The following was in the Hillsboro Argus News it is no longer available on their website:

Ashley's long, painful journey What really bites are the words: 'We don't have Lyme in Oregon'

08/28/03

This is the first of a two-part story about a local girl's harrowing journey into pain and suffering caused by an unwanted antagonist -- Lyme Disease. -- who fooled doctors for nearly 10 years

In 1993, at six years of age, Ashley was a normal, happy, healthy child. She is now 16.

The intervening years, which one could reasonably have expected to be happy, instead have been a hellish nightmare of medical emergencies, inaccurate and conflicting diagnoses, inappropriate medication, battles with medical and insurance bureaucracies, and searching for a doctor who could accurately diagnose and treat Ashley's condition.

These years have been anything but normal and happy for Ashley and her parents, Marty and Theresa.

A week after Ashley had a tick bite her mother took her to a doctor, with concerns about a tick infection. Ashley had swollen glands, extreme lethargy, severe headache, had stopped eating and was having trouble moving her head.

Although he documented the tick bite, a negative response to the doctor's question as to whether the family had visited the east coast in the past month led him to rule out Lyme Disease, insisting that "we don't have Lyme in Oregon." His diagnosis -- the flu.

Over the next month Ashley had recurring high fevers, from 103 to 106.8 degrees, severe headaches, increased lethargy, many sinus infections and developed asthma. These symptoms resulted in numerous hospital trips.

After the first year the fevers subsided, to be replaced by severe pain in her neck, knees, shoulders, ankles, fingers and hips. In order to care for her daughter her mother, Theresa, stopped work and school. The doctor dismissed Theresa's questions about Lyme Disease, instead referring Ashley to an orthopedic specialist, who could find no clinical cause for the pain.

The doctor decided that Ashley must be depressed or abused, and suggested that she was making up her symptoms to gain attention or to miss school.

Over the next few years Ashley's symptoms became more severe and varied. She suffered severe nosebleeds, headaches, vomiting and fainting spells. This very bright child, who had loved school and learning new things, and who had been ahead of most of her classmates in math, began to have trouble understanding. Her teachers complained that she was not paying attention.

At a horse show in August, 1997, while riding her bicycle slowly from the barns to the family's motor home, Ashley lost consciousness and rolled over the handlebars. She landed face first, badly damaging her jaw. The dizzy spells and blackouts continued.

The administrator at the small, private school where her parents had enrolled her for fifth grade, called Ashley's parents and said that something was drastically wrong with her. While this was frightening, it was also reassuring that someone else was seeing the same symptoms her parents were seeing. They contacted a highly recommended neurologist, who diagnosed "absent seizures,"as the cause of her frequent blackouts.

For the remainder of her fifth grade year Ashley was home-schooled. Her study times frequently ended in tears, with Ashley sobbing that "I know I've done this before, but I don't know how anymore."

By summer of 1998, although her pain continued, she began riding her horse, even attending two small horse shows, but because of her seizures her doctors advised against riding competitively. Now age 12, Ashley developed an interest in figure skating, and begged her parents to let her take a few lessons. She loved it, but her knees began to give out and she fell frequently. Her orthopedic specialist told her to stop skating and sent her to physical therapy.

That helped, and she was able to resume skating.

In April, 1999, one of the champion Tennessee Walking Horse mares the family owned gave birth to a beautiful little filly, who was named Hallelujah's Superstar (Hallie for short.) Ashley immediately fell in love with Hallie, spent every day hand feeding her and teaching her to lead, in anticipation of showing her at a horse show the end of May.

On the Wednesday preceding the show, while brushing Hallie, Ashley had such severe stomach pains that she crumpled to the floor. Another girl helped her to the house, where she immediately laid down and fell asleep.

Theresa hired the girl to be their groom for the show, so that Ashley's only responsibility would be to show her filly. In spite of sleeping much of the time, and a very small appetite that meant she ate very little, Ashley was able to show Hallie, who won a blue ribbon!

While at the horse show, Ashley's face was pale and swollen, she began feeling very faint, and began to sway. When they stopped for dinner on the way home she was able to swallow only a few spoonfuls of her favorite clam chowder. After going to sleep in the motor home, she began coughing and choking. Two doctors agreed that she was suffering from congestive heart failure, caused by tachycardia (rapid heart beat.) Her choking at night was due to her lungs filling with fluid, and her inability to eat stemmed from her swollen heart pressing on her sternum.

For nearly three months Ashley was unable to get out of bed without fainting due to her rapid and fluttery heart beat. Her cardiologist referred her to a pediatric pulmonologist, who noted that "Ashley's only problem is that she's depressed." When Theresa challenged the doctor, his response was "your daughter is stressed because you are depressed and tightly wound." They left, and did not return.

In 2000, near the end of Ashley's seventh grade year, at age 13, she was ice skating again, and riding horses occasionally, although she had very little stamina. She dreamed of riding in the National Celebration, the world's largest Tennessee Walking Horse Show, and her mother entered her.

Ashley was still suffering from seizures, and consequently needed to wear a helmet when riding, but her dream came true when she rode in the National Celebration!

By 2001, after years of watching their daughter suffer, Ashley's parents were looking for some kind of change. They'd enjoyed camping in central Oregon, and they jumped at a chance to move to Bend. The list of Ashley's diagnoses was by now very long: fibromyalgia, chronic fatigue syndrome, severe headaches, juvenile rheumatoid arthritis without the rheumatoid factor, seizure disorder, asthma, flu syndrome, weak leg syndrome, mental disorder, and depression.

In addition, her mother was being explored for child abuse or Munchausen's Syndrome!

A break in their search for answers came when a friend, who had camped with them in the area, moved to another state, where she was diagnosed with Lyme Disease. When her friend asked about Ashley's health, and Theresa described what had been happening, her friend stated emphatically her belief that Ashley had Lyme.

After nearly 10 years of enduring all kinds of physical pain and discomfort, since age 6, and not knowing the cause, Ashley might finally have an answer -- Lyme Disease.

Ashley's mother, Theresa, had a friend who had camped with them years before, then moved out of state. The friend had been diagnosed with Lyme Disease by a doctor in her new home state. When told of Ashley's long list of symtoms, the friend believed Ashley had Lyme Disease. She advised contacting the Lyme Disease Association.

Theresa's husband was taking Ashley, who was suffering another heart episode, to the doctor's office when Theresa called him on a cell phone to convey this information. Theresa begged them not to leave until Ashley was tested for Lyme.

The doctor ran the test to humor them. It came back positive. She had multiple Lyme symptoms, and the doctor began treatment immediately.

The test, even though positive for Lyme specific bands, had only four of five bands. The director of the Center for Disease Control (CDC) advises that the number of bands in the test should not be used as a diagnostic tool, but only as a surveillance factor.

Disregarding this advice, many doctors and insurance companies are using the screening tool as a diagnostic tool, giving no credence to symptoms and circumstances. The doctor's colleagues stated emphatically that it was absolutely not Lyme causing Ashley's symptoms and complaints. They refused to explore tick-borne diseases as the cause of her deteriorating condition and "strongly encouraged" him to discontinue treatment.

Theresa began her own search for answers. She found information at lymenet.org. She talked to people who either had family members with Lyme, or had it themselves, and learned from them that the medical community all too often overlooks or rejects the possibility of Lyme. They also suggested that Ashley see Dr. Charles R. Jones, of Connecticut, the world's leading tick-borne disease pediatrician, who has treated thousands of children, and knows all too well the long term ravages of this disease. He also teaches doctors about Lyme at Columbia University, and is a panel member to that university's Lyme Research Group.

After spending nearly four hours with Ashley's exam and reviewing her medical records, Dr. Jones strongly suspected Lyme Disease. He stated that Ashley was "classical" and wondered how others could have missed it for so many years. He tested her for other tick-borne infections, immune system problems and other diseases -- to rule out other possibilities.

Ashley was so exhausted from the trip that she slept for nearly a week, waking only to eat or throw up. As it turned out, Ashley had three tick-borne diseases, Borrelia (lyme disease,) Erlichiosis and Babesiosis.

Theresa also had Borrelia, but she'd been afraid to tell previous doctors: "They already thought we were crazy, and I was afraid to tell them what I was going through, for fear they'd consider it another reason not to treat Ashley."

Ashley and her parents call Dr. Jones a lifesaver. They assembled a medical team here in Oregon that was willing to accept Dr. Jones' diagnosis, and to speak with him to gain knowledge about the disease. After 10 long years, Ashley began to improve. She went back to school with a smile, has been on the honor roll and hopes to become a doctor.

In October, 2002, Ashley's smile disappeared. Due to insurance/doctor reasons she was removed from her medications against Dr. Jones' orders. After two months without treatment she began a severe downward spiral. She missed over 20 days of school in one term, and spent many days in bed again.

One of her Oregon doctors, very concerned about the changes in Ashley's condition, suggested she go back to visit Dr. Jones, who immediately renewed therapy. He still feels that she will get a complete or nearly complete recovery, despite the setback during the interruption intreatment.

Dr. Jones warned that to start and stop treatment again could result in permanent brain damage, memory loss and impaired cognitive function.

Over these harrowing years, in addition to caring for Ashley and doing their best to meet the challenges her illness was presenting, Ashley's parents encountered severe difficulties with insurance companies and doctors who should have been their allies. Doctors did not share information.

Insurance carriers insisted that doctors had been paid, but the doctors insisted they had not. They have received contradictory letters from the same person in an insurance company. Sometimes the family paid doctors' fees out of pocket (in addition to insurance premiums).

Although they requested a case review, the insurance company delayed, saying treatment had not been necessary. They never received the paperwork required for review and appeal.

Effective June 8, 2003, Ashley was denied any further payment from insurance for medication for her Lyme Disease. Marty and Theresa are not willing to give up Dr. Jones' recommended treatment, that has resulted in her dramatic improvement.

In order to pay for medical treatment, they have been forced to quickly sell many of their horses at thousands of dollars under their actual value. They still have Hallie, but although Ashley is probably well enough to be able to show her again -- for the first time since her blue ribbon -- the expense of her medication preventsthat.

Hallie gave birth to a foal this year, but the baby is for sale. The family hobby and vacations in the past have been showing their horses. For the past three years their "vacations" have been visits to their doctor on the East Coast. They no longer have the show horses, nor a lot of the foals they would normally have had.

Lyme Disease has taken away this family's way of life.

I asked Ashley if there were anything she would really want people to know about how the disease has affected her life.

This is her answer:

"I don't have a ton of friends, but I do have a few really good ones. They play sports and hike and camp and go on vacations. Even though they are really terrific and supportive friends, it's hard to be around them sometimes because I wish I could do all those things with them.

"My boyfriend is healthy and athletic too. He does sports pretty much all year round and he really likes outdoor activities like camping and hiking. When I was healthier I thrived on sports and outdoor activities, so now it's really hard to be dating someone who loves all that, and not be able to do those things with him.

"It's also just really difficult in general to see my brother skydiving, my boyfriend wrestling, my best friend playing softball, and then to see myself not being able to figure skate or ride horses competitively like I used to.

"Those were the things that I thought made me individual, like my friends' sports make each of them an individual. Those were the things I could talk about forever without ever getting bored. Now I can't really do any of those activities, and talking about them just makes me want to cry.

"During the school year it takes all of my energy just to make it to school every other day ɠso, needless to say, sports are just out of the question. During school breaks I usually try to get back into ice skating and riding horses just for fun -- even though I really would rather be competitive at it -- but the pain usually gets so bad I don't enjoy it the way I did.

"Every day that I get older, I just worry more and more that by the time I do get well enough to be competitive at my sports, I'll be in college and I won't have time to do those things. I used to dream of being an Olympic skater, and now the only thing I dare dream about is that I might graduate high school.

"That's what Lyme Disease does. It doesn't kill you. It just takes your life away from you and holds it just out of reach."

Ashley's parents to launch Lyme Diseases network to aid those who think they might have the disease

Marty and Theresa are preparing to launch the Non-Profit Oregon Lyme Disease Network, to aid and assist in advocacy for those who believe they are suffering with Lyme or other tick-borne illnesses. Rhode Island recently passed ground-breaking legislation, and they will work to increase similar legislative backing for early detection and treatment in other states, to gain support for those who have gone beyond the early stages into Chronic Lyme Disease.

This couple is hoping to increase awareness of the disease throughout Oregon, even though many Oregon doctors seem to think there is no Lyme Disease here. The federal government's 1998-99 Morbidity and Mortality Weekly Reports, a portion of CDC, places Oregon at 21st in the nation in documented cases of Lyme Disease. But CDC states they suspect the actual cases are at least 10 times the number reported.

For anyone seeking further information, Marty and Theresa suggest the International Lyme & Associated Disease Society (www.ilads.org), Lyme Disease Assoc. (www.lymediseaseassociation.org) or Lyme Disease Network (www.lymenet.org).

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Last modified: 08/10/04