Options if MAC goes untreated

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:

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.

Hi Sue -

Thank you so much for your response! This is enormously helpful. I had seen McShane's presentation and this NJH presentation before and learned so much from both.

I have asked my doctor several times about identifying the exact strain that I have and obtaining data on the quantity of bacteria, and he has repeatedly said that we don't have the ability to do this. I am going to be more insistent about this at my next visit in January. I'll do the legwork by calling NJH to create the on-ramp for the doctor's understanding and cooperation.

This is such a strange disease - a veritable shape-shifter that looks different in each person it inhabits. If not for coughing up a plug of blood one time almost two years ago (incidentally the day after hiking 7 miles up and down a significant climb with absolutely no problems), I would not even know I had this condition.

Interestingly, one of the things I found out through genetic testing is that I am a carrier for both cystic fibrosis and primary ciliary dyskinesia, and the doctor believes this particular genetic constellation may be the source of my bronchiectasis. He said there really is no research done on double-carriers, so it's hard to know for sure. That being said, from what I've been able to glean through research, they're finding that carriers for cystic fibrosis - once thought to be at no risk of developing the disease or experiencing symptoms - may actually develop a mild form of the disease. I have a follow up appointment with the geneticist next week, so should know more.

I give enormous thanks to you and to everyone on this platform. Your advice is always super clear and spot-on, and I think we all gain comfort from knowing that you are there, hearing our concerns and sharing from your heart and experience. And of course we all gather strength from holding one other up through the tough times as well as celebrate when one of us takes a step forward.

I pray that one day a single drug will be identified that will show these bacteria the door once and for all.

With kind regards and vast appreciation,
Jill

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

Hi Sue, @sueinmn Thanks for the response and tips from others as well. I do use postural drainage, breathing techniques and will restart Aerobika. Airway clearance is most important I was told, and I eat healthy meals and snacks and try to keep up my BMI. I often wear masks in crowded places, use nasal irrigation to help with occasional sinus issues and after being out in crowds. Exercise too but I could do more at times. I will use NAC once in the mornings now since twice a day might have lowered my diastolic pressure. Trying to figure that out.

Fortunately I don’t have MAC or cavities to treat at this point, and was told that my BE is mild despite the coloured mucus that must be cleared each day. BE can leave me feeling fatigued at times. I pace myself if that is the case.

I guess the cilia in my lobes / lungs were destroyed or partially destroyed by infections but the specialist says I only have mild Bronchiectasis.

I’m fortunate that my lung function etc is normal. I’ve read about the various scales that are used to assess severity of BE. I have mild BE now, but with age and possible infections over the years, that could change? That’s why I’m adamant about doing the airway clearance each day. I was told it can potentially help clear infections.

Nebulizing with saline is not something that has been recommended to me, although I have a lot of mucus to expel, but no asthma or other health challenges at present. I’m grateful for that.

I was wondering if nebbing might be something to consider to help avoid MAC or are there some risks to it at this stage for anyone without MAC? Thanks again. I welcome the suggestions or tips.

I also have mild bronchiectasis and good lung function along with mild asthma. Mayo recommended albuterol nebs and Aerobika daily and my doc in their Bronchiectasis clinic agreed. He added hypertonic saline “a few times a week” in October because I kept getting viral infections from grandkids last winter. He saidAccapella also works. I’m just sharing for additional info.

Linda-
It appears I did not send properly my original reply, I don't see it here on this thread.
To keep it short and for confirmation did it take two years to rid yourself of the MAC?
Have you had a positive culture(s)at any time after that period when your cultures showed you eliminated the MAC?
You apparently did build a "brick house."
Barbara

Hey, Barb! Yes, 2yrs. No positives. Yup, do the daily work. Built a brick house:)

How wonderful that you were able to do that and as well show that it can be done.
It does take much work to do it.
Thanks Linda for your showing us what can be done.
Barbara

Of course, we all experience setbacks from time to time—I’m no exception. I’ve had to take antibiotics while on vacation and once needed treatment to knock out Haemophilus. But facing these challenges becomes much easier when your body is strong and well-supported with the nutrition and tools it needs to heal.

Thanks @pacathy for this info. I had some lung inflammation 8 months ago from two earlier infections and I was prescribed azithromycin (250 mg) to take 3 days a week to improve the inflammation.

It seems to have helped along with the postural drainage/ breathing techniques and NAC. Like I said though, I only use 600 mg of NAC in the mornings now.

My lung function improved recently to the highest end of the FEV1 scale ( for normal) and I haven’t had an infection in 9 months or so, even though we travelled this past summer. I feel fortunate but the winter has just started.

I won’t be taking the antibiotic beyond the next few months. It is a go-to treatment for MAC so don’t want to risk that. We’ll see what happens after I finish the trial of it.

The information from you and others is helpful. Just trying to figure out how to attempt to maintain this good lung function and mild BE, despite having signs of it in all my lobes, as far as I understand. Everyone has such a different experience with this chronic lung condition.
Thanks!