Newly diagnosed and scared

My husband tried all three of them. He tried three different times. He was so sick. We found out he had mac 7 year's ago. He passed away last February he fought so hard for 7 year's. Please be careful my prayers are with you.

Like you, I was more concerned about the antibiotics than the infection itself. After first reacting with flu-like symptoms, I seem to have adapted ... except for the build-up of fatigue on Thursdays and Saturdays as I add the Wed and Fri doses each week. I've had some loss of appetite. My teeth haven't turned orange like I thought they would, but maybe the extra-whitening toothpaste and mouthwash have helped. I will, however, ask the pulmonologist next week about setting up an eye exam, since my eyes seem to be more tired, sensitive to glare, and difficult to focus on small print. All that could just be age, but ...

Yes things do change with age...but I'm not a fan of doctors attributing changes to age. I am 82 and my worse problem is the BE with constant mucus clearing and a low count of MAI.
Did you and did your pulmonologist suggest that you have a baseline eye and hearing test before going on the antibiotics? If so, that will possibly give you good information with the eye exam you are thinking of having. Are you on Medicare? With my being on Medicare I have been able to make my appointments without going through my PCP or Pulmonologist. I make the appointments directly.
Barbara

I don't know what BE and MAI stand for.

No, no suggestion of a baseline eye and hearing test, although they would have made sense. My pulmonologist did give me a heads-up, though, about needing both to monitor the meds.

I am on Medicare, so I appreciate that information about making appointments directly. Thank you.

I was like you and to some degree still am more concerned about the medications than the disease. I was on all three. I also had flu like symptoms, fatigue, hot flashes and chills on and off all day, and worsened depression and anxiety. I feel like the hot flashes were from the medication interfering with my hormone replacement. I finally went off of them for several weeks but started going to the clinic at UAB and am now on two. I was taken off Rifampin.
This time I’m not having flu symptoms, hot flashes or chills. The depression, anxiety, and fatigue are still pretty bad. When I saw my dental hygienist a few weeks ago she said there was a stain on my teeth but she was able to get it off.
The first ID Dr. told me to have my eyes checked monthly but did’t feel it was necessary to have my hearing checked. I was having ear problems not that long ago and finally went to my CRNP. I told her about the hearing test and she said she wanted one done so I’m set up with my ENT to have one in a few weeks.
This whole thing is difficult.

Sorry I should have again spelled it out. BE is Bronchiectasis. MAI is Mycobacterium avium intracellulare, the type of bacteria.
Yes, many of my appointments I made directly. Some of those I did call did say I needed to be referred but that was just a couple of offices. I then notified my PCP Primary Care Physician I needed a referral to the specific doctor.
Barbara

I was diagnosed with bronchiectasis with a pesudomonas infection in 2011. My doctors did not want to treat the infection— they just wanted to build up my immunity. Six months of that and I got worse so I switched to a practice that put me on antibiotics— inhaled tobramycin, along with a nebulation regime. Is was that or forget about having a purposeful life carrying around an oxygen bottle.It worked for 12 years, when I developed an infection that was resistant to the tobrymycin. After a hospitalization to calm down the infection they tried a few different ones and I am on azithromycin now. I have exacerbations but I can still stay active at the age of 70.

This disease is a big nuisance and a huge time suck. Any therapy, or choice not to have therapy, comes with downsides. You pick the downsides you can live with. The nebulizing and the occasional exacerbations, the loss of sleep due to wheezing, the inability to take my mind off my breathing when it acts up, are all unpleasant, but like anything else, you pays your money and take your chances. You also have to take responsibility for your health— exercise and keep your weight down. For all the nuisance, I average a pulse ox of 97%, bicycle 3000 miles/year, and ski. Given the hand I was dealt. I am glad I chose the antibiotics. There are no miracle cures cures for this thing.

Yes, the whole thing is difficult. More difficult than my pulmonologist has led me to believe, anyway. I had trouble with Rifampin early on. Chills and tremors. Doctor stopped it for two weeks and then reintroduced it slowly. I'm better except for the coughing (especially after I get out of bed) and the fatigue. That said, I've been feeling a little off lately. Never thought that it might be anxiety owing to the meds. I'll have to be more aware.

Thank you. I'm still learning how to say bronchiecstasis. 😀
Is there a difference between MAC and MAI?

I’m sorry you are struggling. All I can say to the anxiety is that I feel things are worse and my husband has noticed a difference. I wish you and everyone here the best.