Connect
What now? What else can be done?
2014-2018, I have had Bronchiectasis, MAC = 4 years on three antibiotics daily; 2018, 1 year drug holiday. Recent positive myco cultures + 5th bout with pseudomonas in 7 months treated with 3 Rx of Levoquin, 1 Rx of cefpodoxime proxetile. Now it’s back again. I have consultation with my Mayo physician next week to find out what’s next. Currently 2 albuterol nebulizer daily and 1 saline nebulizer daily. Using ventolin inhaler before each nebulizer treatment. And acappella after each. Anyone who has this condition knows how I feel...so I will spare you the symptomatic details.
Does anyone know what effect Bronchiectasis, MAC, and additional bacterial lung infections have on life expectancy? I was diagnosed at 66, now 71. And are there natural remedies that might help manage this and have a better quality of life with this disease? I know walking, exercise, healthy diet, adequate hydration, hot ginger tea...etc. But I am also fructose and lactose intolerant. Ugh!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@lampstone Pam, when I had pseudomonas that didn't residence to levaquin and doxy, my pulmonologist finally prescribed a month of nebulized Tobramycin, that finally kicked it. As for the failure of the antibiotics, did they do sensitivity testing on the specimens? Your appointment with Mayo is a great next step. Good luck.
-
Like -
Helpful -
Hug
1 Reactionhi Pam...I too have psedomonas, MAC, MAI.. my dr uses Colistin every other month at 150 ml..going to try 300ml to see if it kicks it back longer...probably do Cipro or Levaquin in between
-
Like -
Helpful -
Hug
1 ReactionI have been seeing Mayo pulmonologist for about 5 years. She gave me the 1-year holiday off meds since I was down to one colony. Now that everything is back plus the continuous pseudomonas I am looking forward to seeing her again. I trust her. The sensitivities were done in mid May. So guess I will know soon.🙏🏼
-
Like -
Helpful -
Hug
1 ReactionFor increased airway clearance you may check with your Dr about increasing to 7% saline “2“x/d—from only 1 time —it really helps me with less infections.
-
Like -
Helpful -
Hug
1 Reaction@megan123 I feel like should be on an antibiotic in between months. Be sure to ask about it.
-
Like -
Helpful -
Hug
1 Reaction@lampstone Hi Pam. So, the ugly symptoms are back again? I am so sorry. I know it sucks. Are you back to coughing a lot? Had you been doing the albuterol and nebulized saline during that year off year from the meds?
-
Like -
Helpful -
Hug
1 Reaction@lampstone Pam, my Mayo dr said I would be on antibiotics for the rest of my life most likely. I have tested negative for mac since 2014; but caught pseudo in 2016 and went neg for that after 30 day treatment on tobramycin. My dr said that although I am negative for organisms, he is now treating the bronchiectasis, the condition that allows mac and pseudo to attack us. So, my meds now are taken for preventative measures. I also relocated geographically in 2012. I believe the exposure to mac is minimal where I live now. I know that the state of Va is not healthy for me. There is lots of dampness and rotting leaves there. That state and Arizona kept me ill; in coastal South Carolina, I have been mostly healthy and happy. Hope this helps.
-
Like -
Helpful -
Hug
1 Reaction@lampstone May I ask where you live live and what your occupation is/was? I am taking a poll. Thank you.
hi Terry...I think u r right...will ask about that July 11 when I see my Dr✌️✌️
-
Like -
Helpful -
Hug
1 ReactionYes. They have done the sensitivity testing over the last couple months from my appointment in May. I will find out the treatment plan tomorrow. Thanks.
-
Like -
Helpful -
Hug
1 Reaction