1. < MAC & Bronchiectasis

Best Shower heads for MAC

Posted by kathyhg @kathyhg, Mar 18, 2019

I've been reading about shower heads and it seems that many are bad for growing bacteria. One mentioned on another forum was called The Original Chrome Shower Head by Shower Clear. It is very expensive and wondering if anyone has experience with this or others that might be good.
Thanks,

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kathyhg | @kathyhg | May 15, 2019

Wow. I was going to ask my respirologist tomorrow so perhaps my question should be when I do the first culture.

I feel a bit foolish for not knowing this but was so sick and overwhelmed when I started this journey that I can’t honestly even remember what the doctor told me about the disease and the treatment. I’ve learned enough to make a list for this appointment.

Thanks again. This forum has been a lifesaver for me.

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2 replies
Jen_b | @jenblalock | May 15, 2019
In reply to @kathyhg "Please share your findings on this! I’ve just finished my first 3 months on medication. When..." + (show)
@kathyhg

Please share your findings on this! I’ve just finished my first 3 months on medication. When I started, I thought that the medication would “cure” the mac. I’ve learned a lot since then and now hopeful that the the treatment gets it to undetectable numbers.

Question - how do the specialists figure out when that is? CT? Bronchoscopy? And I thought you stay on the meds for a period of time even after it’s eradicated?

Tomorrow is my first follow up appointment with my respirologist but I would like to go prepared :).
Thanks.

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@kathyhg @sueinmn Here's what I found and I'm not quite sure what to make of it. "It will be difficult to establish markers that predict the optimal duration of antimycobacterial therapy in a disease in which relapse-free cure may not be the best variable to define treatment success and cure is not even defined. In many patients with NTM pulmonary disease, classical outcome definition of relapse-free cure is not achievable, either because eradication of mycobacteria is not possible or because recolonization will occur." Source: https://www.atsjournals.org/doi/full/10.1164/rccm.201507-1392LE

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2 replies
Jen_b | @jenblalock | May 15, 2019
In reply to @kathyhg "Wow. I was going to ask my respirologist tomorrow so perhaps my question should be when..." + (show)
@kathyhg

Wow. I was going to ask my respirologist tomorrow so perhaps my question should be when I do the first culture.

I feel a bit foolish for not knowing this but was so sick and overwhelmed when I started this journey that I can’t honestly even remember what the doctor told me about the disease and the treatment. I’ve learned enough to make a list for this appointment.

Thanks again. This forum has been a lifesaver for me.

Jump to this post

Check out this website: https://www.aboutntm.com/ It might help. I am also looking for a website where they give you questions to ask your doctor. I know there is one but cannot remember where. I've been off meds and MAC free for 2 years now so it was a while ago but I definitely remember the confused and scared feelings!

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migizii | @migizii | May 15, 2019
In reply to @jenblalock "@kathyhg @sueinmn Here's what I found and I'm not quite sure what to make of it...." + (show)
@jenblalock

@kathyhg @sueinmn Here's what I found and I'm not quite sure what to make of it. "It will be difficult to establish markers that predict the optimal duration of antimycobacterial therapy in a disease in which relapse-free cure may not be the best variable to define treatment success and cure is not even defined. In many patients with NTM pulmonary disease, classical outcome definition of relapse-free cure is not achievable, either because eradication of mycobacteria is not possible or because recolonization will occur." Source: https://www.atsjournals.org/doi/full/10.1164/rccm.201507-1392LE

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@migizii this was a very interesting abstract. It does seem our illness makes it difficult to determine treatment guidelines on a number of levels but this forum is so helpful in learning different aspects of how to approach one thing or another. Thanks!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 15, 2019
In reply to @jenblalock "@kathyhg @sueinmn Here's what I found and I'm not quite sure what to make of it...." + (show)
@jenblalock

@kathyhg @sueinmn Here's what I found and I'm not quite sure what to make of it. "It will be difficult to establish markers that predict the optimal duration of antimycobacterial therapy in a disease in which relapse-free cure may not be the best variable to define treatment success and cure is not even defined. In many patients with NTM pulmonary disease, classical outcome definition of relapse-free cure is not achievable, either because eradication of mycobacteria is not possible or because recolonization will occur." Source: https://www.atsjournals.org/doi/full/10.1164/rccm.201507-1392LE

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@jenblalock My Mayo dr thinks the same way as this article and that is why I am on maintenance antibiotics indefinitely. I sure wish a cure would come along.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 15, 2019
In reply to @kathyhg "Wow. I was going to ask my respirologist tomorrow so perhaps my question should be when..." + (show)
@kathyhg

Wow. I was going to ask my respirologist tomorrow so perhaps my question should be when I do the first culture.

I feel a bit foolish for not knowing this but was so sick and overwhelmed when I started this journey that I can’t honestly even remember what the doctor told me about the disease and the treatment. I’ve learned enough to make a list for this appointment.

Thanks again. This forum has been a lifesaver for me.

Jump to this post

@kathyhg I am so glad that you found this site useful. I have a feeling this disease will keep us on a learning curve for awhile. Good luck with your dr appointment.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 15, 2019
In reply to @jenblalock "@kathyhg The normal protocol is 3 negative cultures then continue meds for one year from 1st..." + (show)
@jenblalock

@kathyhg The normal protocol is 3 negative cultures then continue meds for one year from 1st negative culture. Does that make sense?

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@kathyhg and @jenblalock Yes, that is right. You are supposed to stay on them a year after a negative test result to (try to) make sure the mac is good and dead.

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phoenixrises | @phoenixrises | Jul 20, 2019

There is conflicting information that can be confusing regarding showerheads and NTM. Some members are talking about using Shower Clear's "all-metal" showerheads as being safer than plastic showerheads for minimizing inhaling NTM in the shower; however a more recent study I read (Sept. 2018 - see article info at end) indicates that mycobateria in plastic showerheads were on average "two times lower than in showerheads that were constructed of either metal or a mix of metal and plastic components." (You can find the research study if you Google: Ecological Analyses of Mycobacteria in Showerhead Biofilms and Their Relevance to Human Health, by Matthew J. Gebert, Manuel Delgado-Baquerizo, Angela M. Oliverio, Tara M. Webster, Lauren M. Nichols, Jennifer R. Honda, Edward D. Chan, Jennifer Adjemian, Robert R. Dunn, Noah Fierer
Mary Ann Moran, Editor, DOI: 10.1128/mBio.01614-18

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3 replies
pfists | @pfists | Jul 20, 2019
In reply to @phoenixrises "There is conflicting information that can be confusing regarding showerheads and NTM. Some members are talking..." + (show)
@phoenixrises

There is conflicting information that can be confusing regarding showerheads and NTM. Some members are talking about using Shower Clear's "all-metal" showerheads as being safer than plastic showerheads for minimizing inhaling NTM in the shower; however a more recent study I read (Sept. 2018 - see article info at end) indicates that mycobateria in plastic showerheads were on average "two times lower than in showerheads that were constructed of either metal or a mix of metal and plastic components." (You can find the research study if you Google: Ecological Analyses of Mycobacteria in Showerhead Biofilms and Their Relevance to Human Health, by Matthew J. Gebert, Manuel Delgado-Baquerizo, Angela M. Oliverio, Tara M. Webster, Lauren M. Nichols, Jennifer R. Honda, Edward D. Chan, Jennifer Adjemian, Robert R. Dunn, Noah Fierer
Mary Ann Moran, Editor, DOI: 10.1128/mBio.01614-18

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@phoenixrises
The "Shower Clear"
metal shower head flips open and dries out completely then flips shut when dry so no mold or bacteria can build in it. I'm happy with mine. It does produce more of a rain shower than regular aresoled type mist shower.
Anyway Hopefully this helps reduce Mac.
Shari

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