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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northland | @northland | Jun 8, 2023

Hi, I believe they do the CT scans to watch your cavitations. Over a certain size, they recommend surgery. My cavitation was small, but big enough for surgical removal. Previously, I had been doing regular sputum tests indicating whether or not I still had NTM. I only had two CT's in a 5 year span. The last CT indicated that it would be beneficial for me to have surgery. I had a VATS, ( video assisted thoracic surgery at the Mayo, Mayo MD only recommended surgery there or NJH) 12 month's of continued oral meds with all negative sputum tests after that and have been staying clear so far. The surgery really made the difference for me. I hope that helps. PS. damp dirt with N95 is best way to continue gardening per MD.

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Renee | @rchildress | Jun 8, 2023
In reply to @sueinmn "Hi Renee, I'm glad to hear you are able to keep going and are nto seeing..." + (show)
@sueinmn

Hi Renee, I'm glad to hear you are able to keep going and are nto seeing restrictions in your breathing.
One tip, from an avid gardener - mulch & soil, specifically the dust it raises, can be full of NTM bacteria, mold spores and other nasty stuff. Be sure to wear a well-fitted N95 mask while handling it, shower and wash your clothes afterward. My pulmonologist and ID doc told me gardening is safe to do with these reasonable precautions.
I know it's a pain - nothing I hate worse than breathing through a mask when I'm already hot and sweaty - but it is a step towards staying safe.
Sue

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My neighbor bought me some of those masks and keeps an eye on me to be sure I am wearing one when I’m mowing and spraying and stuff in my yard. I plan on living for a long time and don’t intend for this to keep me from doing things. At least I am a fighter and not a sitter. I think my attitude about it not getting me down is bound to help 😃 Well, hopefully anyway.

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Renee | @rchildress | Jun 8, 2023
In reply to @dulwich "Also please wet down any potting soil or mulch as well as wearing a mask, so..." + (show)
@dulwich

Also please wet down any potting soil or mulch as well as wearing a mask, so there is less dust

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Will do.
Thanks

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lweirdo1 | @lweirdo1 | Jun 8, 2023

So my CT scans only show some dark activity in the very bottom of my lungs that they say is where the MAC lives. The Sputum culture can actually clarify that you have MAC - at least that's what I've found so far.

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lweirdo1 | @lweirdo1 | Jun 9, 2023
In reply to @bluesplashgirl "Hello, All I can talk to is what happened with me and the cavity I developed...." + (show)
@bluesplashgirl

Hello, All I can talk to is what happened with me and the cavity I developed. I stayed on the Big 3 and toyed with the idea of Amikacin but after reading about the side effects that could cause hearing loss I decided against it. I stopped nebulizing in November of 2020 and went to Mayo the following February to meet with a surgeon regarding a VAT procedure to remove the cavity. My CT scan showed improvement and the cavity was gone. So, no surgery was required. I had continued to get positive and negative sputum results but my scans looked good and with no change to the MAC clusters. One of the members on here said she had never had a negative sputum test so I stopped that and continue to have CT scans every 6 months. I also stopped taking the medication after 3 years of no change. The azithromycin was also causing hearing loss. I go again this month for another CT to see how things are looking and will not do sputum. I feel pretty good and know that I will stay off drugs until they come up with a better solution. They just didn’t work for me. In the end, I am embracing quality over quantity. Good luck. Carolyn

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Was the VAT helpful in your health improving? Just wondering and thinking about it.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 9, 2023
In reply to @rchildress "My neighbor bought me some of those masks and keeps an eye on me to be..." + (show)
@rchildress

My neighbor bought me some of those masks and keeps an eye on me to be sure I am wearing one when I’m mowing and spraying and stuff in my yard. I plan on living for a long time and don’t intend for this to keep me from doing things. At least I am a fighter and not a sitter. I think my attitude about it not getting me down is bound to help 😃 Well, hopefully anyway.

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Oh I agree! Attitude, fresh air and exercise from gardening all serve to keep you healthy. We just need to remember we are not "super woman" and take reasonable precautions.
Have fun in the yard!
Sue

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Renee | @rchildress | Jun 9, 2023
In reply to @sueinmn "Oh I agree! Attitude, fresh air and exercise from gardening all serve to keep you healthy...." + (show)
@sueinmn

Oh I agree! Attitude, fresh air and exercise from gardening all serve to keep you healthy. We just need to remember we are not "super woman" and take reasonable precautions.
Have fun in the yard!
Sue

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Thank you. 😃

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Jun 10, 2023
In reply to @lweirdo1 "Was the VAT helpful in your health improving? Just wondering and thinking about it." + (show)
@lweirdo1

Was the VAT helpful in your health improving? Just wondering and thinking about it.

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The cavity collapsed on its own so I didn’t have the surgery.

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Rick | @rstel7272 | Jun 11, 2023
In reply to @bluesplashgirl "The cavity collapsed on its own so I didn’t have the surgery." + (show)
@bluesplashgirl

The cavity collapsed on its own so I didn’t have the surgery.

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How long did you have the cavitation? Did a Dr actually recommend or schedule your VATS? Did you get a second opinion? I am in this boat now.

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healthybon | @healthybon | Jul 20, 2023
In reply to @rchildress "Thank you for this information. I had not seen such bad side effects so I will..." + (show)
@rchildress

Thank you for this information. I had not seen such bad side effects so I will definitely take those into consideration. I have been taking Paximune and just started taking Glutathone. Both are to build your immune system plus I am now taking a lot of vitamin C and a multivitamin which I wasn't taking before. The Paximune is really good for lots of things so I am back on it. At least none of these things have side effects.
I really appreciate your input. I am to young to have any of those side effects so I will focus on quality not quantity if necessary over treatment. I do know that I can take Azithromycin because it is basically a ZPac and I have taken that for different things over the years.
Thanks again. I will be doing more research.

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Hi Renee, I just read your blog. How are you doing. Have you opted not to take the Big 3? I have. The side effects terrify me and I am one to get side effects from meds every single time. I’m tiny, and vulnerable to medicines. I couldn’t even take amoxicillin for two days. I can’t believe I got Mac and Bronchiestasis….newly diagnosed this past year!
I’m just gonna take one day at a time and do the best I can with clearance, exercise and a healthy approach. Who knows what’s in store for me or anyone else…..I was just wondering if you had changed your mind about the meds, and how you are feeling in general? Regards. Bon

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