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Does anyone here have Mycobacteria Abscessus (MABC)?
MAC & Bronchiectasis | Last Active: Jul 22 10:30pm | Replies (15)Comment receiving replies
You're welcome.
Actually, it's been longer than 9 months. My first CT scan was in March 2024, which showed nodules. I figured they were residual nodules from an atypical form of pneumonia that I had quite a few years prior, so I wasn't concerned. My doctor wanted the CT repeated in 3-6 months and then we did the 2nd test after the first one, hence the diagnosis. So, no change for 1.25 years. I was seeing a local ID doctor who wanted to hold off treatment. I'm thinking M.Abscessus takes 3-4 weeks to grow and MAC is 6-8 weeks. Don't quote me on that, I really don't know the lab specifics.
Did Azithromycin or Clarithromycin show susceptible? If so, that's good news. mine is resistant.
I think a MAC specialist at a University hopsital would be good, but if your MAB is macrolide resistant, I would make sure that doctor is up to speed on MAB and the antibiotics used to treat. There is no standard treatment for MABs.
Just a tip. many people catch MAC and MABs from their home environment. So they can be "cured" and then relapse due to their home environment. I have taken steps to help minimize this from happening again. I replaced my shower head, I don't take hot steamy showers, I installed an ultrafiltration filter at my sink, I sterilize my aeobika by boiling in distilled water for 5 minutes every other day. I also change out teh OMBRA tubing 1/month. I may switch to the baby bottle microwaveable bags.
Good luck!
Kathy
Replies to "You're welcome. Actually, it's been longer than 9 months. My first CT scan was in March..."
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Kathy, thank you again, and I must apologize once again for my delayed response. At times I think I’m in denial, and the fatigue is so bad at times I just can’t concentrate to send a message. You bring up so many good things. After waiting so long, I was not happy with my appointment this week with the new ID doctor, as they switched the doctor on me at the last minute. I think this one is used to working with children with cystic fibrosis. Plus, they still have not connected me with a pulmonologist who specializes in bronchiectasis. I had a flare this past week that was truly scary as I couldn’t breathe in or out three different times, and thought I might need to go to the hospital. I didn’t know who to call. I’ve gotten serious about doing airway clearance three times a day now. (thank you for your tips) My husband and I are seriously considering going to NJH. Looks like I need to send a request in for a consultation first… unless my doctor can write a referral like yours did. Someone mentioned in another thread that Cleveland Clinic has a bronchiectasis department. I’m looking into that also since I could drive. I’m sure like you, I just want doctors who have a lot of experience with bronchiectasis and MAB. Also on top of the new drugs that are coming out for it.
I’m susceptible to Amikacin, Clarithromycin…. Gosh, and it looks like that’s it.
Thank you for all the info about sterilization, replacing the showerhead, and I’m thankful we already have an under the sink water filtration system. Interestingly, when we brought up the one last plant we have in the house and our plans to get rid of it, the ID Dr said that there isn’t anything that could be inside of a house that you wouldn’t be exposed to outside of the house, and that he wouldn’t worry about it. Opposite of what I thought I heard elsewhere.
I need to check out the OMBRA and see how it differs from the nebulizer I have.