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Probable MAC with extrapulmonary symptoms
Hello, folks -
I am wondering if anyone else can relate to my experience.
After having weird symptoms off and on, I was found to have a positive ANA and other specific autoantibodies including one that can predispose someone to Interstitial Lung Disease. Therefore, I was told to have a lung CT in 2021 which did not find ILD, but did find mucous plugging, scarring, and small nodules in the upper lobe. They weren't sure what it was and have continued to follow me with CTs each year to monitor. Each year, the mucous plugging and nodules have progressed to 2023 where they found tree-in-bud. Fast forward to Fall 2023/Winter 2024, and I suddenly started experiencing nightly episodes of waking up with an internal heat sensation with tachycardia. Cardiac and hormonal issues were ruled out. These episodes have progressed into the daytime hours and now include sweats and chills with fatigue and severe insomnia. Eating is a huge trigger for these symptoms, too. I have also just learned that I am iron deficient.
Can anyone relate?
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@sinojosvacios When you titled this discussion "Probable MAC..." does that mean your doctors have taken a sputum specimen, either through expectoration or a bronchoscopy, and sent it to a lab to be cultured? Fever, sweats, chills and fatigue are definitely all symptoms of a MAC infection, but for a certain diagnosis, a culture is preferred before treatment.
Are your seeing a pulmonologist for these symptoms?
Sue
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2 ReactionsHi Sue. I had my cousin, an infectious disease Pulmonologist take a second look at my CT scans. He was the one who said that this looks like MAC. He wants me to get another CT ASAP in which he expects to see further progression and at that point he will consult with my Pulmonologist to have them order sputum tests.
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2 ReactionsThat was a smart move! I wonder if he can find out how much infectious disease experience your pulmonologist has? It's really important to find one who knows and uses the latest protocols for treating MAC and other infections.
Sue
Absolutely! My current Pulm is more of an Interstitial Lung Disease expert, whereas my cousin has worked with TB. Fortunately, he knows a lot about how to address this and I expect that he'll be able to advocate for me.
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1 ReactionTachycardia is not to be brushed off. See a cardiologist. I belatedly did and it was a great decision as I was diagnosed with SVT and prescribed metoprolol. This was after a few years of blaming the AB's and Albuterol for the tachycardia.