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DiscussionRecently diagnosed with MAC and nervous about meds
MAC & Bronchiectasis | Last Active: Mar 18 9:27am | Replies (23)Comment receiving replies
Replies to "Hi. I'm 75 and was recently diagnosed with Mycobacterium Avium Complex. (That's on top of my..."
Welcome to Mayo Connect. If you take a look around our support group, you will find a WIDE range of opinions about taking antibiotics to treat MAC.
In reality, there is sometimes an option for choices, but there is a definite protocol for when to move from the conservative measures - daily airway clearance, 7% saline nebs, and possibly herbal remedies - to the "Big 3" antibiotics.
You can find very clear guidance in this document:
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf
Conservative measures can work, and there is often an option to "watch and wait" but at a certain point in the infection, the risk of not using antibiotics outweighs the side effects of the medication.
Have you been using airway clearance?
Sue
Hi I am 77 yrs old and been on the big 3 for 1 1/2 yrs although last April I was taken off ethambutol for eye problems. I was very reluctant to go on the meds because of all the side effects and being older but I feel very fortunate that my side effects have been minor compared to others. I did have nausea and diarrea but for the most part tollerable. I am now on Arikayce to replace the ethambutol and have had the most side effects with it but hope to get off soon. Everyone is different good luck.
If there were any success stories about Mullein Weed we’d all be taking it and this forum wouldn’t exist. The second opinion from a pulmonologist or infectious disease doctor would be very helpful to you. If you read thru these posts you’ll see that many of us have bronchiectasis and MAC infections. I’ve had both for about 7 or 8 years. I’ve had all the drug cocktails, and I can say they’re not great, but tolerable. I’m of the type that just can’t completely rid myself of the infection as it’s now colonized in my lungs. But keep reading about others treatment regimens for more experiences.
My motto is "always take the doctors advice, if you don't like his advice then get a second opinion". Our conditions can require a team.