(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@anniepie I realize you didn’t ask me that, but I did get tinnitus from the azithromycin. (Irene5)

@anniepie I had tinnitus off and on from back in the early 1990's. It was never too loud and would go away often for long periods of time. My tinnitus became pretty severe this past summer and it is either from the azithromycin or tobramycin - it began when I was finishing up the Tobi and starting on the azithromycin, so I'm not sure which one got it going but now it's loud and almost constant. I have learned to ignore it a good deal of the time, but sometimes it's just not possible. Just another new "normal." I have seen a commercial on TV about a group that can help people with this and read an article about it. If you Google, you can probably find some information but my ENT told me it is what it is. Linda

@anniepie I'm not on meds so don't know...

@anniepie I have also had ringing in my ears (mainly noticed it at night) from the meds, and upper hearing loss ,but not to bad, my audiologist said just try to ignore it and you wont notice it so that is what has happened. She also said that everyones is the same but the more we concentrate on it the worse it seems. I dont know if this is always the case but it worked for me, unfortunatly my hearing loss is still there tho.

Hi everyone, I am posting for the first time though have been reading this chat site since I was diagnosed with MAC this past July. I had had symptoms for about three years of the cough and shortness of breath during exertion but didn't go to a doctor until I was coughing up blood. The first doctor gave me Azithromycin and told me not to come back unless the cough persisted. Then i changed doctors. I have a good pulmonologist now who has been treating me with an inhaler of salmeterol/fluticasone powder and an emergency inhaler of advair (which I rarely use). Recently, I felt the coughing had lessened somewhat as I began eating a anti-inflammatory diet (i.e., get rid of all the things you like), one of the components of which is celery which supposedly reverses inflammation. My doctor doesn't seem to want to treat me with the antibiotics; I guess because my symptoms don't bother me enough to be worth it. However, a week ago, I became suddenly aware I was coming down with something, felt like a flu, began to be achey, got a fever and a headache and my cough became worse and really chronic (productive - tons of green sputum), I stayed in bed the next day and the next and the next figuring it was a long-lasting flu. But the cough continued to the point where I asked my doctor to prescribe me some hydrocodone so I could sleep. This worked the first two nights, but now the cough continues no matter if I take a tspn of the cough medicine or not. When I went to see my doctor to get the prescription (day 3), she did a flu test and said, "well, it's not the flu." She said to call if I didn't improve by day 5. I continued to have cough plus low fever (100 and 101.5) so I got a script for Azithromycin (today is day 2 of 5 days), and fever is gone but I still feel this rawness (as if someone was blowing an icy wind down my throat) in my esophagus and I have a constant cough reflex, still productive, but less so. Then I wondered, maybe when you catch a virus and you already have an infection, could the infection get worse? Does anyone have experience of getting a virus, flu, or cold while not being treated for MAC? Thanks, and sorry to be so long-winded. Wanting to know if I'll ever be able to breathe normally again.

@skylarkny I'm just adding something to my last post, which is is there any different treatment I should do? I also started taking Benzonatate for the cough, but can't see results yet. Thanks!

@skylarkny, Hi there. Sounds like you aren't doing very well right now. Just a heads up, green sputem usually indicates infection. If the coughing up gunk continues after a week, insist that your dr get a sputem sample from you for testing. Ideally, have it sent to either Mayo Clinic or National Jewish Health. Those two places have the best labs for testing mac. They can test for specie, colonycount, and do a suseptibilty test. That is a test to see what specific drugs will work against it. Azithromycin is strong and will remain in your system awhile, so give it time to work. If it doesn't knock out whatever bug you have; you may need a longer, more consistant treatment.

@skylarkny Hi. Me again. Just wanted to pass it along that when I had that God-aweful cough, I'd drink 'Breath Easy' tea by Traditional Medicines. Can be purchased at some grocery stores in the Natural Food isle. It helped me a lot. I hope you feel better soon.

@heathert Thanks so much for replying Heather, and your kind advice. I was wondering if this means the hearing loss will get worse if I stay on the Azithromycin, or will just stay this bad but not get worse?.
The docs didn't stop the medication for you? That's hopeful. I felt this drug had already started to help fight the NTM and was worried if I have to stop it because of the hearing problems.
I will see my GP/primary carer about it tomorrow.
Thanks again Heather, hope you are doing okay. Hugs, Annie

@irene5 Hi Irene, sorry, I don't know everybody here. I should have just asked for anyone who might know. Hope you are going okay. How long have you been on the meds/big 3? Did you get tinnitus but was advised by the docs to keep taking Azithro? Would love to know this. Or did you have to stop taking it? Hugs to you, Annie