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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Tina Sims | @tinaesims | May 12, 2019

I ordered the Shower Clear shower head. I have not installed it yet. Has anybody had problems with how heavy how it is?

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2 replies
pfists | @pfists | May 12, 2019
In reply to @tinaesims "I ordered the Shower Clear shower head. I have not installed it yet. Has anybody had..." + (show)
@tinaesims

I ordered the Shower Clear shower head. I have not installed it yet. Has anybody had problems with how heavy how it is?

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@tinaesims
Yes its super heavy solid brass construction. The only problem I have is closing it because it fits so tightly. I can open ok but I let my husband do the closing. I'm short too so that's part of the problem. If you have any problems email the company they were super helpful with my questions.
Shari

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kathyhg | @kathyhg | May 13, 2019
In reply to @tinaesims "I ordered the Shower Clear shower head. I have not installed it yet. Has anybody had..." + (show)
@tinaesims

I ordered the Shower Clear shower head. I have not installed it yet. Has anybody had problems with how heavy how it is?

Jump to this post

It is heavy but was easy (for my husband) to install. I don’t have any issues with opening or closing it, although was surprised how much water poured out when I opened it after first using it. I was grateful that I could empty the shower head instead of leaving all that water to sit in there. I love it!

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Tina Sims | @tinaesims | May 13, 2019

I'm scared it will be too heavy for the shower stem.

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kathyhg | @kathyhg | May 13, 2019

It isn’t too heavy for our shower stem. We live in a condo and everything seems to be “builder grade” so I assume that is the most flimsy shower stem available. If it works here, I’m guessing it would work anywhere!

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Jen_b | @jenblalock | May 15, 2019
In reply to @sueinmn "If it makes you feel better that you are "doing something" by replacing your shower head,..." + (show)
@sueinmn

If it makes you feel better that you are "doing something" by replacing your shower head, then do it. But that doesn't help with exposure to MAC prevalent throughout the environment.
After reading everything I can get my hands on, I would say the science isn't there yet to prove a conclusive link between your MAC infection and specifically, your shower. And even less that replacement of the shower head will "cure" the problem or prevent reinfection. As I understand this disease, once your lungs are colonized with MAC, it is not totally eradicated by treatment - just knocked down to undetectable numbers, so trying to "prevent infection" may be a moot point.
All of the studies cited are of very limited scope, with small sample sizes, and only one (from Japan) compared strains of mycobacterium found to the strains infecting residents of the homes. The results showed that only a few of the NTM found in the showers matched the strain the patient was infected with. None of the studies went as far as to evaluate any treatments like disinfecting or replacing the shower heads.
From a microbiological perspective, the biofilm that is formed surrounding NTM is tough, and I don't know what you can do at home to dislodge it & disinfect. That should certainly be subjected to thorough study as part of NTM research. That biofilm readily attaches to plastic - hmm, maybe the increase in infection is linked not to the shower heads, but to the replacement of copper plumbing and metal fixtures with plastic fixtures and pipe (PVC & PEX.) That would certainly be something to study as well.
As for myself, I have chosen to take the path of living a normal life, with reasonable precautions. I eat, rest, exercise, take my meds and do my breathing treatments to stay healthy. I wash my hands (a lot) and keep them away from my face. I avoid close contact with sick people. That means taking care when handling soil (avoid dust, wear gloves, wash thoroughly afterward.) At my Texas home, where I am pretty sure I contracted MAC, I have covered all the soil near my patio with ground cover, have a gardener mow, weed, rake & fertilize my yard & wash the patio while I am away & the house is well closed. I only garden there in pots with sterile potting soil. And I avoid blowing dust.

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@sueinmn Late reply. "once your lungs are colonized with MAC, it is not totally eradicated by treatment – just knocked down to undetectable numbers". Interesting. I've read quite a few studies but haven't seen this. I am going to look further into it. I agree with just living life and not worrying about the source of MAC/NTM. It is everywhere in the environment and my specialist said I would need to live in a bubble in order to avoid it. I've been off meds and MAC free (or perhaps MAC undetectable?) for over 2 years so far!

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1 reply
kathyhg | @kathyhg | May 15, 2019
In reply to @jenblalock "@sueinmn Late reply. "once your lungs are colonized with MAC, it is not totally eradicated by..." + (show)
@jenblalock

@sueinmn Late reply. "once your lungs are colonized with MAC, it is not totally eradicated by treatment – just knocked down to undetectable numbers". Interesting. I've read quite a few studies but haven't seen this. I am going to look further into it. I agree with just living life and not worrying about the source of MAC/NTM. It is everywhere in the environment and my specialist said I would need to live in a bubble in order to avoid it. I've been off meds and MAC free (or perhaps MAC undetectable?) for over 2 years so far!

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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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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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 Are you on the 'Big 3' meds? If so, three months is not long enough,. You would need to be on them for 12 to 18 months ( according to mac specialists). They will probably do a sputem test on you at this appointment (they should anyway) Please read all that you can about mac if you have not already. Good sources for info are http://www.ntminfo.org and http://www.njh.org and http://www.nih.gov. @janovr said she tested negative for mac after only 3 months on the big 3. So...….

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1 reply
kathyhg | @kathyhg | May 15, 2019
In reply to @windwalker "@kathyhg Are you on the 'Big 3' meds? If so, three months is not long enough,...." + (show)
@windwalker

@kathyhg Are you on the 'Big 3' meds? If so, three months is not long enough,. You would need to be on them for 12 to 18 months ( according to mac specialists). They will probably do a sputem test on you at this appointment (they should anyway) Please read all that you can about mac if you have not already. Good sources for info are http://www.ntminfo.org and http://www.njh.org and http://www.nih.gov. @janovr said she tested negative for mac after only 3 months on the big 3. So...….

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Thanks. I am on them and I know it’s not long enough. Sadly. But I’m still curious how they can tell if 15 months is enough. Or 18 months? I thought that there was a period after which the Mac is cleared that you still have to be on the meds? Or does it actually take 15-18 months to clear it? Obviously I need to do more reading myself!
Thanks.

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1 reply
Jen_b | @jenblalock | May 15, 2019
In reply to @kathyhg "Thanks. I am on them and I know it’s not long enough. Sadly. But I’m still..." + (show)
@kathyhg

Thanks. I am on them and I know it’s not long enough. Sadly. But I’m still curious how they can tell if 15 months is enough. Or 18 months? I thought that there was a period after which the Mac is cleared that you still have to be on the meds? Or does it actually take 15-18 months to clear it? Obviously I need to do more reading myself!
Thanks.

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@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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