Response from Floridians Regarding Article
in: The News-Journal (Daytona Beach, FL)
Dear Ms. Koren,
We were thrilled to see the article on Lyme Disease on the front page of THE NEWS-JOURNAL on October 4th, entitled, "Tick Talk". Lyme Disease deserves a great deal more "exposure" here in Florida. Bravo! Because educating both the medical profession and the public is critical, we commend the NEWS JOURNAL for this article.
However, we were very concerned to read some of the "facts" stated thus far regarding the diagnosis and treatment of this complicated disease. Lyme Disease is a complex condition for a variety of reasons Ð the tests available are generally not accurate with a high rate of false negatives; the disease mimics an estimated 200 other diseases adding to the difficulty in diagnosis; much controversy exists regarding treatment, duration for the disease, and the actual numbers of infected patients.
The CDC itself estimates that only 10-20% of cases are being diagnosed. Additionally, even though it is a "reportable" disease, due to the complicated reporting procedure, many physicians just do not have the time to follow through.
Lyme Disease doesn't get the exposure it should because it does not cause rapid death like West Niles Virus, although there is documentation of patients who have died. There is a blanket of ignorance about what is considered the fastest spreading tick-borne disease in the United States, and possibly the world.
It is possible to be "cured" in the very early stages of Lyme Disease with the appropriate treatment, but this requires physicians who acknowledge that the disease does exist in their state, and who are aware of the controversies existing about treatment. Only slightly more than half of those infected exhibit the classic "bull's-eye rash," so doctors must rely on clinical symptoms, hoping that tests will confirm their diagnoses, but aware that the tests may not.
There are a few very good Lyme physicians in Florida who are treating far more than the dozen patients that Dr. Duma has treated. These physicians are treating patients infected not only in Florida, but also endemic and non-endemic states. There are so few that the writers of this letter travel from one to four hours each way for treatment. These doctors stay very informed of new information and testing about the disease, recognizing that their role is very critical. These physicians recognize that there is no simple answer for those chronically infected.
We are concerned that Dr. Duma refers to those physicians in the northeastern states as "Lyme Factories" — it would be an education for him to visit these clinics and observe what these doctors are treating. They are anything BUT "factories" — they are helping many very ill people, with confirmed positive tests, reach for health, and these physicians often do this while facing a great deal of controversy. His remarks are inappropriate and ill considered.
We are grateful that although we were not diagnosed early enough for an immediate cure, that at least we were able to find compassionate and tenacious treatment through Lyme specialists, first in other states, and now here in Florida.
CDC statistics for 2004 indicate that Florida's reported cases ranks 17th in the country (www.lyme.org/resources/2000-9.htm) -- perhaps the people and physicians in Florida SHOULD be more aware of its existence ... "As with a majority of diseases reported through a passive surveillance system, Lyme disease is underreported." (Surveillance for Lyme Disease --- United States, 1992-1998. Division of Vector-Borne Infectious Diseases. National Center for Infectious Diseases.)
Doctor Duma's states that "So many doctors taking care of Lyme disease are diagnosing it incorrectly. Probably half of these patients never had it. The tests we have are fairly good, but not as accurate as we would like. It's a very important disease, but its signs and symptoms are similar to many other diseases." Since the tests currently available are NOT generally reliable, there is no way for him to know whether it is being diagnosed accurately. There is no way for him to know whether half of the patients diagnosed had it or not. And yes, it IS similar to other diseases Ð which makes it more complicated to diagnose and recognize. And irresponsible comments like his do not help at all.
Your article did not state if Dr. Duma actually had personal contact with these Lyme literate physicians and their patient records to be able to know whether these doctors had carefully ruled out other diseases! How would we know if he had done this research to be able to categorically state that their care basically lacks this important component? The recognized "Lyme Disease physicians" of course treat people with other illnesses and come from a wide variety of specialties.
Thanks again for making Lyme Disease visible to readers in Florida. We just needed to clear up some issues that are vital for folks to have a much broader picture of what actually is going on in the Lyme Disease treatment field.
Joan O'Brien Singer, MSW, CSW-Disabled
Orange City, Florida
Christina Sandford, College Student
Orange Park, Florida
My Thanks to These Wise Floridians for Sharing Their Time and Helping Others.
They are True Servants.
With Thanks for Their Views,