1. < MAC & Bronchiectasis
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What happens if you don't become negative with therapy?

Posted by mary80 @mary80, Mar 10, 2025

I have been on therapy with the big 3 for a year and still positive to Mac despite the fact that CT Scan has improved. I fear that Mac will no longer go away. What should I expect in the future? When I’ll stop the antibiotics, will it start to devour my lungs again? I am "only" 45 years old , with two small children… and I'm worried

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Sue, Volunteer Mentor | @sueinmn | Mar 13, 2025
In reply to @kathyhg "I’m probably repeating what some others have said but I had a couple of thoughts about..." + (show)
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I’m probably repeating what some others have said but I had a couple of thoughts about your post. You say your CT is showing improvement but you are still positive for Mac. Has the amount of bacteria in your sputum samples (AFB) changed? They can go as high as 4+ and as low as “few” before being negative for Mac. It might give you some hope if your bacterial count is going down.

I was on the Big 3 for 6 months before getting side effects and going off of them altogether. Besides the side effects, my bacterial count was higher after 6 months than it was when I started the Big 3 and this particular drug combination is not an option for me now.

I’ve been nebulizing twice a day for nearly 6 years now and my CTs still fluctuate a bit and my AFB also fluctuates from no Mac to 2+. I haven’t started taking medications for Mac again. Although I have had some fluctuations in health and I’m more vulnerable to catching respiratory illnesses, I feel quite well and I’ve learned to carry on with life. I believe there are more people than just me out there who are living with Mac and leading pretty normal and productive lives.

Finally, even if the Big 3 on their own don’t work for you, there are other options for drugs to take with or instead of the Big 3 together. There are also drugs in development that target Mac and other NTMs and they will hopefully be available to us before too long - so this gives us some hope regarding better treatment options for this disease.

I wish you well and encourage you to be an advocate for yourself so that you get the best and most personalized treatment that is available for you.

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You are so right. I have two people in my "inner circle" right now who are positive for MAC and not receiving any treatment. One shows minimal infection on CT, is not a candidate for the meds and has begun airway clearance. The other, not sure whether it is a "true" positive due to difficulty with the samples, is totally asymptomatic, will retest in May and probably have a CT.

My concern at this point is whether doctors not full familiar with NTM/MAC treatment protocols are prescribing medication too soon based on single sputum cultures, not waiting to get 2 positives and trying other avenues.

Early research into NTM/MAC revealed that as many as 50% of people clear the infection spontaneously (does that mean they had a false positive, or a good immune system???)

So to everyone who is concerned that "this infection does not get enough attention" - there could be a downside. If docs are encouraged to treat with antibiotics rather than refer positive cases to the experts, we could go from not enough treatment to the wrong treatment.

I am happy to see newly diagnosed people come to Mayo Connect and educate themselves so they make the best possible decision for their situation.

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Sue, Volunteer Mentor | @sueinmn | Mar 13, 2025
In reply to @mary80 "Where I live it’s not simple to obtain arikayce. They will give me amikacin for iv..." + (show)
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Where I live it’s not simple to obtain arikayce. They will give me amikacin for iv nebulized. I hope it is equally effective

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Arikayce can be shipped in a temperature controlled container. If it was prescribed for me, I would try to get it that way, only using Amikacin Sulfate for IV as a second choice.
The Arikayce is in a liposomal base that optimizes it for use in lungs, and is furnished in single use vials. Amikacin sulfate must be measured, diluted and stored by the patient, and has not been optimized for inhaling.

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