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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Rick | @rstel7272 | Jul 25, 2023
In reply to @harrynsc "Rick, Interesting. What city are you in? I'm in San Jose, CA. A single chest x-ray..." + (show)
@harrynsc

Rick,

Interesting. What city are you in? I'm in San Jose, CA.

A single chest x-ray exposes the patient to about 0.1 mSv. This is about the same amount of radiation people are exposed to naturally over the course of about 10 days.

A CT scan of the abdomen (belly) and pelvis exposes a person to about 10 mSv.

A PET/CT exposes you to about 25 mSv of radiation. This is equal to about 8 years of average background radiation exposure.

So you have had a lot of radiation!! Some doctors, such as my pulmonologist,
is hesitant to order too many scans. I have an appointment tomorrow,
and I will ask him about what additional information a CT gives over an
XRay.

I do have COPD and Emphysema, so maybe that makes a difference.

Harry

Radiation info from cancer.org website.

Jump to this post

I am 65 and live in Northern Colorado. I had one PET a 15 months ago (Negative, yea) and a VQ a year ago. I have a lot going on: Copd, Emphysema, MAC, cavitation, scar tissue, alpha-1, maybe some pulmonary hypertension, and now aspergillis. All but the aspergillus were diagnosed before most of the CT's. But hey, I played golf, fished and worked last week so I am not doing too bad.

REPLY
shar1120 | @shar1120 | Jul 25, 2023
In reply to @rstel7272 "I've had NTM's for 5 years, had about 20 CT's, not one x-ray other than just..." + (show)
@rstel7272

I've had NTM's for 5 years, had about 20 CT's, not one x-ray other than just after a surgical lung biopsy. And I've seen a lot of different pulminologists/id's, not one has ordered an x-ray.

Jump to this post

Same here. CT shows soft tissue that an X-ray can’t see

REPLY
harrynsc | @harrynsc | Jul 25, 2023
In reply to @harrynsc "Rick, Interesting. What city are you in? I'm in San Jose, CA. A single chest x-ray..." + (show)
@harrynsc

Rick,

Interesting. What city are you in? I'm in San Jose, CA.

A single chest x-ray exposes the patient to about 0.1 mSv. This is about the same amount of radiation people are exposed to naturally over the course of about 10 days.

A CT scan of the abdomen (belly) and pelvis exposes a person to about 10 mSv.

A PET/CT exposes you to about 25 mSv of radiation. This is equal to about 8 years of average background radiation exposure.

So you have had a lot of radiation!! Some doctors, such as my pulmonologist,
is hesitant to order too many scans. I have an appointment tomorrow,
and I will ask him about what additional information a CT gives over an
XRay.

I do have COPD and Emphysema, so maybe that makes a difference.

Harry

Radiation info from cancer.org website.

Jump to this post

Saw my pulmonologist today. He said you do see more with
a CT, but because of the high radiation, he doesn't order
them every three months. If things appear to be stable, he
will order the next one in six months, or depending on
what is going on, may order an XRay in three months for
a quick check.
Harry

REPLY
1 reply
ncgirl | @ncgirl | Aug 3, 2023

Well - my ct has been unchanged throughout my journey: im very grateful for the cultures as I don’t know I’d have ever received proper diagnosis without them as I kept getting very, very ill with respiratory symptoms & no one seemed to be able to tell me why until cultures. With this disease I don’t think any one test is the holy grail, it’s really looking at all the pieces, including your symptoms. Let us know how it goes

REPLY
Rick | @rstel7272 | Aug 4, 2023
In reply to @harrynsc "Saw my pulmonologist today. He said you do see more with a CT, but because of..." + (show)
@harrynsc

Saw my pulmonologist today. He said you do see more with
a CT, but because of the high radiation, he doesn't order
them every three months. If things appear to be stable, he
will order the next one in six months, or depending on
what is going on, may order an XRay in three months for
a quick check.
Harry

Jump to this post

I do love the term "stable", I wish I heard it more often.

REPLY
blm1007blm1007 | @blm1007blm1007 | Nov 6 9:49pm

To Renee....and Healthy Bon or all who read regarding the last question.
This post of yours was over a year ago and as well was Healhybon. I would be interested in knowing what you and healtybon have done since Jul 2023.
What have you been taking, doing etc since then, per supplements (anything new), medications, and possibly food choices due to med's and health condition(s).?
How are you and healthybon doing?
I anticipate starting azthromycin and ethambutol as the doctor prescribedHad my hearing baseline and will have eye baseline this week.....(both baseline tests not suggested by my BE specialist but did so due to the good information on this site).....before possibly starting the meds. I have MAI per sputum tests and bronchoscope exam. It has been a year since finding out I had MAI. I have not felt unwell just lots of stuff that I have to clear out....mucus/mucus plugs. My PFT is all good. The clearing mucus goes on all day long practically.
My concern and question:
If one doesn't take the med's does it just cause other negative affects in the lungs?
Barbara

REPLY
1 reply
healthybon | @healthybon | Nov 7 6:15am
In reply to @blm1007blm1007 "To Renee....and Healthy Bon or all who read regarding the last question. This post of yours..." + (show)
@blm1007blm1007

To Renee....and Healthy Bon or all who read regarding the last question.
This post of yours was over a year ago and as well was Healhybon. I would be interested in knowing what you and healtybon have done since Jul 2023.
What have you been taking, doing etc since then, per supplements (anything new), medications, and possibly food choices due to med's and health condition(s).?
How are you and healthybon doing?
I anticipate starting azthromycin and ethambutol as the doctor prescribedHad my hearing baseline and will have eye baseline this week.....(both baseline tests not suggested by my BE specialist but did so due to the good information on this site).....before possibly starting the meds. I have MAI per sputum tests and bronchoscope exam. It has been a year since finding out I had MAI. I have not felt unwell just lots of stuff that I have to clear out....mucus/mucus plugs. My PFT is all good. The clearing mucus goes on all day long practically.
My concern and question:
If one doesn't take the med's does it just cause other negative affects in the lungs?
Barbara

Jump to this post

I just saw your post.
I have not taken the antibiotics. They make me very sick, and I also get C Diff. I have had Mac and Bx for two years now.

I nebulize two times daily with Levabuterol and. 7% Saline..morning and night. I also do a procedure called “the squeeze”, that I learned from watching a video on the blog LUNG MATTERS. When I do this, I get up a lot if mucus that nebulizing does not get up. I do it once or twice daily.

It is VERY important to do these things on a daily basis…because our lungs do not work properly in terms of getting the secretions out every day. Because the sticky mucus is in there, it stops the little hairlike things in the lungs from moving the gunk out, so, we have to do it ourselves.

If we do not keep our lungs cleared out daily, we are leaving, in there, an environment for bacteria to grow, hence INFECTION COMES.

I also get sputum samples done once a month, AFB and one that shows if there is infection. VERY IMPORTANT to keep track of this. I get a CT scan done at least once a year at which time the dr compares it to the year before. I have NTM and bronchiectstasis.

So far, this regimen I am on is working. Before I started this strict routine, I was in two stints in the hospital for five days each with infection.

Feel free to message me anytime if you need to…..

REPLY
4 replies
lilianna | @lilianna | Nov 7 7:05am
In reply to @healthybon "I just saw your post. I have not taken the antibiotics. They make me very sick,..." + (show)
@healthybon

I just saw your post.
I have not taken the antibiotics. They make me very sick, and I also get C Diff. I have had Mac and Bx for two years now.

I nebulize two times daily with Levabuterol and. 7% Saline..morning and night. I also do a procedure called “the squeeze”, that I learned from watching a video on the blog LUNG MATTERS. When I do this, I get up a lot if mucus that nebulizing does not get up. I do it once or twice daily.

It is VERY important to do these things on a daily basis…because our lungs do not work properly in terms of getting the secretions out every day. Because the sticky mucus is in there, it stops the little hairlike things in the lungs from moving the gunk out, so, we have to do it ourselves.

If we do not keep our lungs cleared out daily, we are leaving, in there, an environment for bacteria to grow, hence INFECTION COMES.

I also get sputum samples done once a month, AFB and one that shows if there is infection. VERY IMPORTANT to keep track of this. I get a CT scan done at least once a year at which time the dr compares it to the year before. I have NTM and bronchiectstasis.

So far, this regimen I am on is working. Before I started this strict routine, I was in two stints in the hospital for five days each with infection.

Feel free to message me anytime if you need to…..

Jump to this post

What is the squeeze procedure? Thank you

REPLY
blm1007blm1007 | @blm1007blm1007 | Nov 7 8:28am
In reply to @healthybon "I just saw your post. I have not taken the antibiotics. They make me very sick,..." + (show)
@healthybon

I just saw your post.
I have not taken the antibiotics. They make me very sick, and I also get C Diff. I have had Mac and Bx for two years now.

I nebulize two times daily with Levabuterol and. 7% Saline..morning and night. I also do a procedure called “the squeeze”, that I learned from watching a video on the blog LUNG MATTERS. When I do this, I get up a lot if mucus that nebulizing does not get up. I do it once or twice daily.

It is VERY important to do these things on a daily basis…because our lungs do not work properly in terms of getting the secretions out every day. Because the sticky mucus is in there, it stops the little hairlike things in the lungs from moving the gunk out, so, we have to do it ourselves.

If we do not keep our lungs cleared out daily, we are leaving, in there, an environment for bacteria to grow, hence INFECTION COMES.

I also get sputum samples done once a month, AFB and one that shows if there is infection. VERY IMPORTANT to keep track of this. I get a CT scan done at least once a year at which time the dr compares it to the year before. I have NTM and bronchiectstasis.

So far, this regimen I am on is working. Before I started this strict routine, I was in two stints in the hospital for five days each with infection.

Feel free to message me anytime if you need to…..

Jump to this post

Thanks for your reply.
I am not sure I am understanding correctly.
From the start did you not have an infection?
Do your sputum viles show MAI/MAC or other type of infection each submission?
I have been sending in sputum samples monthly, (missed one month) and each is accpeted but always comes back saying either the number of colonies or 1+ or abnormal. I never hear if the MAI is worse, stable or better from the doctor.....that is disappointing and I sure don't know how to "read and interpret" the results. I have messaged them to see if they can tell me that. Can it be discerned?
My annual CT Scan showed two areas of improvement and one new area plugging in the lower lobe. I will work harder on the lower lobe via air way clearance methods. One pulmonologist said that they determine the need for anti biotics due to the CScan. That surprised me.
However, the BE specialist has me lined up with the two anti biotics to take Azithromycin and Ethambutol. As I have said in other posts here, I am preparing tenatively to take them. However, my concern is that if you do not take them you will not know if they will help and then will it cause greater lung damage if you do not take them???? It is almost like a "catch 22"
Barbara

REPLY
Toni D. | @tcd518 | Nov 7 8:30am
In reply to @healthybon "I just saw your post. I have not taken the antibiotics. They make me very sick,..." + (show)
@healthybon

I just saw your post.
I have not taken the antibiotics. They make me very sick, and I also get C Diff. I have had Mac and Bx for two years now.

I nebulize two times daily with Levabuterol and. 7% Saline..morning and night. I also do a procedure called “the squeeze”, that I learned from watching a video on the blog LUNG MATTERS. When I do this, I get up a lot if mucus that nebulizing does not get up. I do it once or twice daily.

It is VERY important to do these things on a daily basis…because our lungs do not work properly in terms of getting the secretions out every day. Because the sticky mucus is in there, it stops the little hairlike things in the lungs from moving the gunk out, so, we have to do it ourselves.

If we do not keep our lungs cleared out daily, we are leaving, in there, an environment for bacteria to grow, hence INFECTION COMES.

I also get sputum samples done once a month, AFB and one that shows if there is infection. VERY IMPORTANT to keep track of this. I get a CT scan done at least once a year at which time the dr compares it to the year before. I have NTM and bronchiectstasis.

So far, this regimen I am on is working. Before I started this strict routine, I was in two stints in the hospital for five days each with infection.

Feel free to message me anytime if you need to…..

Jump to this post

Bonnie, it's good to hear that you are doing well, even without the antibiotics. Your daily routine has obviously made a big difference for you! Are you still seeing Dr. Swenson at Emory? I hope you continue to feel well and stay infection-free.

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