how to test for refractory MAC if can't produce sputum samples

Posted by six5532one @six5532one, 1 day ago

I'm approaching 6 months after starting the big 3 to treat MAC and want to safely and accurately determine the status of my infection. I was diagnosed via bronchoscopy and have never generated a positive sputum sample on my own. Each month since starting drug therapy, I've submitted a sputum sample. My samples are mostly saliva, even after going to the sputum induction lab. Even if I found a way to submit better quality sputum samples, bronchiectasis primarily affects two of my lobes and no one knows whether that sputum came from a part of my lungs that's impacted by MAC.

At the 6 month mark, should I get a CT scan and a bronchoscopy without biopsy? What CT results would indicate the antibiotics are effective? In 6 months, would effective therapy result in obvious improvement in nodules and tree-in-bud opacities? Or would a CT that looks the same as the baseline indicate that the drugs are effective?

I've heard multiple people say they only produced negative sputum samples but tested positive via bronchoscopy. On the other hand, there are risks associated with a bronchoscopy with lavage. Has anyone experienced issues after a bronchoscopy without biopsy? If you're more familiar with the risks involved in bronchoscopy with lavage, I'd appreciate learning more about that.

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

I had a bronchoscopy with biopsy 12/18/2022 to diagnose MAC and Abcessus. My lung collapsed during procedure. Pulmonologist at that time said it was caused from the biopsy not bronchoscopy itself. I haven’t had another bronchoscopy since then.

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From what I've read bronchoscopies are avoided unless absolutely necessary for biopsy or sputum collection if you are unable to produce. Would it be possible to share what you have tried to produce sputum sample?

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I've tried Albuterol, followed by nebulizing more than 4ml of 7% saline, followed by lying on my side and doing active cycle of breathing, followed by using the Aerobika. Due to injuries, I need to limit aerobic exercise. My doctor is prescribing a vest and that may take a while to work out.

Also, how do we get information from a follow-up CT only six months into drug therapy? If the drug therapy is effective, should we expect a noticeable difference from the baseline or same as baseline/no progression?

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I've tried Albuterol, followed by nebulizing more than 4ml of 7% saline, followed by lying on my side and doing active cycle of breathing, followed by using the Aerobika. Due to injuries, I need to limit aerobic exercise. My doctor is prescribing a vest and that may take a while to work out.

Also, how do we get information from a follow-up CT only six months into drug therapy? If the drug therapy is effective, should we expect a noticeable difference from the baseline or same as baseline/no progression?

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You might try hydrating and taking 1200mg mucinex before clearance in addition to 2 x 4ml vials of 7% saline. Wait a 30 minutes or so, go about your business, lie down and try some huff coughing.

Perhaps review your huff technique

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