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 backyard," 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. 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 that  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.

Jennifer Bergen is the mother of five children and has suffered with Lyme disease since 2003. Bergen, who lives in Bethel, never saw a tick but had a bull’s eye mark from a tick bite. Because of the bull’s eye, Bergen’s doctor prescribed three weeks of Doxycycline.

A week after all her medication was finished, the pain returned and her physician prescribed a pain reliever. Her physician then said she had fibromyalgia. Four months later, Bergen’s Lyme disease became neurological and went into her brain.

For the next eighteen months, Bergen was on several different antibiotics, including IV picc-lines (peripherally inserted central catheter).

A period of six years past and during this time, the Eliza and Western Blot tests each time came up negative for Lyme. Because none of these tests came up with a positive result for Lyme, her insurance company refused to pay for most of her treatments.

However, during this time, a test came up positive for Bartenella. Finally, in December of 2009, a test came back positive for Lyme.

Bergen contacted the attorney general who at the time was Richard Blumenthal and his office was able to help Bergen’s family with the insurance company. Eventually the insurance company became responsible for the oral and IV treatments.

Bergen’s son Philip and her daughter Jessica, who were then 10- and 7-years-old, also needed IV picc-lines for Lyme disease.

Philip Bergen, now 18, missed an entire year of school during the fifth grade because of the Lyme’s neurological effects. Bergen had a Spect scan (single-proton emission computed tomography) done, which revealed the Lyme had infiltrated his brain. After all the antibiotics were finished, his brain scan was clear of Lyme.

Jessica Bergen, now 13, had double vision for 2 weeks. Jessica’s neurologist at the time said “little girls make up stories at that age.”

Eventually, an eye doctor diagnosed Jessica with cranial nerve palsy; he suspected Lyme and sent her to a pediatrician who then prescribed antibiotics.

Today, Jennifer Bergen is still unable to drive on the highways due to the light-headed and chronic effects of Lyme.

Bergen said, “It’s important to be your own advocate and to be bold.” 

Bergen also acknowledged that because of help from the Bethel community, The Scotty Fund, her church, friends and others along the way, she and her family were able to recover from the long-term effects of Lyme.

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.