MAC/NTM is Different for Everyone, Treatment might be different too

Posted by Sue, Volunteer Mentor @sueinmn, Jul 31, 2023

What is the point of this discussion?
Let's stop scaring one another when we talk about treatment. Based on the severity of our infections, some people NEED antibiotic therapy to regain their health. Others of us are fortunate to be able to maintain with airway clearance, saline nebs, diet and exercise.

What do we have in common?
We have MAC or NTM, usually with Bronchictasis, COPD, or another chronic lung condition.
We have struggled to find a health care team that understands these rare conditions and how to treat them.
We came to Mayo Connect seeking answers and support.

How are we different?
Based on our own experiences, we each have a personal point of view on how MAC/NTM and Bronchiectasis "should" be treated.
Our conditions vary greatly in severity and symptoms.
We each bring our own "hotdish" of age, other conditions, drug tolerance or allergies, etc.
A treatment that works for me may be intolerable to you and vice versa.
Let's remember that Mayo Connect is here to provide evidence-based information, as well as to share personal journeys.

So what to say when talking about treatment?
It is perfectly okay for me to say "I had a bad reaction to Drug A" but not to say "Nobody should take Drug A!" if Drug A is the medically accepted protocol for treating a condition.
Likewise it is okay to say "There is a risk of X Side Effect" and even better to say "Y% of people experience this side effect." Or "Here is how to recognize this side effect..."

And it is wonderful to talk about all the additional ways we have found to stay healthy, as long as they are medically sound.

What have you personally found to be the most, or the least helpful in our support group?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

sue22 | @sue22 | Aug 6, 2023

In reply to @irenea8 "I do not see "< C & Bronchiectasis" anywhere to click on." + (show)

Hi
At the very top left of the top of this thread , You should see “MAC & Bronchiectasis “. Click on that. I think the “C “ was a typo….

liangni1 | @liangni1 | Aug 6, 2023

In reply to @irene5 "Who is the Orlando area pulmonologist who treats/has knowledge of MAC? Thank you. Irene5" + (show)

Shirish K. Kirtane, MD
210 N Westmonte Dr, Altamonte Springs, FL
9 8.6 mi
Shirish Kirtane is a Pulmonary Medicine doctor in Altamonte Springs, Florida. Dr. Kirtane has been practicing medicine for over 48 years and is highly rated in 12 conditions, according to our data. His top areas of expertise are Mycobacterium Avium Complex Infections, Asthma in Children, Asthma, and Lung Metastases. Dr. Kirtane is currently accepting new patients.
By the way,do you live near Orlando?

irene5 Irene Estes | @irene5 | Aug 6, 2023

In reply to @liangni1 "Shirish K. Kirtane, MD 210 N Westmonte Dr, Altamonte Springs, FL 9 8.6 mi Shirish Kirtane..." + (show)

Thank you so much. We are in the “process “ of purchasing a home in Ocala. I want to make sure my husband and I will have top notch lung people. Irene5

irene5 Irene Estes | @irene5 | Aug 6, 2023

In reply to @irene5 "Thank you so much. We are in the “process “ of purchasing a home in Ocala...." + (show)

@liangni1 I just checked and it is about one hour and thirty minutes from Ocala so that’s ok I think. Thank you again.

suzieh | @suzieh | Aug 6, 2023

I am 69 yo and have mac - PLUS copd - the infectious doctor ordered the 3 antibiotics and I feel worse than ever - no energy, fatigue PLUS insomia and some diarerra - VERY UPSET

liangni1 | @liangni1 | Aug 6, 2023

In reply to @irene5 "@liangni1 I just checked and it is about one hour and thirty minutes from Ocala so..." + (show)

so glad for you.my husband and I are planning moving to waterman village Mt Dora . This Doctor is about 41 minutes away from Mt Dora.

liangni1 | @liangni1 | Aug 6, 2023

In reply to @suzieh "I am 69 yo and have mac - PLUS copd - the infectious doctor ordered the..." + (show)

You may take some yogurt, or kefir for diarrhea. 3 antibiotics could kill the good bacteria,which may be the reason of diarrhea. Do you think your insomnia is caused by the anxiety?When we hear that we getMAC very often we worried,I was. I take a little bit anxiety medicine which doctor prescribed.fatigue maybe caused by MAC disease. I am still doing exercises but in shorter time and 2-3 times a day.try to take a short nap after lunch .These are my way to deal with my Mac lung disease problem. Give me. Yogurt or for diarrhea right as you’re a girl that’s very good send it

liangni1 | @liangni1 | Aug 6, 2023

In reply to @liangni1 "You may take some yogurt, or kefir for diarrhea. 3 antibiotics could kill the good bacteria,which..." + (show)

Forget the last sentence which was other people talking but recorded in my text.Sorry!

Sue, Volunteer Mentor | @sueinmn | Aug 6, 2023

In reply to @suzieh "I am 69 yo and have mac - PLUS copd - the infectious doctor ordered the..." + (show)

Welcome to Mayo Connect - you have found a great support community for your journey with MAC. I think we are all very upset when we learn we have this - especially when we find out we are facing long term medication.
MAC is a rare infection, happening mostly in people with COPD, Bronchiectasis or Cystic Fibrosis. It is slow growing, so likely it was busy growing in your lungs for a long time before it was diagnosed. This also means it is slow to be cured, and you will be one the antibiotics for quite a while.
Here is a link to a discussion of taking the 3 drugs - others will have good tips to help you cope. https://connect.mayoclinic.org/discussion/drug-therapy/
You need to figure out what part of your feeling bad is the infection - which you just need to endure as you heal.
Fatigue and lack of energy are very common symptoms of infection, and your body is telling you to slow down - but not too much. But it is also a side effect of the drugs, so taking them at bedtime can help you to feel better during the day.
Diarrhea, and some nausea, are generally from the medication. You will need to do some experimenting to see what dosing order - time of day, etc help you. As @liangni1 mentioned, probiotics, yogurt or kefir can help. If it is really bad, talk to the doc about using antidiarrheal medication. Also, sometimes taking the drugs with a little food can help minimize the effect.

As for the insomnia, others here have mentioned it, but it is not a side effect of any of the antibiotics. However just your illness can cause stress and anxiety and the drugs can make it worse. That can lead to insomnia. This is a topic to discuss with your primary doc - maybe a temporary antianxiety med may help.

All that said, I need to ask a few questions so we can understand your situation - is your COPD stable, and do you have any other lung issues? How was the infection diagnosed?
Are you taking the meds daily or 3 times a week?
When you started your antibiotics, did the pulmonologist advise you to get your hearing and vision checked regularly? These meds can sometimes affect both, so it pays to be alert for changes and report them right away.

Please take a deep breath and get ready for this marathon - there are lots of us to help along the way.
Sue