LETTER: Early diagnosis, treatment are key against Lyme disease

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To the editor:

As a member of the Kentuckiana Lyme Support Group, I want to commend you on the well written article you recently printed on Lyme disease. Effective prevention is primary, but when the inevitable tick-borne infections occur, early treatment is essential. 

I would like to focus on early diagnosis and treatment and the gross under reporting of Lyme cases in our community and across the US.

According to the Center for Disease Control, Lyme is the fastest growing vector-borne disease in the United States. In 1977 when Lyme was identified, Connecticut was the only state that could be considered endemic for the newly named disease (named for Lyme, Conn., where the epidemic began in 1975). 

By 2007, 10 states were considered endemic. According to CDC data gathered between 1990 and 2008, states on our eastern and western borders (Virginia, West Virginia and Missouri) have anywhere from two to seven times the reported per capita rates of Lyme disease as Kentucky. Why would that be? The tiny Deer tick, the primary vector for the spirochete bacteria that causes Lyme disease, is present here. 

This is confirmed by entomologists at the University of Kentucky and anyone who spends time in natural areas across the state. The White Footed mouse and White Tailed deer, respectively the primary carriers of the bacteria and host to these ticks, are both abundant in Kentucky. So why are the reported rates of infection so low?

The CDC admits that the confirmed cases of Lyme disease submitted to them are under reported by at least a factor of 10. They receive data from local health departments, who collect it from local physicians. 

The reported rates are inaccurate in relation to the actual spread of the infection due to ignorance about the facts of this complicated disease, and the inaccuracy of the current laboratory tests. 

For example, as many as 75 percent of people those infected with Lyme will not present with the much publicized bull’s eye rash. Yet some physicians don’t seem to consider the possibility of Lyme without that rash. Worse yet, some patients who do present that rash have reported they were turned away by physicians.

A pastor in our support group twice presented a Bull’s Eye rash and the ticks themselves to two different local physicians, and both refused to test neither him nor the ticks. He now gives his sermons while seated on a stool due to the severe Lyme arthritis in his hips. 

According to the CDC, the only effective method to diagnose Lyme disease is via a clinical examination based upon symptoms and patient history. The primary lab test used for Lyme, the Western Blot, has a false negative rate of 40 percent or more. It only tests for the antibodies produced by the immune system in response to the presence of the Lyme bacteria. 

But the bacteria itself suppresses the immune system and hence the production of antibodies. Further, the CDC uses such narrow guidelines with regard to interpreting the Western Blot that most clinically diagnosed cases of Lyme are not reported to the CDC. That is true for me and the majority of the other 33 members of our local support group who were clinically diagnosed with Lyme disease. 

The CDC advises that physicians should not use lab tests as their primary diagnostic tool. 

Lyme disease is an epidemic and it is present in Kentucky. True infection rates will only grow in the years to come unless we as a greater community choose to educate ourselves to the facts of this disease, and demand early intervention. 

We can do that now, or we can follow the lead of states like Virginia, Pennsylvania, New York and others who wish they could turn back the clock and focus on prevention, early detection and treatment before hundreds of thousands of their citizens were debilitated and, in many cases, killed by tick-borne infections. 

Logan McCulloch