by Lorraine Payette, written March 27, 2012
(note: this information is still relevant and will hopefully help those who need more information)
(GANANOQUE, ONTARIO) With the unexpectedly early warm weather of the past few weeks, the insect world is in action well ahead of schedule. And with the flies, mosquitoes, and other interesting bugs, the deer tick has also once again come out of hiding.
A tiny insect, the deer tick is dark brown or black in appearance and roughly the size of the period at the end of this sentence, or the dot over the letter “i”. Its bite is seldom felt, and it latches onto its victims and sucks their blood until it has become fully engorged, after which it drops off and moves on. It doesn’t confine itself to deer, and can be found almost anywhere. It has developed a taste for many other species, including all of our domestic animals and people themselves.
The real threat is found in a strain of spirochete bacteria known as Borrelia burgdorferi, which causes Lyme disease, carried by many of these ticks.
“Lyme disease is the fastest growing infectious disease in North America,” says Wendy Aitkin, chronic Lyme disease sufferer. “Its numbers are eclipsing that of AIDS. We are all at risk. This bacteria is blood born and could be infecting our blood supply, from undiagnosed unsuspecting donors. If you have Lyme and have not been diagnosed and become pregnant, your child will be born with Lyme. Get interested, get informed, let’s stop the cycle.”
Most people tend to be ill informed about the disease. Sufferers look nothing like television’s idea of people with wild hallucinations, overnight crippling, swelling of joints, and itchy rashes all over.
One child in the former Pittsburgh Township was taken to the emergency room in the early 1990s. He had a large round red rash on his upper thigh, which was misdiagnosed as a severe bee sting allergy. His mother was given an Epi-Pen and a handful of terrifying information related to what might happen if he were ever stung again by a bee.
In 1995, that same child began to notice pain and stiffness in the back of his neck which gradually grew into an all over achiness. He became tired all the time and ran a low grade fever. His muscles often stood out in large knots under his skin. His memory became faulty, his attention span highly limited. After two or three more months, he was unable to walk the distance from the house to the road, and spent 20 out of ever 24-hours sleeping.
Over nearly a year, many doctors were consulted. None had any idea of what was wrong. He was misdiagnosed with chronic fatigue syndrome, flu, fibromyalgia. Eventually rumours started flying about abuse, sexual assault, and school avoidance. The doctors became angrier with the parent because the symptoms were “too vague” to diagnose, while the parent became more distraught as the sole care giver.
That spring, the child did the MS Walk-A-Thon in a wheelchair, and his hands were now too weak and painful to hold writing implements or cutlery. His sleeping was erratic, and he would never be up the same four hours from day to day, making it impossible to predict when he could be available for inspection by school officials, or awake to attend well intended but mis-prescribed physiotherapy at the hospitals.
The parent homeschooled him during the ordeal, fed him, and did everything imaginable to keep his spirits up. People became afraid and suspicious, other children were encouraged to avoid him. Some thought it funny to make crank calls to the family, as lack of understanding became a lack of compassion.
When the regional science fair was held in Kingston, the parent brought the child and his project down to compete. They met another parent who looked at the boy and said, “Has he been tested for Lyme disease?” It seems that this second family had an adult member who had been ill with it for more than five years before it was diagnosed, and who was now undergoing treatment.
The parent raced to the family doctor with the child and demanded testing. The doctor refused, suggesting several years of psycho-therapy as a more reasonable alternative. Undaunted, the parent immediately took the child to an emergency room in Kingston where a doctor specializing in exotic diseases not only tested him, but immediately started him on a course of doxycycline, which the family augmented with chiropractic care.
Three weeks later, the child was no longer using a cane or wheelchair, and was riding his bike to a summer job as a Leader In Training at a local day camp.
This was one of the first seven cases of Lyme disease to be diagnosed in this area, and the boy (now a man) still suffers from problems with recall and arthritis. He has also discovered that he does not now, nor did he ever, have a bee-sting allergy.
He’s one of the lucky ones. Most that are diagnosed so late do not make anywhere nearly as complete a recovery.
Aitkin has created a website with a collection of easily obtainable information. She has published her own fight with the disease and the frustration in trying to get an accurate diagnosis. She has also made available the letter she wrote to John Gerretsen, MPP Kingston and the Islands.
“I asked our MPP some questions. He said he didn’t know any of the answers so he forwarded the questions to the Honourable Deborah Matthews Minister of health and Long-Term Care,” says Aitkin.
A lot still needs to be done concerning identification and treatment of this crippling disease. Aitkin feels that Ontario must stop ignoring patients and stop using faulty methods on those who come in for testing.
“After 18 years of chronic fatigue, pain, and a fibromyalgia diagnosis, I was diagnosed with chronic Lyme disease and co-infections in November, 2009, in New York State,” says Aitkin. She received further positive diagnoses in Atlanta, Georgia; British Columbia, Canada; and another in New York State by a Lyme Literate Doctor in February of 2010. She received positive Alisa, and Western Blot Tests in Ontario, and is listed as having Lyme disease with the Ontario Ministry of Health (the law in Ontario). Although she sought treatment in Ontario after positive tests, there is no treatment for Chronic Lyme in Ontario or any of the Canadian provinces.
“I have been treated in New York State by a Lyme Literate doctor for more than two years, using the International Lyme Disease protocol, and treatment for co-infections,” she says.
Aitkin is not cured, and may never be. Her dream is to stop others from ever contracting the disease in the first place, and to get Ontario on the ball with accurate, up to date diagnostic and treatment methods.
To help protect yourself and loved ones, check your entire body regularly for ticks. Do the same with your pets. If you find one, remove it carefully and bring it immediately to your local emergency room or urgent care facility for testing. Keep it alive if possible (they may be confined in small containers such as baby food jars or film canisters). Do not use tweezers or squeeze the tick when removing it, and be sure to get to a doctor as quickly as possible. The faster a bite is attended to, the less likely the disease is to become a problem.
Wear long trousers and socks, and be sure to check your body every time you go outside. Ticks are not restricted to rural areas, and may be found on long grass, bushes and other plants in towns and subdivisions, as well as on pets or hidden in clothing.
For more useful information on Lyme disease, please check Aitkin’s site at http://lymezone.info/ , http://www.health.gov.on.ca/en/public/publications/disease/lyme.aspx, or http://www.tdc.ca/lymedisease.htm . You may also contact Aitkin at Wendy@Lymezone.ca .
Note: since preparing to post this, I have been informed that “(some) doctors are prescribing whatever they feel like for acute Lyme with EM or what they think is a clinical diagnosis – 1 high dose doxy, 2 high dose doxy, 10 days doxy, 5 days IV, and everything in between. (The writer) has seen 5 bull’s eye rashes … in the last 2 months…all incorrectly treated even by the AMMI guidelines…” Please be sure to check the links for the most up to date and pertinent information in the Gananoque-Kingston, Ontario, area as well as for photos of the ticks, rash and other necessary materials.