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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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I was treated for Aspergillus for 3 months in fall 2022. I found the first month of treatment harsh, but the last 2 were super easy. It made a HUGE improvement in my health and in my SpO2. At my last bronchoscopy in dec 2023, there was NO fungi of any sort. I think the antifungal they gave me was Clotrimazole, but I am not 100% sure, The reason the first month was so harsh for me is, I think, partly because the doc said I was not asthmatic and did not need my Advair. My body did not agree at all. After 1 month of misery, I asked for the return of Advair, they gave it back to me and told me to nebulize Budesonide to help me further. Both helped tremendously. Good luck with your fight! Best wishes.
After Mac for years. I also developed aspergillus. I've been on voriconazole for 18 months
Thank you for your detailed information, especially the use of advair for reducing the side effects.Your experience has helped me a lot.
Thanks for your caring warm thoughts and wish you keep good health !
I know you had fight with Mac and aspergilus for a long time. You are the fighter and I am wishing you received to the health soon. Thanks for your support.
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1 ReactionHow did they diagnose aspergillus? Was a bronchoscopy required or just a sputum sample.
Thanks
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1 ReactionAfter symptoms reappeared, multiple tests for Mac and C were negative then an oral sputum RESPIRATORY CULTURE indicated aspergillus growth. Then a super dimension bronchoscopy sample with this test confirmed it All this over an 8 month period
Rick
Thanks Rick. Appreciate the info.
Frank
I am new to the group but find it very helpful and comforting that others are experiencing same symptoms and discuss treatment options.
I have been an RN for over 50 years and like and trust my pulmonologist. Many times she has left it up to me i.e. if I need a CXR etc. She has been very conservative because I was stable.
I was dx with bronchiectasis by a radiologist and quickly referred to pulmonologist by our PCP 5 years ago.
Thank you and good luck to all!
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1 ReactionSue,
I find you always have valuable, well thought out input. I have just been diagnosed with Mac and will be seeing an infectious disease specialist soon.
Thank you for sharing your knowledge.
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2 ReactionsI have really enjoyed hearing different experiences, no matter whether they've been good or bad and no matter what it's regarding about Mac lung disease. I for one don't take anything another person says as my gospel. But I love reading all the different experiences whether it's treatment or no treatment. It's all very interesting and I can synthesize and personalize them in such a way that's helpful. I think we all recognize that these are personal experiences and no one is saying or directing like a doctor. No one really knows everything about this disease. It's a very strange one and hard to treat. I don't think anyone smart enough to get on this site would think like that.