Making the choice to not risk side effects of treating NTMs

Posted by karen10225 @karen10225, May 30 5:41pm

I am interested in hearing from people with NTM who have made the decision to not take the drug regimen to treat it because of the serious side effects. What are you doing instead to mitigate the symptoms?

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

Sue, Volunteer Mentor | @sueinmn | May 30 6:17pm

@karen10225 Welcome to Mayo Connect, and to our MAC & Bronchiectasis support group. As a new member, you may want to take a look at two discussions to learn how people manage their infections:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
M. simiae from respiratory specimens does not always represent true infection. Although advancements in laboratory diagnostics have enhanced the ability to detect M. simiae, it appears to have low pathogenicity. Most cases of M. simiae represent environmental contamination rather than clinical disease [8]. It is estimated that only 9% to 21% of M. simiae pulmonary isolates are clinically significant [3].

Here is some information about M. simiae. "...Treatment can be deferred in cases where M. simiae isolation is asymptomatic, as demonstrated in a study from Israel by Lavy and colleagues, in which M. simiae was isolated only once in more than 80% of asymptomatic patients that did not require treatment [14]..."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7192373/
So, I think the takeaway is that your doctors will determines what the next step should be based on all of your symptoms and their severity.

As for "not treating NTM", I would like to offer a different view. Antibiotic treatment is not the only tool in our arsenal.
Mild to moderate or asymptomatic cases of NTM can often be managed without antibiotics by using a combination of airway clearance, nebulized saline, exercise and a healthy lifestyle. The process is often called "watchful waiting" as the patient and care team continue to monitor lung condition, cough, fever and/or fatigue.

Can you describe your journey with NTM so far?

karen10225 | @karen10225 | May 30 11:17pm

In reply to @sueinmn "@karen10225 Welcome to Mayo Connect, and to our MAC & Bronchiectasis support group. As a new..." + (show)

The main symptom I have is a lot of coughing up mucus and in the past two to three years I have coughed up 1/8 to 1/4 cup of blood about six times. This terrifies me even though it always stops in 20 minutes or so and then doesn’t happen again for 2 or 3 months. I have an ID doc and a pulmonologist at Cedars Sinai in Los Angeles. They do a CT scan and sputum sample every six months. I use a saline nebulizing solution and try to walk for exercise and try to eat the best diet I can. I guess we are watchful waiting because I have other conditions that make me unwilling to risk antibiotic side effects. My biggest problem is a constant fear that the bleeding will happen!