Woman describes ordeal with Lyme disease
A Bluffton-area woman says she contracted Lyme disease from a tick that provincial health officials refuse to believe is infecting Albertans within the borders of this province.
Carmen Werenka, 27, says she was bit by a tick in the backyard of her acreage three years ago.
“All of a sudden I had this round rash. I didn’t think anything of it because I didn’t get sick right away. I just had this round rash on my leg. It was a few weeks after that that I got sick,” said Werenka, who says her disease has progressed to become chronic Lyme disease.
Antibiotics should be administered promptly to halt the disease but Werenka said nobody in Alberta would treat her.
“The rash I had was dismissed as something else. I was told we don’t have it here so they didn’t want to run the test. I was just getting shuffled to different doctors.”
Her mother, a nurse in British Columbia, suspected it was Lyme disease and her family took her to San Diego, Calif., for testing and treatment with intravenous antibiotics for the first year and a half until they ran out of money.
Her family spent $80,000 for treatment, buying drugs in the U.S. and administering them back home.
Werenka said eventually an infectious disease doctor in Red Deer acknowledged her disease and five months ago she finished three months of intravenous antibiotics.
“I was 90 per cent better. I was myself. I was able to go back to work. I wasn’t in pain. I wasn’t taking any medication for symptom control — nothing.”
But within a couple of months, her symptoms returned — joint pain, swelling joints, head pressure, balance problems, searing foot pain. She is now on disability, unable to return to work as a bookkeeper.
“It’s discouraging for me. I go on antibiotics and I get better. They stop the antibiotics. Within a couple months, I start to get sick again. Infectious Disease in Red Deer says I’m not allowed to get any more antibiotics.”
Werenka may be returning to the U.S. for more treatment.
Her mother, Judy Mason, said the physical, emotional and financial toll on her daughter has been tremendous.
She said trying to get treatment for Werenka was impossible in the beginning. They had to pay out of pocket for everything.
Mason said she was so happy when the treatment in Red Deer was working. But now her daughter is in so much pain again that she can hardly walk.
“Now that they stopped the IV, she’s back to square one,” said Mason from Fort. St. John, B.C.
“It’s sad. I just wish I could make her better.”
Werenka said she has complained all the way up to Alberta Health Minister Fred Horne seeking answers and reimbursement for the U.S. treatment but has received neither.
“Nobody ever puts warnings out about Lyme disease. You don’t see bulletins from Alberta Health Services in the newspaper like you do for West Nile when people that get Lyme disease get way sicker than people who get West Nile and it’s so hard to treat,” Werenka said.
According to the Public Health Agency of Canada, most cases of Lyme disease can be cured with a two-to-four-week treatment of antibiotics. People with certain neurological or cardiac problems may require intravenous treatment. Patients diagnosed in the later stages of the disease can have persistent or recurrent symptoms requiring up to eight weeks maximum of antibiotic treatment.
Alberta Health Services says since 1998, a total of 38 Albertans have been diagnosed with Lyme disease, including six so far in 2013.
“All of these cases also have a travel history to an area outside the province where Lyme disease is known to circulate. At this point, all of our cases are travel related and are not acquired in Alberta,” said Dr. Martin Lavoie, the province’s deputy chief medical officer.
The province has been testing ticks found on pets and farm animals for the bacteria that causes Lyme disease since 2007 to track the disease.
This year, 20 ticks from animals tested positive for Lyme bacteria — 12 ticks in the Edmonton area, four ticks in the north, three in Central Alberta, one in the south and zero in the Calgary area.
Only certain ticks can carry Lyme bacteria. Of the 579 ticks found on animals, there were 118 ticks that could carry Lyme bacteria.
A new program started this year for Albertans to bring in ticks found on humans and in the environment. So far, 188 ticks of all types were brought in and six were the type of tick that could carry Lyme disease, but none had the bacteria.
“It’s marching westward and northward. So that’s why we added the new stream, to gather more information,” Lavoie said.
“We’re trying to establish what the risk of Lyme disease is in Alberta, then we’ll be able to inform Albertans.”
He said it is still believed the ticks that can carry the bacteria are transported on animals and birds coming into the province.
“We know it’s a matter of time before those ticks establish themselves and we’re probably going to start seeing some local populations of those ticks and a portion of those will be infected with the bacteria.”
But he said Alberta is prepared to deal with Lyme disease.
“We are able to diagnose it. We have all the tests that are necessary. We follow the recommendations from Health Canada and the Center for Disease Control in the States in terms of the various testing protocol.
“Common antibiotics are used to treat that so it’s easy to treat, especially when it’s identified early.”
Lavoie said some Albertans travel to the United States to get tested, but testing there doesn’t necessarily follow Alberta’s protocols and people get false positive results that could point to a number of ailments. Further testing is required.
He said some people have been very vocal and critical of Alberta’s Lyme disease protocol.
“At some point they believe they have this. They want to have a reason to explain (their symptoms). They’re not satisfied if they get a lab result or diagnosis that says it’s not Lyme disease.”
Depending on the weather, tick season will continue for a few more weeks, so it’s not too late for Albertans to bring in their ticks.
“What ticks do is wait for something to pass by and they latch onto it. It’s small in numbers at this time of year, but it’s still possible to find ticks,” Lavoie said.
To bring in ticks, contact the local Alberta Health Services environmental public health office. In Red Deer, call 403-356-6335. For more information, visit www.health.alberta.ca/health-info/lyme-disease.html.