Update on my diagnosis and treatment

60 is the magic age for Mac and bx no matter what our previous health was

I am 69 and have always been healthy & very active other than Crohn's which is under control w Humira (Crohn's & bronchiectasis are associated, not clear why). Was dx incidentally w BE 2012, "idiopathic", stable & asymptomatic til I started having chronic dry cough & ended up eventually w BE/NTM specialists who did all baseline blood work you are probably getting & then positive for MAC. Someone here said "we run away from our dx" & I recognized that! I am treating in a study but still have to deal w "fight or flight" re health issues. Luckily my condition is mild but the fatigue is challenging!

It truly makes me feel better that I am normal in some ways with this. I've had medical issues in the past that were one in a million.

A quick question: what do the abbreviations mean? dx mainly. I believe BE/NTM is the acronym for this infection.

Shame on us for talking in jargon without explaining the terms. Here's a little glossary for you.

NTM is non-tubercular mycobacteria, which is typically slow growing bacteria. The most common causes of our infections are mycobacteria avuim and mycobacteria intracellulare, which we typically abbreviate as MAC (maycobacteria avium complex) - there are dozens of more rare strains as well. The most concerning of those are mycobacteria abscessus (abbreviated M. abscessus) because it is rapid-growing and doesn't respond to the usual "Big 3" antibiotics. Another is M. cheloanae which is usually a hospital-acquired infection dangerous to people with compromised immune systems.

The Big 3 are the three antibiotics typically prescribed for MAC - azithromycin (or more rarely clarithromycin), ethambutol and rifampin.

BE or more rarely BX is Bronchiectasis, a disease of the lungs where the ends of the bronchioles become stretched out, and sort of hard so the don't work properly with the cilia to move mucus out. There is rarely an explicit, known reason why any person "gets" Bronchiectasis, but some contributing factors include repeated lung infections or pneumonia, long term or undertreated asthma or COPD, exposure to irritating substances, and being a carrier of the Cystic Fibrosis gene.

DX stands for diagnosis

ABX stands for antibiotics

I need a reminder like this from time to time - sometimes we resort to abbreviations when we are in a hurry. Or I might be responding to someone very familiar with the terms, forgetting that this is a forum where many people may be reading our conversations!

Thank you for that. I’m very new and have been lurking for a week or so. I was diagnosed the day before Thanksgiving and I’m doing lots of research and found this Mayo Clinic site. It’s very helpful. Thank you.

Does your pulmonologist specialize in bronchiectasis? Have you learned about airway clearance techniques twice daily with albuterol and 3 or 7% saline? Lastly, why are you being treated with a steroid inhaler.? Although sometimes indicated, they can lower your immune response and cause susceptibility to infection and antibiotic resistance. Some require steroids for other lung diseases who also have BE. I have had short term oral steroids but only prescribed in severe exacerbation of BE/infection. I’m seeing a bronchiectasis specialist at Mayo Clinic and am being followed by my local pulmonologist as well. I’ve learned a great deal from this site and others. Over time, my anxiety over this diagnosis has decreased as I’ve learned about the disease and treatment protocols. It’s part of my daily routine. We do treatments that work for us as individuals and does not apply to everyone. Some may have other conditions that must be taken into account when developing a treatment plan. Wishing you the best in your journey.

What can you tell us about your diagnosis? Do you have Bronchiectasis? Mycobacteria (NTM) or other lung infection? Were you having symptoms, or was it an "incidental" finding when you had an x-ray or CT scan for something else?

Thank you for the information. I did have the abbreviations incorrectly identified. We all need a heads-up from time to time, no problem.

I also have asthma, so we are treating the full bronchial tube for inflammation. He did find I had a secondary infection from a cold I caught a week before Thanksgiving, which set off my breathing problems. He gave me an antibiotic for that to take daily, and I am getting better. I had been on oral steroids for this, and he wanted me off them. I had only been on them for 5 days. He is treating the bronchiectasis first before the MAC. My chest is tight, at least that is what it feels like, and for the first time in probably 20-plus years, I get short of breath with no wheezing. I am taking the big 3. I am doing fine with them, so I will continue to see how I respond. I have just finished the second week today.

As for a specialist, he is very knowledgeable about the infection and such. He is also one who, if he needs more information or thinks I need a specialist, will do something about it. He is a member of a group. I know he is talking to the other doctors because both my mother and who has asbestos lungs, which she only found out about when she transferred to this group from Orange County. Also, my husband is being treated for pulmonary fibrosis. He was diagnosed over 10 years ago at such an early stage that he only notices it when he exercises. Because it was so early, his doctor put him on a medication that stopped the advancement of the disease. His is a very rare condition. I don't know if the doctor specializes in it. I do know that my husband has outlived most people who are diagnosed with it by at least 5 years and going.

Thank you for the information. I will put the question on the oral steroids on my list of questions for next month.

Oh yeah, I actually do not have a lot of mucus. I would compare it to the normal amount when most people wake up in the morning and have to clear their throats. I have a little more with this lingering cold, but it still is not hindering my breathing at all.