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MAC/NTM is Different for Everyone, Treatment might be different too
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?
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Does anyone see diary products exacerbate lung issues for you? I feel fortunate to have found this site. Your information is appreciated 🙂
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1 ReactionI stopped all dairy for 3 weeks per dr.s advice to see if it made a difference for me - result: it made zero difference.
You are the most helpful!
More helpful would be success stories with antibiotics
I haven’t read many success stories, that is not to say there haven’t been. It seems that a lot of people trudge through very difficult side effects, clear, then it comes back. I’m sure there are many different scenarios to this topic.
I think it comes down to an individual decision, how disruptive the side effects are, the age and physical condition of the individual, and where they are at in their diagnosis etc.
If a person is riddled with untenable side effects on a daily basis that exclude them from quality of life and enjoying their day, then there is something to think about..for me that is. Another factor is other or existing conditions too that play in the ability to tolerate the side effects. I wake up in excruciating body pain every single day from fibromyalgia….that alone is hard to handle….throw meds into the mix and it’s like torture to me. God bless those who can handle the antibiotics…….
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2 Reactionsyes understand - since I've been taking the antibiotics my RA pain is 100% worse - can't sleep thru the pain after 4 hours have to get up - I believe quality is best - I may stop them and go back to my stronger medication for RA. I cannot live like this.
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2 Reactionssuzieh
I hear you.....suffering every day from medicine that is supposed to stop suffering, and exacerbates the ailments you already have, and having to take it for such a very long time for a possible good result, doesn't motivate me too much. I wish they would come up with another fix for MAC.
I see no difference in mucus production when having dairy. I guess, as with everything else, moderation is the key.
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1 ReactionHi, I'm waiting on the results of my Bronchoscopy . Dr. suspects MAC. I had TB as a kid but was told I was strong enough to fight it off but it left a scar on my lung and left me apparently susceptible to getting MAC. I will be 75 in October and am otherwise very healthy. I have pretty much decided that I will not take the meds if I have MAC. My Dr. told me that the side effects are worse than the levothyroxine I was on for a week recently . I have read that once diagnosed with MAC you have 1 to 5 years to live, so I would prefer to live out those years with no adverse side effects and accept whatever comes my way.
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1 ReactionPlease do not make any decisions until you have all the information you need
Many people tolerate treatment quite well and l personally have lived with MAC at least 8 years and am doing fine after successful. ( at least for now) treatment.
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3 ReactionsI've had this condition for over 5 years and am still going strong. I try to exercise daily and cut out inflammatory foods like gluten and sugar but feel I need to add back in some dairy to protect my bones. I'm close to 70 years old.
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