Your chronic disease might be tick-borne

| 23 Apr 2015 | 08:26

By Ginny Privitar
— Two years ago, Lydia, now 20, was energetic and outgoing. She was a senior in high school, an honor roll student, the president of the foreign language club, and a member of the tennis team. She worked as a babysitter and was active in her church. But then she became ill.

“She would come home from school and go to bed," said her mother, Janet, a teacher who lives in western Pike County. Doctors said Lydia had mononucleosis.

But even when Lydia “recovered,” she never got her energy back, Janet said.

Even so, Lydia thought she could begin her studies at Cornerstone University in Michigan, as planned. But she was at college for only a month when she found herself struggling to concentrate, or even read. She still suffered from extreme fatigue.

“She was always a good student who suddenly had neurological problems — confusion and difficulties with memory," said Janet.

Her legs swelled quite a bit, and hurt her, too. By Thanksgiving, Lydia told her mother that when she finished the semester, she was going to come home and not return to college until she felt better.

Back at home, Lydia went to her pediatrician, then to a rheumatologist, who diagnosed her as vitamin-D deficient and suffering from chronic fatigue syndrome.

“He treated for that, back and forth for three months and nothing changed," said Janet.

The doctor then said Lydia still had mono.

“I was beside myself," said Janet. "I didn’t know what to do next. You’re seeing your 19-year-old spending all her time in her room just sleeping. I was praying for direction.”

Then one day, Janet’s other daughter, Rebekah, texted her mother. Her friend Elsa, a physician’s assistant, could tell from reading Lydia's blog that she wasn’t herself. Elsa suggested that Lydia be tested for Lyme, even though Lydia had been tested previously and found negative.

After waiting about five weeks for an appointment, Janet took Lydia to a "Lyme-literate physician" who had contracted Lyme twice himself, prompting him to become a specialist in the disease. He used the more reliable IGeneX brand tests. Lydia’s results came back positive for three tick-borne pathogens, borrelia burgdorferi, the bacteria that causes Lyme; for babesia microti, the protozoan parasites that cause babesiosis; and for bartonella, the bacteria that causes cat scratch disease, among other ailments.

Lydia followed the doctor’s suggested dietary changes, which included removing sugar from her diet. She’s been taking probiotics and antibiotics since June. Her legs got better within a couple months, and much of her fatigue and difficulty concentrating are improving. She’s still home, and not yet back at school. Janet says they are grateful to have been directed to someone who could help.

Through Facebook, Lydia became aware of a movement called Project 300K. The group that started the movement traveled around the country, meeting people with Lyme.

“It was exciting for Lydia to meet younger people like herself with Lyme, because sometimes you can feel like you’re alone in your own little world," Janet said.

She expressed a thought many with Lyme have: “I wish people would listen.”

All in the familyMany commercial tests for Lyme aren’t always reliable. Janet said she's found useful information about Lyme and co-infections on Facebook.

“People share, and can use private messages, but there’s a lot of public information, too," she said. "You can ask questions and people will answer, for example, 'Am I the only one who has this symptom?'”

Lydia is not the only member of her family with tick-borne disease. Her brother, Joshua, 17, has just been diagnosed with Lyme.

And Janet herself got a late diagnosis after some misses. Unlike some internists, many Lyme-literate doctors believe Lyme can be transferred to the fetus in utero. Janet was diagnosed with fibromyalgia about 20 years ago, and she wonders if it was Lyme all along — and if she’s given it to her children.

Janet received the fibromyalgia diagnosis for the neck pains, joint and muscle pain, and fatigue in her arms that she suffered. She was sore for days after driving, with pain in her wrists, knees, and hips. Doctors ruled out thyroid problems and arthritis.

Janet then went to a rheumatologist, who wanted to put her on medication right away. She was in her early forties at the time and didn’t want to depend on medications for the rest of her life. She was tired by the end of the day but she could still keep working. She still gets headaches and occasionally experiences brain fog and chemical sensitivity.

A friend suggested that Janet, too, get tested for Lyme. After Lydia was diagnosed and began treatment, Janet's own blood test revealed borreila and babesia.

“I’m doing the same things Lydia is doing," said Janet. "The doctor said, 'It’s a long haul, the longer you have it. If you’ve been sick this long, it’s going to be a long time'" to recover.

Janet and Lydia belong to a Lyme and co-infections support group that meets the second Saturday of the month downstairs in the Pike County Public Library, from 10:30 a.m. to noon. The group is trying to raise awareness. They meet regularly with the Pike County Commissioners and unveiled a comprehensive education program at a recent commissioners' meeting. Call Mikki at 570-296-6002 for more information.

“There are a lot of people with chronic diseases," said Janet. "People go on and think they have something else. They need to be aware.”

On Dec. 17, New York Governor Andrew Cuomo signed the Patients Rights/Doctor Protection bill into law, which allows doctors to use effective, non-standard forms of long-term treatment on patients with Lyme and other tick-borne illnesses without fear of being charged with professional misconduct or loss of medical license, as has happened in the past. Pennsylvania residents hope for such a bill in their state.

Editor's note: This article is the second of a series about tick-borne disease, which is endemic in Pike County. As temperatures rise, the ticks that have been inactive under leaf litter all winter long are rousing themselves once again. See related story: "Daniel’s story: When Lyme goes untreated":