Debilitating disease inflicts a heavy toll

Victims of Lyme disease often face a battle simply to have their condition correctly diagnosed

John Pierce of Penticton looks over the containers of the many different types of medication he has had to take over the years to combat the symptoms of Lyme disease. The family believes he contracted the illness from a tick bite he received in the Okanagan a number of years ago.

The horrific pain and debilitating conditions of Lyme disease left one Penticton woman praying for death with each day she had to endure.

In fact, her condition became so bad at one point Sandra (who asked her full name not be used) seriously considered taking her own life.

“Suicide is quite common for Lyme sufferers, and when I was at my worst — and this lasted almost two years — if it wasn’t for my family I would have,” said the woman who has made a significant recovery since she began receiving treatment in the U.S. “This is why we Lyme sufferers are so passionate about change and making sure this does not happen to others.”

Incredible fatigue, pain, dizziness and cognitive dysfunctions affecting mobility and speaking were only a few of the effects she experienced.

Compounding the physical problems at the outset was her frustration in not being diagnosed with Lyme disease, something she claimed was not done until she went to the U.S. to undergo tests.

The Penticton woman believes she contacted the disease after picking up a tick while on a local trail.

“I developed a bull’s eye (rash) but didn’t think anything of it, then I began a quick decent into debilitating illness. All the while, no doctor — nor I — connected my illness with Lyme,” said Sandra.

It was only after seeing a picture of the rash on a website she became suspicious. But even after the tests she had in Canada turned out negative, Sandra was still not convinced she did not have the disease.

Unfortunately the positive test result from the U.S. laboratory confirmed her belief, however, she says doctors in B.C. would not acknowledge those results and she was refused treatment.

She currently — at her own expense — has to travel across the border for her care.

“This should not have to happen,” said Sandra. “Chronic Lyme sufferers should be able to receive treatment in their own country.”

Seventeen-year-old John Pierce of Penticton had a very similar experience in 2008 after he began having the symptoms associated with Lyme disease after being bitten by a tick locally.

“I didn’t necessarily want to end my life but almost everyone I know (with Lyme) has considered it and I know two people who did,” said John. “I was in severe chronic pain all the time and the neurological effects were so great I couldn’t walk, at one point I couldn’t talk and for awhile I was blind.

“I was terrified. Every day I wondered if I would ever be able to talk or to see or walk again.”

His tests in B.C. turned out to be negative, however, the results were just the opposite when he went for tests in Seattle.

Although still unable to go to school full time, he has made a significant recovery and continues to go to the U.S. to get medication.

John says he has been denied further testing or treatment in B.C., adding most doctors he has seen appear to be unwilling to do anything because of what he feels is the controversial nature of the subject.

Individuals and organizations associated with the disease have long accused medical authorities in this country of not being aggressive enough about keeping an eye on tick patterns as well as poor medical management and concerns about the accuracy of diagnosis.

Due in part to this controversy, the B.C. College of Physicians and Surgeons and the Centre for Disease Control have been working together to identify problems and correct them where possible.

A report in a recent edition of the BC Medical Journal noted some doctors are not complying with regulations to report all cases of Lyme disease and there remains some confusion in diagnosing it.

Over the last few years about 10 cases are reported annually in B.C.

If a human is bitten by an infected tick, early antibiotic treatment is critical in preventing severe health problems similar to the ones Sandra and others have experienced.

For many years the ticks responsible for Lyme infection were not believed to be in the Interior — misinformation people like Sandra have fought long and hard to successfully correct.

According to medical health officer Dr. Rob Parker of Interior Health, seven cases of Lyme disease have been reported in the region since 2007.

He pointed out in at least three of those cases, travel records indicate the sufferers had visited areas where the incidence of the culprit insects was much greater.

Those figures don’t take into account the people who were diagnosed outside of the country

“We get a couple each year here,” he said. “Some years we might not get any and in other years we might get two or three.”

Parker added the infrequency of Lyme in the Interior and the similarity of the symptoms to other health problems can often make diagnosis difficult.

“Docs that are practicing medicine in areas where a disease is highly prevalent, like Lyme disease is the in the eastern seaboard of the States, get very used to,” he said. “But if you’re in a somewhat lower prevalence area like B.C., then the index of suspicion is not going to be as high.

“But we’re starting to be proactive about Lyme disease — and part of that was to increase physician awareness about it. I understand the frustration of people who have chronic symptoms that they don’t know what they’re due to and they’re looking for an answer.”

About the controversy over testing procedures in B.C. compared to the United States, the medical health officer is not convinced work in labs south of the border is any more accurate.

“What it boils down to is if a test is overly sensitive it might come out positive for Lyme disease where a person doesn’t have Lyme disease,” he said. “So if we had a more sensitive test, more specific, that would more accurately pick up Lyme disease, would that be a good idea? Yes. And is such a test out there and we just haven’t adopted it in B.C.? I don’t think so but maybe this is something that will come out of research.”

While for many of the victims of Lyme disease like Sandra the increased awareness and proactive efforts of the medical community are too late, she hopes it will help prevent others from suffering her fate.

“Nobody should have to go through this, nobody,” she said.

Health officials also warn people to be especially careful at this time year, to wear proper clothing and footwear in areas where ticks are prevalent.

Visual exams should also be done after hiking or other outdoor activities to check for signs of the insects.

 

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