Lyme Controversy Continues

A Danbury Hospital pilot program that studies Lyme disease will continue this summer in an attempt to find answers, as the debate over diagnosing symptoms of Lyme, treating the disease and its chronic symptoms continues between health care professionals and patients.

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 that “recruits” Lyme disease patients coming to the ER.

She wants them to take part in a study to help create a database. The program began last summer.

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.”

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.

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 multiple sclerosis.

The reason for this may lie with how the Lyme Borreliosis Burgdorferi spirochetes are shaped. The spirochetes (spy-ro-keets) are corkscrew 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.

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.

Buhner 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.

Syd Sellars, the manager of the Wellness Department at New Morning health food store in Woodbury, found a tick on herself in 2008 and decided to see a Lyme literate doctor in Bridgeport.

It was important for Sellars to find a physician who specializes in treating Lyme and one who also uses a lab in California called IGENEX.

Seller’s daughter had suffered with severe migraines several years before until a correct diagnosis of Lyme was made.

Sellar’s said “Lyme is coming to the point of endemic.”

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.

For individuals 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.