Sarah Hutchinson has a great amount of advice to offer about ticks and Lyme disease as part of Lyme Disease Awareness Month.
Unfortunately, she had to learn all of it first hand.
A tick bit Hutchinson, a Canmore psychologist, likely in California, prior to 2008. She developed chronic Lyme disease, but it took a few years of living with unusual and painful symptoms that were pegged as caused by everything but Lyme disease.
Hutchinson did not have the “typical” symptoms or indicators of Lyme disease: a bull’s eye rash, arthritic and flu-like symptoms. She did have inflammation, but it moved throughout her body, appearing to doctors as sprains or tendonitis.
She is today slowly recovering, with an ongoing course of antibiotics, but for years she lived in pain and an increasing loss of mobility and ability that forced her to stop working.
“I didn’t get a bulls eye rash ever and it’s a fallacy everyone gets one and that’s something doctors need to be educated on. Only about 40 per cent get the rash,” she said, adding not everyone who develops Lyme disease gets the flu-like and arthritic symptoms either.
Lyme disease, especially chronic Lyme disease, is a complex, challenging diagnosis. It is also controversial because the information is mixed and confusing and there is an overall lack of research.
That, as a result, leads a number of people who have the disease to suffer needlessly.
“Our medical system has a rigid diagnosis; you have to have those three things right after a tick bite and that is the only time they will test you,” Hutchinson said.
“Lyme is multi-faceted and it affects all systems in the body and it can show up in a lot of different ways. Because of these questions it can be really hard to get diagnosed. It’s not very well understood and because there are questions, there’s no real answers. There’s not enough knowledge for doctors,” she said.
Lyme disease symptoms can also present neurologically, like MS, ALS or Parkinson’s, she said and there can be sound and visual sensitivity.
“It can really impact any system. It’s referred to as the great imitator because it imitates so many others.”
Alberta initiated a tick surveillance program last year to better understand if the bacteria that causes Lyme disease – B. burgdorferi – is found in ticks in Alberta.
Black-legged ticks are the main carrier and last year Dr. James Talbot, chief medical officer of health for Alberta Health, said veterinarians submitted 960 ticks found on pets and livestock to Alberta. Of those, 139 were adult blacklegged ticks. One in five of the blacklegged ticks tested positive for B. burgdorferi.
“An adult tick found later in the year could have easily flown in with migratory birds, so the fact that they’re positive for the bacteria that causes the disease proves it is continuing in Alberta,” Talbot said. “The ticks that are infected do poorly over winter so they tend to die. To prove that it is moving from one season to the next in Alberta, you’d need to get a juvenile tick, which is called a nymph.
“So if you find nymphs that are positive early in the year, that is where the danger signal would be. If they established in Alberta, that is what we are looking for.”
Alberta Health has stepped up the program, asking Albertans to send in ticks they find outside or on them and by actively collecting ticks in the Edmonton area.
“We will be looking at whether they are blacklegged ticks or whether they are positive. It’s a pilot we’re considering taking elsewhere in the province as we continue to expand our surveillance,” said Talbot.
Recognizing Lyme disease as early as possible is important, Hutchinson said, as the sooner it is caught and treated with antibiotics, it is easier to cure.
“If you catch it in later stages, even in a couple of weeks, it can become chronic and then it becomes a much harder process to treat.
“After my experience, my advice would be if you are bitten by a tick and you experience anything, get to your doctor. It’s just so easy to prevent (chronic Lyme disease).”
It is a complicated diagnosis and often other diseases need to be ruled out first, and a negative test for Lyme disease does not necessarily rule it out, as Hutchinson said it could hide from the immune system.
In so many ways, she said, having a bull’s eye rash is helpful in that it allows for a clear diagnosis.
“If you have a bull’s eye rash, that is diagnostic and not all doctors are aware of that,” Hutchinson said. “They’ll look at the bull’s eye rash and send away for testing, but in the time it takes to get your results back it can move into a later stage. If you’ve got a bull’s eye rash after a tick bite, my advice would be to really push for an antibiotic treatment.”
In Alberta, Olds-Didsbury-Three Hills MLA Bruce Rowe has been urging the government to take a more serious look at Lyme disease.
“In my hometown of Beiseker there is a young lady with Lyme disease,” he said Tuesday (May 20). She had experienced all sorts of health problems with no answer.
“She had asked her doctor to test for Lyme disease … and he said, ‘oh, no you don’t have Lyme disease. It’s definitely not Lyme disease.’”
This woman had a test done in Phoenix, AZ that came back positive for Lyme disease. She took the result to her doctor who said nothing could be done for her, as it was not a Canadian test. She then sought treatment in Phoenix that involved regular blood transfusions that ultimately cost upwards of $100,000.
Rowe has been gathering accounts from Albertans suffering from Lyme disease. He has also spoken with Lyme disease associations and plans to speak with the Alberta Medical Association and is pushing the government to take further steps.
“I’d like to get the government to initiate something, even if they refer to committee to get out and talk to the stakeholders, I’d be all for that,” he said.
In the last year, Rowe said, 13 Albertans have been diagnosed with Lyme disease.
“It’s not an epidemic,” he said. “But it literally destroys their life. If they catch it soon enough, before too much damage, they can certainly mitigate to a large extent. But doctors don’t want to address it and I don’t know why.”
Hutchinson recommends anyone who spends time outside understand how to prevent a tick bite, how to remove a tick and how to identify the symptoms of Lyme disease.
“If you’re living and playing in a community where you are outdoors a lot and ticks might be and you start to get symptoms that are a little bit strange and hard to explain, consider Lyme disease as a diagnosis. There is a lab in California that you can send blood work to. That’s what I did,” she said. The test, she added, costs about $500.
“If it’s anything weird and doctors can’t figure out what’s wrong, it’s worth getting that test,” she said.
For more information, including advice on how to prevent a tick bite, remove a tick or where to send a tick: www.health.alberta.ca/health-info/lyme-disease.html, while the Canadian Lyme Disease Foundation – www.canlyme.com – offers advice, including prevention, diagnosis and living with the disease.
The private lab in California, IGeneX, that tests for Lyme disease can be found at www.igenex.com.
Hutchinson is sharing her journey, advice and knowledge online at www.foxnsox.wordpress.com. An online fundraiser set-up to help Hutchinson with her medical bills and living expenses can be found at www.gofundme.com/tickofflyme.
