Recently diagnosed

I was asymptomatic from Jan 2013 until September 2022 with Bronchiectasis and Mycobacterium simiae. I chose not to have treatment. I was being seen at Brook Army Medical Center In San Antonio(Fort Sam Houston) pulmonary clinic. I was doing great with my PFTs and had zero issues. Then I coughed up blood in September 2022 and the Abscessus popped up. If I had been seen at BAMC during COVID, I believe it MAY have been possibly caught sooner. My VA pulmonologist, states it was GOOD not to have been treated(w/meds) when I had few symptoms. Your fatigue and SOB sounds like it may be time for you. Are you losing weight? I have lost eight to ten pounds.

Thank you for responding, I am not losing weight( the only symptom I wanted 😅) , but I also just started menopause and I am a stress eater whether I’m hungry or not especially sugar 😫. I see ID today and am curious to see what he advises .

Hello Sue! Yes, I am new to the group and grateful for your reply and in finding this site.
I live in Canada.
I have had symptoms for approximately 4 years. They started with coughing up white phlegm in the morning and cough throughout the day. My voice was affected with hoarseness and I had to give up my love of choral singing! I was hospitalized with pneumonia in October 2023 and diagnosed following chest x-ray, CT scan and Sputum culture.
In December 2023 I was started on Ethambutol 1250mg, Mon, Weds, Fri, Azithromycin 250mg, 1 tab daily. Rifampin 300mg, was added one month later, every Mon, Weds and Fri. After 6 months, I had to eliminate Rifampin due to debilitating side effects. Since August 2024 I have continued taking the other two drugs, even though Azithromycin causes stomach cramping.
A recent Sputum culture still shows abnormality. I would welcome hearing stories on how people have managed this bacterial infection and success with any alternate medications.
Nessa

One question I always like to ask is whether you have been doing a daily airway clearance routine along with the medication?

No! This was not prescribed by my Respirologist.

@attracta I can’t talk to you about personal experience, but I copied an earlier post, from March, from @irene5 . She was responding to another person.. You can search for past threads on this site, but here is her response.

“I am “assuming” the med you are talking about is Arikayce?? It is inhaled. All I can tell you is I was on it after having not such great success with oral meds and was cured with Arikayce. I am also the caregiver for my husband with Lewy Body/Parkinson’s so I understand your plight with side effects and taking care of someone. The Arikares people are correct about side effects being mostly hoarseness. Wishing you well. Irene 5”
—
I have read other posts from people on this site who echo Irene’s comments. Something to discuss with your pulmonologist.

Good luck with your treatment.

@jnmy
So grateful to you for sending on Irene’s post🙏. I will take this up with my Doc on next visit. Nessa

You’re welcome. @sueinmn mentioned the importance of airway clearance. There are a variety of options. Your respirologist should follow up on that option, although you don’t need a prescription for an Aerobika.

Other ways to get clearance of mucus from your lungs that many people use is postural drainage of the lungs and other various breathing techniques. You just need instructions or diagrams and videos. You’ll find excellent support on this Mayo site and you can google the techniques as well. YouTube has some good videos posted, by trained professionals, that I wish I had known about a few years ago. All the best.

Here’s a video by Pamela McShane, a specialist in brochiectasis and MAC, on airway clearance. Airway clearance daily is basic for both prevention and treatment. I have bronchiectasis only and do it daily per Mayo and my Penn pulmonologist. I don’t get up sputum-it’s prevention. People who do produce sputum do it 2x/day.

Routines vary, but most nebulize saline (strengths vary-I use 7%) followed by an acapella or Aerobika with huff coughing. Sometimes aerobic exercise is substituted for Acapella though most physicians prefer both.
Good luck to you.
https://m.youtube.com/watch?v=VEYK67nld_o

Hi Heather, I hope you are nebulizing with 7% saline and can access Dr. McShane's airway clearance video. There's one that Sue posted a while back which really helped me. Twenty years ago, I had an atypical pneumonia and was on antibiotics for 3.5 years. I lived in Colorado and went monthly to NJH. I was in bed for almost a year and on the couch for 2 more. I did not look sick at all except for the first 6 months, when my hair was falling out. I had hundreds of nodules and as a result, I got mild BE. I now have moderate BE and M. Abscessus. In 2011, I moved to AZ and did not have the best doctors here. I believe the lack of a treatment plan-in the case I got bronchitis or other infections, took me from mild BE to moderate BE, and now Mycobacterium Abscessus. This site is extremely valuable, I have learned the importance of nebulizing and daily airway clearances. Also, exercise, diet, and if you're a mouth breather-learn to be a nose breather. Even if you are fatigued, exercise as much as you can. Those tiny cilia in your lungs are flattened and exercise helps with their regeneration-to stand up and push the sputum out. The bugs love sugar and carbs, so I've pretty much eliminated sugar from diet-though decreasing carbs is a struggle. Prior to diagnosis, I had night sweats, extreme fatigue, chronic cough, no appetite, muscle aches and I am now fairly asymptomatic (other than a cough when I nebulize and do airway clearance exercises). I also have a better pulmonary doctor, who sees me 1/3 months. Yesterday, he told me to add Zinc and Vit C with my D3. My PFT has not changed since last year. ID doctor wants to hold off on Big 3 until I go to NJH in May. All my nodules have decreased in size, but now I have 1 small cavity-so I'm guessing, I will be on BIG 3 (or 4) soon. I hope you feel better, I don't think there's anything worse than that insidious fatigue.