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Had to stop Big 3, ototoxicity and switching pulmonologists
MAC & Bronchiectasis | Last Active: Aug 26, 2025 | Replies (25)Comment receiving replies
@njlynn I was told for a year that my CTs (four! - June, Sept, Dec., May) were “stable”. When I went to NJH they said nope, “progression”, with cavitary disease. How did my local pulmonologist and local radiologist not understand that the development of new cavities is not “stable” disease but progression (the very definition of progression!), I have no idea. I had NJH walk through all four of my CTs with me and show me the progression, which they did and frankly even to my untrained eyes once they showed me where they were looking and what they were looking at, sure enough, the progression seemed obvious. But I have shared here before that every single clinician who has discussed my CTs (at least 6) has said something different (about the very same images). It’s maddening. But true. No one has discussed surgery with me (yet), but if it is ever raised I will definitely want multiple opinions. I will note that I have heard multiple times that surgery still requires antibiotic use before and after (generally amikacin), I believe someone here told me NJH won’t do a resection without the antibiotics. Wondering how that would work in your case given your hearing loss would make amikacin contra-indicated.
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I had just the opposite happen to me, which is why I am so thankful I went to NJH. Keep in mind, a lot of doctors rely on the CT report done by Radiology. I had multiple positive M. Abscessus cultures and my CT report stated I had a small cavity-which is absolutely disease progression. My local ID doctor put me on Arikayce. Linezolid, and Nuzyra. In just 3 weeks, I had constant nausea, tinnitus, slight vision loss, lost my voice, elevated kidney enzymes, and memory loss. I was at NJH during my 3rd week on antibiotics, where they did an x-ray and CT and after a team of doctors at NJH looked at my CT, they concluded, it was not a cavity, it was BE-enlarged airway that looked like a cavity. Additionally, after my count was determined to be 34 or 37, I could go off the antibiotics-"for now". I went to NJH for a 3 month follow up and had a CT and the radiologist report again stated that I have a small cavity. My doctor talked to the radiologist, and he took another look, and agreed it was the BE. It looked so much like a cavity. I bet there were at least 5 or 6 doctors that initially looked at my CT the first week I was at NJH and were able to conclude it was BE. I'm so sorry you had the reverse happen. I'm just happy I went to NJH and during the initial evaluation (which is a team effort), the determination was made. Though they may look alike, they are entirely different. Once cavities are formed, treatment is more difficult. Though, I have read that there are certain antibiotics that work better in closing cavities. Good luck and I am happy you are now getting good care.