Struggling with news of ntm

Posted by janaa1 @janaa1, Mar 9 4:51am

Hello everyone, my partner, 35 y/o M, was just diagnosed with ntm. The doctor said he has two types, one mac and another difficult one (not sure of the name). He also has pseudomonas. He has a productive cough but apart from that he is healthy. They did all sorts of tests to discover the underlying cause and nothing showed up. He has asthma and is on biologics and advair. We are waiting for genetic testing now and bronchoscopy is scheduled soon. His ct scan is very good no fibrosis or permanent damage. He was on ciprofloxacin and then tobramycin for a month for pseudomonas. The pulmonologist wants to start treatment of ntm but the infectious disease says its a very complicated case and treatment will be difficult (two types, needing IV antibiotics) so she is hesitant. Has anyone had a similar experience? Unexplained ntm and pseudomonas? Experience with the big 3 and IV antibiotics? What to expect? We are both absolutely terrified.

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I am surprised no one has said this yet—don’t be afraid of treatment! Your partner is young and many people do very well on treatment. You never know until you try. Most everyone progresses with this disease, even if they start out with no sputum or shortness of breath. I managed to avoid treatment for more than 10 years, but now that I am worse I have other health issues that prevent me from trying the antibiotics. Make sure you have a good team in place and follow their advice, but do keep your mind open to treatment. I wish I had explored it much earlier.

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