Sask.'s invisible struggle with Lyme disease

When it comes to Lyme disease in Saskatchewan, those who suffer from it appear to be invisible when it comes to cases reported to the public. Those who do have it live in anguish, like one man who was in so much pain he couldn’t get out of bed, or one woman who was left too weak to hold her newborn son.

Every spring, the province comes out with warnings about mosquitoes and ticks, telling you about diseases like West Nile and Lyme. When it comes to Lyme disease, the province says only three people in the past 10 years have been diagnosed with Lyme, and two of them contracted it out of province.

But there’s more to the story. There are at least four people in Saskatchewan who have been diagnosed with Lyme disease, in one way or another, who all say they were bitten in the province. None of them are included in that number the province cites every year. And because of how the province compiles their numbers, no one knows how many people have been diagnosed with Lyme disease in Saskatchewan.

Living with Lyme

Darryl Prentice calls it the worst pain of his life. Sitting in his kitchen, talking about the progression of his disease, his face still filled with disbelief.

Prentice believes he contracted Lyme disease in the 1980s while hunting. Over the next 15 years, he would get swollen joints, fevers, and headaches from time-to-time. Doctors would run tests, treat him for things like gout, cellulitis, and viruses without much success.

Then in 2010, everything came to a head.

“I started getting knee pain … and within a week, I was bedridden, like could not bend my knees. The pain was excruciating, terrible pain,” Prentice described.

He would go to the hospital for tests, once having to take an ambulance because he couldn’t bend his legs to get into a vehicle. Doctors were still coming up with nothing. Prentice was bedridden for a month, unable to move around without crutches. He lost about 30 pounds that month.

“There was a point I thought I’d never walk again.”

“There was a point I thought I’d never walk again.” – Darryl Prentice.

That’s when his wife Charlotte came across Lyme disease while Googling his symptoms online. She took it to his doctor.

“Our doctor said (Darryl) definitely has all symptoms, all the reactions of what Lyme would do,” said Charlotte.

The test for Lyme came back inconclusive. They later found out the wrong test was ordered. Regardless, Prentice began treatment. He took liquid silver and an intense course of antibiotics. Soon he was able to walk again.

Prentice has been diagnosed with chronic Lyme, meaning he will continue having symptoms for the rest of his life.

Prentice isn’t included in the numbers the province gives out at the beginning of every season because his test came back inconclusive.

When the government of Saskatchewan says three people in the last 10 years have been diagnosed with Lyme disease in the province, it’s referring to those who fit the narrow criteria for reporting to Health Canada: those who have a positive laboratory test, or those with laboratory evidence and who have been to an endemic area, which Saskatchewan is not considered.

Advocates for those with the disease have some problems with this. For one, they say the tests used in Canada aren’t effective enough.

“There’s been a lot of misinformation that has been funneled back to our doctors, so they’re overly confident in our blood test, which is an antibody test, and it has a high rate of false-negatives,” said Jim Wilson with the Canadian Lyme Disease Foundation.

He explained the test only looks at one strain of Lyme disease, when there are as many as 100 strains out there, which can localize over time.

The test also may not detect the disease if it is run too quickly after the patient is infected, as the body may not have produced the antibodies yet.

Health Canada warned about these issues in 2012. In a newsletter, it said that the currently-available kits have limitations of “sensitivity and specificity”. A study mentioned in the newsletter found the sensitivity of the two-tiered approach was as low as 38 per cent in some cases, and 68 per cent in some others. Chronic cases were more likely to be detected, at 87 and 97 per cent.

The newsletter went on to say that the test should not be used to make diagnostic or treatment decisions, and that a negative result did not necessarily exclude Lyme disease.

However, Saskatchewan’s Chief Medical Health Officer is very confident in the tests.

“Every test has a certain rate of false positives and false negatives. So obviously, there is that discussion that there could be further refinements, to miss rare instances where a Lyme disease test is negative and it is due to a different strain of Lyme disease. But, currently in North America, the current two-step test is the one that’s considered the standard test to diagnose lyme disease from a laboratory perspective,” said Dr. Saqib Shahab.

Shahab explained that if many tests in Saskatchewan were also coming back positive, then it would be more likely that the negative results were false negatives.

The Wrong Test

Tara Hunter said she was bit in summer 2009 while she was pregnant. She found the tick between her toes and had the bull’s-eye rash.

Hunter said she went to two different doctors, who put it off as just a tick bite. Soon after, she began getting very sick. The doctors she went to told her they were just pregnancy symptoms.

The problems continued after she had her son. Hunter said she began having dizzy spells, numbness in her extremities, and the left side of her face was drooping. She lost 60 pounds in four months.

“From there, it just sort of kept getting worse until I lost … I couldn’t move. I couldn’t move my legs, and I had to sort of crawl around my home.”

“I couldn’t move. I couldn’t move my legs.” – Tara Hunter.

She went to doctors, but they told her she had postpartum depression.

“I would go in there with my baby and then they would look at me and just say, ‘oh you’re just tired. you just have a new baby.’ And I was getting to the point where I couldn’t – I would run into walls. I had no balance. I’d have to grab onto things, it was like my brain wasn’t sending the right message to my legs to say ‘hey you ‘gotta walk here.'”

Finally, one doctor in Wynyard mentioned the possibility of Lyme. However, the tests came back negative.

Hunter kept looking into Lyme disease and found a company in the U.S. which runs a different test than the one done in Canada, so she made an appointment.

That test came back positive for Lyme. She began treatment with antibiotics and liquid silver. Now, she’s doing better. Hunter is able to walk, has gone back to work, and played hockey last winter for the first time in several years.

Like Prentice, Hunter isn’t included in the numbers the province quotes.

Some advocates say tests done by private facilities in the U.S. are more sensitive because they look for more strains of the bacteria that cause Lyme disease. The Canadian Lyme Disease Foundation website said the iGenex Inc. laboratory is the only one it knows of that uses a human-derived strain, which it says could be why more people are getting well after an iGenex test and aggresive treatment.

But, Shahab explained positive one-step tests aren’t counted in the province’s numbers.

“There is some concern that there are certain tests that are available, primarily in the U.S., that are not recommended by the U.S. Centers for Disease Control, where there’s a high false-positive rate.”

The testing centre, iGenex, declined to comment for this story.

Shahab said it would be inappropriate for the province to report a case without a laboratory confirmation, because they don’t for sure know it is Lyme.

“Clinically, it may be appropriate to diagnose Lyme as one of the possibilities and potentially treat, but we have to, you know, use a certain criteria to report so that we’re consistent,” said Shahab.

If numbers given to Health Canada from every province aren’t based on the same factors, then they’re almost useless in keeping track and studying the disease.  

There is a second layer of reporting for “probable cases” of Lyme disease, but it also requires a positive laboratory test. Shahab said under the Health Canada definition, he doesn’t know of any probable cases in Saskatchewan.

According to the Ministry of Health, the province doesn’t collect information on how many people are clinically diagnosed and treated for Lyme disease without a confirmatory laboratory test. Shahab said, in those cases, doctors should report it to the local medical health officer. But, at least one medical health officer with the Saskatoon Health Region said doctors aren’t required to. So there are no numbers on how many people have been diagnosed with Lyme disease in Saskatchewan, just those who meet the Health Canada reporting criteria.

Invisible Patients

The key to dealing with Lyme disease is early detection. If the disease is caught early enough it can be cured, but if a person lives with it for too long, it becomes chronic, and even with treatment, the patient will live with symptoms for the rest of their lives. Part of detection is awareness on the part of both patients and doctors.

The province maintains there is very little risk to contracting Lyme disease in Saskatchewan, and it seems the doctors here do as well.

Everyone spoken to for this article talked about having to research Lyme disease themselves, and encountering resistance from doctors.

“This doctor said there’s no chance that it could be Lyme disease, there’s no such thing in Saskatchewan whatsoever. This is not Lyme,” said Charlotte Prentice, of one doctor they saw in 2010.

Hunter found a doctor who said he thought she might have Lyme, but refused to treat her for it.

“He didn’t want to risk treating me because if, after three weeks of antibiotics, if I wasn’t better then they would come back and say ‘if she hasn’t improved then she doesn’t have Lyme disease.'”

In an email, the Ministry of Health said, “physicians need to make clinical decisions about managing and treating their patients independent of the criteria and processes for reporting of notifiable diseases.”

Shahab claims doctors’ awareness is getting higher for the disease, that more and more tests are being sent away every year. Twelve hundred tests were done last year.