Did your MAC symptoms improve once you started Big3?

Does the fatigue get better? I’ve been on the antibiotics for two weeks now and I am so tired. Low energy and and wanting to sleep often. The dry mouth is contributing to my feeling of nausea and little appetite. Wondering when I might start feeling better?

Has anyone had any skin irritation. My skin almost hurts to touch. But no rash at all.

SP,
Glad you're stable on your present regime. Can you share how you access the lectures by pulmonary specialists?
Jean L

I'm glad you feel better! Can you describe what made your team insufficient the first 8 months? What made your subsequent doctor better? I ask because I'm considering going on the meds. I like my pulmonologist but don't know if he's the best. He does treat patients with MAC an bronchiectasis.

Winema, If you go on meds get baseline hearing and eye exams. My pcp sent me to a local pulmonologist. This pulmonologist said she treats hundreds of people with bronchiectasis (red flag, I live in a small NE town) She gave me an acapella, inhaled steroid and a sputum cup and sent me on my way. My appointments were cancelled several times, they lost blood work done there and no one showed me how to use other airway clearance. She also told me I am going to get way worse and this would never go away. Sent me to infectious disease dr. who claimed he treats many MAC patients. He ordered sputum induction at the hospital and I was Pos. for MAC. He told me treatment is far worse than disease but I have to do the meds. Asap. or the MAC would eat my lungs. He never had me do a baseline hearing exam or eye exam. I asked him to do sputum culture 8 months into treatment …. Only because I finally found this site and was getting educated. I got super sick on a couple meds. and he wasn’t patient and threatened to do iv infusions in the office if I couldn’t handle what I was taking.
After I found this support group I asked about doctors that treat this in my area and was given a name of a doctor that specializes in Bronchiectasis. (Thankful to Linda E) What a huge difference and wish I found him and this support group in the beginning. I don’t have ID doc, just pulmonologist. He is kind, thorough, patient, I feel listened to and he knows his stuff. I now nebulize 2xday and feel like I am supported. Lots of great advice and support here. Rosemary

My original pulmonologist told me "MAC is slow... to grow and slow... to go." Not what we want to hear, but I bet I had it for 3 years before diagnosis. After four months on antibiotics I started to adjust to the meds and feel a little better.
Unfortunately, I did not convert to a negative sputum culture, so after a year I was prescribed the Big 3 DAILY and felt worse. Now, 6 years later, they would be talking about Arikayce - I think people now have a lot better chance of clearing.
Are you also doing daily airway clearance? Are you using 7% saline?

How long have you been taking the meds? This sounds like a potentially serious reaction. Have you told your doc(s) ?

Just two days. Stopped my meds. Will talk to doc on Monday.
Seems a bit better today since I stopped meds. No rash at all but feels like I should have a rash.
Will post Monday what happens.

Hi Jean
There is a lot of info on NTM on you tube, NTM ir, (USA) and the European Lung Foundation etc.
I’m just hoping daily Airway Clearance, nebuliser with saline, exercise and a good diet will help control the NTM for now but who knows as I wait and watch …

Yes, I am doing daily airway clearance with 7% saline. What is Arikayce? I’m really struggling with anxiety and feeling depressed with this condition and treatment. Trying to exercise and keep my mind from dwelling on everything, but it’s been difficult. Any advice how to overcome the anxiety? Lots of prayers needed