MAC - To treat or not

Ok so full disclosure I am still relatively new to all of this and am in the reverse position where I have little to no symptoms but lots of lung damage on my CT. With that said my initial question would be is your pulmonologist a BE/NTM specialist? If not, I would find yourself a BE/NTM specialist. I obviously have little idea of your overall health but there are many here older than you that have treated their MAC, though not everyone decides to treat for the reasons your doctor points out. Everyone is different but given the decline in your quality of life, if I were you I would want to at least try treatment (assuming you have MAC, seems that is still an issue) to see if I could improve my symptoms. It is true that not everyone tolerates the antibiotics but many do, and there are a few adjustments that can be made to try to improve tolerance for those who have issues. Even if you can’t get rid of your NTM, assuming you have it, you might be able to tamp it down enough to feel better. I say this as someone who has not yet started treatment, and many of my concerns mirror those raised by your doctor. But I feel fine. If I didn’t, for me, the scales would immediately favor treatment. Again, I don’t know your whole health picture and am a fellow patient, not a medical professional, but I do want to support your finding a specialist who will at least have a full discussion with you about the possibility of MAC, keeping an open mind to treatment should you have MAC. In the meantime do you do airway clearance, including nebulizing with saline (many here use 7% but lower %’s can be used if more tolerable). If not, I would discuss with your medical team ASAP as this is considered basic hygiene for those with BE and may help with your symptoms regardless of your MAC status. One last comment, from reading discussions from other patients on this forum, I have read that treating pseudomonas can be quite difficult. Have you done follow up sputum testing to see if the pseudomonas has cleared or is at least sufficiently tamped down. It may be that you need further treatment in this regard, has this been discussed with your current pulmonologist? What does your current pulmonologist say about your short of breathness, given it’s recent onset? Does he have a plan to get you feeling better?

@carolinediehl Welcome to our group - @bayarea58 might be a new member, but she has great advice. Please look for a pulmonologist who regularly treats MAC and Bronchiectasis, only a minority of them do because it is quite rare.

Here is a key - did they teach you to do daily airway clearance to help keep the mucus from building up in your lungs? If not, this is not their specialty.

As for age and treatment, there is a whole lot more involved in the decision, my friend is being evaluated for antibiotic therapy now, even though she is in her late 70's and has other health issues. And the 60% success rate is fairly old news, there are new drugs now that improve infection clearance.

Do you have the option of finding a new doctor?

Hi! I also have Mac. I was diagnosed a couple years ago and mine was moving so quickly that they were extremely concerned. I went from a couple nodules to nodules everywhere moving into the other lung.

My doctor put me on the daily dose of ethambutol and daily azithromycin. Within 6 months my Mac was completely gone. I was not on all three medications like many people are and some people can't tolerate that. I tolerated it very well but I couldn't be on the third medication because of a different medication so I was forced to normally taking two. I also started taking a relatively new drug Arikayce and it's a nebulizer that you inhale everyday for about 15 minutes. It's an antibiotic. That really helps finish healing anything that wasn't healed. I only stayed on that for a few months though. My case is maybe not that normal just because things cleared up so quick for me and I was going through cancer at the same time. I stopped my antibiotics about a year ago and have regular CT scans on my lungs. I have not had any more reoccurrence or the mac getting worse, it has stayed the same for quite a while now... Of course the hole in my lung is still there but nothing has really changed with it and that's what they want to see.

I would definitely do any treatment. They asked because you don't want the Mac to get worse. The problem with this is that it puts holes in your lungs that are permanent. Or if you have any questions I'll do my best to answer them!

Angela

Ok. First off I don't know what you mean by holes in the lung. I thought a hole in the lung collapsed your lung giving you a pneumothorax. You know, like "he shot me in the lung with a gun and the bullet left a hole in my lung." Is the hole in the lung phrase I see others talking about something else?

His advice was to continue my medications I have been on for years, resume using my vest and nebulizer twice a day with albuterol and 7% saline, and to see him again in 3 months after I get a repeat CT scan along with a pulmonary function test. I have been through Pulmonary Rehab twice already. The only time I bring up sputum is once I am already sick. Vest and nebulizer do nothing. How do I go about finding a doctor who regularly treats MAC and Bronchiectasis? I don't think mine does. The practice web site listed his interests in such things as: Lung cancer, Advanced bronchoscopy, Robotic bronchoscopy, Endobronchial ultrasound, COPD, Asthma, Interstitial lung disease, Obstructive sleep apnea, and Critical care.

You bring up some good questions. No, we don't know if I have NTM or MAC because no one has done a bronchoscopy even though the doctors in the hospital suggested it. And apparently the assumption on discharge from the hospital was that since clinically I felt better, had no fever, wasn't coughing, completed the 14-day treatment with antibiotic and only got SOB with real exertion beyond my normal activity I was cured. I told my pulmonary doctor that since doing all that I came home, felt great at first and now need to use oxygen more than I ever did and at a higher level! But where do you even start to find someone with the skill and knowledge to treat those things?

Let's start with roughly where you live so we can make suggestions.

If you are able to travel, National Jewish Health (NJH) in Denver and Mayo Clinics in Rochester, MN, Florida and Phoenix, AZ are good places to start. In addition, there are many excellent treatment centers around the country including University of Texas, Tyler, NYU Langone, Cleveland Clinic, and several I cannot think of right now.

Well I’m about as frail as they come(73 pounds). And we are the same age. Multiple nodules usually means MAC. You could do a sputum first for MAC and if you aren’t a spitting kind of gal like myself, have the bronch. Then you will know definitively whether you have it or not. And if you aren’t comfortable with your lung person get a good ID doctor. You actually should have both- a pulmonologist and an infectious disease doctor who work together for your benefit. Good luck! irene5

Good grief. When you get better from your current illness get the bronch done. I’m about as frail as they come and have had many bronchs. I had MAC for years- was treated and it’s gone. I’m not worried it might come back. Worrying, although easy to do, takes too much from us. Good luck! Irene5

Does anyone have experience with the Mayo clinic in Phoenix? Considering a move to that area and curious about their level of expertise with NTM. Unfortunately proximity to good care has gotten to be a major consideration for some of us. Thanks