'A lot more people are going to get sick before they do something'

| 05 Jun 2015 | 01:21

By Ginny Privitar
— While in her early 20s, Robyn Wacha-Flint worked for a number of animal shelters in New Jersey, where "we were picking ticks off the animals like you’d pick seeds out of a watermelon.”

There were also plenty of fleas and mites too.

“I didn’t realize all the diseases you could get," she said.

But, at the time, she cared only about the animals, not transferable diseases. Robyn believes her illness came from a tick bite at the one of the shelters, but certainty is difficult, if not impossible. Many people don’t even realize they’ve been bitten.

Robyn started to get sick. First she suffered sciatica — nerve pain that affects the legs. Then other things started to go wrong. Her immune system wasn't working properly.

She was tested for Lyme disease several times. But she wasn't informed about two positive test results dating back to 2002-03, and she wasn't offered any treatment. In fact, she said, she didn’t discover the positive results until 2013 — after she moved to Milford, changed doctors, and transferred her medical records.

Before moving to Milford, in 2011, Robyn started to get severe migraines. She and her husband, Adam Flint, were expecting their son, Wyatt, at the time.

“I couldn’t tell what was wrong with me,” Robyn said. “The doctors kept telling me that once I had the baby, everything would be fine. I had severe migraines, vomiting, nausea, and then kidney stones that put me in the hospital.”

She couldn’t go to work at the pet store that employed her. She got laid off. She was six months pregnant.

After Wyatt’s birth, her headaches grew worse.

“I was sick and tired," Robyn said. "Not a normal tired — it wasn’t post-partum. I’ve gone to a neurologist, urologist, rheumatologist, and my regular primary physician — so many doctors — trying to figure out what was wrong.”

Robyn was still undiagnosed when she saw her cousin, a podiatrist, at a wedding. “You look awful," he told her. "You need to go to my doc.”

She got a quick appointment, but the test results took four weeks. They were stunning: she had not one but three tick-borne diseases: Lyme, the malaria-like babesiosis, and anaplasmosis.

She sees a Lyme disease specialist every four to six weeks now.

“I feel like I’m 80 years old," said Robyn, 33. "I can’t remember words, people, names. I can’t recognize words.”

She was treated with doxycycline to kill the bacteria but still felt ill. As the bacteria dies it releases toxins that Robyn’s body is unable to remove effectively.

Her doctor had a hunch. “I think you have a gene mutation," he told her.

He was right. Tests revealed that a genetic mutation blocks her ability to detoxify properly.

A family in jeopardy Robyn's husband, Adam, started to suffer from joint pain and extreme fatigue. His tests, too, came up with a triple threat: Lyme, anaplasmosis, and bartonella, which is caused by bacteria that live in the linings of blood vessels.

Their son, Wyatt, was healthy at birth but, at age 3, had his first grand mal seizure. Three days later, he had another one.

His parents took him to the Children’s Hospital of Philadelphia, where he was diagnosed with epilepsy disorder. Now 4, Wyatt is allergic to a seizure medicine he was never exposed to before.

“Why is he having all these problems?” Robyn wonders.

Did he pick up Lyme while playing outside? Or did he get it while she was pregnant?

A top neurologist told Robyn it's impossible to get Lyme in utero. But other specialists, including Dr. Ann F. Courson, dispute that. Courson belongs to the International Lyme and Associated Diseases Society (ILADS), whose members are considered "Lyme-literate" doctors.

Courson treats all kinds of chronic illnesses, not just Lyme. She says in-utero transmission happens in animals, and told the Courier that it can happen in people too.

“They’ve got their heads in the sand like ostriches," she said of doctors who deny the possibility of in-utero transmission. "What they’re saying is a lie — or they have ulterior motives.”

Lying to get testedRobyn was really worried about Wyatt.

“I had to lie to get him tested,” Robyn said. “I lied to the pediatrician and said I picked a tick off him.”

After his test last November, Robyn was told he’s “borderline.” He also saw an infectious disease specialist at the Children’s Hospital who thought Lyme was unlikely. He told Robyn to take Wyatt to an allergist because his eyes were watery. He also told Robyn that because she and her husband were sick with Lyme, they “wanted Wyatt” to have Lyme, too.

Robyn was stunned by this statement.

“I just want someone to treat him,” she said. “If both parents have Lyme, and the family dog had Lyme, isn’t it more likely that their child would have it too?”

A specialist Robyn currently sees said Wyatt’s seizures could be caused by Lyme or one of its co-infections. She wants to take her son to a pediatric Lyme specialist but, right now, money and distance are inhibiting factors.

Antibodies in her blood show that Robyn has present and past Lyme infection. She's also been diagnosed with Ménière’s Disease, which causes spontaneous episodes of vertigo. She suffers from car sickness, nausea, dizziness and swelling. In January, as she was walking down stairs holding Wyatt in her arms, she had a vertigo attack and fell down the stairs. When she gets migraines, she always gets vertigo, and the other way around too.

Robyn believes these are manifestations of the neurological damage Lyme can inflict. A Lyme specialist told her she has these other maladies because her Lyme disease went untreated for so long.

The Lyme bacteria lives everywhere: in bones, blood, muscle and bone marrow, Robyn said. Other tick-borne co-infections can lay dormant until Lyme treatment is started.

With late-stage Lyme, she said, “It’s in your central nervous system, and it affects everything. It affects your family, your friends, and nobody cares."

She said she has good days. On others, she walks with a cane.

"I push through the sickness," she said. "You suffer and don’t know what’s going on.”

Robyn says she went from being an income-earning person to one who sought assistance to make ends meet.

The power of supportRobyn is very happy to have found the Lyme disease support group in Milford.

“The power of support I never knew — it makes you feel so much better to know there’s someone you can talk to," she said. “I've had doctors say, ‘There’s nothing wrong with you.' And then you think you’re going crazy. Having docs not believe me is very sad.”

“I will speak about tick-borne illness anywhere," she said. "Just let me know where, and I will go.”

Misdiagnosis is common. Robyn was told she had fibromyalgia and also that she had cancer. So education is key, Robyn and other sufferers say. Doctors need to be educated and offer information and support to families. A veterinary student she knows said she'd be better off see a veterinarian for treatment because they know more about tick-borne illness.

Robyn has a final word of advice.

“Don’t say it can’t happen," she said.

Editor's note: This article is third in a series about tick-borne disease, which is endemic in Pike County. A study released last month by the Pennsylvania Department of Environmental Protection found a high risk of Lyme disease in every part of Pennsylvania, with the blacklegged tick for the first time present in all 67 counties.

Online"Daniel’s story: When Lyme goes untreated": http://bit.ly/1PnXCMg