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10 Things You Should Know About Burkholderia Cepacia

Answers to Some Common Questions

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Updated February 20, 2009

Burkholderia cepacia, which used to be called Pseudomonas cepacia, is a rare but significant threat to people who have cystic fibrosis (CF). While the odds are in your favor that you'll never encounter Burkholderia cepacia, you should have a basic understanding of what it is and how to reduce your risk of getting it.

1. What is B. cepacia?

Burkholderia cepacia (B. cepacia) is a group of bacteria that is found naturally in wet soil and decaying plants, such as rotting onions. We used to believe that the strains of B. cepacia found in soil and rotting vegetation were not the same as the strains found in people. But studies in recent years have found two of the strains that are most common in humans -- B. cenocepacia and B. multivorans -- in soil. This suggests that it may be possible to become infected by environmental sources.

2. What happens to people who have B. cepacia?

Once B. cepacia enters the body, there are three possible effects and it is not possible to predict which will happen. Sometimes B. cepacia colonizes in the lungs, causes no symptoms, and has no long term effect. Other times B. cepacia colonizes in the lungs and causes damaging lung infections and inflammation that lead to a slow deterioration of lung function. In the worst case scenario, B. cepacia can spread throughout the body causing “cepacia syndrome”, which leads to a rapid deterioration of lung function. Cepacia syndrome is a serious condition that does not always respond well to treatment. Unfortunately, even with proper treatment, cepacia syndrome can lead to death within a few weeks.

3. What are the symptoms of B. cepacia?

The symptoms of B. cepacia, if there are any at all, are the same as the symptoms of any lung infection and are common in people with cystic fibrosis even if they don’t have B. cepacia -– fever, cough, congestion, shortness of breath, and wheezing.

4. How is B. cepacia diagnosed?

The only way to diagnose B. cepacia is to culture the sputum. A culture will tell you if B. cepacia is present and if so, which strain or strains you are dealing with.

5. Who is at risk for acquiring B. cepacia?

B. cepacia rarely affects people with healthy immune systems, but people with poorly functioning immune systems and lung disease – including those with cystic fibrosis - are at risk for acquiring it. Thankfully, B. cepacia is not common. The Cystic Fibrosis Foundation reports that in 2006, only 3% of the people with cystic fibrosis who sought care at accredited centers tested positive for B. cepacia in their lungs. The good news is that B. cepacia occurs much less often than other organisms responsible for lung infections in people with cystic fibrosis. The bad news is that B. cepacia, when it does occur, is difficult to treat and can be life-shortening.

6. How is B. cepacia transmitted?

B. cepacia can live on surfaces such as sinks, counter tops, clothing and chairs for up to 2 hours if the droplets are dry and up to 24 hours if they are wet. While it is possible for B. cepacia to be transmitted through indirect contact with these objects, person to person contact is by far the most common mode of transmission.

7. If I test positive for B. cepacia, will I have any restrictions?

If you are colonized or infected with any strain of B. cepacia, you should avoid close contact with other susceptible people, including those with CF. This means that you should not share hospital rooms or attend events that other people with CF are likely to attend. For instance, you will not be able to attend any functions sponsored by the Cystic Fibrosis Foundation because of a strict exclusion policy for those with B. cepacia. Another unfortunate restriction is that, if your disease progresses to the point that you need a lung transplant, B. cepacia may prevent you from getting one.

8. Can I share a hospital room or attend events with others who have B. cepacia?

No, because there are many strains of B. cepacia. Being colonized or infected with one strain does not prevent you from acquiring another strain.

9. How is B. cepacia treated?

If you become colonized with B. cepacia, you will need to be more diligent than ever with the treatments you are already doing -- airway clearance, bronchodilators, mucolytics, and nutrition. If the colonization turns into an infection, things get a bit trickier. B. cepacia is highly resistant to most antibiotics. So once you become infected it is hard to get rid of. Normal courses of single antibiotics don’t usually work well, but combinations of antibiotics are sometimes successful. Scientists have recently discovered that they may be able to destroy drug-resistant bacteria like B. cepacia with a solution called a nanoemulsion, but this concept is still in the research stage.

10. What can I do to reduce my risk for acquiring B. cepacia ?

If you have cystic fibrosis, you can do nothing to eliminate the risk of acquiring B. cepacia completely but you can reduce your risk by being aware of potential sources of contamination and avoiding them. Don’t share food or drink, utensils, masks, nebulizers, or other equipment with others. Stay at least 3 feet away from other people with CF if they are coughing, and always practice good hand washing, especially if you’ve touched wet surfaces or sputum.

Sources:

Elborn, J.S."Practical Management of Cystic Fibrosis". Chron Respir Dis 2006; (3)161.

Cystic Fibrosis Foundation. Patient Registry 2006 Annual Data Report. 2008.

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