Danbury Leading Lyme Disease Study

For the most part, the summer of 2010 proved to be hot and dry, not conducive weather for the tick population. Then in the later part of summer, the weather changed with significant amounts of rainfall and the ticks were back in full force.

In the spring and throughout July, a pilot program had started at Danbury Hospital, aimed at studying Lyme disease.

Amber Butler, who works for the Laura and Dale Kutnick Lyme Disease Research Center along with physicians’ assistants at the emergency room, is part of a research team. The research team “recruits” patients coming in to the E.R. with Lyme disease to participate in a study to help create a database.

Butler said those patients with a confirmed diagnosis willing to participate are asked to “fill out intake forms, with questions as to where exposure took place."

"Say for example, someone took a vacation to Martha’s Vineyard or received a bite while hiking or in their own back yard," Butler suggested. "Then patients would follow up six months later and fill out forms to see if their diagnosis has improved or whether they need more care.”

Due to the drier weather, there were not many people coming to the E.R. with symptoms of Lyme, so the program was put on hold until 2011.

The program should prove to be invaluable in the future as the debate over diagnosing symptoms of Lyme, treating the disease and the chronic symptoms, continues between heath care professionals and patients.

Last year, the Center for Disease Control (CDC) reported 30,000 cases of Lyme in the United States. In order for cases of Lyme to be reported, patient’s symptoms must reflect the list of symptoms that correspond with the CDC criteria.

Often Lyme disease goes undetected for a variety of reasons.

There are over 100 different tick diseases and only three specific Lyme tests; which sometimes prove to be inaccurate depending on what stage the disease is in or whether a medical professional read the test correctly.

Sometimes a person can be co-infected with two different types of tick diseases. And frequently Lyme disease goes on undetected for quite awhile

Yet another issue rests with extended care: insurance companies are not always willing to pay for extended treatments for patients with chronic Lyme disease.

‘Lyme Wars’ essentially exist among physicians when labeling patients with chronic or “post-chronic Lyme disease,” or PCLD, which is now the preferred label.

According to the documentary Under Our Skin, there is a political attachment between physicians who are in charge of setting the CDC criteria for Lyme disease.

The CDC has since written a “disclaimer” for its 2011 Case Definition of "Exposure" stating: Exposure is defined as having been less than or equal to 30 days before onset of EM, (erythema migrans, the initial skin lesion) in a wooded, brushy or grassy areas (i.e., potential tick habitants) in a country which Lyme is endemic.

A previous history of a tick bite is not required.

The CDC website further states, "Lyme disease reports will not be considered cases if the medical provider specifically states this is not a case of Lyme disease, or the only symptom listed is 'tick bite' or 'insect bite.”

Too often, patients with PCLD are told their symptoms are in their head or their symptoms are really some other type of disease such as arthritis, lupus or muscular sclerosis.

The reason for this may lay with how the Lyme Borreliosis Burgdorferi spirochetes are shaped. The spirochetes (spy-ro-keets) are cork-screw in shape, like syphilis spirochetes, and both easily penetrate into the collagen tissue layer.

Spirochetes can easily adapt in their new environment as they have the ability to change their gene structure. Spirochetes can also hide from antibiotics, making ticks themselves and spirochetes the perfect storm.

In his book Healing Lyme, Stephen Harold Buhner writes, “What makes the tick so successful is its own chemical makeup.”

In the spring, ticks will lay their eggs and in one month larvae appear. Newly-hatched larvae will latch onto hosts that are low to the ground, such as mice.

If for example, a mouse is previously infected with Lyme, the existing spirochetes act like a magnet and are immediately drawn to the new larvae to infect them.

Budner also notes that someone with an already low immune system would be more susceptible to the chemical components in the tick saliva. The spirochetes quickly learn and adapt their protein bodies to a particular host system. Spirochetes do this by changing information in their DNA structure.

Spirochetes can move more quickly in the tissues of the body than they can within the blood. This may be part of the reason why patients are initially misdiagnosed with diseases such as lupus.

In the beginning of March 1994, Annrose Fluskey who lives in Danbury began experiencing severe joint pain and insomnia. Her doctor ordered a series of tests including those for arthritis and lupus; which all came back negative.

Fluskey, a school teacher, knew there was something wrong and starting researching on the internet and suspected Lyme disease. Her doctor ordered a Western blot test and it came up borderline positive and “he didn’t initially want to treat her.” A second test was ordered and it came back positive.

Fluskey was given antibiotics but two weeks later, after she had finished the antibiotics the symptoms returned. She remembers requesting amoxicillin for the second round of treatment. The doctor prescribed the second treatment for a full 30 days. 

While on the amoxicillin, Fluskey went to the local health food store and purchased supplements as a compliment to healing Lyme. At the health food store, Fluskey picked up a twenty page paper by Dr. Joseph J.Burrascano, “Managing Lyme, Diagnostic Hints and Treatments.”

Fluskey has since remained Lyme free, but “honestly believes it was the combination of the antibiotics and supplements which helped her.”

In June of 2009, then-Gov. M. Jodi Rell signed a bill allowing doctors to prescribe long-term antibiotics to their patients suffering with post-chronic Lyme disease.

The bill’s provision will ensure doctors are not singled out or endure repercussions from state regulations in Connecticut.

Some doctors have received fines and have had to close their offices for ignoring the standardized insurance regulations over the long-term needs of their patients.

Dr. Charles Ray Jones, a pediatrician who has a practice in Connecticut, is one such physician. Allegations were made to the Department of Public Health (DPH) and $20,000 in fines was imposed by the Connecticut Medical Board.

For individuals currently suffering with Lyme disease, there are support groups in the area. The Lyme Disease Network has a list on their website at www.lymenet.org.