Connect
← Return to Options if MAC goes untreated
Discussion
Comment receiving replies
Yikes, I just started a long response and my computer ate it!
What is lacking in this picture is what strain of mycobacteria grew each time and how much there was (often scored 1-5 or as few, many...) If your lab doesn't do this (many don't have the capability, others only do it if ordered) you could ask for your specimens to be sent to the lab at NJH in the future. Many doctors/clinics do this to get a full picture.
As to how long to neb saline twice a day - obviously it is helping you - you are mostly asymptomatic and your lungs are not deteriorating- yay! Keep doing it. Here is Dr McShane has to say about airway clearance:
Should you treat? Here are the current guidelines from NJH:
Now the big question for you - to treat or not? This is a very hard one! Knowing what I do now about MAC and Bronchiectasis (I knew nothing in 2018) here is my PERSONAL OPINION. I would go with the "status quo" unless I became symptomatic with fever, cough, shortness of breath, all-day fatigue, frequent exacerbations (respiratory infections, increased colored sputum, etc) or worsening CT scans OR unless the doctor and an ID doc recommended starting treatment.
In my case, almost 7 years ago, that means I would have treated, even with more knowledge, and even if 7% saline had been widely used because I was severely symptomatic for many months, and my asthma was wildly out of control. Today I would be much more conservative and watch for three consecutive positive cultures that were not improving as well as other symptoms.
I hope this gives you some help in reaching a decision.
Replies to "Yikes, I just started a long response and my computer ate it! What is lacking in..."
Connect
Sue-
I just sent a reply to Linda and then read your reply to Jill.
I was encouraged and glad you gave your PERSONAL OPINION but then I read that last sentence....."OR unless the doctor and an ID doc recommended starting treatment". With that I'm back to square one with a decision to start the treatment that Tyler is recommending.
None of these problems for me "fever, cough, shortness of breath, (PFT off the scale in the right direction) all-day fatigue, frequent exacerbations (respiratory infections, increased colored sputum, etc) or worsening CT scans." All blood tests are good and I do not have any other major health problem. Yes the sputum cultures come back positive consecutively but the readings do not consistently, (monthly submissions) show the results in the same way. A couple of times results were shown in colonies and another as 1+. That is frustrating for me.
I would so love to clear the MAI on my own.....as Linda was able to do....but we are "all different" with different situations ........as we constantly tell each other.
Well, I still have to decide for myself what I want to do. No magic wand and no ...for sure.... answer.
Barbara