I can tell you from having both these bacterias separately and together-- bacterias coming up in a culture didn't always correlate to my symptoms or lack of symptoms. That is what makes this disease maddening. It is frequently guesswork as to what is making you sick. The assumption is that when there is an increase in symptoms, that it is from one of these bacterias. I can tell you that I have learned (in my own case) after years of being prescribed antibiotics for every exacerbation...that antibiotics are not always necessary. And for me now, hardly necessary at all.
I ALWAYS cultured Pseudo, usually 2-4 strains. And staph less often. Then MRSA.
And here is the problem. I learned that exacerbations aren't always infection, when I switched to a doctor that treated my exacerbations in a totally different way. It took me a long time to trust her (2 years), but when I saw that I started to get sick less and less often with less and less antibiotics, I saw that there is always SOMETHING that you can do. The problem for me is in sharing my information with all of you, when most doctors still think the answer is antibiotics. So I will continue to do this in the hopes that you will keep asking your doctors about certain things and maybe there will be a time when doctors start looking at a very important part of this disease and that is inflammation. Frequently cause by allergens, irritants, and exposures to chemicals.
I am not saying that I just didn't take antibiotics. I had to figure out what was causing exacerbations. And I know with very young children, they cannot do asthma and allergy testing. And in fact in my own case, I do test postive for asthma (my previous doctors never mentioned asthma or told me that that was not my problem). And I even test negative for allergies. But I know now, that a huge source in addition to allergies are chemical sensitivities.
There are things in your home and lives that create inflammation in the body. So as a response, the airways swell, trapping CF'ers thick mucus with bacteria or even mucus plugs. If the mucus has no way to get out, you can end up with an exacerbation. But if you reduce the asthma, the airways stay open and the mucus can get out. So in my case, I have learned that certain exposures like smoke (barbecue, fireplace) a shoe store, exposure to strong fragrances, a windy day, so many things trigger exacerbations. CF'ers are usually on asthma meds of some kind, yet if your home or life has things that are making you sick, the meds aren't enough. And some people aren't on any meds to reduce inflammation at all.
When I start getting sick -- increased mucus, fever, blood, drop in FEV1 -- I have to do extra treatments (or my doctor changes my meds to reduce inflammation). If I can't get my airways open (for instance after an extreme exposure like smoke) it can develop into an infection for which I then have to take antibiotics. But this is at the point where I have gone as long as 2 years without any antibiotic.
ymikale: I added NAC and Tumeric. I don't know whether these are appropriate for kids. I suspect when the CFF study is done, there will be some kind of recommendation in this area. But there is so much you can do lifestyle wise: remove carpets, get an air filter, encase bedding, stop using toxic and fragrant cleaning products, soap, shampoos, detergents, organic food if possible, drive with the car windows up and the heat/air condiitoning going not get car exhaust, dispose of plants (the soil carries funguses, bacterias, and mold, use a chlorine filter in the showerhead, in cold or windy weather cover the nose and mouth. This is a start. You can look at other posts of mine if you are interested.
