This illness isn't going away

Philadelphia Inquirer
By Harvey L. Kliman
Lyme disease has reached epidemic proportions in Pennsylvania, particularly in the Southeastern region, which accounts for about 60 percent of the cases statewide. In 2003 and 2004, the state moved into the top spot in cases of Lyme disease, with 5,161 and 4,541 cases reported to the federal Centers for Disease Control and Prevention. With the CDC estimating that only one-tenth of the actual cases are reported, this would mean that we have about 45,000 unreported Lyme cases in the state each year.

Nationwide, 18,000 to 24,000 cases are reported to the CDC annually - which projects to about 250,000 total cases under the agency's estimates. This makes Lyme the nation's top insect-transmitted disease. Every year Lyme infects six times as many people as does HIV.

Lyme disease is an infection, most commonly contracted from a tick bite. It may initially cause a flu-like sickness. Untreated, or inadequately treated, it may cause long-term, persistent illness.

Symptoms of Lyme disease can be any or all of the following: joint and or muscle pain, joint swelling, headaches, numbness, tingling, shooting pains, memory loss, brain fog or confusion anxiety, panic attacks, extreme fatigue, and attention-deficit disorder or attention-deficit hyperactivity disorder in children.

There is no definitive test as of yet that can prove a person is cured of Lyme disease. Today's tests serve only to support the diagnosis and are not accurate enough to rule out the disease. The most common test is the ELISA or Lyme titer, which is only 65 percent accurate at best. This is not good enough to rule out Lyme disease in a patient with symptoms.

Greatly increased national funding is sorely needed to develop a new definitive test for Lyme disease that will give both patients and doctors increased confidence in diagnosis and progress in treatment.

Fortunately, national attention is being focused on the issue. Congress is addressing the problem with proposed legislation that would provide money for research and create a medical/citizen advisory committee to help coordinate research across the several government agencies working on infectious diseases.

Our organization, the Lyme Disease Association of Southeastern Pennsylvania Inc., along with more than 80 other related organizations, is urging support for House Resolution 2877, sponsored by U.S. Rep. Christopher H. Smith (R., N.J.)

If treated within a day or two of a tick bite, Lyme disease is often cured with three to four weeks of antibiotics. But many patients do not get well with that treatment and may require months or even years of multiple antibiotics to recover. These patients and their doctors need to be allowed to complete whatever treatment the doctor believes is required for symptoms to resolve.

The Pennsylvania House of Representatives recognizes the seriousness of Lyme disease in the state and has passed House Bill 1534. The bill would require that insurance companies provide coverage for long-term treatment judged to be medically necessary by a physician.

Now, many insurance companies do not cover long-term treatment, especially intravenous antibiotics, even when deemed medically necessary by a licensed physician. Patients suffer long-term debilitating illness as a result, when they cannot afford the necessary treatment.

Last legislative session, the Lyme bill was killed in the Senate Banking and Insurance Committee. This term, the bill has again passed the House and is waiting for action in the same Senate committee. We are urging residents to contact their state senators in support of this bill.

Though the legislation would help patients, it may cost insurance companies more money in the short run. But if patients are not treated as long as is necessary the first time they get Lyme disease, the long-term costs can be much greater, both in money and patient suffering.

We in the Lyme disease support community are baffled as to why it is taking so long to get state and national support for the hundreds of thousands of Lyme disease patients suffering today. With your support, we can move toward solutions.

Harvey L. Kliman, Ph.D., is president of the Lyme Disease Association of Southeastern Pennsylvania Inc. (www.lymepa.org) and lives in Chadds Ford.