Oil & Gas
"I wouldn't wish this on anybody"
- Details
- Category: Oil & Gas
- Written by Stephen Marsters
Two parents speak up about how Lyme disease has affected their son
Make a list of the things that aren’t right or don’t seem fair and then try this on.
Imagine being told your son may have a rare disease that is usually fatal within months; imagine travelling thousands of miles outside your own country for medical treatment because doctors in Canada are afraid they’ll lose their licence if they help you; or, imagine being sick — so sick you can barely get out of bed — but having professionals tell you that “we can’t find what is making him sick.”
For Paul Hansen* and his family, that list was made and lived through. Paul has Lyme disease and, like others with the disease, this is what they face every day.
LIST ONE: “WHAT’S WRONG WITH ME”…SEEKING ANSWERS…SPIRALLING DOWN
In February 2009, while on the job as a well operator in the oil and gas industry, Paul suddenly had the sense he was in trouble. He’d later tell his parents, Rick and Mary, that he was having problems breathing and that he felt like he was having an out-of-body experience, like he was falling through the earth. “He called a colleague at work and said, ‘I’m in trouble here — can you come and get me to a hospital,’” recounts Mary.
What ensued was a five-month quest to uncover the cause of Paul’s symptoms, a search that led them to over a dozen doctors while their son became sicker and sicker.
“He was going downhill all the time,” says Mary. “He couldn’t get out of bed for four to five months. He wore earplugs, sunglasses, a ball cap — he couldn’t stand light or noise and couldn’t have more than one person in the room with him.”
THREE KEY POINTS TO PONDER
1. When working outdoors, it’s easier to see ticks if you wear light-colour clothes.
2. A bull’s-eye rash may only occur in about 10 per cent of cases. The disease can affect a number of body systems.
3. Wilson says many Lyme patients are first wrongly diagnosed with other illnesses, including multiple sclerosis or neurological diseases such as Parkinson’s.
LIST TWO: LYME DISEASE…SYMPTOMS
Lyme disease is caused by the bacterium Borrelia burgdorferi and transmitted by certain species of ticks. The disease is named after Lyme, Connecticut, where the first outbreak in humans in North America was recognized in 1975.
At least three species of Lyme-disease carrying ticks have been found in Alberta, says Jim Wilson, president and founder of the Canadian Lyme Disease Foundation. A victim of Lyme disease, he has been involved in networking with Lyme victims and providing information for over 10 years.
For most Canadians, the risk of exposure to Lyme disease is fairly low. But the risk is higher if you spend a lot of time outdoors.
In nine per cent of cases, people who contract the disease get a very distinct red circular rash starting at the tick bite site and spreading outwards, says Wilson. The centre of the rash may clear as it enlarges while retaining a darker outer edge, resulting in a bull’s-eye appearance. Some people will get a less distinguishable rash that is often not recognized as Lyme disease, and many others will get no rash at all.
“If you were ‘lucky’ enough to come down in July with flu-like symptoms, well, that should be another real trigger for doctors,” Wilson says. “People generally don’t get flu in the summer. But not everybody gets those initial flu-like symptoms. I had the weird rash show up, but no flu-like symptoms.”
Another trigger for doctors should be patients who have a series of seemingly unrelated symptoms, says Wilson, noting the disease is multi-systemic (affecting the brain and the central nervous, cardiovascular, digestive and respiratory systems, among others).
“It sounds odd for a patient to come in and say his brain doesn’t seem to work right, and his joints are sore, and he has no energy, his bowels are messed up and he has spots in front of his eyes. Those are all relatively disconnected. But yet that in itself should be an indicator for the doctors that the patient needs to be tested for Lyme disease.”
LIST THREE: FINDING ANSWERS…THE TESTING QUANDARY
For Paul, finding out he had Lyme disease came five months after his initial symptoms.
“Everybody could tell us what it wasn’t; nobody could tell us what it was,” says Paul’s mother, Mary. “Then they checked into another diagnosis, a progressive form of encephalopathy that apparently has no cure. It’s fatal within six months. It was shocking. It was devastating.”
Paul was tested for that, and the results came back negative.
“That was good news, but we still didn’t know what it was,” says Paul’s father, who adds that during this four- to five-month period he and his wife were telling friends and family about Paul’s condition.
“We had appointments booked at the Mayo Clinic and then there happened to be a documentary on television that different relatives and friends had watched — coincidentally — at the same time,” says Rick. “Two or three phoned us and said, ‘I wonder if Paul has Lyme disease?’”
Paul was subsequently tested in Canada for Lyme disease. His parents also had him tested in the United States, at their own expense.
“The test from Canada came back negative; the test from the States came back positive,” says Mary. “We went a step further and did a PCR test [polymerase chain reaction test, which checks for the disease in a patient’s DNA]. That came back positive from the States as well.”
Both Wilson and Paul’s parents are critical of the Canadian tests for Lyme disease.
Wilson says many people with Lyme do not test positive for the disease with the common ELISA blood test — short for enzyme-linked immunosorbent assay, which measures for antibodies to Lyme disease. “If you don’t test positive on that you don’t get the next test, which is a more specific Western blot test.
“We want the ELISA test dumped as a screening test altogether. We would like multiple testing being done. We want the C6 peptide test, which is a form of the ELISA, but a more accurate form, combined with a Western blot, but the Western blot has to include in its testing the biomarkers that are specific to this organism.”
Paul’s parents also believe that testing in Canada only goes so far, and that people may be getting false negatives. They say their son was denied the opportunity to take the Western blot test, even though they offered to pay for it themselves.
“That’s a message at the end of the day for anyone out there who may be dealing with this,” says Rick. “The testing [in Canada] isn’t that good. The tests need to be as sensitive as the ones in the U.S.”
Wilson says 2,000 to 2,500 people a year that come through the Canadian Lyme Disease Foundation test positive for Lyme disease, “once they get the better testing done. And we think we’re only getting a few of the total number infected. The likelihood that Lyme disease is under-diagnosed in Canada is extremely high.”
LIST FOUR: TREATMENT…ADVICE FOR PARENTS…ADVICE FOR PATIENTS
For many people with Lyme, positive confirmation that they have the disease comes at the end of a lengthy and emotionally draining process of winding their way through a medical system that, by and large, still offers little support to those suffering from the disease.
Wilson says many doctors in Canada are afraid to talk about Lyme disease, noting some have been forced to give up their practice due to repeated questioning by their provincial licensing bodies about their treatment of Lyme disease patients.
That treatment usually involves patients taking high doses of antibiotics — sometimes administered intravenously — over a long period of time. “I’m on the far end of treatment time,” says Wilson. “I was on [antibiotics] for eight years. Every time I stopped I relapsed, until we finally got it. [Treatment time] really depends on where the organism has sequestered in your body.
“It’s complex all the way along. It’s hard to diagnose, it’s hard to treat and it’s hard to eradicate. In fact, to this day, I don’t say I’m cured. And I’ve relapsed once in the last eight years that I’ve been off antibiotics.”
Wilson says other doctors just don’t have all the information they need about the disease, and often become frustrated with patients they can’t diagnose. “Finally they tell you it’s all in your head. Well, how do I make my liver or lymph nodes swell?”
Paul’s parents say they have dealt with medical professionals with a wide range of knowledge on Lyme disease. Says Rick: “We’ve hit all phases of doctors — from ones that say there’s no such thing as Lyme disease in Canada to others that say, ‘I know there’s Lyme disease,’ but they’re not going to treat it because they’re scared of losing their licence, to anywhere in between, including ones who say they don’t know a lot about Lyme disease, ‘So you’re best where you are.’”
PLAYERS ON THE STAGE
1. Canadian Lyme Disease Foundation: www.canlyme.com. The foundation’s website has more information on symptoms, diagnosis and treatment.
GOING BROADER, DEEPER
1. To watch the 2008 documentary, Under Our Skin, contact www.underourskin.com.
2. Lyme Action Group: www.lymeactiongroup.blogspot.com.
Paul flies from Calgary to Seattle to see a doctor and receive treatment. Almost all of that doctor’s practice is devoted to treating Lyme disease patients, with a large number travelling there from Canada’s western provinces.
“I went down with Paul in June,” says Mary. “They commented at customs at 8 a.m. that we were the third ones from Calgary going through for treatments. This is wrong. Lyme disease is real. It is in Canada. It has to be at a place where the doctors know to look for it, know to test for it, know how to treat it. That’s where it should be.”
LIST FIVE: OIL AND GAS INDUSTRY AWARENESS…RECOVERY
Paul’s job was to optimize flow at gas plants and substations. He was out in the field a lot, but that describes thousands of people in the oilpatch. Paul’s parents aren’t sure where he caught Lyme disease, and are quick to point out that besides his work in the patch, he is also a hunter, fisherman and quadder.
And while they don’t blame his employer, they do believe that oil and gas companies should increase their awareness of the disease.
“Health and safety is critical in the oilpatch,” says Rick. “People lose their jobs if they don’t follow protocols. But I’m not sure there’d be a health and safety manual anywhere that might deal with ticks. Maybe it’s just a one-pager in a manual that says what to do if you’re ever bitten by a tick.”
Wilson agrees that education is the key. “And you don’t need to do that with fear-mongering. People don’t need to stay indoors, they just need the information.”
Stacey Ballash, an executive assistant who has worked in the oil and gas industry for over 16 years, says Lyme disease is “not on the radar at all” in the oilpatch.
“All the companies I’ve been at have excellent safety handbooks and excellent safety coordinators, yet not one has ever mentioned Lyme disease,” she says. “It’s very worrisome, because of the number of field workers out there compared to office workers; it’s a 10:1 ratio. They’re the sweat, blood and tears of the company — and we need to take care of our people, and they don’t know because we don’t know.”
As for Paul, his parents say he’s on the right road, but recovery has been slow and he’s had many tough days. He tried to go back to work part-time but was still too sick.
“He’s having more good days now,” says Mary, “but I wouldn’t wish this on anybody. It’s horrible, horrible, horrible.”
(*Names changed at the request of the family.)
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