Living with Lyme disease
Lisa Tallyn, staff writer The Georgetown Independant
Keith Poullos has been sick for so long, he can't remember when his symptoms started.
But he figures it was at least 20 years ago. Over the years he's suffered severe muscle and joint pain, one urinary tract infection after another, bowel problems and fatigue so extreme that he often couldn't work.
But the brain fog has been the worst.
"The most worrisome is how your brain decides to leave you," said Poullos, an owner of Outdoor Power Equipment in Georgetown, who after years of misdiagnosis--the last one being fibromyalgia-- was finally diagnosed with Lyme disease. "Your short term memory is totally gone."
The Limehouse resident said he has been in and out of countless hospitals, had every test imaginable, and been told over and over again there was nothing wrong, and it was probably stress.
It wasn't until an Acton veterinarian walked into Poullos' Guelph St. business about a year ago and asked if he had considered Lyme disease, that he finally started on the road to recovery.
But it has been a rocky one, largely because he said the medical profession is uninformed about the disease and so few doctors will treat patients for it.
Poullos, 48, said he was fortunate to have an open-minded family doctor who when he asked, he gave him the blood test used in Canada to screen for the disease caused by bacteria transmitted through a tick bite.
It came back negative.
Disappointed because he was convinced that he had the disease, Poullos did some research on the Web through the Canadian Lyme Disease Foundation and learned that the test given in Canada had an extremely high rate of false negatives.
So after much searching, eight months ago he finally found a doctor, one of very few across the country known to treat Lyme Disease patients. He recommended Poullos take another test, one commonly used in the U.S.
Poullos spent $600 to have the test done in California, and the results showed there was a very high possibility he had the disease.
Poullos was relieved, he said, because he truly felt his suffering was caused by Lyme disease.
But the treatment, lengthy courses of high doses of antibiotics, has not been easy. Four weeks into treatment Poullos said he suffered a Jarisch-Herxheimer reaction that lasted about three weeks brought on because of all the toxins dying in his body, and he has had similar weaker reactions throughout treatment.
"You just get almost initially a total collapse, all your symptoms multiply ten-fold. You think you're dying," he said.
He said having that reaction is actually positive because it shows the treatment is working.
Poullos estimates he's about 30 per cent better than he was before he began treatment about seven months ago. He has finally been able to return to work, but he doesn't think he'll ever be truly cured.
"When it's gone to the chronic stages, symptoms are probably going to be with me forever. I'm hoping for 80 per cent. I would just be ecstatic."
After he was diagnosed, Poullos said both his sons, Thomas and Byron have also been diagnosed with Lyme disease, as has his brother John. He said Thomas did not yet have any symptoms of the disease but had the telltale bullseye rash from a tick bite, so he took him to a walk-in clinic where he said the doctor told him it wasn't Lyme disease, because "we don't have that here."
His Lyme disease doctor confirmed Thomas had the disease and immediately treated him for it.
He said he seems fine now, but "it's a wait and see game."
His other son Byron has long suffered from knee pain, fatigue and learning problems and Poullos believes he has probably had Lyme disease for 10 years. He now too is undergoing treatment for the disease.
Poullos said his 42-year-old brother is totally disabled from the disease, and his doctor has told him he's the worst case he's seen. It's not unusual for members of one family to all have the disease said Poullos.
"We've been a family that's an outdoor family all our lives." They have fished and camped together and Poullos said they have plenty of ticks, carriers of the disease, on their Limehouse property.
Poullos is angry that it took him so long to be diagnosed, and he's heard many stories from others who have had the same experience he has.
"Do you know how many times I thought I was crazy," asked Poullos.
"It has cost me years of my life fighting for a proper diagnosis, not to mention the amount of non-claimable monies that I have spent," said Poullos.
"It's a real twisted mess and you just don't know who to blame," This problem has got to be fixed right at the top," said Poullos, who has written to dozens of politicians seeking help. "We're trying to get them to educate the medical system and supply them with the proper testing," he said.
Jim Wilson, president of the Canadian Lyme Disease Foundation said the incidence of Lyme Disease in Canada is much higher than the less than 40 cases reported by each year, and is actually in the thousands.
"Within 500 miles of our border are the majority of confirmed cases in the U.S.," said Poullos. Ticks are being brought to Canada by migratory birds he said.
"The government has to work with the Canadian Lyme Disease Found-ation on a better awareness program for Canada including a surveillance program that's going to track the disease," said Wilson.
"We need to improve the testing, we need a national surveillance protocol and we need research dollars," said Wilson.
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