New Diagnosis of MAC/MAI & I'm scared

Hi, I can’t use anything with bleach to clean! But I do use vinegar and that cleans anything that Bleach can also. I put in the dishwasher, with my laundry and all my counter tops. The smell is not high and I sometimes put some fresh lemon with it she thouse smells great. The last time I used bleach I coughed for two days and had problems breathing so I stopped all bleach from my house. Clean my shower heads all taps in my house with vinegar and I really love it. Hope it works out great for your scan and doctors appointment. Rita:)

Hey everyone. Been some time since I posted on here. Well it’s been over a year since I been on the triple 3 and I don’t think it’s working. I’m curious if anyone is having similar symptoms...my lungs feel like they are on fire. They are painful and some days are worst than others but always chronically pained. Last 2 days have been worse than normal and now I have a swollen lymph node on my right side of neck. Never had that before. Ever. Hopefully once the travel restrictions are lifted they will do another biopsy to confirm if the MAC infection is still active which I’m sure it is. I feel it anything it’s gotten worse not better. Curious if anyone else experienced the burning pain.
Thanks
Laura

@laura34 Yes I had the burning in my lung area, It was 5-6 years ago now, I havnt had the burning since my mac has gone, my dr diddnt seem interested in it which was awful. I think mine was at its worst if I went for a fast walk, but would come on any time. Are you on the big 3 daily or 3x a week, if mac isnt going your Dr may up it to daily meds(if not now) and ask if Amikacin inhaled may help you. I went 3 years, 3x week meds and no change, then on daily meds and Amikacin all my cavities disappeared and most the nodules, I feel much better. Take care Heather

@laura34, yes, Laura, I always have the burning but mine is relatively mild. I always feel it and have always thought that's just the chronic inflammation part of the chronic lung disease. I took the big also about two years and my MAC has come and gone. Not sure what it's doing right now as I will have a CT scan and sputum test in June. I mentioned it to my infectious disease doctor once and she said they have been using Azithromycin for the inflammation but I didn't ask if it was a maintenance dose or just for a few months. My other guess is steroids but maybe someone else knows on this site. Nan

I can only say my PCP doctor is adamant about not ever taking steroids of any sort. He said it would be like throwing gasoline on a fire ( regarding the MAC). I don't know if anyone else can shed some light on this topic. Toni

@toni1132 That is correct. I had to get permission from my doctor at Vanderbilt ( when we lived in Tennessee ) to have steroid shots in my back. I was cleared for that because it is not the same as “taking” a steroid like prednisone for inflammation. I’m guessing that with anything, benefits have to outweigh risks. irene5

Irene I'm glad you clarified. I'm hoping for an injection in my thumb while I wait for discretionary surgery to reopen.
Sue

@laura34. I was on the big 3 for 18 months ending in October. I have had slight burning sensation in different parts of my lungs off and on since then but have been healthy otherwise EXCEPT for a bad case of Inflenza A from March 1 to April 15....I tested positive for flu, not yet tested for Covid. This was the worse flu I have ever had. Has anyone on this forum had the flu this year? We simply shouldn’t get sick as it was really hard to get it out of my lungs.....and I was weakened beyond belief...muscularly and heavy coughing....bringing up tons of mucus.

@hydrang3a I am so sorry you had the flu. I am sure many of us live in daily fear of getting that and/or Covid19. Did you get the flu or pneumonia shot? irene5

Oh good Sue! Apparently, epidural steroid shots are ok to have when you have MAC. The thumb shot should help you for a bit. You just have to be careful of the frequency. I have needed a surgery where they take a tendon from your forearm and use that tendon in your thumb as a cushion. It is quite involved. My brother, who is a pianist, had it done in Boston on both thumbs. It was successful! Not having use of your hands due to the pain of arthritis is no fun. Irene