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Patient Stories: Natalie

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A North Carolina woman has recurring complications from a chronic MRSA infection.

While recovering from a car accident in 1999, Natalie became ill with a hospital acquired, multi-drug- resistant Staphylococcus aureus (MRSA) infection and has been battling it ever since. She was treated with a powerful antibiotic called vancomycin. During the course of the vancomycin treatment, she had a reaction to it known as “vancomycin infusion reaction” which causes extreme skin itching and a large red rash across the upper torso. When she was transferred to rehabilitation, she began running a fever again and displaying a rash in other parts of her body. Doctors determined that she was having an allergic reaction to the vancomycin itself and therefore, ended the antibiotic treatment. She made a strong recovery and returned to her life.

In 2006, Natalie was diagnosed with lymphoma, a cancer of the immune system. She was treated for the lymphoma and determined to be in remission. Eighteen months after that she had symptoms and blood work that indicated that the cancer was recurring, however, doctors discovered she had an encapsulated infection that was treated through surgery. Two years later, the MRSA re-emerged in an arthritic knee, but Natalie had skin reactions to every IV antibiotic doctors tried. Eventually, her infection subsided after several antibiotics were used.

In 2011, doctors found the encapsulated MRSA in a psoas (lower back) muscle, and she had it drained. She began a regimen of IV antibiotics to prevent the infection from returning and repeatedly had rash reactions to a range of different antibiotics doctors tried. Less than one year later doctors found another encapsulated infection in the psoas muscle on the other side of her back, drained it, and again treated with IV antibiotics. This time she had a life threatening allergic reaction requiring hospitalization.

After suffering from the various strange and recurring infections, Natalie asked the oncologist to consult with an infectious diseases doctor, who diagnosed her with common variable immunodeficiency. This condition makes her much more susceptible to bacterial infections than the average person.

Doctors have been unable to permanently cure Natalie’s chronic MRSA infections, and she has had at least 10 to date. Blood work monitoring steep spikes in inflammation markers and the symptoms of a recurrence, now all too familiar to Natalie, allow for quick communication with her doctor to report when the infection has returned. Her antibiotic regimen over the past couple of years is oral linezolid which she has taken for one week each month to keep the infection at bay, and then for a 5 or 6 week course each time there is a recurrence. Linezolid is the only antibiotic that does not cause her to experience an allergic reaction, although its side effects on one’s bone marrow contribute to anemia, lowered platelets, and intense GI upset contributing to extreme fatigue. Every time Natalie gets an infection it takes 12-16 weeks for her to fully recover from the infection itself and then from the burdensome side effects of the antibiotics. 

Her current infectious diseases physician believes the infection is in a bone in her pelvic area that continually causes the MRSA to reinflame. Natalie has recently stopped the monthly antibiotic (linezolid) treatment because her doctor is concerned that the bacteria may develop a resistance to the linezolid or that she may develop a reaction to it as she has with her other antibiotics. Therefore, he is “saving” the linezolid to use when she experiences her next MRSA. Meanwhile, her doctor is exploring the use of an antibiotic currently unavailable for commercial use in the US but used in Europe to treat MRSA (fusidic acid). It may be possible for Natalie to use this drug as part of a “compassionate use” arrangement via a pharmaceutical company.  

This regimen would require daily antibiotics. In addition, Natalie uses drug infusion therapy every three weeks for her immunodeficiency. Risky surgery to remove the infected bone in her spine will likely be her last resort and she does not want to risk the loss of mobility and likely pain that would follow.

Natalie’s unpredictable recurrences of her chronic MRSA and extremely burdensome regimen forced a revamping of her and her high school daughter’s lives. Three years ago she was unable to continue her non-profit consulting work and had to close her 25-year-old business. Her income has been drastically reduced and she now lives on disability and uses Medicare for health insurance. Because of another recurrence, she was unable to take her daughter on a long-planned summer vacation this year and because she was so ill, she had to rely on others to provide care for her daughter for about five weeks this summer.


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