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The Manchester Journal

Lyme disease, ?great imitator,? is no joke

article date: 07/30/2004

By Linda Maness
Journal Correspondent

MANCHESTER - Lyme disease is called the "Great Imitator" because it has the ability to imitate other diseases such as MS, ALS and Alzheimer's, making it difficult to diagnose.

Pat Smith, president of the Lyme Disease Association, Inc., based in New Jersey, and Dr. Brian Fallon of Columbia University will speak about Lyme disease on Friday, Aug. 6, at Burr and Burton Academy at 7:30 p.m.

Smith said that Lyme disease has been detected in 49 states and the District of Columbia. According to the Centers for Disease Control there have been no reported cases from Montana.

Additionally, Lyme disease cases have been cited in 80 countries around the world.

Lyme disease continues to be difficult to diagnose and Smith said, "I believe it is a disease that doctors need to read up on and learn new ways of detecting it because it mimics other illnesses."

Smith went on to explain that Lyme disease can "hide in the cell and elude detection, or it can enter a cell and come out cloaked in the cell membrane, thus disguised and not recognized by the body. There is scientific evidence of how Lyme evades the immune system but more research is needed on how to reach and treat this disease."

She said that the disease's bacterium, Borrelia burgdorferi, has the ability to go into other forms such as a cyst form "or a form which has no cell walls, so there's nothing for an antibiotic to attack."

Smith explained that one reason that a patient may cope for a long time is that Lyme Disease can come and go symptomatically, and "it has remission-like states, but a diagnosis of chronic lyme is forever."

The most common test is the ELISA antibody response test, "and many times the Lyme antibody can not be found as it forms a complex. Tests can only detect free antibody."

A primary problem with existing testing, she said, is that it is "totally unreliable. It is only 40-45 percent accurate."

Within the medical community there are Lyme Literate Physicians (LLMD ) who, according to Smith, "are cognizant of the symptoms of Lyme and know how to make a clinical diagnosis based upon these symptoms, patient history and exclusion of other diseases."

Should Lyme be detected in its early stages, Smith reported that LLMDs feel it can be treated with a short course of antibiotics, 4-6 weeks, " ... but it may require a longer course of treatment if symptoms persist. Being difficult to detect early on, the disease may move into a chronic stage much more difficult to treat."

Literature indicates that 10-15% of Lyme patients develop chronic disease.

Smith first became interested in Lyme disease 18 years ago, "primarily because Lyme was found in our school district in New Jersey where I was on the board of education at the time. I needed information and felt information was needed in the community. ... I also had two daughters who were diagnosed. I knew that more research was needed."

She said one daughter has coped with the disease for 17 years now, "But we were persistent in treating it and she has gone on to graduate from John Hopkins and currently lives and works in New York City."

Originally established on the local level in New Jersey, Lyme Disease Association, Inc. went national in 1999. LDA has funded projects coast to coast and Columbia University is partnering with the Lyme Disease Association and its Connecticut affiliate, Time For Lyme. LDA and TFL want to establish a center to study chronic disease.

Smith said, "This disease needs a lot of research. Monies are good, but raising awareness in Vermont is important, and in other states. Vermont hasn't recognized Lyme as a serious problem. The last couple of years we have received more phone calls from Lyme patients there and it does appear that Lyme is a problem in the Green Mountain State."

With the help of upcoming local fund-raising events such as Manchester's "Gear Up for Lyme Mt. Equinox Uphill Bike Climb," Smith said, "we come closer to reaching the goals of finding a cure for chronic Lyme disease and increasing awareness and education for both the public and medical field."

Smith emphasized that young people are at greatest risk. LDA's Lyme Aid for Kids, which allows families with no insurance coverage for Lyme to apply for monies for diagnosis and beginning treatment, is growing by leaps and bounds. New York Times best-selling author Amy Tan is supporting the fund.

LDA acts as an umbrella organization for many other programs across the country. Some may become affiliates, individual organizations with separate 501(c)3 status while others are chapters, and therefore are a part of our organization and our 501(c)3 status. We have affiliates and/or chapters in 11 states."

Smith said a stumbling block in the pursuit of increased awareness and research has been the reluctance of insurance companies who do not want to pay for long-term treatment. She added that the Centers for Disease Control, CDC, "unfortunately has some policies that are adversely affecting Lyme patients and need to be changed, especially those relating to reporting requirements," but pointed out that currently five states, New Jersey, Pennsylvania, New York, Massachusetts and Rhode Island, are working on the behalf of Lyme patients.

Smith proudly points to ILADS (International Lyme & Associated Diseases Society), a nonprofit, international, multidisciplinary medical society dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases through research and education. She said it strongly supports physicians and other health care professionals dedicated to finding a solution to Lyme disease. Smith is vice president, heading political action. ILADS just published treatment guidelines in peer review for chronic Lyme disease.

Smith maintains that there are many misconceptions about Lyme, "beginning with the fact that someone with Lyme has to have bullseye rash. Estimates range from 10-50 percent of people develop this rash. Another misconception is that a positive test for Lyme is needed for diagnosis. This is not true. People can test negative and still have the disease."

She continued, "Many in the medical community feel that Lyme is not a serious disease and that it is readily treated, 'that's the end of it.' Those who develop chronic disease and those who treat it would not agree with that assessment."

Lyme can also cause birth defects. It can be deadly, but fatalities are underreported, because deaths are often attributed to complications, rather than to the disease itself.

Some of the most important prevention measures include:

. Avoid tick habitats. This is becoming more difficult as tick populations are migrating and other types of ticks are carrying the disease.

. Use caution if going outdoors. Do tick checks frequently, especially in hairy areas, as well as creases and folds, skin and clothing.

. Wear light-colored clothing and tuck pants into socks - wear long pants and long sleeves.

. Consider using sprays - there are some just for clothing, Permethrin-based, and some are DEET-based for skin. Spray may cause problems, especially in children. Read directions carefully. There's Rhynoskin - tightweave long underwear. Some hunting clothing is being made with repellent in the weave. The Army is also using anti-tick chemicals in clothing.

Smith said to people who find ticks on themselves or others, "Don't squeeze it and do not put any substance on it. You do want to grasp it close to skin and pull it straight out and off. Incorrect removal increases the risk of infection, since it can inject the Lyme bacteria it has into you."

Lyme is spread mainly by the deer tick and is carried by the lonestar tick. Smith pointed out that the dog tick can harbor the disease, "although there are no proven cases of transmission."

To send the tick for testing, contact the health department to see if they will test it. She said there are also tick testing labs, "The time frame is usually one to two weeks or longer."

In Smith's opinion Lyme is not over-diagnosed. "People need to be cautious of this disease that is out there - adults, kids, pets - the key is in raising awareness!"

She emphasized that education about Lyme Disease is key to understanding its dangers, but also to taking the fear out of it, "You have to have respect for it and awareness of it."