Being Diagnosed With Difficult Infections
Last updated: June 2023
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!
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