Bronchiectasis and MAC

Posted by s32 @s32, Jun 26 11:35am

I have been following this group for a while now and have found it to be so helpful and informative. I was diagnosed with bronchiectasis a little over a year ago and MAC followed by pseudomonas. I was treated for the pseudomonas over winter and my recent CT scan was much improved. I am a big coffee lover and was told by another website not to use a Keurig coffeemaker and was wondering what kind of coffee maker other people use.

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sweethighland | @sweethighland | Jun 26 3:35pm

How was pseudomonas treated? IV antibiotic or oral may I know?

scoop | @scoop | Jun 26 5:21pm

Others will need to respond regarding MAC/pseudomonas and coffee habits. As for me, I have had bronchiectasis for some time. No MAC/pseudomonas so far and trying to keep it that way. For coffee I use Nespresso but would not hesitate drinking coffee from Keurig. In both cases I use cold tap water. My feeling is as long I do not recline after drinking my once a day cup of java there is no harm no foul. Of course, regularly descale the coffee maker according to manufacturer instructions. Ultimately, you need to decide for yourself after gathering information. It's really tough when one place adamantly declares a certain stance. It can read like fear mongering rather than safety. So far I have not seen any literature backing up the fear mongering. Please correct me if I am wrong!

Sue, Volunteer Mentor | @sueinmn | Jun 26 8:32pm

@s32 May I ask if the site telling you not to use the Keurig presented any research-based evidence?
And do they take a rigid stance on other issues as well?
As we always like to remind people, MAC & Bronchiectasis are different for each of us. There are VERY few one-size-fits-all rules. Even doctors don't all agree!
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/

s32 | @s32 | Jun 27 7:53am

In reply to @sweethighland "How was pseudomonas treated? IV antibiotic or oral may I know?" + (show)

I see a doctor at UNC and he treated me with oral tobramycin and ciprofloxacin twice a day

s32 | @s32 | Jun 27 8:04am

In reply to @sueinmn "@s32 May I ask if the site telling you not to use the Keurig presented any..." + (show)

The site is lung matters I stumbled across it when searching for information about my condition. No they didn't offer any research based evidence only that Keurig coffee makers breed bacteria.

s32 | @s32 | Jun 27 11:22am

In reply to @scoop "Others will need to respond regarding MAC/pseudomonas and coffee habits. As for me, I have had..." + (show)

Thank you that makes me feel better! I must admit the more I read I was becoming quite fearful!

sweethighland | @sweethighland | Jun 27 11:35am

In reply to @s32 "I see a doctor at UNC and he treated me with oral tobramycin and ciprofloxacin twice..." + (show)

Thank you very much. Was it for 2 weeks course? I assume UNC Chapel Hill, bronchiectasis center?

s32 | @s32 | Jun 27 12:43pm

In reply to @sweethighland "Thank you very much. Was it for 2 weeks course? I assume UNC Chapel Hill, bronchiectasis..." + (show)

Yes it was UNC Chapel Hill bronchiectasis center and I'm sorry I should have been more specific it was 28 days of inhaled tobramycin and oral ciprofloxacin. I'm so grateful to UNC they have been wonderful!

Sue, Volunteer Mentor | @sueinmn | Jun 27 5:04pm

In reply to @s32 "The site is lung matters I stumbled across it when searching for information about my condition...." + (show)

Perhaps you could ask for a citation to support their position

sisterpulse | @sisterpulse | Jun 30 4:44pm

Hi Sue
You and the group may know already that the 7th World Bronchiectasis Conference will be in Dundee Scotland 4-6 July and worth registering.
Prof Chalmers will be talking about a new drug which has been on trial Brensocatib and early results demonstrate it may reduce exacerbations in some patients.
So that’s good news for us, and it could be launched in the US mid 2025.
Thanks to Mayo and colleagues for all the help and support. Great to know we are not alone in living with this challenging disease.
Sr P

Just to let you know the World C