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CT Scans vs Sputum Cultures, which is more important?
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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I have been on the big 3 since Aug 2022 and have the usual nausea and diarrhea. However 3 months ago I failed 2 field view eye tests and my eye specialist immediately took me off ethambutol. Everyone is different, but precautions must always be taken. I continue with azithromycin and rifampin for as long as it takes.
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2 ReactionsHi Renee. Interestingly enough, the one drug my pulmonologist told me not to take for pneumonia or other non-NTM infections is Z-pak! I too have been reluctant to start drug treatment for MAC because of side effects, length of treatment, and low success rate; but luckily my current airway clearance routine is effective and enables me to remain active. Good luck with your new pulmonologist.
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1 ReactionAzithromycin is the antibiotic that you are not supposed to take alone as it could make your MAC worse. If you are just taking it short term that might not apply.
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3 ReactionsIf you take azithromycin alone without ethambutol/ rifampin/ clofazimine you are more likely to develop azithromycin resistant MAC, which severely limits your treatment options and success rate for clearing MAC.
In spite of the fear around MAC treatment, about 70-80% respond. Treatment side effects vary tremendously by person with many people doing fine especially after an initial adjustment
There is some evidence that staying on the medications for 15-18 months once you are culture negative as opposed to the usual year might decrease the rate of relapse
Most re infections that occur in about 50% of treated patients are new infections
They do not always need treatment- same consideration apply as with initial treatment
Thank you for your information. Who knows about these doctors. So far one pulmonologist says don’t do anything and two doctors say Azithromycin until I go to the 2nd opinion pulmonologist on the 26th. Makes one not know what to do so I will continue taking Paximune and another immune building natural thing and lots of vitamins. Also getting BComplex and B12 shots. So far no air restrictions and I have been working hard in my yard. I even put down 55 big bags of mulch so definitely getting exercise. Lol. Hopefully my body can fight a lot of this off. I am trying to be proactive about this. At least now I feel like doing something rather than sleeping. Lol
That is what I worry about. Not being able to see is not an option.
Will your eyesight get better once off of that antibiotic?
Sure makes it hard to decide what to do. I may agree to try everything except the one that can effect your eyesight
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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2 ReactionsNot even all pulmonologists know enough about MAC. So certainly general Drs might not. It still sounds like general Drs recommended the Azithromycin which most likely is contra indicated to take alone if you have MAC. So this is what we are trying to convey. It sounds like you are in pretty good shape and can stand to wait for your second opinion without taking the antibiotic. Safety first as they say!
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1 ReactionAlso please wet down any potting soil or mulch as well as wearing a mask, so there is less dust
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