Anyone have cavitary MAC?

I have some subtle tinnitus and a little loss but nothing drastic. I'd rather breathe than hear. Lol

Do you have a lot of pain? I’ have pain to the point of not being able to function. ID Dr says pain isn’t a symptom of NTM PD

In 5 years of treatment, the only pain I have had is a couple rib sprains from coughing. One was actually caused by Arikayce. Each lasted about a month.

Oh, thanks for sharing. I see ID Dr Monday, she may prescribe Arikayce. I have so much back pain I can’t function

Indeed!

HI Renee - I did have pain while I was being treated for MAC, and I tried to attribute it to the infection. Five years (and a lot of hard work) later I have a better understanding of what was happening to me.

I was very ill by the time my MAC was diagnosed, along with bronchiectasis and pseudomonas. My health had been on a downward spiral for 2-3 years, I coughed all the time, had crushing fatigue and was generally miserable, so I spent most of my time in bed, on the couch, or in a recliner, getting up to drag myself through appointments and vital chores.

The worse I felt, the less I moved, and the less I moved, the worse I hurt...repeat, repeat, repeat. When I finished my antibiotic therapy in December 2019, weak, tired and in pain. After seeing and talking to my primary several times about this, and not getting any better, I was referred to a pain rehab specialist - remotely since this was during Covid. Together they determined that in addition to the remnants of my infection/treatment, arthritis and fibromyalgia, my body overreacted to all pain and immune system stimulus - creating the cycle. This is sometimes referred to as Central Sensitization Syndrome (CSS) and is manageable.

Over the past 3 years, I have seen the pain rehab docs, talked to a psychologist, had extensive PT - and done a lot of work. I learned what pain is signaling an illness or injury and a need for intervention, and what pain is chronic - just as real but needing to be managed it with exercise, distraction and mindfulness and other techniques.

One tool I found particularly useful was the book "The Way Out" by Allen Gordon and Alon Ziv which explains the concept of neuroplastic pain - pain which may be referred from one part of the body to another, caused by stress, and managed by the techniques the book outlines.

This is just a synopsis, and something to think about...
What does the doctor suggest?
Sue

Hi, Suzy

Thanks for responding! I'm glad of your success. May I ask a follow up. How long since you completed the Arikayce treatment. I'm trying to find out if people get hearing loss following the treatment (down the road) as I read online some do. I am grateful for your insights and advice.

Mokie

Hi, Rick

I am considering being treated with Arikayce because of cavitary NTM (I also have bronchiectasis). I am trying to figure out if the nebulized Arikayce really compromises one's hearing a lot, a medium amount or a little. I'm seeing all different things online. Can you speak to this issue?

Appreciatively,
Mokie

Hi, again, Suzyqueue

How long since your treatment with Arikayce?

Thanks a million for your insights.

Mokie

I've been on the Arikayce for 3 years. Started out every day for 1st 2 yrs. Now 3 times a week