1. < MAC & Bronchiectasis

What now? What else can be done?

Posted by Garnet @lampstone, Jun 13, 2019

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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Garnet | @lampstone | Jun 17, 2019
In reply to @megan123 "hi Pam...I too have psedomonas, MAC, MAI.. my dr uses Colistin every other month at 150..." + (show)
@megan123

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

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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.

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Garnet | @lampstone | Jun 17, 2019
In reply to @judyhodgern "For increased airway clearance you may check with your Dr about increasing to 7% saline “2“x/d—from..." + (show)
@judyhodgern

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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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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2 replies
Garnet | @lampstone | Jun 17, 2019
In reply to @windwalker "@lampstone Hi Pam. So, the ugly symptoms are back again? I am so sorry. I know..." + (show)
@windwalker

@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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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 | Jun 17, 2019
In reply to @windwalker "@lampstone Pam, my Mayo dr said I would be on antibiotics for the rest of my..." + (show)
@windwalker

@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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Hmmm. Interesting.

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Garnet | @lampstone | Jun 17, 2019
In reply to @windwalker "@lampstone May I ask where you live live and what your occupation is/was? I am taking..." + (show)
@windwalker

@lampstone May I ask where you live live and what your occupation is/was? I am taking a poll. Thank you.

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Iowa. Professional Fundraising and Nonprofit Management, retired.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 18, 2019
In reply to @lampstone "I had been using 7%, but when I began lung clearance three times a day, I..." + (show)
@lampstone

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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@lampstone Why such a low dose and only once a day?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 18, 2019
In reply to @lampstone "I had been using 7%, but when I began lung clearance three times a day, I..." + (show)
@lampstone

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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@lampstone My dr has me do albuterol 2x day then followed by 7% saline 2x day. There is scientific proof that 7% saline kills mac. 3% not strong enough. If you think about it, we were all raised to gargle with warm salt water when we had a sore throat. Remember? That is because the salt kills back the bacteria. First of all, the saline treatments clean out your lungs and can cause a productive cough to clear the mucous out. Second way it works id that it creates a salty environment that discourages bacterial growth. May want to revisit that dose with your dr. There is a saline chart posted on the Discussion Board on the main group page that shows what percentage of saline will kill certain bacterias. The only time drs do not like to use 7% saline is if your lungs are in very fragile shape.

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2 replies
Garnet | @lampstone | Jun 18, 2019
In reply to @windwalker "@lampstone My dr has me do albuterol 2x day then followed by 7% saline 2x day...." + (show)
@windwalker

@lampstone My dr has me do albuterol 2x day then followed by 7% saline 2x day. There is scientific proof that 7% saline kills mac. 3% not strong enough. If you think about it, we were all raised to gargle with warm salt water when we had a sore throat. Remember? That is because the salt kills back the bacteria. First of all, the saline treatments clean out your lungs and can cause a productive cough to clear the mucous out. Second way it works id that it creates a salty environment that discourages bacterial growth. May want to revisit that dose with your dr. There is a saline chart posted on the Discussion Board on the main group page that shows what percentage of saline will kill certain bacterias. The only time drs do not like to use 7% saline is if your lungs are in very fragile shape.

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I was having burning in my lungs. So maybe that’s why the change. My current x-ray shows a lot of inflammation.🤷🏻‍♀️

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shooei | @shooei | Jun 18, 2019
In reply to @windwalker "@lampstone My dr has me do albuterol 2x day then followed by 7% saline 2x day...." + (show)
@windwalker

@lampstone My dr has me do albuterol 2x day then followed by 7% saline 2x day. There is scientific proof that 7% saline kills mac. 3% not strong enough. If you think about it, we were all raised to gargle with warm salt water when we had a sore throat. Remember? That is because the salt kills back the bacteria. First of all, the saline treatments clean out your lungs and can cause a productive cough to clear the mucous out. Second way it works id that it creates a salty environment that discourages bacterial growth. May want to revisit that dose with your dr. There is a saline chart posted on the Discussion Board on the main group page that shows what percentage of saline will kill certain bacterias. The only time drs do not like to use 7% saline is if your lungs are in very fragile shape.

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Or no 7% if you are a "bleeder". I don't think my lungs would be considered necessarily fragile shape (no cavities, not bad damage, good FEV1, never had other infections other than the active MAC, and some nodules), but I tend to have bleeding episodes so they won't let me do 7%. Discouraging, but I guess better than maybe causing more bleeding.

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1 reply
sounder27 | @sounder27 | Jun 18, 2019
In reply to @shooei "Or no 7% if you are a "bleeder". I don't think my lungs would be considered..." + (show)
@shooei

Or no 7% if you are a "bleeder". I don't think my lungs would be considered necessarily fragile shape (no cavities, not bad damage, good FEV1, never had other infections other than the active MAC, and some nodules), but I tend to have bleeding episodes so they won't let me do 7%. Discouraging, but I guess better than maybe causing more bleeding.

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Shooei. I wonder if taking xarelto for heart would be worrisome with the 7%? I have also had episodes of haemoptasis. My doc is starting me with a saline nebulizer and I am picking it up tomorrow. I do not know what he has prescribed for concentration.

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