anyone misdiagnosed with GERD before MAC?
Hello, I am new here and hoping other patients can give me some guidance.
I have had a dry cough with intermittent wheezing for months and episodes of extreme fatigue for a year. The first doc I saw in January was an ENT who diagnosed it as LPR even though she put a scope down my nose and told me my larynx and esophagus looked fine. I do have regular GERD and have been on omeprazole for 6 years which is creating its own issues (bone loss). She added famotidine at night plus Reflux Gourmet - took both for 6 weeks with zero improvement. Got a chest CT in March which showed increasing nodules, tree-in-bud opacities, subsegmental lingular atelectasis and inspissated mucus in the periphery of my upper right lobe plus TIB in my lingula. These nodules have been slowing increasing for years and now have caused symptoms, yet every doc tells me it is GERD. I had a basic bronchoscopy a couple weeks ago that did not access the areas where I have issues and but he did a brush - am awaiting culture results. Three years ago the same nodules (fewer then and non-symptomatic) showed moderate glucose activity on PET. I have a history of breast cancer and melanoma so at the time they were looking for cancer, and the uptake wasn't high enough.
Fast forward to now and three doctors have told me GERD is causing the cough even though I have taken extensive protocol against GERD with no improvement. I have a complicated medical history with hEDS and POTS too but am getting little empathy or solutions from doctors. Scheduled an appointment with a gastroenterologist but cannot get in for 8 more weeks. Would like to do a ph Impedance test with him and possibly an upper endoscopy.
Can anyone share if they were misdiagnosed and how they proceeded? I feel something is off but my doctors are ignoring my symptoms and telling me to just live with it.
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Yes. I’ll try to give you the short version. Similar cough that got worse. Husband told me I needed to go to the doctor. Primary doctor- allergies and GERD, ENT same. Allergist same, referred me to pulmonologist due to spot on CT. Pulmonologist referred to Gastro -got scoped, large hiatal hernia, PPIs against my better judgment (spent over a year weaning off PPI’s due to osteoporosis). Showed all of them a sputum photo. Cycled through them all again. Compression fracture of vertebrae along the way. Finally after over a year of this went to a NP that had an awesome reputation here and had worked with a pulmonologist. She took one look at my sputum photo and asks me if anyone cultured it? NO. She says I want that cultured. Came back pseudomonas and that began the Cipro cycle. Never cleared. Eventually ended up in ER with afib and an asked them to please admit me and check my lungs. Of course not, sent me home (holiday weekend). Messaged my PC after holiday and begged him to help. I was admitted to the hospital and put on IV Meropenem. Discharged four days later with midline iv for home infusions. Different antibiotics by then. Fast forward after another round of home infusions with a severe allergic reaction the ID doctor thinks I have MAC. Came back Absessus. Treatment he ordered was not even feasible. I had my home health nurse pull my picc line and found another doctor. I thought I was finally in the right place, had a bronch. Came back Absessus and pseudomonas I think, treatment orders never got off the ground, so much miscommunication. Details would appall you.
Ended up at a genuine NTM clinic 270 miles away in Birmingham, AL. Hallelujah! My lungs had improved greatly by then, no tree in bud, Bronchiectasis in one lobe, every thing else clear! Watch and wait protocol.
The doctor asked what I had done improve so much and I told him, essential oils and airway clearance. Hadn’t started nebulizing yet. I had lost 25 lbs and was very sick along the way.
I still have pseudomonas, but have been no sign of AB . Yes, I do have GERD and the “massive” hiatal hernia and some allergies, but two rounds of specialist they all missed the true diagnosis.
Tell your doctor you want a sputum culture sent and to please check for NTMs and fungus along with the standard bacteria. It does take 4-6 weeks for results to come back, Best of luck.
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4 ReactionsThank you so much for that detailed response. I am awaiting cultures and have an appt with a GE in a couple of months, though I don't believe it's GERD.
I have a similar story although not as bad as bamaqueen.
Dreadful wet cough for about 18 months. My husband kept telling me to see a doctor. LOL. Saw an ENT thinking bad and persistent sinus infection as continuous post nasal drip and the cough. Doc reluctantly sent me for sinus CT scan and found nothing. He said see a gastroenteroligist probably reflux. First gastro did endoscopy and said nothing to see here can't help you go see an ENT. Second gastro did another endoscopy with 96hr acid monitor. He said yup you have small hiatal hernia and mild reflux. Started on the PPI'S and low acid diet. Lost weight but still coughing.
So here's where it gets interesting. When I woke up from the second endoscopy I was in a lot of pain. Apparently my heart monitor was going off and I was rushed off for a full CT as the doc was worried he had punctured something during the procedure. Turned out to be the capsule (for acid monitoring) that was causing the pain and I went home 6 hrs later with the suggestion that I find a pulmonolgist as my CT scan showed bronchiectasis. What now? Had to Google it.
Able to get an appointment at the Mayo although it took a while and I was still coughing and coughing, avoiding all kinds of foods, taking the PPI's and I was miserable.
Mayo doc was great. Sent me for tests including testing the crap I was coughing up. 2 days later a message came through to say you have an infection. Take these antibiotics. 5 days later I stopped coughing and haven't coughed since. That was 18 months ago. Couple of follow ups at the Mayo. All good for now. Doc only has me using the Aerobika for airway clearance. My BE is mild. I do whatever I want and now eat whatever I want. Sadly the weight came back. My sister in the UK also has mild BE.
Like many people I got my BE diagnosis by accident.
Despite what you read on the internet not all chronic coughs are silent reflux.
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4 ReactionsThanks for both of your replies - I am sorry for your struggles. 🙁
Have either of you ever had a PET scan? I had one a few years ago when these nodules were growing and I had moderate uptake in my lungs - not high enough to be cancer and not low enough to be nothing. Here I am years later with a worse CT and a GP who refuses to do a PET because of the reflux "diagnosis". At this point I need to wait to see the GE in two months, prove it's not GERD, ask him for another PET, and continue coughing in the process.
I had mild stable (untreated) bronchiectasis for years before developing a chronic dry cough. My proactive primary care doc trialed GERD meds (I do have mild GERD) and asthma meds -- no results. Thanks to his diligent persistence, I eventually ended up at the Bronchiectasis and NTM center at NYU in NYC. Once I had respiratory therapy, I was able to produce a sputum sample which was positive for MAC.
Many of us here will strongly suggest that you find one of the bronchiectasis and NTM centers of excellence. Search here, there is a list or maybe someone can post it? Many general practitioners and general pulmonologists will know very little about bronchiectasis as it is (a) not that common and (b) under-diagnosed. It will make ALL the difference to be treated by a team that knows what they are doing. It sounds like you are well-aware and staying on top of your conditions -- best of luck with everything, keep us posted.
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2 Reactions@msanthrope Was told that longstanding GERD, however mild plus postnasaldrip( allergic rhinitis) can result in BE and the NTM then gets lodged in lungs due to damaged BE areas. Good luck
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