Prognosis

Very happy to hear this and that you followed your instincts—sometimes the body says “no”. Glad to hear that you can walk that much—it is no doubt helping your lungs. May you continue to thrive!

Thank you for saying this, "I am grateful that this vigilance is helping me move into the future with better overall health so that when there is really no alternative to taking a drug temporarily, I will be strong enough to weather its deleterious effects."

For me, my decision to not start the antibiotics suggested by Tyler has much to do with what you said and at age 82 and 3 1/2 months of age. This is my first chronic illness.

In looking back I believe I have had the infection since 2017, or prior, because I was needing to clear my throat of a substance each morning for a short time in the mornings and there were days that I brought up a small mucus head that was deeper, much deeper, in color than what comes up now after starting the routine for BE/MAI including air way clearance.
All during that time from approximately 2017 and now I have overall felt well and traveled to Europe 2 times. My worst experience was the 2018 flight return to the USA due to the dry air of the airplane and the painful sensation in the airways of the nostrils. My history of dehydration was due to my not listening and practicing the guidelines of drinking enough water.
During 2020 I was also at my worst in terms of my immune system due to allowing myself to let it weaken due to all I was not doing for myself during a horrendous period of stress with the settling an estate and the Covid precautions I put into practice including masking. However just before we were told to mask I blew dry leaves away from the foundation of my home, without a mask, and it was shortly after that when things took a turn. Needing to clear my throat gradually worsened to what it is today. This is my worst problem, having to constantly clear my throat which could be related to the small hiatal hernia that NJH found in Oct. of 2023.
I did not have Covid until 2024 (went to local pulmonary rehab for 3 days, no one was required to mask, and by the third day Covid diagnosis) and the effects of Covid lasted for less than a week without taking a full routine of Paxlovid. At the time of the Covid diagnosis in 2024 I had been back on my no processed foods diet etc. and drinking the water I needed.

Again, we are all different and different philosophies abound in all things, be it personally, or with the medical professionals etc. etc. . and as well, we all have different systems, genes etc. and health problems that require adjustments and deep thinking to help ourselves.

Wishing all of us to find our way to the best way to take care of ourselves and live our best life.
Barbara

@blm1007blm1007 The presentation and ultimately the treatment of BE and even MAC can be unique for each person. There are so many factors to weigh, including one’s age, risk aversion, state of infection
(changing CT scan results) and overall health etc.

Having physicians and providers who follow the science and are prepared to share the options with each patient is key. People then have the choice for next step treatment, after weighing the risks about disease progression. We have to rely on real science.

Jimmy-
Yes I do agree with all you said, including that very important word in a world full of AI, 'real' science.
Science has helped us through many many things and will continue to. Believe me I often think of and silently thank so many people who have come before us that have done great things for humanity with science etc. be it with health matters or invention wise.
I plan to ask to have another C Scan in April and review all again. I believe I will do fine on the antibiotics its just that I truly don't know and of course if I don't do it for sure I won't' know. One of the risk aversion factors for me has to do with....possible other illness happening and then what per antibiotics if you come down with pneumonia, RSV etc.
Thanks for your thoughts.
Barbara

@blm1007blm1007 I’m not a Jimmy 🙂 but yes, I’m mindful of and very grateful for all those who work in science and those who share in this forum.

I know protocols and treatments change, of course as new evidence becomes available. I don’t have MAC but I watched one of the videos that Sue had again recently posted. It was very informative and helped explain when and why providers make decisions about recommending ‘the big 3’ to patients.

I noticed the presenter emphasized that knowing the specific organism and the subspecies even is so critical to that final decision.. in addition to any changing CT scans etc. It’s a big decision but the research showed that in some cases treatment was necessary, to either halt or possibly provide a cure. I understand your concern about possible illnesses and what antibiotics would be used at that point, should you start on those big 3. Maybe your provider could answer that question or others here, with experience.

Wishing you the best as you make a decision.

Thanks, jnmy. 😁
Yes I watched it also and read on one of the threads here on Mayo info that puts me in the low category of MAI. I will be asking my pulmonologist your suggested question and other this coming week.
Barbara

I was the same way; I started thinking about my will. I'm not saying I am okay with it all, but this site has helped. I was diagnosed the day after Thanksgiving a couple of months ago. I had no one to get more information about it because of the holidays. All I could do was get the meds they prescribed. Even the person who called me was unreachable. She left me a voicemail. (to this day, no one can figure out who she was. She said she was associated with my medical group and one of our local hospitals, which is not where I got the testing done.)

What makes me not feel great about this is before I got bronchitis, which started the testing because I wasn't responding to antibiotics, I had minor symptoms. They diagnosed the pneumonia, and off we went to find out how to treat it. The thing is, my symptoms were not from the MAC. I was finally able to get rid of the bronchitis, but I still have a tight chest and shortness of breath. It was better when I could take prednisone, but my pulmonologist said no. I don't know why.

My Infectious disease doctor says this is entirely curable. The holes and spots in my lungs will go away. I hold onto this, and it helps me. Coming here is also the best depression medicine I can take.

My case differs slightly from most here; I don't have mucus. From what I can gather, it is all the Bronchiectasis. I do have asthma, which is no worse than before the diagnosis.

I am 62, the most common age for MAC to appear.

One last note: Most of the fear comes from something we can't control. So, take control. I have asked questions and brought in information to my doctors. This has given me a say in how I am being treated. Also, I made the call to the specialist. I don't have an appointment until June, but it is a start. (I'm on a cancellation list, which has never worked for me). Also, keep busy. Take your mind off of it. I can't work full-time right now, so I am sculpting polymer clay and making some stuff to sell at a show this month. I also find that driving actually improves my breathing. My mom even noticed it. I have no idea why other than I love to drive.

From what I have learned, you stand a very good chance of watching your kids and their kids grow up. I can't say you absolutely will, but it is most likely the MAC is not what will stop it.

Warm water. Interesting. I do notice coffee and tea calm my cough and cold makes it worse.
I try to eat very clean most of the time. Having a hiatal hernia and reflux makes it more important

Hi, I just wanted to throw in here that the tight chest and shortness of breath can be symptoms of asthma. I do not have asthma but had the same symptoms a couple months after starting treatment for MAC, with corresponding results on my pulmonary function testing. My docs think (ironically) it's an asthma- like response to the inhaled med. They started me on Albuterol (2 inhaler puffs) before my airway clearance (2x a day, with the inhaled med just once/day). It has stopped the tightness. I have improved mild shortness of breath.

Mine isn't asthma. I have lived with that since I was 18 months old. When I take a breath, I reach a point where it just stops. It is almost like my lungs hit a wall and won't expand further. Asthma is in the bronchial tubes and affects breathing very differently. I can exhale fine, which is the main sign of my asthma. I also took my Ventolin inhaler in the hopes that it would help. No such luck most of the time. The only medication added that I could be getting a reaction from is the Breztri inhaler. I still had an infection when I started on it, so I have no way of knowing if it is helping or might be hindering my breathing. I will talk to my ID Doctor next week about it.