Looking for info and treatment for Mycobacterium abscessus

Thanks Dee! I really appreciate your input. It's all very confusing. I'm learning new things about this Mac all the time, and even though mine has completely resolved now in just months, he's going to keep me on the antibiotics and the nebulizing until it's been a year and make sure nothing's coming back. Coming back. The cavity closed up although I have scar tissue there. Crazy because at cavity was big! Anyway, I really appreciate you answering me. Hope everything's going good with you!!!

Hi Dee
I’m doing ok thanks. I’ve been lucky with the big 3 and have very few side effects. Like you my main problem is anxiety! I try to block it all out as best I can and not research the condition too much! Too much knowledge is a dangerous thing.
I’ve a very good consultant who I trust.
Hope you’re feeling better.

Hi!
I am looking for experience from anyone that is dealing with specific form of NTM disease called Mycobacterium Abscessus. I have Bronchiectasis which was diagnosed in 2018 and mycobacterium avium complex (MAC) diagnosed in 2022. I have been on the Big 3 for 16 months and show culture conversion, and slated to come off meds at year end. However, recent sputum sample now shows mycobacterium Abscessus. Now waiting for additional test results to confirm. The first test was in August and I was feeling fine( luckily the big 3 hasn’t produced any side effects that are not tolerable). But in the last month I have been feeling really unwell and daily temperatures have returned making feel worse than when I was originally diagnosed with MAC. I also seem to have lost my appetite, losing weight, and having diarrhea and nausea a couple times a week. Any info would be greatly appreciated!
Thanks!
Dee

I am surprised you developed a secondary infection in month 16. I was on the big 3 for 28 months, then off for 6 months, then developed a secondary infection and started the big 3 for 12 months which turned out to be a fungal infection that I am treated for now. Reoccurring MAC is fairly common, usually well after the initial treatment. No much advise here, but you aren't alone.

If you do a search on YouTube NJH has some videos.

I am curious to know how your body reacted to taking the antibiotics for such a long time. I’ve been diagnosed with MAC and we are waiting for last part of sputum results before I go on the protocol. I usually do not do
well with meds so I am nervous as to how I will do with the antibiotics.

The first 28 months were hard on the GI, I took daily AZ in the morning. The second 12 months was MWF of AZ I took with a big dinner and I had no issues. I had no issues with ethambutol or rifampin either time. Have you been prescribed 3x or 7x per week?

I take every Monday, Wed, Fri. I take All at night at least 2hours after eating and near bed time. I take probiotics every morning.
As I mentioned, had some Gastro issues but I had that prior to MAC, so side effects were not that bad for me.
I will say the decision to go on meds should be thoughtful. If you aren’t symptomatic, and CT isn’t terrible- you may want to do some “watchful waiting”. It is my understanding that the first time you go on the big three is the best chance of success and you don’t want to stop if side effects are unpleasant. Since this a life changing illness you may not want to jump on treatment if your current quality of life is good and you feel fine.
Hope this helps!
Dee

Was diagnosed with MAC Abcessus in January after coughing for over a year. Cavities in upper lobe. Lung collapsed during biopsy in bronchoscopy. I was terrified of the treatment so waiting until coughed up blood in April to start treatment. PICC line , IV antibiotics imipenem Amikacin and oral Linezolid. Couldn’t take the Linezolid, messed with my liver and platelets. In June started Azithromycin and Omadacycline. I will take these until at least June

I haven’t started treatment yet; but the doctor prescribed the meds for 3x week.