Long term antibiotic success question???

Mine MAC was "knocked down but not out" by many months of antibiotics. I began using 7% saline with my airway clearance about 6 months before stopping the meds. My lung CTs have been stable for 44 months and counting on airway clearance with saline. If and when I become symptomatic in any way or if my CT shows changes, we will do sputum cultures to check again.
Sue

I have not had any of those experiences you mentioned to qualify for an answer to your question, and I would say that the population who frequent this forum for the most part have not either. I know if I were completely well, I wouldn't spend nearly the amount of time on here. So, whatever answers you get on this forum to those questions, they will be most likely skewed toward meds not working for whatever reason for those individuals. Sure there are some here with success stories who just want to give back, but the average Joe who has been successful is most likely out living his or her life (with a lifetime commitment to airway clearance.) To make such decisions based on real data, I would think you would be better off to get data from a population of people who represent both those who have had success as well as those who are still searching. Short of a clinical trial or something of that nature, I would think a doctor who treats MAC frequently would be your best bet to get data less likely to be skewed. It sounds like you have both Dr. Daley and Dr. Eddy at NJH and Dr. Swenson in Georgia, who see countless cases and are extremely well respected docs, at your fingertips. They are they experts; the rest of us just have our stories which are largely stories of being sick with this working or that not working. If you are looking for reasons not to take the meds, then you will find it in places like this where the success rate is negatively skewed; if you are looking for actual unbiased data based on clinical experience, then, it seems to me, you are more likely to get that information from the docs at your disposal. At the end of the day, though, it has to be your decision of whether you are willing and/or able to risk the disease progressing to a point where even what is being offered now is not enough and more drastic measures becoming necessary to control a disease out of control. Whether you take meds or not, to treat MAC and bronchietasis successfully, it is a lifelong lifestyle change that you will have to embrace. We don't get to go back to where we were before we knew about it as much as everyone of us wishes we could. I think you have to ask yourself, if I don't take the meds and I get worse, say cavities form, and they want to take a part of your lung, will you be happy you didn't take the meds. Or say cavities form and are so extensive that event the option of removal of a part of your lung is no longer an option. Will you be happy you didn't take the meds? Or say, the disease progresses and your lungs collapse, will you be happy you didn't take the meds. The decisions you make today most likely will affect your outcome. Do what you can. It's all you can do.

Yes, I see your point………makes sense!

Sue when you say knocked down, what do you mean? Is there a bacterial count that is measured? I’m confused?

Sue how often do you get ct scans? Do you have any symptoms from MAC?

I get a CT scan one year, x-ray the next - a scan would be ordered if anything new showed in the x-ray, but so far I am stable since October 2019. At that point my ground glass opacities cleared and nodules had shrunk, but my sputum culture was still positive (I don't remember the numbers.)
I do not have MAC symptoms, but I have had exacerbations - respiratory illnesses where I had to increase my airway clearance, add duoneb (a 2 medication Rx) for a few weeks. A couple times I had to take oral steroids to get my asthma under control, or an antibiotic short term for bronchitis - and I had whatever went away. This did not happen when I had MAC - antibiotics would make me feel better for a week or two, then I would feel as sick as before, or even worse.
I also cough every day, more or less depending on how good my airway clearance, asthma, allergies, and exercise. Running with the dogs or kids, dancing fast or riding my bike, guarantees a coughing fit. That is no fun since Covid started - people always look at me like I have "the plague" even when I tell them it's just my bad lungs.
If I get even a hint of illness - more mucus, colored mucus, heavy chest, or just feeling unwell, I double my airway clearance and saline, drink more water and herbal tea to thin the mucus and get extra rest.
Sue

Hey Bon!
I just wanted to throw in my 2 cents regarding “data”. I agree with a lot that mdf said but also wanted to share that according to my research, the best shot you have with antibiotics being successful is the FIRST time. What that means is that if you decide to do treatment, you need to STICK with it.
Successful treatment is usually characterized by culture conversion within 6 months of starting treatment ( stats show almost 80% of people who clear do so within 6 months). When you reach that milestone, then you have to continue meds for another year—minimum.
So yes, big decision & big commitment. However, if you stop treatment ( for whatever reason) the percentage of clearing MAC decreases significantly according to data.
I hope this helps in your decision making process.
All the BEST!
Dee

mdf and nana43, well said! You both clearly describe the decision and consequence process of treating MAC. Very helpful - thank you!

Whatever it is that I have ( still waiting for results) it did not show up on a chest x-ray only on CT scan. That was very concerning to me for people who may be walking around with MAC in the early stages ( very early) and have a chest x-ray for some other reason and get an OK health report.

I think there are a lot more people with MAC then know they have it........it's everywhere......and for some reason some people never get an infestation and others do.....I went an entire lifetime never even hearing of it.
Yes, I have had many chest xrays throughout my life and MAC was NEVER mentioned. I think the CT really shows it better...