Negative sputum results without treatment

You have described the situation I find myself in. Have no clue about what it really means. Tested positive for MAC by induced sputum sample. Several months later my pulmonologist repeated the induced sputum test. The result was three negative acid fast smears. No treatment at all except my typical protocol of airway clearance via 3% hypertonic saline twice a day. Am anxious to learn more about what this means and what to do from here.

My daughter also was not treated and has been symptom free for over a year. ( See my post under hollyw last month). In researching this I found in 3 studies that "untreated patients with MAC lung disease have a high rate of progression with approximately 40 to 60 percent of patients showing signs of clinical and/or radiographic progression over the next 2 to 10 years of follow-up " . They would have treated her when she first presented because she was so sick with cavitations, effusions, severe anemia,and high CRP and ESR all of which are risks for progressive disease. But they didn't get the cultures back until she was out of the hospital and looking like a rose! They opted to not treat at that point and told her just to watch for symptoms. She needs to get follow up testing but is very reluctant as she lost her insurance , so I am gathering data to try to get her to at least get sputums and blood work and maybe a chest xray. She has reduced her risks factors by getting off chronic steroids ( she has chronic severe asthma that is now in good control) , diet and herbal treatments ( she has experimented with going off certain foods that are considered " inflammatory" and found her asthma was better) . I am hoping to find a specialist who takes her current insurance down in Boston ( we live up in Maine).Meanwhile , we work with her local PCP and keep our fingers crossed that she can boost her immune system enough to be one of the 50% who keep from progressing or relapsing.

Hi. Just getting around to sending input regarding NAC. In October I had completed two weeks of IV antibiotic treatment via PICC line and at the end of my 28 days inhaling Toby. I had not been able to collect a sputum sample to see if my Pseudomonous A. Was gone. I had read posts about NAC so purchased some. I took one 500 mg and the next day I coughed hard, chest rattled and up comes sputum 4-5 times. I was thrilled but just could not believe that was from NAC. I did not take it that day but did the third day. More coughing up that green/yellow/brown stuff we're familiar with. This happened three times. I was thrilled to be able to clear that stuff out. Now I'm feeling like my old self--not short of breath, eating, gaining some weight back.. I continue doing 3% SC daily and taking NAC once daily. I ask my MAC doctor now he feels about me taking it and he said he has several patients taking it and he said to take 2 twice a day. At the moment I still take only one daily but if symptoms flair up I'll increase it. Hope these comments are helpful. Also my initial lab results came back negative but now waiting for AFB to culture out. Praying it will be negative also. God bless you.

What is NAC?

N Acetyl Cysteine

Thank you.

@nannette , Hello Nan! So glad that you are testing negative now. Did you ever get rid of your nagging cough? I hope so! P.S. we need to get together again.

Wanted to respond as someone who also has had bouts of coughing up blood. I also was diagnosed after bouts of hemoptysis. I have mild bronchiectasis with MAC, and I seemed to cough up blood about every 4 to 6 months. I started on NAC 600 mg twice a day as well as 3% saline (generally once a day, or twice if I am exposed to a cold or having worse symptoms). I have not had any bouts of hemoptysis in over 6 months, so the NAC has at the very least not made it any worse - and I feel it has helped with my airway clearance and actually reduced the bouts. We'll see if it lasts, but I would call this an improvement! I wish my pulmo believed in retesting for MAC because I would really like to see if I am still positive, or at least to know if the counts have decreased.

@shooei Thanks for your response. it's very heartening!

Hello shooei@shooei
Yes, I have coughed up blood. It doesn't seem as though I cough it up, but I can hear a gurgling sound and know that the blood will be coming, and it is sooo scary. I was diagnosed with pneumonia both times that I went to the ER and a CT was done, and the last time, almost 3 years ago, the radiologist said the symptoms were pneumonia and possibly MAC. That was the first time that I had heard of MAC and no one explained what it was, so I went on-line and looked. The allergy/asthma doc that I see, didn't agree that it was MAC, yet when I had the yearly CT in his office, the radiologist report was "consistent with MAC". Having COPD, bronchiectasis, and asthma, I nebulize with Brovana twice daily followed by one puff of Alvesco inhaler. It has been almost 3 years since last having any blood come up, but we live on the edge that it might. The blood appears very liquid and would sometimes be a couple of tablespoons. It first happened about 20 years ago, and at that time was diagnosed as pneumonia. Has happened twice since then. IF I seem to get a chest congestion, I start on 250 mg of an antibiotic for 5 days. It is a child's dose, but I have problems with most antibiotics and have had C-diff in the past due to them. Hope this helps you a bit.