Lyme Disease: Son of Top Military Physician Sick with Relapse After Routine Treatment? Co-infections?
Dr. Peter Dimitry, a retired assistant surgeon general for the U.S. Air Force, saw his 12-year-old son on a roller coaster of doctors' visits and health swings after being bitten by a tick in Williamsburg.
Speaking at a forum on Lyme disease in Purcellville Tuesday, Dimitry told the audience his son displayed symptoms soon after, and a doctor's visit resulted in a 14-day treatment cycle, but no Lyme diagnosis. After speaking with a friend with Infectious Diseases Society of America, he managed to get that cycle extended to 28 days, and said he supplemented that dosage with medicines he already had on hand.
His son's symptoms cleared up, and the boy remained in good health for six to eight months, Dimitry said, before things took a turn for the worse. His son began to experience trouble sleeping and finding the right words while speaking; he showed signs of anxiety, memory loss and experienced significant fatigue.
Visits to military medical doctors resulted in a referral to a psychiatrist, who Dimirty said placed his son on a number of psychiatric medications in the belief that his persistent symptoms were mental in nature.
As his son's symptoms continued to worsen, another blood test switched his diagnosis-he tested positive for Lyme by the IDSA case standards, showing the appropriate antibodies in the test. What followed was 14 months of intravenous antibiotic treatments, which the family drove five hours to receive.
Loudoun is quickly becoming the hot seat for the debate on Lyme disease in Virginia, with the first of two expert testimony hearings of Gov. Bob McDonnell's Lyme Disease Task Force having taken place Tuesday at Patrick Henry College in Purcellville.
For years, Rep. Frank Wolf (R-VA-10) has held forums in Loudoun with various experts in an attempt to raise awareness and understanding about a disease that has become an epidemic in the county, with more and more people being diagnosed each year. Now the state has taken up the cause, working to bring together expert testimony from representatives of the Centers for Disease Control and Infectious Diseases Society of America, as well as the stories of Virginia residents who have witnessed the effects of the disease first hand.
Chaired by PHC Chancellor Michael Farris, the task force's hearings are designed to "gather important information about the accuracy of diagnostic tools and efficacy of treatments and to discuss ways to increase awareness."
For many on the panel and in the audience, one of the main points of contention was the diagnostic guidelines issued by the IDSA to determine if a person has Lyme disease, and studies into the effectiveness of antibiotic treatments. The disease, spread by infected ticks, is typically diagnosed by a patient presenting symptoms including fever, headache, fatigue and a skin rash known as erythema migrans, which presents as a bull's-eye pattern rash near the bite site. Experts warn, however, that not all people have the rash, and it might be in a place that is not easily seen and can go unnoticed until it disappears.
Currently, most lab tests for Lyme disease rely on serologies, which measure the level of certain antibodies in the patient's blood. However, opponents of the test note research studies show such tests are often ineffective at diagnosing the disease's early stages. They also claim the test can yield false results, although the chance of a false negative is significantly higher, approximately 34 percent, versus 1 to 3 percent for false positives.
Farris, whose family members have been diagnosed with Lyme, said Wednesday the IDSA guidelines are designed to be used only for reporting cases to the CDC, which monitors the level of infection and spread of Lyme, but some doctors use the same standards for diagnosing the disease. As it can take several weeks for Lyme disease antibodies to build up, IGM and Western Blot testing can yield false negatives early on in the disease.
"The CDC itself says the tests are rigid only for statistical purposes, and shouldn't be used for diagnostic purposes," Farris said. "Doctors need to know this."
Farris said increasing awareness among patients and doctors as to how to diagnose the disease is one of the main goals of the task force, and a future expert hearing will focus on that subject.
Lyme disease is more prevalent in Loudoun than anywhere else in the state, with 201 cases reported in 2009. In Loudoun, a patient need only present the trademark bull's-eye rash for the case to be diagnosed as Lyme disease and reported to the CDC; however those patients who never present with a rash make a diagnosis more complicated.
Farris has plenty of first-hand experience, with his wife and seven of his 10 children diagnosed with Lyme. In addition, approximately 17 percent of the more than 200 employees at the college have reported being diagnosed with the disease. His family has encountered many of the problems experienced by audience members Tuesday, such as misdiagnoses, resistance from medical professionals in accepting a diagnosis of Chronic Lyme disease and failed treatment regimens. The IDSA recommends antibiotic treatments lasting from 10 to 28 days, using medicines such as Doxycycline or amoxicillin, although other antibiotics may be prescribed based on any pre-existing conditions. However, several audience members and guest speakers argued that those routines were not enough....
Schaller insert: one author of misc. Lyme papers felt antibiotics had risks that outweighed benefits.
Dimitry said he believes it was the extended cycle of antibiotics that helped his son. He questioned the effectiveness of diagnostic tests that can return a false negative up to one-third of the time, as well as the use of a limited selection of antibiotics in treating the disease. There are three different varieties...
Dr. Schaller does not support or oppose the material in this article.