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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Renee | @rchildress | Jun 4, 2023

In reply to @rstel7272 "The big 3 was well tolerated by me (28 + 12 months). It was the Amikacin..." + (show)

Thank you for the response. I hope they give me something that doesn’t make me sick. I am pretty tough so we shall see.

irenea8 | @irenea8 | Jun 5, 2023

In reply to @rchildress "I was just diagnosed with MAC by a pulmonologist who said to just watch it for..." + (show)

It would seem to me that listening to your current Pulmonologist might be better than letting an MD try to treat your MAC. I remember my Pulmonologist saying (for example) that if you take Azithromycin alone it can make your MAC worse. You could get a second opinion but meanwhile (if it were me) I would not take anything without consulting with a specialist (Pulmonologist who is knowledgeable about MAC and Bronchiectasis etc). And ask your current Pulmo about starting airway clearance.

Rick | @rstel7272 | Jun 5, 2023

In reply to @rchildress "It all started with a trip to Yellowstone in October started coughing the first day in...." + (show)

@rchildress

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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Sounds like classic MAC, start the big 3.

Renee | @rchildress | Jun 5, 2023

Thank you for your input.
I have 2 doctors that know MAC and they both think that considering my current symptoms I should start the antibiotic and take it 3 times a week for the 3 weeks until my pulmonary appointment in a larger city. The pulmonologist in our town has a reputation of not treating things until things have progressed further than they should have but it was the quickest way to get the test done was to have him do it here. That was what the new pulmonologist suggested I do also.
I am not having a breathing problem now so they are just trying to head it off and keep it from becoming a big problem.
I am on the cancellation list at the new doctors office which is 1 1/2 hour drive from me.

I do appreciate all the feedback and am anxious to see what treatment they will suggest and hope it won’t make me sick.

karissy | @karissy | Jun 5, 2023

In reply to @rchildress "I was just diagnosed with MAC by a pulmonologist who said to just watch it for..." + (show)

Everyone has their own way by dealing with this disease. I was diagnosed in August of 2021. I have no symptoms however I walk 5 miles every morning and do my vest airway clearance twice a day. I plan to keep this up because I would refuse the treatment. According to my ID doctor it never goes away even if you take the medicine. You can be in remission but it comes back. I am afraid of every side effect of all three antibiotics. He has also told me he has quite a few women with this who have lived with it 20+ years without taking the medicine. He has told me and I have read nothing good about it. With my age of 72 he feels I am doing the right thing. It all depends I think if you’re willing to chance taking the medicine. Life is a gamble for sure. Do what you feel best after discussing it with your doctor and I wish you the best.

Renee | @rchildress | Jun 5, 2023

In reply to @karissy "Everyone has their own way by dealing with this disease. I was diagnosed in August of..." + (show)

Thank you for your response.
If the medication makes me sick I probably won’t take it either. I have ordered some natural stuff already and since I don’t have a breathing problem and I am always working doing something I figure I can fight it off. Really building my immune system.

Rick | @rstel7272 | Jun 6, 2023

In reply to @rchildress "Thank you for your response. If the medication makes me sick I probably won’t take it..." + (show)

I fear MAC more than the big 3. I fear Amikacin more than MAC. 3x per week should be a piece of cake.

Renee | @rchildress | Jun 6, 2023

In reply to @rstel7272 "I fear MAC more than the big 3. I fear Amikacin more than MAC. 3x per..." + (show)

I can’t even tell I am taking the Azithromycin so maybe adding one at a time would effect me either. I am also taking a B Complex shot and have ordered some other natural stuff to build immunity. I plan on doing what I can to keep the MAC from effecting me to bad.

I appreciate your comment. I am pretty tough so don’t really think the big 3 will slow me down. I am going to look up the other one you mentioned
Thanks

karissy | @karissy | Jun 6, 2023

In reply to @rchildress "I can’t even tell I am taking the Azithromycin so maybe adding one at a time..." + (show)

Getting sick would not be my concern. When I was told I could loose my eyesight and hearing that is my fear, I know a woman who lost both and just sat in a room and cried. I also know another woman with MAC that destroyed her kidneys with the medication. These things are probably not the normal but enough to make me fearful. If it were just getting sick sure I would try it. There are more bad stories out there then good and everyone has to do what is best for them,

Renee | @rchildress | Jun 6, 2023

In reply to @karissy "Getting sick would not be my concern. When I was told I could loose my eyesight..." + (show)

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.