Starting the Big 3 - terrified

@doberdoo First, please take a deep breath, and know that your are in good company here! I certainly was frightened when I got my diagnosis and started to learn about MAC (also called NTM.) Then I found this support group at Mayo Connect, and learned I was not alone and everything changed for me.

MAC is a very slow-growing bacteria, so delaying a few weeks or longer to get a safe, customized plan in place for you and your other health issues does not mean the infection will grow rapidly out of control in that time.

Let's start with some basics - given your other health conditions, PLEASE consult you primary care provider, cardiologist and nephrologist before you start taking the medications. With all of your other conditions, it is vital to have a pulmonologist on your team who is knowledgeable about MAC and can work with your other doctors to develop a safe plan for you. The ID doc will manage your infection, but there is a lot more to do to get your lungs healthy again.

Not every person experiences every side effect with these drugs. They would not be on the market if that was the case. Some people report very few side effects, like some diarrhea, maybe fatigue... And a lot of the side effects can be alleviated or managed, if not, one drug or another may be stopped.

Many people here with other health conditions choose to try to manage their infections with conservative measures like twice daily airway clearance using saline in a nebulizer to break up mucus - some have even managed to clear the infection this way like @becleartoday

May I ask how your MAC was discovered in the first place? Have you also been diagnosed with Bronchiectasis or COPD? Do you already have a pulmonologist on your team who has talked to you about the other methods of caring for your lungs?

We're always here for you - and we know the path your are walking. Probably when you say MAC to most people, they don't even know what it is!

My lung disease was caught by accident during a visit to the ER, heart related, in Aug 2024 so it has been there and growing for quite some time which leads me to think I am at the danger point. They found nodules and GGOs on a routine chest xray and immediate CT a that time. Had a broncoscope on January 6 and it grew the MAC culture. I have not had Bronchiectasis or COPD. I cannot see a pulmonologist for three weeks.

Let me reassure you that waiting months to treat MAC is not always bad, and it is far better to start with a good plan than it is to start with the antibiotics and wreak havoc with your other conditions.

My MAC went untreated for many months after it was discovered because I had another infection to clear first. I also probably had it for at least 2-3 years before it was discovered, repeatedly being treated for asthma & bronchitis without improving. Yours is a typical story for many members of our group - "accidental" discovery while being treated for something else.

Nodules and ground glass opacities plus a positive specimen are not, by themselves, sufficient reason to begin treatment. Unless you are experiencing relatively severe symptoms like frequent coughing, bringing up a lot of mucus, and fever, you probably have a chronic infection, not an acute one.

There is a complex protocol that surrounds making this decision. You can read about it here:
https://www.ntminfo.org/wp-content/uploads/2019/09/Guide-for-Patients-with-NTM-Infections-2019-09.pdf
I would suggest paying close attention to pages 9 & 11 - making the decision whether to use antibiotics or "watchful waiting" We have members who have been doing exactly that for years.

Waiting 3 weeks to see the pulmonologist seems prudent to me. At the same time, maybe you can arrange consults with your other doctors to get their input.

Finally, did the ID doc give you any indication as to how many colonies of bacteria grew from the culture? This is another indicator that goes into the decision whether to treat.

(PS I know 2 people who have the same "accidental" diagnosis as you, are asymptomatic, and have other health issues. They will not start antibiotics until they are symptomatic or their CT scan shows the infection is progressing - which may be in years, or it may be never.)

No, I don't know how many colonies. I do have constant low grade fever and coughing up lots of mucus. Also have to breathe through my mouth because my sinus passages remain swollen shut with wheezing if I try to breath through them. I am being seen at Northwestern Memorial Hospital which is a horrible place. Top ranked but it is BAD. Interventional pulmonologist referred me to the /Pulmonary Clinic to start the treatment process. I called for 10 days in a row, two times a day and was always told someone would get back to me. After 10 days I had to call and ask for the presidents office. This was just to schedule an appointment. God forbid I have severe side effects. I will be left to die. This is adding to my anxiety. The hospital is 40 minutes away by expressway and I am too weak to drive there. They released me a day after my bronchoscope and I fell asleep three times driving home. I knew I was going out so I pulled off the shoulder the three times. Very dangerous situation on the expressway. I will have to find a transport to get me back there as I have no family or friends to help. It is hard facing this alone. I will read the article you advised. Thank you so very much for your support.

Maybe others from Chicago area will chime in about who they see for their NTM. Even though Northwestern Memorial Hospital is top raked does not mean they have a NTM specialist. Do you know if you're seeing a specialist in bronchiectasis and NTM?

A quick lookup on NTMinfo.org results in this doctor as an NTM specialist. There's also one in Maywood. Is that anywhere closer to you than Chicago?

PULMONARY & CRITICAL CARE
EDWARD T. NAURECKAS, MD
University of Chicago
5841 S. Maryland MC6076 DCAM 4C
Chicago
Illinois
IL 60637
United States
773-702-9660

@doberdoo please please just breathe!! I was in your shoes several years ago but without your other health issues. I actually had a panic attack about taking the meds. We read so much online that sometimes our brains convince us we will get all these side effects. I was petrified about going blind. Listen to what Sue told you! She has a wealth of extremely helpful info and expertise to share . And you are in good hands with Mayo connect. But please just breathe. My heart breaks for your stress level! irene5

5% of ethambutol patients will experience some degree of color blindness. Once stopped, over 90% of effected patients will have their vision restored. This why regular eye tests are required during treatment

The article you recommended has so much information. Thank you!

Sue,

This was very helpful to me. I have had mild bronchiectasis for a number of years. No exacerbations, treatments etc.

I had Covid last year and long COVID since.
Coincidental or not I have had a significant change. Lots of coughing, sputum production and significant drop in PFT. I get very short of breath. My pulmonologist here put me on levalbuterol and hypertonic. I do 3 times a day as well as a combo of vest and aerobika. This has helped with breathing.

I saw my pulmonologist the other day and now she wants me to try steroids, go into hospital for two weeks of random IV antibiotics, bronchoscopy. Also prescribed inhaler budesonide and formoterol.

This has me pretty freaked out.my sputum cultures have been rejected. I want to do another. I am uncomfortable with this plan without identifying a bacteria or lack thereof.
I have an appointment at NJH in mid March. What I see is that it is okay to wait a while without a lot of jeopardy in order to gather all the data to create an appropriate treatment plan.

I was panicking thinking maybe I should have the bronchoscopy here, but now it seems I can wait for my appointment there in March.

Am I accurate in this or do I need to do anything now.

I like a watch and wait scenario. I am very drug sensitive. Can not do albuterol or many antibiotics

Thanks

Pat

I can’t speak to the side effects as I have not started antibiotic treatment. My BE was also caught by accident at the ER in June 2024, sputum samples led to MAI diagnosis in September 2024. I have since had three CT’s (including the ER CT in June 2024), and my disease, though not insignificant, is stable (for now). I feel fine. I have not started treatment, not because I am watchful waiting per se, but because my stable CT’s have given me the confidence to take the time I need to do a full workup, educate myself on both the disease and treatment options and seek out a specialist in NTM for guidance. I am concerned about your comments re Northwestern Memorial. I had a family member treated there (cancer) and in my opinion her care was terrible. I won’t get into just how scary bad it was but given your comments that you don’t think you are getting good care there I would recommend immediately looking for another care center, specifically one with an NTM specialist. I see scoop found someone at University of Chicago, also a top hospital in Chicago, which seems like a good resource for you, if only for a second opinion.