Anyone have cavitary MAC?

Posted by maureen2022 @maureen2022, May 23, 2022

Hi everyone,
I am 46 yo woman diagnosed with MAC. I have no bronchiectasis, but I have cavitation in one of the nodules. I started the meds 3 months ago and only mil side effects. I follow a good diet and lots of whole foods / probiotic & fermented food which helps. I was told I am a strange "bad luck" case since I have cavitation.

I was wondering if anyone else had cavitary disease and if it felt weird once the meds started. I never coughed or had a fever much but now I do cough a bit and feels like things are moving around. Any one else have cavitation and stories of how this felt as it was healing?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

suzyqueue | @suzyqueue | Sep 6, 2023

In reply to @mokie "How is your hearing doing with Arikayce?" + (show)

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

reneemc | @reneemc | Sep 7, 2023

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

Rick | @rstel7272 | Sep 8, 2023

In reply to @reneemc "Do you have a lot of pain? I’ have pain to the point of not being..." + (show)

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.

reneemc | @reneemc | Sep 8, 2023

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

reneemc | @reneemc | Sep 8, 2023

In reply to @suzyqueue "I have some subtle tinnitus and a little loss but nothing drastic. I'd rather breathe than..." + (show)

Indeed!

Sue, Volunteer Mentor | @sueinmn | Sep 8, 2023

In reply to @reneemc "Do you have a lot of pain? I’ have pain to the point of not being..." + (show)

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

mokie | @mokie | Sep 9, 2023

In reply to @suzyqueue "I have some subtle tinnitus and a little loss but nothing drastic. I'd rather breathe than..." + (show)

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

mokie | @mokie | Sep 9, 2023

In reply to @rstel7272 "In 5 years of treatment, the only pain I have had is a couple rib sprains..." + (show)

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