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3 days ago · Tinnitus and hearing loss from azithromycin in MAC & Bronchiectasis

Thanks so much for the information and links to these articles. There is so much information out there and my only regret is that I never heard of Mac or any of this before I was diagnosed (I know; unrealistic to even go down that road) and so I’ve been trying to catch up ever since!

Fri, May 29 9:40am · Tinnitus and hearing loss from azithromycin in MAC & Bronchiectasis

So far, I’ve been lucky enough to manage this with saline nebulizer and Aerobika twice a day and I hope that continues to be enough.

My respirologist said they could substitute with clarithromycin but my ENT disagrees because he says it’s in the same family of drugs as azithromycin.

I’ll cross that if/when I come to it and hopeful for progress on the medication being developed specifically for Mac (posted here some time ago).

Thu, May 28 4:26pm · Tinnitus and hearing loss from azithromycin in MAC & Bronchiectasis

Thanks for the niacin suggestion; I’ll do some research on that. Someone on the hearing loss forum suggested taurine as well.
My hearing loss/tinnitus was from azithromycin which I stopped on the same day that I first experienced tinnitus (sudden onset after 6 months, during which I was going for regular hearing tests).

Tue, May 26 6:43am · Two bits of good news!! in MAC & Bronchiectasis

I order my 7% saline online as well. I order the same brand in the same packaging that I bought from the outpatient pharmacy at a local hospital.

It is cheaper online than it was at the hospital but not dispensed by a pharmacist so I don’t get an official receipt to claim it with insurance company (useful when I’ve maxed out insurance).

Mon, May 25 5:28pm · Two bits of good news!! in MAC & Bronchiectasis

All I can tell you is that my very confident doctor knew very little about Mac. It’s a fairly rare disease and even seasoned respirologists/pulmonologists aren’t experts in treating Mac and I needed to find someone who was.

That was hard and my respirologist was livid because I got my GP to help me but it was well worth doing.

Good luck

Mon, May 25 6:34am · Two bits of good news!! in MAC & Bronchiectasis

Another note in support of 7% saline in my nebulizer – I was on the Big 3 for 6 months before I had side effects (tinnitus and hearing loss). I was referred by my GP to a MAC specialist as my respirologist, who had an abundance of confidence but little knowledge of MAC, would not refer me.

The specialist took me off the Big 3 and started me on 7% saline with Aerobika and chest pummeling (my gracious husband was taught to do this). My bacteria count went from 3+ (out of 4) when I stopped the Big 3 to 1 in 4 months and I will do a forced sputum test next time I go in.

Anyway, my point is that the saline has enabled me to stay off medications for 9 months and my overall health has improved so hopefully I can maintain this. Perhaps things would have gone better for me on the medications if I had done both at the same time.

I wouldn’t advocate stopping medications but I completely support the use of saline and other measures to support good health with them (or without, if that works).

I am so thankful to members of this forum for all the helpful information that I’ve received, including learning to do our own research and to be strong advocates for ourselves.

Sun, May 24 12:16pm · Tinnitus and hearing loss from azithromycin in MAC & Bronchiectasis

Thanks. I’ll read through that thread.

There was also someone in this forum so perhaps she or he will reply as well if they read this.

Sun, May 24 6:51am · Tinnitus and hearing loss from azithromycin in MAC & Bronchiectasis

I recall someone on this forum talking about ototoxicity from meds and dealing with hearing loss and tinnitus as well as supplements that helped.

I can’t find that thread and I wonder if anyone has suggestions for anything that has helped with the tinnitus. My hearing loss is so minor that I’m not looking for hearing aides but the ti minus is relentless.

Thanks!