1. < MAC & Bronchiectasis

CT Scans vs Sputum Cultures, which is more important?

Posted by mch (Marycarol) @mch, May 31, 2023

I've seen lots of comments focused on sputum culture results as a determinant of whether treatment is successful or not.  I understand the relevance of these cultures, but I'm wondering about the relative importance of CT Scans.  Seems like the sputum culture results can be somewhat erratic, including false positive and false negative potential, and highly dependent on successful sputum production which introduces considerable variability in the quality of the sample.  Can't help but question the reliability of lab results.  I tested positive for MAC based on bronchoscopy, but my pulmonologist seems much more concerned with my CT scan and almost downplays the value of sputum cultures.  I did have 2 small (less than 2cm) cavities on my initial scan so that might be why he's focusing on the scans rather than cultures going forward.  I would appreciate hearing from anyone who's had cavities and what your experience has been with treatment (Big 3 and/or Arikayce) improving (or not) your CT scans.  Thank you.

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Jun 2, 2023
In reply to @sweethighland "Hi BlueSplashGirl, thank you. You mentioned "not nebulizing:", meaning nebulizing saline (sodium cloride)?" + (show)
@sweethighland

Hi BlueSplashGirl, thank you. You mentioned "not nebulizing:", meaning nebulizing saline (sodium cloride)?

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Yes, that is correct.

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Jun 2, 2023

Hello Arlo, When I had my first CT scan it showed "nodular infiltrate" My pulmonologist then did a bronchoscopy and found the MAC. That was 2015. So the actual CT did not determine MAC but showed that I had nodular infiltrate which is common with MAC. Hope that helps.

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scoop | @scoop | Jun 2, 2023
In reply to @equanimous "Hi Carolyn, Thanks for your post. I will be having my CT scan on the 7th...." + (show)
@equanimous

Hi Carolyn, Thanks for your post. I will be having my CT scan on the 7th. Can you kindly clarify.... CT scans can show MAC clusters? I was under the impression that MAC is only detected thru sputum tests. I am new to my bronchiectasis/MAC diagnosis and, with the help of this group, am getting educated. I am very anxious to get the results of this CT scan and need to know what to ask my pulmonologist. Thank you.

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It might be helpful, @equanimous to keep in mind that radiologists often have limited clinical information, which can lead them to hedge on their reports. In other words, they may write that something looks like such and such, but that info is not corroborated with your symptoms or sputum sample. In my experience, the pulmonologist makes the assessment/diagnosis. Hoping it goes well for you!

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1 reply
Rick | @rstel7272 | Jun 3, 2023
In reply to @scoop "It might be helpful, @equanimous to keep in mind that radiologists often have limited clinical information,..." + (show)
@scoop

It might be helpful, @equanimous to keep in mind that radiologists often have limited clinical information, which can lead them to hedge on their reports. In other words, they may write that something looks like such and such, but that info is not corroborated with your symptoms or sputum sample. In my experience, the pulmonologist makes the assessment/diagnosis. Hoping it goes well for you!

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Some radiologists are better than others, much better.

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gjaleski | @gjaleski | Jun 3, 2023
In reply to @jeffsmock "For me both was very important. (CT & Sputum) I had a cavity in my right..." + (show)
@jeffsmock

For me both was very important. (CT & Sputum) I had a cavity in my right lung the size of a small coffee cup. I had infusions twice about 2 hours morning 2 hours evenings . Sputum culture take a long time to grow. I had aspergillosis fungus. I then had lower 2 lobes removed. If I wouldn't had both CT& Sputum. I wouldn't be here.

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Only a CT can diagnose a cavitary MAC infection. A CT can identify the extent and location of the MAC infection.

I believe a robotic bronchoscopy is the gold standard for collecting biopsy specimens necessary to identify MAC strains.

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jeffsmock | @jeffsmock | Jun 3, 2023

I agree with the last comment. After my bronchoscopy
they still kept growing sputum culture. It takes up to 6to8 weeks to grow certain kinds of fungus. By the I felt great after my bronchoscopy .
I guess they took some little blood clots why they were in my lung looking around and taking biopsy.
I felt the best than I had in Months. It short lived. But I will never how good felt.

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Renee | @rchildress | Jun 4, 2023

I was just diagnosed with MAC by a pulmonologist who said to just watch it for 6 months but I am hearing that I should not just leave it untreated so my MD prescribed an antibiotic until I can get in to see a different pulmonologist for further treatment. I was wondering how miserable is the 3 antibiotic treatment for this going to be? One of the 3 isn’t bothering me at this point but I just started taking it. Thanks

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4 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 4, 2023
In reply to @rchildress "I was just diagnosed with MAC by a pulmonologist who said to just watch it for..." + (show)
@rchildress

I was just diagnosed with MAC by a pulmonologist who said to just watch it for 6 months but I am hearing that I should not just leave it untreated so my MD prescribed an antibiotic until I can get in to see a different pulmonologist for further treatment. I was wondering how miserable is the 3 antibiotic treatment for this going to be? One of the 3 isn’t bothering me at this point but I just started taking it. Thanks

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Hello and welcome to Mayo Connect. As you read our various posts, keep in mind that both MAC and bronchiectasis vary greatly in severity from one person to another.

"Watch and wait" is one common strategy with low-grade MAC infections, but it is usually combined with airway clearance to help lungs fight it off. Most MAC bacteria are very slow growing, so unlike most infections, the risk in is small.

Can you tell us a little about your symptoms, and what led to the diagnosis?
Sue

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1 reply
Rick | @rstel7272 | Jun 4, 2023
In reply to @rchildress "I was just diagnosed with MAC by a pulmonologist who said to just watch it for..." + (show)
@rchildress

I was just diagnosed with MAC by a pulmonologist who said to just watch it for 6 months but I am hearing that I should not just leave it untreated so my MD prescribed an antibiotic until I can get in to see a different pulmonologist for further treatment. I was wondering how miserable is the 3 antibiotic treatment for this going to be? One of the 3 isn’t bothering me at this point but I just started taking it. Thanks

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The big 3 was well tolerated by me (28 + 12 months). It was the Amikacin IV and Arikayce that kicked my butt.

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1 reply
Renee | @rchildress | Jun 4, 2023
In reply to @sueinmn "Hello and welcome to Mayo Connect. As you read our various posts, keep in mind that..." + (show)
@sueinmn

Hello and welcome to Mayo Connect. As you read our various posts, keep in mind that both MAC and bronchiectasis vary greatly in severity from one person to another.

"Watch and wait" is one common strategy with low-grade MAC infections, but it is usually combined with airway clearance to help lungs fight it off. Most MAC bacteria are very slow growing, so unlike most infections, the risk in is small.

Can you tell us a little about your symptoms, and what led to the diagnosis?
Sue

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It all started with a trip to Yellowstone in October started coughing the first day in. Came home with a sinus infection. Started being very tired which is not my norm and coughing a dry cough a lot. By November had a pain in my right upper side which ultrasound sound showed nothing wrong. By Dec I was so exhausted and had a dry cough so bad I lived on couch drops so they did a complete blood workup which showed infection but didn’t know where so did nothing. In February I did $50 heart scan out hospital was offering. My heart was perfect but they found I had walking pneumonia so treated me for 10 days with a strong antibiotic and did another CT in 3 weeks. That CT showed chronic infection in that lung so my doctor sent me to a pulmonary doctor which took 2 weeks and he ordered a bronchoscopy which took another 2 weeks
Samples were sent off and the lab had to let it grow for 6 weeks. In about 3 weeks they sent preliminary results to the doctor who scheduled me an appointment in another 2 weeks which was last week. That was when he told me I had Mycobacterium Avium infection in my lung and we would just watch it and do another CT in September because he hadn’t had 1 patient that had made it through the treatments. I am still extremely exhausted and cough all the time and I have been loosing weight and can’t sleep for the hot and cold sweating at night.
I called another polmunary doctor who said that I needed to be treated or it would get worse. My regular md said the same thing and put me on antibiotics until my appointment on the 26th with the new pulmonary doctor. Another doctor friend also said I need treatment because of all my symptoms and it would get worse.
This has been going on since October of 2022.
I would appreciate an opinion from you. I have been doing massive research because I need to find a way to start feeling good again.
Thanks for your response.
Renee

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