Recently diagnosed

Heather,
Your situation sounds very similar to mine. I waited years to treat MAC because my doctor thought the treatment of the disease was so terrible that I should put it off as long as possible. For me, the terrible fatigue and malaise of the disease was way worse than the Big 3. It took me a year on the antibiotics to start feeling better because I had waited so long to treat. At your young age you need to treat this disease before the damage to your lungs gets worse. The antibiotics are not easy and for some are intolerable but in my case the disease was killing me and the antibiotics saved me.

Thank you for advice , I live in a small town and don’t have a lot of options for ID or someone experienced in this diagnosis. the ID that I saw a month ago told me “ I didn’t look sick enough for treatment “ but be also didn’t have all my cultures back , which he assured me would come back normal. He also thought my symptoms were strictly related to other issues so it’s good to hear someone suggest treatment / antibiotics. I made alot of excuses for my progressing symptoms either to stress or not exercising , so some of it is also my fault.

Hi Heather. I’m so glad you found this group. Don’t ever blame yourself. Stuff happens!! I’m surprised you weren’t treated for the aspergillosis when you were diagnosed with that. My old lady advice to you is to do the treatment. If the Big 3 become an issue there is an inhaled med called Arikayce available as well. It just requires a bit of daily dedication because you have to sterilize things. I would not wait as it seems your lungs aren’t happy. Funny thing is when you don’t look sick doctors don’t always think you need treatment. I’m great from the neck up as my hair is always perfect and I wear Mary Kay so I rarely look sick. It would be better sometimes if I looked like I died somewhere because when doctors look at my scans they always say something else!! Make sure you have a good working relationship with both a pulmonologist and an ID doctor. Wishing you well. Irene5

@irenea8 and @maryjanechilds have offered you great advice about getting treated sooner rather than later - having 3 different infections identified in four years mean your body is in a constant fight.

Two of your infections are fungal, and one is bacterial - the treatments are completely different. So, you may very well need to seek out both a pulmonologist well-versed in treating bronchiectasis and an ID doc familiar with MAC & fungal infections in lungs. Here is a lsit of centers of excellence for treating our conditions:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
Are any of these accessible to you?

Thank you , I sound like you , my mom raised me to have my hair and makeup done at all times 😊 even in sickness .

It looks like U of M is the closet for me , thank you for the list , I was uncertain on where to look / go for more experienced in treatment .

Yep that’s me!! Like dress for an exam at school - you’ll do better!! I do believe if you look good you’ll feel better - not great maybe but better:). Irene5

I think it was Irene5. Not Irenea8.

Hello! Have had symptoms of MAC for a few years and when diagnosed was prescribed the Big 3.
I have been on the Big 3 antibiotics for 15 months but after 6 months had to give up Rifampin, continuing on Two. Sputum results are still abnormal and cough still present. Has anybody been on Arikayce with success? This germ is difficult to kill and effects are life changing. Thanks for your reply. Nessa

@barbrich - Hello, I see you are new to Mayo Connect - can you tell us a little more about your diagnosis, how it came about, and if you have already started taking the medications.