EVANSTON — After having to travel to Mexico to be diagnosed and receive effective treatment for Lyme disease, an Evanston woman is trying to raise awareness about the disease and some of the controversy surrounding its diagnosis and treatment options in the U.S.

The Centers for Disease Control and Prevention (CDC) estimates there are 300,000 confirmed cases of Lyme disease per year in the United States. Lyme disease is caused by bacterium (Borrelia Burgdorferi) and is transmitted by the blacklegged tick. Symptoms are fever, headache, fatigue, and bullet-like skin rash called erythema migrans.

Lyme can spread to the heart, joints and nervous system. Lyme disease is the most commonly reported vector-borne illness in the U.S. In 2015, it was the sixth most common illness. Most cases can be treated successfully with three to four weeks of antibiotics, primarily amoxicillin and doxycycline.

The test the CDC uses is a two-step procedure. If no bacteria show up in the first test the second one is not used. Results are considered positive only if both tests are positive. If the first test is skipped and the second one is positive the CDC believes that may lead to a false diagnosis. 

The National Institute of Allergies and Infectious Diseases (NIAID) committed to conduct research on Lyme beginning 20 years ago. The NIAID website states that if the aches and extreme fatigue last more than six months after treatment the condition is known as post-treatment Lyme disease syndrome (PTLDS) — often called “chronic Lyme disease.” However, NIAID studies have shown that prolonged use of antibiotics or alternative treatments have not helped and can even have serious complications. 

Experts at the CDC say the term “chronic Lyme disease” has been overused and has become a catch-all for a variety of maladies. The CDC doesn’t acknowledge the term as viable.

Herein lays the controversy and confusion surrounding Lyme disease today. Patients who have never been diagnosed with Lyme using the CDC procedure may exhibit the same long-term symptoms as those who have been diagnosed and treated for Lyme, causing some to be given the diagnosis of “chronic Lyme disease.”  

In a study of 61 people treated for the bacteria that causes Lyme disease, John Hopkins researchers found that fatigue, pain, insomnia and depression did persist over long periods of time for some people, despite largely normal physical exams and clinical laboratory testing.

According to Science Daily, John Hopkins Lyme Disease Clinical Research Center Director John N. Aucott said, “Post-treatment Lyme disease syndrome (PTLDS) is a real disorder that causes severe symptoms in the absence of clinically detectable infection.” 

Tulane University of New Orleans, Louisiana conducted a study of primates infected by the Lyme disease bacteria. It found Lyme bacteria can survive antibiotic treatment months after infection.

Lead author of the study Monica Embers, who is an assistant professor of microbiology and immunology at Tulane University School of Medicine, wrote, “It is apparent from these data that B. burgdorferi bacteria, which have had time to adapt to their host, have the ability to escape immune recognition, tolerate the antibiotic doxycycline and invade vital organs such as the brain and heart. Although current antibiotic regimens may cure most patients who are treated early, if the infection is allowed to progress, the 28-day treatment can be insufficient, based on these findings.” 

The study also found that all subjects treated with antibiotics were found to have some level of infection 7-12 months post treatment, despite testing negative by antibody tests for Lyme disease, two of 10 subjects were still infected with Lyme bacteria in heart and bladder, and Lyme bacteria which persist after antibiotic treatment are still viable.

Because the CDC doesn’t recognize the term “chronic Lyme disease,” patients who are given this diagnosis are left with no access to treatment. Insurance companies follow the guidelines set by the CDC for payment. Patients are left to their own resources, and some go to Mexico, Germany or other countries where alternative tests and treatments are available and legal.

One local woman who did just that is Liberty Day. While visiting Ecuador in 1998, Day fell desperately ill. Doctors thought she had contracted dengue fever, so she was treated for that. She only remembered being bit by a mosquito, and she recovered enough to return home.

Later, after the birth of her first child, she couldn’t get over the extreme fatigue and aches and pains she was experiencing. She had pneumonia over and over, all kinds of infections including sinus and kidney, constant inflammation and she couldn’t lose weight. 

Finally, a family member in the medical field suggested she go to an infectious disease specialist in Provo, Utah. There, Day spent three hours with a doctor. She said he listened to her whole story, told her he believed her and that she was not imagining her symptoms, which he thought indicated Lyme disease.  

He recommended a clinic in Tijuana, Mexico, and desperate for help, she went there. Day met with Dr. Jose Antonio Calzada, who’s been called in by the National Olympic Committee to provide information on infectious diseases, including Zika. Day was given a simple blood test and within minutes, instead of the months it took in the U.S., she was shown the spirochete Lyme bacteria in her blood — she was diagnosed with chronic Lyme disease.

“When I had the test at home they told me I didn’t have enough of the antibodies to make a Lyme diagnosis,” Day said, “and in Mexico, I saw it for myself.”

Day has been receiving some alternative treatments, which include stem cell implantation and nutritional remedies.

“Finally, I am waking up feeling rested and I have energy again,” Day said with a smile. “I have always had faith in modern American medicine and have medical people in my family, so I question: why won’t the CDC recognize “chronic Lyme disease” and use alternative testing and treatment? I don’t buy into conspiracy theories, but I have to ask why.”

She said the cost of care in Mexico is so much less that even though insurance won’t contribute, it is worth it to feel better and get well.

“The waiting room at the clinic in Mexico was full of people from the U.S. who gave testimony to their being alive because of the treatment they received in Mexico,” Day said. 

Controversy over terminology, diagnosis and treatment has caused many organizations to be formed in support of those who claim to have chronic Lyme disease. One of those advocacy groups, the Lyme Army, joined with the Worldwide Lyme Awareness and Assistance organization to hold a protest at the Center for Disease Control and Prevention headquarters in Atlanta last month. They demanded justice, truth, and acknowledgement for those infected with chronic Lyme disease.

Since the CDC only supports a diagnosis using the two-step procedure, the protesters claim that 85 percent of people experiencing symptoms fail diagnosis with the CDC test. These groups are demanding that the CDC look at alternative tests and treatments so that people labeled with “chronic Lyme disease” can be correctly diagnosed, treated and covered by insurance in the U.S. 

CDC scientists are currently working with researchers from Colorado State University to develop a new test to diagnose early Lyme disease. The CDC is partnering with the Mayo Clinic, Tennessee Department of Health and Vanderbilt University to obtain up to 30,000 clinical specimens from patients with suspected tick-borne illnesses over a three-year period to discover new tick-borne diseases.

According to a May 4 story in the Salt Lake Tribune, “Lyme-carrying ticks … are creeping into Utah, thanks to climate change.” The article says cases of Lyme disease in Utah have increased 500 percent over the last decade.

A CDC map shows the prevalence of the western blacklegged tick — which is known to carry and transmit Lyme disease — along the west coast, in parts of Nevada and Arizona and in nearly all of Utah,  including the northeast part of the state near Evanston. 

Wyoming Department of Health spokesperson Kim Deti, however, said Wyoming doesn’t keep statistics on Lyme disease because there are so few confirmed cases here. 

Dr. Carol Kavanaugh of Uinta Medical Group said, “I have never seen a case of Lyme disease in the seven years I have been here.”

She went on to say she has never even seen anyone who had the Lyme disease symptoms. She has only had one person ask for the test. Kavanaugh said she’s seen Rocky Mountain spotted fever and Tularemia, and those diseases definitely need instant medical care. 

“People need to protect themselves when they go into the wilderness areas by wearing clothing that covers them,” Kavanaugh said, “[and] when they return home, [by] inspecting their bodies for ticks and showering.”

She said new vaccines for Lyme disease are being created but it will take years of study for those to become available to the public. Kavanaugh said she agrees with the CDC about the misdiagnosis of “chronic Lyme disease” and that it can be a catch-all for similar symptoms.

She said controversy surrounding the diagnoses is similar to the one that took place regarding hepatitis-C and the confusion about testing and terminology.

“If someone does continue to show symptoms, then there is a need to repeat the testing,” she said. “That is the art of medicine.”

Testing would be administered locally and sent to a laboratory. ARUP laboratory in Salt Lake City is one of the local labs used for testing. Its website shows they use five different tests for Lyme disease. Four of those tests are used equally: the immunoblot, the CDC tests (the EIA and the ELISA), and the polymerase chain reaction. The fifth one, the PCR, is useful later on in the process of confirmation of the disease. Dr. Kavanaugh said she thinks there could be more cases in Wyoming because of the global highway and the fact that people travel all over the world.

From the year 2000 to 2016, the CDC confirmed 39 cases in Wyoming. Tickcheck.com estimates there were 390 “true” cases in Wyoming in that time span. The Tickcheck organization is affiliated with a university laboratory in East Stroudsburg, Pennsylvania, that studies tick-borne diseases.