It was a bite June Whitehead will never forget.
And, despite the fact the B.C. Centre For Disease Control (BCCDC) says the ticks that cause Lyme disease do not exist in the Shuswap, 36-year-old Whitehead believes otherwise – particularly after reading a recent Observer story about two Sunnybrae residents who are fighting the disease.
Late last summer, Whitehead and her husband were at Sunnybrae, on the beach near a biking trail.
“The very next day, a rash started to come on my butt and my husband said ‘what the heck is that?’” she says. “I had never had a rash so when it went away, we never thought more of it.”
About a month later, Whitehead suffered “horrible flu-like symptoms,” with swollen glands.
And so began a battle with strange symptoms and diagnoses such as fibromyalgia, thyroid problems and even perhaps a brain tumour.
“Even back then, I started having shaky legs and tremors in my hands,” she says, noting doctors sent her for several blood tests, and a CT scan, because she continued to have fever, accompanied by extreme pain in her head and neck.
Whitehead’s symptoms have worsened to include extreme vertigo and mild hallucinations.
“I feel like I am being poisoned to death but everything comes back normal,” she says, noting some doctors have privately told Whitehead she probably does have Lyme disease and started her on a course of antibiotics, while others have told her she is having anxiety attacks.
She was devastated to receive a call from her doctor Friday, with a message from the BCCDC – “the infectious disease specialist says they do not have any deer in Salmon Arm or the Okanagan with those ticks so stop taking the antibiotics and we will pursue neurology.”
Whitehead says she was at the point of giving up when she read about Sheri and Rory Mahood.
“I thought ‘Oh my god, it is not in my head.’ Without that article, I would have gone with their (doctors’) ‘go home and go to bed,’” she says. A chiropractor had told me I looked like I had Lyme disease, but the doctors said no.”
That is likely because Whitehead does not have the bull’s eye rash, thought by many to be the true test of Lyme disease.
But the Canadian Lyme Disease Foundation says the rash may vary greatly in both size and appearance.
“The most damaging myth is that all patients who have Lyme disease, or at least the large majority, get a rash of any kind,” says founder Jim Wilson, who notes the bull’s eye appears in only nine per cent of those with Lyme disease.
Wilson, who has just returned from a three-day conference in Germany, says doctors need to be better educated about the disease and the testing of both ticks and humans needs to improve as well.
He says about 20 doctors across Canada, most of whom have neither seen nor treated Lyme disease, billed themselves as experts and bought into the dogma of the U.S. Infectious Disease Society of America – a group that, for a number of reasons, including ignoring global research and citing each other, has been “pretty well disgraced.”
Wilson also takes issue with applying results of a BCCDC tick survey done in the southern part of the province to the Shuswap.
“Not only is it a totally different environment, it’s impossible to say moment from moment where it is,” Wilson says, noting the disease is spread by migratory birds who, not only carry the disease in their blood, but the ticks drop off when they’ve finished feeding, and that could be someone’s yard, a bike trail, beach, ball field.
Wilson, who contracted Lyme disease in 1991 in Nova Scotia, says he was led to believe Lyme disease was a rarity – until his daughter contracted the disease in 2001 in B.C.
“I couldn’t swallow that because what’s the likelihood of two members of one family getting a very rare disease within a decade, and 5,000 kilometres apart.
Wilson created the foundation in 2003 and, having read his research, invited Dr. Satyen Banerjee, then-head of vector-borne diseases at BCCDC, to be on the board of directors.
“In the late ’80s and ’90s they did quite a bit of surveillance and the Okanagan Valley was found to be home of ticks that cause Lyme disease as published in a 1994 BC Medical Journal,” he says. “Everything’s gone in reverse since Banerjee left.”
But the calls to the foundation from across Canada run about 2,000 to 3,000 per year, and continue to increase.
Anyone with concerns about Lyme disease can visit the foundation’s website at www.canlyme.org, or call Wilson at 250-768-0978.
Previously a busy hairdresser, Whitehead bristles at suggestions her ailment is all in her head. One doctor suggested she merely no longer wishes to work. Another told her she would only get better if she goes to counselling and takes up yoga.
Others have said they feel sorry they can’t help her and tell her to go home and rest.
“People are gonna give up,” she says of the difficulty in obtaining a Lyme disease diagnosis and treatment. “I don’t give up, I am a frickin’ fighter, but most days I can’t leave the house.”
On that note, Whitehead is now seeking help from a Lyme disease specialist on the Lower Mainland.
May is Lyme Disease Awareness Month, and local health-care professionals, politicians and the general public are invited to a special screening of Andy Abrahams Wilson’s award-winning film, Under Our Skin, at 2 p.m. Sunday, May 15 at the Salmar Classic Theatre. Admission is by donation.