addyit (addyit) wrote in crohns_patients,

Evidence of Teh Crazy.

(yes, you don't need to tell me. i'm crazy. hence what i've researched, written, and put here to share with you).

Foreword: If you have a normal, healthy immune system (as most people do), are not taking immunosuppresants, or constantly exposed to high levels of regular antibiotics, you won’t be interested in anything I have to say. Bounce off and enjoy your day. Even better…. Go take a shower. (And I MEAN it. Hypochondriacs, don’t waste your time. This does NOT apply to you if you don’t have CF, Crohn’s, HIV/AIDs, etc, or aren’t taking medication to counteract/counterbalance these things.

Also: HIV/AIDs patients are more likely to catch MAC from a showerhead than a CF patient. I don’t know about Crohnies. I’m an oddity, since I have both. People on immunosuppressants should take a peek, i think.)

Well, I’ve done some research with my family. I’ve contacted my GI, my respirologist (who, in turn, contacted my CF clinic associate’s microbiologist). I got emails from all three, which made me very happy since it was very unexpected.


The verdict, so far, is: you can’t fully eradicate MAC from your water system. Like pseudomonas, it’s in everything. BUT, you can control the area it develops in and make it much less likely to develop. Having MAC in your water doesn’t affect your lungs, since our main use for water is drinking, cooking, toiletries, and washing.

I couldn’t find many money-wise solutions to decontaminate showerheads, but I wanted to share what I know. The only thing that seems to kill MAC, chemically, while isolated in labs, are antibiotics. (In HIV patients, they treat with antibiotics when their white cell count falls before 50). UV lights work on one or another form, but this is too new to try at home.

So, what to do?

(It’s a lot more to do with common-sense than you think.)

MAC likes places that are dark, warm, wet, and unmoving. Like our lungs? Yes, true, but also, our showerheads.

MAC is more likely to develop in the plumbing to your water supply if your water has chlorine in it. Testing on showerheads, studies revealed chlorine bleach did not kill MAC. It seems to clear the way for MAC, and leaves extra room from the other bugs it kills. (One study found it’s more likely to grow in municipal water sources than in private wells). In a way, it feeds off the chlorine. Private wells are unlikely to have it, depending on where your water supply comes from and as long as you don’t treat the water itself with chlorine.

***This said, I must stress, my water comes from a private well. It’s never been chlorinated above twice all the time we’ve lived here (20 years). ~shrugs~ I’ve no idea where I contracted mine. As I’ve said, you can’t pinpoint where these things come from but you can make them a little less likely to happen.***

So… what should you do?

Reduce the risk of developing a bio-film. This is where MAC grows, and you can actually feel it (a slick, slimy surface). If you can’t take apart your showerhead, don’t dismantle it! You might not be able to put it back together! I think the best thing to do is descale it as much as possible, and let it dry out completely. (You can use CLR, or an equivalent).

When I asked my GI specialist about getting rid of MAC, he was stumped- he’d never been asked this question before. He suggested, in order to avoid a bio-film developing in the showerhead, run the water and keep the water running for a few minutes before you go in. (Of course, this would work best if the nozzle didn’t have tiny holes.) My clinic’s associated infection control microbiologist (try saying THAT three times fast) said likewise.

Seeing as how impossible it is to find a showerhead with no plastic pieces (they all seem to nowadays), I have other suggestions.

*Get a showerhead with as simple a head as possible and with as little plastic as possible. MAC likes plastic, and it’s less likely to grasp onto metal to form a bio-film. Find a showerhead with wide gaps rather than fine ones (something that drains well). One article talked with a doctor who suggested ignoring showers altogether, taking baths instead, and if necessary, using a hose attached to the nozzle instead… like what is used in salons, except no drizzly showerhead. It defeats the purpose of a shower, but that’s what is said.

*Use a metal showerhead, and clean/descale it twice a year, at least. (Use CLR or an equivalent). This won’t sanitize it, but it reduces the chance of calcium build-up and a biofilm developing significantly.

*Don’t let water sit in the pipes. If your showerhead has a hose, let it hang down to drain as completely as possible after use.

If it isn’t handheld, before using it, turn it on to run and leave it for a few minutes to clear the head. Leave the room if you can so you don’t inhale anything. (MAC can aerosol in the steam).

*Have one showerhead attached, and one in the cupboard (dried out and zip-locked). Then, one is completely dried out and ready to go, descaled and ready to attach. Disinfect the other one, let it dry out, and put it away, ready for your next maintenance day. ***(This suggestion is purely mine. Ignore it if you want. :-) )***

I have found types of showerhead sanitizers, but I don’t know if they work for biofilms, so don’t waste your money. They work for Legionairres, and they don’t list what is in the ingredients. As far as I can tell, the only thing that decontaminates MAC is a UV light… and this only works for some strains. DO NOT run out to buy one. It’s a waste of money, and you’d only kill some strains of MAC while making room for the other, rarer, more difficult strains… if they’re there.

There are brand-new UV light systems available in showerheads that dechlorinate water, but I think they’re a bad idea here. They’re too new, too expensive, and are made for too frivolous a purpose. (It dechlorinates the water so you don’t feel like you’re taking a bleach shower). There’s absolutely no proof that it would work for keeping MAC out of showerheads. (If anything, it could be a hazard; remember what a UV light does? It kills some forms of MAC, while leaving the biofilm open for others).

You’d be better off taking a bath.

This is something that everyone agrees with, and which is completely safe: baths. Yes, you have steam, but you’re less likely to inhale as much when in a bathtub of water. No showerhead involved, just plain water from the tap, and all’s well.

Even then, if you make sure to run the water through the head before you use the shower, and be sure to conduct the maintenance, things should stay relatively MAC-free. No bio-film, no MAC.

(It’s not going to stop me from taking showers, though. I hate baths. I already have MAC, and it’s likely it’ll never be completely gone, so, LOL, why should it change?)



So, the easiest, most cost-effective way of keeping things clear? Take baths instead of showers. Otherwise? Keep the water running, perform regular maintenance (descaling), and stick to metal.


Thank you, DrL, DrW, DrR… and the mountains of pages that we’ve gone through. New studies are VERY interesting.

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