Best Shower heads for MAC

Posted by kathyhg @kathyhg, Mon, Mar 18 7:53pm

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,

Liked by Dee

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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@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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@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.

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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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@kathyhg Here is the list of sample questions to ask your doctor. https://www.ntminfo.org/questions-to-ask-your-doctor/

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@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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@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.

Liked by Jen_b

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@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.

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@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.

Liked by Jen_b

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@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.

Liked by Jen_b

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