No firm diagnosis, but CT's suggest MAC Questions

Posted by pacathy @pacathy, Mar 2, 2023

After several years of having postnasal drip and cough, a chest CT last summer showed tree-in-bud nodules, mucus plugging, ground glass, etc. The radiologist said it was suggestive for atypical non-tuberculosis mycobacterial infection. I saw a pulmonologist who thought the significant post nasal drip could be contributing to/causing the CT findings. He said the "least" I have is asthmatic bronchitis and started Stiolta, Azelastine, and Mucinex and the cough and post nasal drip have decreased significantly.

CT was repeated in January and showed:
"1. Waxing/waning infection/inflammation throughout both lungs, probably related to chronic atypical infection/MAI, with overall improved bilateral lower lobe findings aside from a new left lower lobe cluster of tree-in-bud nodules.
2. New masslike atelectasis in the lingula."

Pulmonary doc called after the last CT results and said he didn't "think" I had cancer, referred me to ENT to help with improved, but persistent, PND and increased Flonase. Sinus CT showed sinusitis and I started Augmentin and Prednisone for 10 days and will get allergy testing. ENT doc doesn't think chest CT findings are from PND mucus, though said an infection could seed from sinuses thru blood.

Pulmonary plan was for a repeat CT in April and if no improvement, a bronchoscopy and a PET scan. We have discussed how tough MAC treatment is. My one tiny sputum culture showed just flora, though initial smear had trace mycobacterium.
PROBLEM: I called to schedule the April appointment last week and was told pulmonologist is out on emergency leave thru April and office has no one else to schedule with. They gave me a May appointment.
I''m feeling impatient for a diagnosis, esp. since ENT doc seems to think something else is the cause. Pulmonary doc didn't want to do CT after 2 months in case because that would be too soon for a slow going malignancy to show. I called Mayo and they have openings in March and April if I can get a referral. I'm hoping NP will give me one on Monday.

Questions: 1. Did anyone else have PND considered as an explanation for abnormal CT before diagnosis? I found mostly older research from Japanese docs about "sinobronchial syndrome," which sounds similar to mine, but it seems either a dated diagnosis or one US docs didn't agree with. I am retired nurse and know aspiration is an issue for sick, but my cough reflex seems quite good! : )
2. Am I being too impatient? Is it reasonable to go to Mayo at this point? I just want to get tests done, get a diagnosis and a plan made. If you've been, are my expectations that I'll get a diagnosis reasonable? I haven't been in 20 years, but was impressed then.
3. Do any of you have family members with MAC? I know it's not contagious per se, but I read about clusters. My mom was thought to have it and her chest CT's reports looked much like mine. She was too old/frail for a bronch when it was found. I also think my dad may have had the cavitary type. In the pre-CT days, he had his lt. upper lobe removed for a lesion thought to be cancer, but wasn't and final was that it was "like TB, but not contagious."

Does anyone have any suggestion for clearing out my lungs in addition to the meds? I do walk a few times a week.
Sorry this is so long...

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

Welcome to Mayo Connect, your journey sure sounds like Bronchiectasis with a possible MAC infection. If you go to the root MAC & Bronchiectasis support and click the search box, type in "airway clearance" and read about ways to keep your lungs clear.

As for whether you are too anxious- in my opinion it is time to consult one of the experts in treating us - Mayo, National Jewish Health, University of Texas, Tyler...
Diagnosing infections and deciding when and how to treat is their specialty. Both the infection and the condition are rare, and not everyone knows what to do.
Persistent atelectasis, tree in bud and ground glass opacities all can have many causes and diagnoses - an expert will sort through them and come to a diagnosis. Cancer is only one (slim) possibility-others are Bronchiectasis, COPD, bronchitis, bronchiolitis, remnants of pneumonia, bronchitis or Covid... Most of these, and MAC infection, can be treated, either to reverse, or to slow or halt progress, and especially to manage symptoms.
So please, do take the opportunity to consult the best, if it works for you!
Sue

REPLY

So glad you found our group!
Your symptoms sound so much like mine when I started this journey. I hope you'll consider “silent reflux” as a possible cause of the chronic cough and post nasal drip.
If you get to see the experts at Mayo, they can help you get a clear diagnosis and work back to the root causes and contributors to come up with the best plan for you.
And don’t let yourself be intimidated. The treatment for MAC is not a huge deal for many people. Just one step at a time.

REPLY

I had a bad case of post nasal drip that irritated by throat and caused lots of dry coughing especially in the middle of the night. During the last month I have used 3% saline inhalation via nebulizer and that has really helped the post nasal drip and done away with the middle of the night coughing. Interestingly, the 3% nebulized saline causes massive nose blowing which I believe is sinus clearing as a side effect of the saline! I don't use antihistamines because I fear thickened mucus but I do get allergy shots after skin testing but the shots have not helped the PND but have helped most other allergy symptoms. Just some data that may or may not help your situation.

REPLY
@sueinmn

Welcome to Mayo Connect, your journey sure sounds like Bronchiectasis with a possible MAC infection. If you go to the root MAC & Bronchiectasis support and click the search box, type in "airway clearance" and read about ways to keep your lungs clear.

As for whether you are too anxious- in my opinion it is time to consult one of the experts in treating us - Mayo, National Jewish Health, University of Texas, Tyler...
Diagnosing infections and deciding when and how to treat is their specialty. Both the infection and the condition are rare, and not everyone knows what to do.
Persistent atelectasis, tree in bud and ground glass opacities all can have many causes and diagnoses - an expert will sort through them and come to a diagnosis. Cancer is only one (slim) possibility-others are Bronchiectasis, COPD, bronchitis, bronchiolitis, remnants of pneumonia, bronchitis or Covid... Most of these, and MAC infection, can be treated, either to reverse, or to slow or halt progress, and especially to manage symptoms.
So please, do take the opportunity to consult the best, if it works for you!
Sue

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I thought I'd replied, but don't see the response. Thank you very much for the info and encouragement. It's quite helpful.

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@marthamac

So glad you found our group!
Your symptoms sound so much like mine when I started this journey. I hope you'll consider “silent reflux” as a possible cause of the chronic cough and post nasal drip.
If you get to see the experts at Mayo, they can help you get a clear diagnosis and work back to the root causes and contributors to come up with the best plan for you.
And don’t let yourself be intimidated. The treatment for MAC is not a huge deal for many people. Just one step at a time.

Jump to this post

Thank you. I'll keep reflux in mind. It's also good to hear that if it turns out to be MAC. the treatment isn't always "brutal."

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@liz440

I had a bad case of post nasal drip that irritated by throat and caused lots of dry coughing especially in the middle of the night. During the last month I have used 3% saline inhalation via nebulizer and that has really helped the post nasal drip and done away with the middle of the night coughing. Interestingly, the 3% nebulized saline causes massive nose blowing which I believe is sinus clearing as a side effect of the saline! I don't use antihistamines because I fear thickened mucus but I do get allergy shots after skin testing but the shots have not helped the PND but have helped most other allergy symptoms. Just some data that may or may not help your situation.

Jump to this post

Thank you for the response. I think my sinuses got out of control because I relocated before Covid and accessing good care has been challenging. I got used to a lot of drainage and feeling crappy. With the steroids and antibiotics this week, I've been amazed at the amount of air flowing thru there. 🙂
It's too bad the shots aren't helping with your PND, but good they're helping other symptoms. I have a friend whose shots have made a remarkable difference. It'll be interesting to find out my results.

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