Help! Positive testimonials required

I was 61 and constantly coughing.

You may be right. However, I was thought to have it for 7-8 months. The experienced local pulmonologist, who does a lot of critical care work, told me my CT’s looked terrible. They showed trees-in-bud, ground glass, mass like atelectasis in linga and scarring. (Mayo said they see worse.) I developed bronchiectasis between the CT’s when I hadn’t been told about airway clearance or given adequate treatment for sinuses. The negative cultures were a surprise.

I’m writing this not just for you, but for future readers with a tentative diagnosis who search old threads. It’s best to have the real facts (cultures) and a treatment plan. I had to go to Mayo for mine.
Again, I wish you great luck, and great providers and support systems. This forum has been extremely helpful to me.

10 years ago at age 57 I had a CT that had all the features of MAC, according to pulmonologist and radiologist. Had bronchoscopy, nothing grew on culture. This process was repeated several times over the past 10 years, with progression of the Bronchiectasis, nodules etc, but cultures all negative. Until last spring, when bronchoscopy yielded positive MAC culture.
I started azithromycin, Ethambutol and Rifampin 3x/week. Rifampin gave me fevers of 103, flu-like symptoms. Tried Rifabutin, same side effects. So I took just the remaining two drugs. Had a bronchoscopy in December to get a current culture, so insurance could consider the addition of (inhaled) Arikayce. After 8 weeks- no bacterial growth! My pulmonologist and infectious disease doctor were pleasantly surprised. Of course I will have to continue the azithromycin and ethambutol until December (one year after negative culture). And I’m sure it will have to be cultured again at that time.
Just wanted to let you know that there can be successful outcomes. Since our Bronchiectasis still remains, we have to adjust to living with a chronic condition, do lots of research, and be our own health advocates. Best of luck to you.

Do you do sputum culture too? Or does the doctor always recommend bronchoscopy?

Hi, no sputum cultures. Typically I don’t have much of a cough and can’t produce a good sample. My infectious disease doc says “Junk in, junk out”. He means lousy samples will yield lousy results. So we do bronchoscopy and they get their samples that way. Of course we’re not doing that monthly like a sputum culture.

Well, I’ve been on my triple cocktail since August. Along with an inhaler. I was diagnosed with MAC in Oct ‘22 but didn’t need to start the RX’s until August ‘23. I’ve not had any side effects… I’m not coughing anymore. I also breathe into a contraption ( opposite of a spirometer) just to add a little help keeping lungs clear. I do get tired but according to my liver function test, I’m anemic. Have my next appt with pulmonologist in a week so will find out what to do at that time. The diagnosis freaked me out. I’ve never smoked so lungs weren’t compromised. It was just lucky I found out what was wrong with me when I did. My PCP asked for a CT Scan of my heart to determine a baseline for heart calcification. Zero calcification but discovered spots on my lungs. Had a bronchoscopy and here we are. Told its a two year process. After that, just the inhaler a few times a week to keep lungs open. Has anyone else had the same experience? I’m now 71, work out three times a week and try to walk in between.

64

Hi, I was diagnosed with MAC in September of 2023. I have not started the meds yet. Did you have any issues with Ethambutol? I believe that is the med that is suppose to cause eye issues.
Thank you

Maybe they did’n find Mac but it was present since the beginning…

I’m sorry the diagnosis is causing you such dread and anxiety. I think all of us had that same anxiety and fear of the future when we were told. It’s been a little over 10 years since I found out I had MAC. I was lucky that my doctor had been treating another lady with MAC for years and was reassuring that this was going to be manageable. I was quickly referred to specialists (pulmonologist and infectious disease). I had meds, many of them, as I had some trouble with a couple of them, so they changed those. I also had MRI’s and scopes. I later went to MUSC for more intensive evaluations and treatments. I was taken off all meds and placed on a Nebulizer with saline. Bottom line is that except for a couple medications, I really haven’t had much difficulty. Not with any aspect of this diagnosis. I cough some every day. But, not such that it interferes with my life. Covid was scary, but my husband and I got all of the shots and took precautions. We only just this month got Covid and it wasn’t more than a cold for me. I have some other medical problems and I am older than you, probably by a lot. But, MAC has not stopped me from doing what I want to do. I don’t feel especially bad from it, ever. Good luck to you. Follow your doctor’s advice and read this site. You’ll learn a lot from the people here. I am sure you will be ok, and much better than you fear. ❤️