an echocardiogram that was normal as well. She prescribed Norvasc (very low dose since my bp is 110/70) to see if it might relax any possible esophageal spasm but the first esophageal specialist said to forget it as it was too low a dose to do anything and also he didn't want to Rx anything till I had the specialized esophageal testing done May 8th.


    The 2nd esophageal specialist whom I saw April 22nd does not think it is acid reflux and wants me to get off the Nexium because it is not a good drug to be on if you do not have to be on it. Which I already knew from reading articles and info on the internet and such. And he doesn't want me to go for any more invasive testing at this time. Which was a relief to hear at that point because I was worried about getting a tube down my throat for 24 hours but will do what I have to for a diagnosis and relief. So I came away from that appointment feeling somewhat hopeful. Except now that I have been trying to taper I really do think I had acid reflux as the burning is coming back stronger than when I was on the meds but not stronger than when I was off them when I first developed the burning and chest squeezing. It is possible to be just rebound I suppose but I obviously had acid reflux before so why would it just get better if I went off the meds if it existed
    before.


    A bit of background on me. I am 48 yo, happily married with 4 rescue kitties and had been pretty healthy before this.

    I am 5'6" and before the esophagitis/acid reflux started weighed around 108-110 lbs. I now weigh only about 104-105 due to feeling so awful but I am doing my best to eat and get my weight up again.

    I eat mainly a vegetarian diet and exercise (cardio) every day and do weights 2-3 times a week. I love being active and eating healthfully and was in good spirits before all this.

    My only medical conditions were rosacea (diagnosed in 2006) for which I was on low dose (40 mg) doxy for 8 years and now have discontinued due to the fact it might have (I say might have because no one knows for sure) contributed to the esophagitis diagnosis (if that was really what I had since no biopsy of the esophagus or pics were taken at that initial endoscopy). And the other condition I have is Raynauds which really caused no issues for me save a few winters ago when I developed chilblains.

    I also saw a rheumatologist since the first esophageal specialist wanted CREST ruled out and that rheumatologist (my mom's long term rheumatologist) said that I was fine. He also did a CAT scan of my chest (normal) and prescribed klonopin to see if it relaxed my chest muscle as that was a theory as well. Again another med I hope not to take because I have never taken benzos and I don't want mood altering drugs if possible.

    So since last week (April 22nd) I have been trying to taper off the meds. To recap I took 40 mg omeprazole and 300 mg Ranitidine for about 4 and a half weeks in mid Feb to mid March and then was switched to really high doses of Dexilant and then Nexium bid for another month or so and now am trying to get off them and see if I can. I have also started taking DGL and ordered from klaire labs Ther-Complete and digestive enzymes-due in part to this forum and in part to reading certain authors such as from this article
    http://afibbers.org/resources/heartburn.pdf

    The probiotics and digestive enzymes will not be delivered till mid week because I didn't order them till Friday so in the meantime I am taking DGL many tabs throughout the day and drinking some aloe vera (not sure it's helping but hopefully it's not hurting). I am taking about 20 mg Nexium a day to q.o.d and 75 mg Ranitidine at night because I am definitely experiencing an exacerbation of my burning and chest squeezing and I am very apprehensive of developing another esophagitis because that was awful and took a while to feel any relief from back in February when I was first diagnosed.

    I am so sorry for the long winded post. So much for succinct summarization lol. I would so appreciate if anyone could give me some advice on how to taper better or if you think I should taper at all because I am scared that whatever caused the acid reflux to begin with (weak LES? hiatal hernia?who knows the doctors certainly don't) will not be gone and once I am off the rebounding of the tapering of the Nexium the original acid refluxing will still be there causing damage to my esophagus, stomach etc.

    It's been a surreal nightmare and conventional doctors and the such have offered little help and reading all the naturopath solutions have been helpful but worried that will not take care of the original cause of the reflux being I already eat healthfully, avoid any spicy foods, alcohol due to my rosacea anyway so no real lifestyle changes due to the fact I am already doing all that stuff and have been doing all that stuff before save for sleeping on an incline which I do by putting my pillows against the headboard making sure I have elevated my torso above the rest of body.

    Do I have too little acid or too much? I don't know since none of these doctors offer the Heidelberg capsule test but not sure it would make much difference because obviously acid is getting through my digestive system causing damage throughout my body.

    Could it have been the shingles (herpes zoster) virus that wreaked this havoc on my body? The doctors don't think so since there was a full month lag b/w the shingles and the original esophagitis/acid reflux symptoms.

    I am overwhelmed as I have seen more doctors in the last 2 months than in my entire time on this earth with no more answers now than when I first began my search for relief. Any help would be much appreciated. Thanks for reading my terribly long post

    Sincerely,
    Hayley

    ETA: And a very big thank you to NYer for her informative and helpful thread!

  • #2
    Just an update in case anyone is reading this fyi.

    I have now been off the PPI's for 9 full days (YAY!) and the H2 blockers for 4 days (YAY!) and while I was getting what I think acid rebound it seems so far at least to have quieted down and I have been feeling a bit better this last week. I am now also taking a probiotic before my main meal everyday (Ther-Complete from Klaire Labs) and digestive enzymes with every meal. I am switching up the digestive enzymes so I take 3 different ones a day to cover all bases and it seems to be helping. One has bitter herbs in them which is supposed to be helpful regarding GI symptoms.

    I am also drinking only bottled water and herbal teas. I just added alkaline water to this mix and so far so good. I make sure not to drink the alkaline water near mealtimes as it can interfere with the digestive process and also keep water intake to a minimum during mealtime for the same reason. I am finding the herbal teas from Traditional Medicinals to be soothing specifically heartburn soother and throat coat. However do not use Throat Coat if you have any health issues involving hypertension or kidney problems as it contains licorice.

    I still wonder what caused the acid reflux to begin with being I never had any problems like this ever. I keep thinking was it the shingles virus that started this whole fiasco and if so will whatever damage it did to my body heal? I still don't know what the future holds re my prognosis but I am taking it one day at a time.

    I am still struggling with what to do re specialized testing scheduled for this Thursday. I am supposed to have a manometry test and 24 hour ph impedance test done but I am quite hesitant from what I have been reading though there are a number of people recommending I do these tests. I am torn and have to decide. I was all decided not to go through it but my dh really thinks I should because we need to get the full picture regardless of whether it yields any new info we have to try. The doctors are confused as to my diagnosis because I was still getting chest pain and squeezing on max PPI's and I think that's why they ordered these tests.

    My main worry is if I cancel these tests and I start getting worse again I only have myself to blame for not getting all the info necessary to rule out or in certain conditions (i.e. esophageal spasming, esophageal hypersensitivity, weak LES etc) and then I have to go back to the beginning and wait a long while for these tests because you cannot just get them on demand. I waited a long while for these appointments and so that is one of the reasons I am so hesitant to cancel. But I also believe in do no harm and these tests look to be more unpleasant and invasive than endoscopy and other tests I have undergone and I am worried about potential risks of having them done.

    If anyone has any thoughts/advice I would be so appreciative because I really am going back and forth on these tests and would be grateful for any more clear headed advice. Thanks so much and hope everyone is having a good day!

    Best,
    Hayley

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    • #3
      does your veg diet include fruits? raw onions? high-salt? ETC.

      Does your "vegetarian" diet happen to include:
      ...alot of fruits?
      ...alot of acidic vitamin c vs. tiny amount of berry-chews?
      ...alot of Non-sauteed onions/garlic?
      ...alot of salt?
      ...alot of artificial sweeteners such as Splenda?
      ...alot of EITHER non-fat OR high-fat food?

      I personally find that the best "probiotics" is Probiiotic Yogurt.
      I also follow my own protocol (low-fat, lysine foods)
      my protocol FYI: https://lysine4flu.wordpress.com/

      As for your doctor saga:
      I've been to & fro doctors most of my life (I'm middle-aged).
      The vast majority do not help.
      Most are into the BIG-FANCY words (but not empathetic wisdom)

      They stick a label on you & close the drawer.
      Another label on someone else & close ANOTHER drawer.
      Never the twain meet
      ...not even if they've similar causes (since big-pharma isn't into connecting dots - or drawers, for that matter...

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