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Chronic Lyme Disease: A Guessing Game

The Questions Surrounding Lyme Disease


Part 25 of Our Award-Winning Series “Our Children’s Health”

Amanda waits impatiently for an important package to arrive from FedEx. When the doorbell rings and she signs for the materials that arrive in a cooler, she feels relieved knowing that all she has to do now is wait. The package needs to settle at room temperature. When it does, she takes a saline-filled syringe from her dresser and injects it into a catheter line she has in her right arm. It’s a prep for her injection of Rocephin, an extremely potent antibiotic.

After an hour, the tennis ball-sized amount of medication finally enters her system, sometimes forcing her thoughts to be foggy and her stomach unsettled. She is nauseous. She then takes a syringe filled with Heparin to lock the line to avoid potentially lethal blood clots.


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To a passerby on the train or street, Amanda Morante appears to be a healthy, normal 23-year-old woman. Her youthful appearance with porcelain skin, rectangular glasses and attenuated frame could leave most to assume she’s barely 16.

“But I’m not normal,” she says. “I am handicapped. It’s just not visible.”

Morante suffers from chronic Lyme disease, a condition that is unclearly defined and treated, and is a curiosity within the medical world. It is estimated that Morante contracted the disease when she was approximately 7 years old. Neither she nor her parents ever saw a rash, which is the usual indicator of a deer tick bite, the cause of the disease.

THE DIFFERENCE

It is estimated by the Centers for Disease Control and Prevention (CDC) that about 12,000 to 15,000 cases of Lyme disease are reported each year in the United States, primarily in the Northeast and North-Central parts of the country. The CDC also reports that in the year 2006, there were 20,000 cases reported, most of them children.

Lyme disease and chronic Lyme disease, named after Lyme, Conn., where the condition was first discovered in the U.S. in the mid ’70s, has a wide range of symptoms, from a distinctive rash to swollen joints to migrating pain. The symptoms initially were thought to be those of premature rheumatoid arthritis. Lyme disease and chronic Lyme have dissimilar symptoms and must be treated differently. Lyme disease’s initial infection is most often contracted when a deer tick, sometimes the size of a poppy seed, infected by the borreliosis bacteria, bites a person, leaving a “bull’s eye” rash.

If you find a tick on your child it is advised that you not pull it out, but rather have a doctor do so within 24 hours. They can then test it. It is easier to test the tick for Lyme than the person. The bite causes flu-like achiness, often accompanied by a fever, and in some instances disorientation, irritability, sleep disturbances, extreme anxiety and memory loss. If caught early, a strict regiment of Doxycycline can conquer the infection, placing the bacterial infection into remission.

However, people suffering from chronic Lyme disease may never have seen or had the “bull’s eye” rash—like Morante, who first noticed Lyme symptoms two years ago. People with chronic Lyme are affected differently. There isn’t a concrete way to manage the illness due to the presence of co-infections. People with chronic Lyme suffer symptoms from chronic pain to neurological deterioration from the bacteria’s screw-like shape burrowing itself into brain cells. Treatment, because its symptoms vary from person to person, is problematic, causing difficulty in determining guidelines for diagnosis, treatment and qualifications for medical insurance companies to abide by.

TESTING, TESTING

While living in the United Kingdom in 2007, Morante woke up extremely ill one morning, unable to swallow, so she went to the hospital. While there, she was hospitalized three times before returning to her parents’ home in Plainview, for further medical attention. “[The doctors] told me I had fibromyalgia,” remembers Amanda. “It became clear, however, that that certainly wasn’t the case. It wasn’t just pain. I was slurring my speech. I couldn’t swallow. So then they said it was chronic fatigue syndrome.” After many tests, changes in doctors, treatments and countless diagnoses, Morante wasn’t getting any healthier.

“I went on this support group chat room on the Internet for people with chronic fatigue syndrome, and this one woman posted that 77 people on the board had been tested for Lyme disease, and that maybe it was a trend…I grew up on Long Island and spent time visiting the Poconos, and then I thought maybe I should be tested.”

Says Clinical Psychologist Anna Satalino, Ph.D., who specializes in how chronically ill Lyme patients can cope with their disease: “There are so many people out there that are misdiagnosed…and chronic Lyme isn’t getting any publicity, it’s silently going on under the covers.”

In her persistence to get better, Morante took the necessary steps of finding out how to be properly tested for Lyme. Through Internet research and online support sites like Lyme Friends (www.lymefriends.com), a social networking site much like Facebook, but strictly reserved for people with Lyme disease, she learned of a specific lab in Palo Alto, Calif., called IGeneX, Inc., that tests for Lyme using an extremely sensitive process that detects Lyme bacteria in chronic cases rather than initial Lyme cases.

According to IGeneX, “Lyme bacteria are not always detectable in the whole blood, even in active disease. The bacteria like to hide…every patient responds differently to an infection and antibodies may only be present for a short time.”

The most common Lyme test is called ELISA, which is mostly used among general practitioners not specializing in Lyme disease diagnosis and treatment. However, the ELISA test is considered to be the least sensitive, only detecting the patient’s IgM and IgG levels, which are the body’s reaction to the Lyme bacteria. Other Lyme tests are the Lyme IFA, which is good for detecting the disease while it is still new, or relatively infant within the body. The Lyme Dot Blot Assay test searches for bacteria present in urine and a Polymerase Chain Reaction test, which is a critically specific test, can detect the disease in nearly all stages of development. Another form of testing, which is the test that Morante had taken, was the Western Blot, which takes a literal picture of the antibodies within the blood that the body develops in reaction to the infection.

STAYING POSITIVE

When Morante’s IGeneX laboratory test results came back to her, it didn’t matter that they came back “positive,” because New York State and the CDC don’t rely on IGeneX results.

“According to the State and the CDC, I’m not [considered] positive,” she says.

Says Satalino: “People feel very alienated, especially when they go to infectious disease doctors they say that chronic Lyme doesn’t even exist. There is so much research literature out there that supports that it is a chronic infection, but what happens is that the university state physicians and the Infectious Disease Society, they hurt the Lyme patients in a bad way because they ignore the research that is out there.”

Reasons as to why the disease is often considered to be nonexistent are debated. “There’s a lot of political reasons why,” Satalino says. “Money. Basically it comes down to the dollar, the cost of care for patients and the insurance companies who basically run everything.”

Because the guidelines set by the CDC for chronic Lyme disease determine that there must be five positive bands or markers present in the blood, Morante does not qualify, yet she still suffers all of the symptoms and has four of the five necessary bands present in her blood.

“This is the same as the way AIDS was treated in the ’80s,” says Morante. “People die from this disease. People are paralyzed from this. People’s families are ripped apart from this, but no one has a real clue as to what Lyme really is. How can I not have Lyme from one lab, if I have Lyme from another?”

According to Daniel Cameron, M.D., a member of the International Lyme and Associated Diseases Society, “Currently there is no reliable test to determine if someone has contracted Lyme disease or is cured of it. False positives and false negatives are far more common… Doctors who are experienced in recognizing Lyme disease will treat when symptoms typical of the illness are preset, even without a positive test, in an effort to prevent the development of chronic Lyme disease.”

CO-INFECTIONS AND COPING

In chronic Lyme patients, the presence of co-infections often occurs, which makes chronic Lyme so difficult to treat. Deer ticks carry other infections besides the Lyme bacteria. Most common are Babesiosis, Ehrlichiosis and Bartonella. Morante is afflicted most by Bartonella and has yet to begin treatment for the co-infection because of the cost.

Bartonella is a co-infection that leaves patients suffering from anxiety, hysteria, sore throat, swollen glands and other glandular problems. Morante says her doctors believe it is the sore throat condition that caused her swallowing problem. Morante recalls a time when “I was afraid to eat because I thought I’d choke.”

Co-infections are what make day-to-day life with Lyme so difficult. “I can’t work,” Morante says “I can’t stand for too long, I can’t lift anything with my arm that’s over five pounds [due to the catheter]. I have to plan my entire day around it. Will I be able to do my medicine? Will I be able to sit down somewhere? Can I get home quickly if something starts to go wrong? I want to be on maintenance therapy, like people who have diabetes, but the IV meds are a guessing game. Try this, is it working? Try that, is that working?” Her treatments are variously experimental due to the inconclusive test results and restrictions on treatment outlined by the CDC.

Co-infections make treatment difficult for those suffering from them. For Morante, the greatest grief is the unknown.

“For me it isn’t the pain. I can handle it. I can manage it. I would like to not have to live in the unknown anymore…get this IV out of my arm and just live like a regular person. It’s not about getting better, it’s about getting treated like a human being by doctors and insurance companies, because I’m not.”

LIVING

Living with Lyme disease is manageable but, Morante says, “It’s changed the way I think. I’m numb to it now, but it’s changed every aspect of my life.”

Morante, a Fashion Institute of Technology graduate with a BFA in graphic design, has had her entire life altered by the disease. She plans her days around her medication, plays a guessing game every time she is in pain and wonders whether it will remain permanent.

“You think you have all these goals, and then well, it’s probably not going to happen that way,” is how Morante thinks of the way Lyme has affected her life. “I go out, I see my friends and I pretend I’m not sick, but at the end of the day when I come home to my room, I’m there, alone with my disease, and it’s always going to be that way.”

Amanda pays for her medicine out of pocket because her insurance doesn’t support experimental Lyme treatment medication. Due to her disease she is unemployed, so she sells jewelry and takes donations through her website: www.amandamorante.com

Under Our Skin, There’s No Medicine for Someone Like You is an award-winning documentary on chronic Lyme disease by Andy Abrahams Wilson. The documentary is an in-depth view of Lyme disease and how it affects those who have it as well as the people around them. The film highlights the debate on diagnosis and CDC guidelines that affect the way insurance companies treat their subscribers. The documentary will be shown at the IFC Theater at 323 Avenue of the Americas in New York City, June 19 to 25. Call 212-924-7771 for more details or visit www.underourskin.com.

The Empire State Lyme Disease Association, Inc. runs support groups for those suffering with Lyme on Long Island at these locations:

Huntington

1-3 p.m. at the Huntington Library

338 Main St.

First Tuesday, monthly

Manorville

7-8:30 p.m. at the Manorville Firehouse

16 Silas Carter Rd.

First Wednesday, monthly

Hampton Bays

6:30-8:30 p.m.

Hampton Bays Library

52 Ponquogue Ave.

Fourth Thursday, monthly

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