Garnet
@lampstone
@lampstone
Posts: 12
Joined: Sep 07, 2015
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!
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Jennifer
@megan123
@megan123
Posts: 194
Joined: Oct 05, 2016
Garnet
@lampstone
@lampstone
Posts: 12
Joined: Sep 07, 2015
@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.
I 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.🙏🏼
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judyhodgern
@judyhodgern
@judyhodgern
Posts: 103
Joined: May 21, 2019
@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.
For 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.
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Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4140
Joined: Nov 18, 2016
Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4140
Joined: Nov 18, 2016
@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?
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Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4140
Joined: Nov 18, 2016
@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.
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Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4140
Joined: Nov 18, 2016
@lampstone May I ask where you live live and what your occupation is/was? I am taking a poll. Thank you.
Jennifer
@megan123
@megan123
Posts: 194
Joined: Oct 05, 2016
@megan123 I feel like should be on an antibiotic in between months. Be sure to ask about it.
hi Terry…I think u r right…will ask about that July 11 when I see my Dr✌️✌️
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Garnet
@lampstone
@lampstone
Posts: 12
Joined: Sep 07, 2015
@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.
Yes. 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.
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Garnet
@lampstone
@lampstone
Posts: 12
Joined: Sep 07, 2015
hi 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
I have done Levoquin three times since April. Then the last time I took an antibiotic called cefpodoxime. But it’s back along with MAC. Ugh. Thanks for info.
Garnet
@lampstone
@lampstone
Posts: 12
Joined: Sep 07, 2015
For 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.
I had been using 7%, but when I began lung clearance three times a day, I was instructed to use albuterol morning and night, and then midday use 3% saline.🤷🏻♀️
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Garnet
@lampstone
@lampstone
Posts: 12
Joined: Sep 07, 2015
@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?
Yes. I continued the neb treatments. Coughing spells started increasing, night sweats returned, overall ill feeling. My PCP did sputum test. It was positive for pseudomonas. Then everything escalated. I had CT last week. “Critters” (plus a new friend) have all moved in and set up shop!
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Garnet
@lampstone
@lampstone
Posts: 12
Joined: Sep 07, 2015
@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.
Hmmm. Interesting.
Garnet
@lampstone
@lampstone
Posts: 12
Joined: Sep 07, 2015
@lampstone May I ask where you live live and what your occupation is/was? I am taking a poll. Thank you.
Iowa. Professional Fundraising and Nonprofit Management, retired.
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@sueinmn
@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.
Liked by Garnet