Tuesday, April 12, 2011

MRSA and Cystic Fibrosis

Here's another question from a reader that I thought most of you would find interesting. MRSA and other types of bugs are always a hot topic in our community so I figured it would be helpful to share this exchange. Remember when reading this that I am not a doctor (far from it) and I'm only sharing what has been told to me and what I've experienced.

I know from your blogs that you have MRSA. A dr just called and told me my son's last culture came back positive for it. :( What the hell does this mean for him? He was sick w/ a viral thing about a month ago and aftert a couple of weeks he was put on Sulfa and it seemed to work for a little bit but then his drainage turned back to green so our family dr (his cf dr was out that day) put him on Zithromax. That seemed to do the trick. Well, apparently, the fact that he didnt respond to the Sulfa made the cf doc suspicious and asked that we do a culture last Friday even tho we have a clinic tomorrow. He said we will treat him aggressively w/ antibiotics and hope that we can get rid of it? I thought once you have it you always have it? I am so confused...he also mentioned doing bleach baths?? WTH?? I thought it was transmitted thru blood but he said no mostly mucus, like snot? What do you think/know about this?? I dont even want to tell our family he tested positive (but I guess I have to to protect their kids from it?) b/c I dont want my son to be treated like he has the plague. Crap.

I'll try to answer your questions best I can and in order :)

We're not sure what it means. Some doctors will say that MRSA has no known long term effects on lung function while some believe that it can present a problem.

Treating aggressively is a good thing. Obviously not having it is better than having it.

The longer you have MRSA the less likely it is to go away. Treating early and often is key. You can get rid of it.

Never heard of bleach baths. When you find out what that is, let me know.

You may be thinking of MRSA/Staph found on the skin as far as the blood goes. This is different. It's actually found in many people's nostrils but because they have a normal mucociliary clearance system, it never gets to the lungs. It can be transmitted to other CFers via sneeze, cough, mucus, boogers etc.

You don't have to worry AT ALL about others in the family. I've talked at length with my doctors about this and the chance to "pass this on" at any level (to non-CFers) is very very little. I've asked about old people, babies, etc and they said not to worry. In theory, anything is possible. but getting others sick with our MRSA is very improbable. Think about it, Mandi would be sick! She's fine :)

Don't freak out mama. Encourage them to be aggressive and then hold on for the ride :)


I guess I better make my list of questions for his clinic tomorrow. Dr said that the bleach baths have be proven to help rid of the MRSA. I asked "why, is the bacteria on the skin?" and he said yes, it can be. Now, you say that is a different kind of MRSA? There are two kinds? He did mention it being a type of a staph. So maybe he doesnt have the same MRSA as you have? I know he didnt have it at his last clinic which was Feb 8, that culture came back negative for everything tested.

Weird thing to me is that he is fine right now, no symptoms of any sort. And his CF doc told me today that the zithromax wouldnt have gotten rid of the MRSA (obviously, seeing his tested positive after taking it) but my point being if he didnt have CF or it was one of my other kids, if they no longer had cold symptoms or any other symptoms I wouldnt think to have them be tested for anything else. And guessing neither would the dr. He mentioned that some carry the bacteria and are not symptomatic. Maybe he got it from one of us? I guess we'll all be getting tested for this:(

Oh Ronnie, do you cringe when you see you have mail from me??!! I am a treat aren't I?

There is stuff that they had me wash with when I first had MRSA, but I think it was only a nasal wash.

Generally speaking, if you hear about it on the skin, it's staph, not MRSA. We both have it in our lungs and it's the same bug. And it gets confusing, but MRSA is staph, but a staph that is resistant to the drug they usually use to treat staph. CFers can get both staph and MRSA in the lungs.

I don't feel any different since getting MRSA (2003) and my lung function hasn't declined because of it. I don't have increased exacerbations either. My doctors have never given my MRSA a second thought and don't seem to think it's a big deal.

You don't have to worry about having your family tested.

Keep the questions coming, that's why I'm here :)

But what if we carry it and we're the ones who gave it to him? Or would he have had to have gotten it from another CFer? Who knows, I suppose. I'll have to have the Dr clarify all this for me tomorrow. My son started on both the antibiotics they prescribed for him tonight already. Poor guy, one of them smells and probably tastes too, like cat urine. Dr warned me about that one. Real fun part is he has to have that one 3x's/day for 10 days. The other one, the yummy one, only 1x/day for 10 days. Nice.

So the MRSA you have doesnt cause the skin boils or anything? It's just a bacteria in your nose/snot? How did you find out you had it?

You can certainly try and take steps to prevent yourself from "passing it on" to your son, but I have a feeling that the doc will say that there isn't much you can do. It would be really hard to track down how the MRSA got to him and you'd probably drive yourself silly thinking of it. It's there now and all you can do is try to eradicate it the best that you can.

I've had the cat urine drug...wait until he starts marking the corner of your living room...just kidding.

MRSA will not cause skin boils. You have to think of our lungs and our skin as two different ecosystems if you will. MRSA in the lungs is a completely different ball game than MRSA/Staph on an open wound in your skin. I've asked the doctors before if I could cough on an open wound on my body and infect it with MRSA. Their answer: In theory it is possible, but very improbable.

I cultured MRSA after a routine sputum culture during one of my many hospitalizations. [END]

Hope you guys were able to get something from that! If you ever have any questions that come to mind, please don't ever hesitate to contact me by email or through CysticLife or Facebook.

Comments (14)

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Here's my two bobs worth as well!

Some infections we are told will always stay with us, and we need to keep them under control. Even when we don't test positive for them they can still be lurking inside us and waiting for a flare-up apperently. And we can commute these nasty bugs between us pwcf as well. And where do we find these horrible bugs? Everywhere!

What I tend to believe: Some of us do shake these bugs, its not miraculous, just unlikely. Yes we can get them anywhere so lets not worry about them unnecessarily as the stress is probably more harmful. Just take simple precautions like washing hands after toilet, before eating, don't play in sewerage,.. basic hygiene and don't forget a good dose of exercise and take time for your treatments,...

On the other hand I tend to be paranoid about the following. The worst bugs are found in hospitals and I therefore try avoid crowded places in hospitals. I 'sneak' into the CF clinic through fire-stairs and avoiding the main entrance for instance. If I have to sit in a waiting room with others I try find an alternative spot (when practical) in a corridor or near a window, and tell the desk where I am. Use the alcohol squirts to wash hands after leaving hospital. But above all, do not worry about it too much, only if convenient and practical.

Sometimes I have friends in hospital. I wont be holding a vigil by their bedside, but I will go and visit once or twice. Again take the fire-stairs and wash hands...

Other places I like to avoid is pharmacies, another place where people congregate. Call ahead, don't wait for prescriptions inside, ask a friend to pick up meds instead.

As a parent shield your kids from the seriousness to some extent, like you try not bother them with your money worries, try not worry them unnecessarily with the health fears you might have. Tell them they are very special because they have 65 roses!
1 reply · active 729 weeks ago
Good tips Walter!!
My son cultured MRSA the antibiotics worked and we have had normal cultures since. MRSA is very common and many people everyday walk around with it and never no they have it. As a nurse I was shocked Jacob did not culture it sooner. It can also arise from the use of antibiotics. The staph bug just learned how to be resistant to the antibiotics they are on. In my opinion I think that is how CFers get MRSA. That being said Jacob will always get his antibiotics and I believe in aggressive treatment. MRSA is one of those things to expect with long term use of antibiotics. There are papers out there that state that MRSA is so common that isation status in the hospital is no longer warranted. Don't know if I agree but the talk is out there.
1 reply · active 729 weeks ago
I wonder if there is any truth to that? Makes sense to me!!
My two year old just cultured it. she has to take bleach baths two or three times a week for the next month, on top of everything else.
2 replies · active 729 weeks ago
Still trying to figure out what a bleach bath is...
They are sending me the recipe in the mail, I will tell you when I know more!!!!! Who knew I would have to follow a recipe to bathe my baby.
Not really about MRSA but we had clinic yesterday and Dr. Black gave us a handout on treating CF chronic infections with zithromax long term. For instance, Iz would take it Monday, Wednesday, and Friday for life. I guess they have seen improved health in clinical trials. I'm not signing my 3 year old up for another lifetime medicine right now but that doesn't mean we won't consider it as she gets older especially if she gets MRSA or PA and cultures it repeatedly.
1 reply · active 729 weeks ago
I'm been taking Zithromax MWF for about 5 years now.
Thanks for the tip! That may be something I have to bring up to my doctors :)
I didn't get any of this info when i was diagnosed with mrsa, i was just told i cultured it and was on zymox... i also found out when i woke up on a ventilator, so they weren't really forthcoming with the answers. i had a regular exacerbation that hit the fan and i had to be rushed to the er on my 13th day of abx to be intubated. after that it was just so you cultured mrsa in your lungs, i'm sure you know what mrsa is, so when your infection starts to feel different, let us know and we'll treat for that as well. i only started culturing it months prior with the information that it would never go away, like the cf, but would be treated with the abx, until they couldn't treat it anymore. i'm not what you would call a healthy "cyster" either, i'm constantly fighting infections, if i leave the house im coming home coughing, i have severe abdominal scar tissue so i'm fighting constant pain that leaves me vomiting so my weight is down to 85, at 29yo, i do 4 nebs a day, no abx unless absolutely necessary because my liver is failing,... and i've have 3 nde's in the past 2 years, so dont take my course with mrsa as a normal one. I do want to say i was going to one of the BEST cf clinics in the US when i was diagnosed, I think they were just so shocked that they saw me on Monday to do my final pft and then on Friday I'm meeting her in the ER with an o2 sat of 80 and a fever of 104. So, I guess the point of my post is we should be grateful that what we may be going through at a point is treatable and there is time to learn about it, because in an instant, things can change. and I know that's not the mood of this blog, its all uplifty and "we're trying to be healthy" and I think that's great, but there is another reality to the situation...
1 reply · active 726 weeks ago
Yup, every experience is different. On this blog, I can only share what I've experienced or what I've been told by others.
Good tips Walter...

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