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4 days ago · Tinnitus and the "Big Three" in MAC & Bronchiectasis

Hi Kathy @kathyhg Yes I also got tinnitus, soon after starting the Azithromycin — before I even started on the Rifampin. The Azithromycin (and Amikacin if you ever need to use that) is really the most likely cause.
You need to have a follow up hearing check (audiogram) very soon to see if your hearing has got worse. Tinnitus can be a sign of hearing loss — but not always.
The tinnitus I got has continued but hasn't really got any worse over time (I've now been on the Big 3 for 9 or 10 months), and my hearing isn't worse than the baseline audiogram done before starting the Big 3 drugs.
Azithromycin is probably the most important drug for treating Mycobacteria, so we need to find acceptance and learn some new things to help us adjust to changes like this. Usually I can now accept it and ignore it. If it's ever bugging me, I put the radio on or play some music to mask it. (I often use a small radio with the sound turned down, like white noise, beside my bed so I have no problem getting to sleep).
And remember, it's possible the tinnitus will be lessened a bit when Azithromycin is stopped after the treatment is finished.
I wish you all the best, Annie

Mon, Sep 2 12:08am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker Please keep safe — thinking about you often Terri and hope you're okay

Sat, Aug 31 2:13am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@heathert @boomerexpert @fdixon63 Thanks Colleen and everyone — thinking of you all. And my thoughts are with people in Florida too. Annie

Thu, Aug 29 1:52am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@heathert Hi everyone, it looks like nobody has posted for a while — unless there is something wrong with my access to this forum site. I hope everyone is okay and I wish you all well, Annie

Sat, Jun 29 2:11am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot of further clinical testing of SPR720 for TB. http://www.tbonline.info/posts/2019/6/23/spero-therapeutics-announces-collaboration-bill-me.

SPR720 has also had demonstrated research success (in vitro and in vivo) with NTMs . It's been shown to be safe as well as clinically effective against MAC/MAI and Abscessus. https://sperotherapeutics.com/pipeline/spr720-non-tuberculosis-mycobacterium/.

So we might finally see some new drug action a lot faster than we would have if left to Big Pharma alone!
Hugs to all and all the best
Annie

Wed, Jun 19 1:05am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@lampstone Thanks for letting us know this Pat — it explains a lot to many of us. Please keep in touch. Your advice and kindness is much appreciated. I wish all the best for you — please let us know what comes next and how you're going. Hugs to you

Wed, Jun 19 12:34am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@stsagris Sorry to hear about your step-mother's anxiety — but we sympathise and understand. I agree with others about the psychological side effects of the Big 3. But please also note that getting this diagnosis, and finding out about the risks and how weak your immune system is now, often causes a great deal of anxiety and emotional distress too — at least for several months. This can take time to adjust to, but the person with the illness will slowly begin to adjust over time. Best of luck to you and your step-mother

Sun, Jun 9 3:12am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@heathert Thanks Heather — you are always so kind and helpful. Hugs