Connect
← Return to Two bits of good news!! (and nebulizing with saline)
Discussion
Two bits of good news!! (and nebulizing with saline)
MAC & Bronchiectasis | Last Active: Jun 3 10:16am | Replies (102)Comment receiving replies
Hello, folks ! Ok.... I have been reading these posts and educating myself as I go along. Question. Does anyone out there who has MAC and bronchiectasis NOT use saline nebulizing as part of their treatment? I ask because this part of therapy has never been mentioned to me and from what I'm reading, nebulizing seems to be an important addition to plan wellness. Am I missing something?? Also I have been on the BIG3 since Jan 2019. Knock on wood so far I'm tolerating it well. However, I did start to experience some tinnitus ( ringing and whooshing in my left ear). When I mentioned this to my ID doctor's nurse and she "checked with the doctor", I was told " Dr. said that it couldn't be the meds, it must be something else." Yet, I've read over and over MAC patients on these antibiotics do most likely at some time develop tinnitus. I really like this doctor but I'm getting "concerned" that she may not be that learned in MAC/Bonchiectasis. I'd appreciate y'alls input. Thank you !
Replies to "Hello, folks ! Ok.... I have been reading these posts and educating myself as I go..."
Hi Toni,
If your doctor told you that 'it couldn't be the meds' causing your tinnitus, I would look for another doctor, ASAP. Azithromycin and Clarithromycin are sister drugs that are in the macrolide family. Hearing loss and tinnitus are a KNOWN and common side effect of these macrolides. Link below to the National Jewish video discussing NTM treatments and management of side effects. You may want to educate your doctor by forwarding them this link, too 😉
I was on the Big 3 for 6 months but I was taken off azythromycin the same day that I woke up with tinnitus (and what turned out to be hearing loss). The tinnitus has never gone away and my hearing never recovered.
Connect
Hi Toni1132. In 2017 I was diagnosed with bronchiectasis and MAC avium strain. Once recovered from the “initial” sickness (took 3 months), I met with infectious disease specialist to determine treatment. my system does not tolerate meds well and because I was able to function without feeling poorly, I determined to not start treatment and so far have not started any meds for Mac or bronchiectasis. I do use an over the counter regular saline spray twice a day (found by allergy stuff) recommended by my pulmonologist. Nebulizing is something I can go to, but because of my sensitivities my first option is always the path of least resistance. My Mac has remained pretty stable and is watched carefully with CT scans.