Being Diagnosed With Difficult Infections

By Emma Boniface

2 min read

Sometimes in cystic fibrosis (CF) you just happen to pull the short straw. It doesn't matter how compliant you are with daily treatment, or keeping a “CF healthy” diet. You can be the best at exercising, avoiding all the germ breeding grounds, fending off friends and family with the sniffles, getting enough sleep, drinking plenty of water and still feel like your body is failing.

Yet sometimes above all of the hourly battles to stay healthy... you just happen to have a bad day, week, or month.

Nontuberculous mycobacteria infection

That rang true for me when after 2 rounds of IV antibiotics less than 6 weeks apart I still felt super sick; unheard of since Trikafta by the way. Then I was diagnosed with a nontuberculous mycobacteria (NTM) infection on top of my bog standard chronic pseudomonas.

Quick recap: the most common mycobacterium infections in CF are m.abcessus or m.avium (MAC). There are other less common ones too that aren't as problematic. These species of bacteria are a distant cousin tuberculous (TB) but they do not cause TB. They can be quite a problem for CF patients as they are very difficult to eradicate. If treatment is needed, it is a long slog of 2-4 antibiotics over a period of years not weeks.

Luck of the draw

This isn't my first rodeo with an NTM. Yet it's taken me a while to get my head around it after being mycobacterium abscessus free for ten years. So my biggest fear came into realisation when I was given the news about my most recent sputum sample. Last time I looked this beast square in the eye and we went to battle, I won, but I wasn't unscathed. Far from it.

Before the finish line, there were a lot of losses. Permanent loss of lung function, permanent loss of hearing, permanent loss of antibiotic choice and, my mental health even got lost for a while.

I didn't think I'd be nose to nose with this mycobacterium bully again but I guess this is just a reminder that CF always has something up its sleeve to put you on a back foot. NTM bacteria is a sloth when it comes to growing. It is going to take a while until I get details back as to what green gremlin is trying to build a home in my mutating puffers.

Focusing on what might help

After a few days of self pity (sometimes it's warranted), I became even more consistent with my "fighting fit" plan. I've not missed a single neb or physio session which are most valuable at times like these. I have stepped up my exercise routine, hoping aerobic exercise could be influential in managing this mycobacterium infection. NTM Take 2, let's go...

Have you or a loved one been diagnosed with a nontuberculous mycobacteria infection? How did you or your loved one manage this? Share with us below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Roland Member
I had the same infection few years ago end went searching about it. After research it was almost certain that I got the infection through the machine of the long klinimetrie. In holland there was a research that has found a lot of heartpatients got the samd infection which they relaid to the ventilation machines on the operation room. I am a physical therapist and we use different breath technics to clear the mucus. This is the same what you do when you breath with force in the machine to mesure your longfunction . The muco bacteria is very hard to clean , also from machines. The research of the heartpatients infected shows this. Also the machines in hospitals are not always cleaned as is needed following protocol. Here we have a protocol that patient with TBC can’t use the machines like others. With my infection it was also the only place I have been in hospital. Told the hospital abd Doc my experience but nothing has changed. I normally have a longfuntion of 100 procent but got the examine due the protocol. Docters said the didn’t understand how i got it but they told me i had to have picked it up in hospital ( and as i said, i only had the longfuntion test) Good luck, hope you get well soon like i did. For the research you can google for the infection in heartpatients
Roland Member
Ps, with the longfunction you breath/cough with force into the machine and directly after this you inhale as deep as you can. It’s almost as smoking over your longs. It doesn’t take a lot of fantasy to imagine that if the machine is infected by another patient the bacterie nestels in your longs. With covid there were also questions about this way of testing and covid is cleaned easy The machine has some safety measurements but when we read the case with the heart patients this will not work with the NTMB ( and cleaning protocols are not always followed)
Roland Member
<a href='https://oatext.com/nontuberculous-mycobacterium-infection-in-heart-surgery-patients-current-protocol-for-hospitals-clinicians-and-patients-diagnosis-and-therapy.php' target='_blank' rel='noopener noreferrer ugc'>https://oatext.com/nontuberculous-mycobacterium-infection-in-heart-surgery-patients-current-protocol-for-hospitals-clinicians-and-patients-diagnosis-and-therapy.php</a>