Anita Kos suffered with Lyme disease for about 10 years before it was finally diagnosed in 2013 in the United States.
The 45-year-old Stoney Creek resident wishes she had those years back.
“If it had been caught early here, it wouldn’t have got to the stage it’s at now, where it robs me of any quality of life and independence,” Anita said. “It wreaks havoc on every system of my body and it’s very unpredictable, so I don’t know hour-to-hour how I’m going to feel. It’s a horrible way to live.”
According to the Canadian Lyme Disease Foundation, Lyme is a borreliosis caused by borrelia bacteria, which commonly infects woodland animals like deer or mice.
Ticks pick up the bacteria by biting infected animals and then pass it on to human hosts. There are many strains of borrelia that cause Lyme disease in humans.
There are three stages of the disease: early infection, spreading of infection and chronic Lyme. As time passes, both diagnosis and treatment become more difficult.
Symptoms worsen during each stage of infection and range from flu-like symptoms to neurological illnesses, including paralysis. With chronic Lyme, there is not one system of the body that can be unaffected.
Symptoms vary from person to person. There are more than 100 known symptoms of the disease.
Anita doesn’t know where she contracted Lyme disease.
She began getting chronic bacterial infections about nine years ago. She also started having chronic lice infections.
In 2012, Anita shaved her hair and found bite marks and rashes on her scalp.
She began to get sweaty hands and feet, on and off. She also started to experience extreme fatigue, loss of balance and memory fog.
In addition, Anita experienced swelling of her joints, ringing in her ears, blurry eyesight, sensitivity to light, noise and smell.
She was having extreme symptoms of everything, sometimes all at once, sometimes separately.
Anita turned to the Internet to find a possible answer. Her symptoms pointed to Lyme disease.
Anita said things came to a head last May, when she was taken by ambulance to hospital for extreme dizziness and a fast heartbeat.
“I felt like I was going to faint,” she said. “My heart was beating out of my chest and I thought I was going to lose consciousness. My lips were absolutely blue.”
Anita said she had to “beg” doctors to test her for Lyme disease.
“Because I hadn’t been out of the country, up north or anywhere they thought I could have contracted it, they thought it was highly unlikely that what I was experiencing was from Lyme,” she said. “They said it was probably related to anxiety and panic. You feel when you go to a hospital or to a doctor that they’re going to help you, so when they tell you that it’s probably all in your head, it’s very frustrating.”
Doctors eventually agreed to do the test.
The test came back false negative.
However, patients who test negative for Lyme here sometimes test positive for the disease in the United States.
Jim Wilson, president of the Canadian Lyme Disease Foundation, said testing in Canada is “not good enough” because it’s “too narrowly focused.”
Canada only tests for one strain of borrelia bacteria, he added.
“We know that we have many strains and species of the borrelia bacteria in Canada, so we should be enhancing the testing that will incorporate the ability to detect multiple strains and species,” he said, adding the U.S. tests for multiple strains. “It is an issue. Health Canada actually published a warning in October of 2012, in a publication called Canadian Adverse Reactions newsletter, that their tests are not capable of detecting the genetic diversity of the borrelia.”
Anita, desperate for answers, got blood work taken from a lab here and sent it to an Igenex Lab in California for “more thorough” testing.
She found out about the lab through others who had gone through the same experience as her with testing in Ontario.
Anita sent the blood work on her birthday last June. The cost was $700.
About three months later, she met with Dr. Maureen McShane in Plattsburgh, N.Y. McShane, who lives in Montreal and practises in New York, got Lyme disease in 2002 and is now in remission.
Anita said McShane has more than 700 patients, 75 per cent of them are from Ontario and suffering from Lyme.
“Dr. McShane reviewed my results and told me I had tested positive for the disease,” she said. “It was disappointing to not only find out that I have Lyme, but also learn that I have different co-infections that go along with the disease that are also serious and can make you sicker than Lyme itself.”
Through McShane, Anita began a regimen of antibiotics – the standard treatment for Lyme – probiotics and supplements. She also started seeing a naturopath back home.
A Canadian doctor didn’t write the prescription for the antibiotics, so Anita’s family had to pay more than $9,000 out of pocket.
The antibiotics, though, made Anita feel worse.
The treatment caused “grave stomach problems” and “disruption of the adrenal glands.”
“That was a hard blow,” Anita said. “For some people, that course of treatment does work. Then there are other people, like me, who it doesn’t work for.”
Anita continues to take natural supplements and probiotics.
Lyme still haunts her every day.
The bulk of Anita’s day is spent in a darkened apartment she shares with her mother Nancy, who moved in to help out last May.
Anita continues to experience extreme fatigue, loss of balance, memory fog, swelling of her joints, ringing in her ears, blurry eyesight, sensitivity to light, noise and smell. She also has very limited mobility.
“I feel trapped,” Anita said. “I feel like I’m in jail. I just have no peace.”
Nancy said seeing your child in pain constantly is devastating to any parent.
She’s hoping that an upcoming trip to the Sponaugle Wellness Institute in Florida will help ease her daughter’s pain.
The centre specializes in chronic Lyme and co-infections.
“They take 35 vials of blood, they sent it out for 600 panels of testing and they do urine tests and brain scans, so they’re very thorough,” Nancy said, adding it takes two weeks for the results to come back. “Then you start IV trips every day and they’re concoctions of different things based on what you need. There’s a doctor and registered nurse on site, so you’re monitored the entire time.”
It’s a costly trip, though, almost $4,000 a week.
Nancy said because Anita’s Lyme disease is so advanced, weeks of treatment could turn into months.
“I don’t know if it’s going to work for her, but it’s the only ray of hope that I have,” she said. “It’s been a physical and emotional roller-coaster ride for Anita, along with so many others who are suffering from Lyme in Ontario and can’t get the diagnosis and treatment that they need because testing for the disease is not good enough here. No one should have to go on that ride, it’s just not right or fair.”
Anita Kos – Lyme disease treatment fundraiser
Family and friends are holding a charity event in support of Kos’ upcoming trip to the Sponaugle Wellness Institute in Florida.
The fundraiser will take place Friday, April 11 from 8 p.m. to 1 a.m. at the Knights of Columbus Hall, 222 Queenston Rd.
For tickets or more information on how you can help, call Frances at 905-388-0103 or Nancy at 905-662-6904.