Teen puts hope in U.S. Lyme disease treatment
She takes few steps towards the camera. As wobbly, as unsure, as unsteady as a baby’s precarious first steps. As awkward as a drunk stumbling out of the bar.
Her arms hang limp. Her face, a blank stare.
This is what has become of 14-year-old Kamea Crowe.
Her mother, Yvonne Finlayson, recorded the few seconds of video three weeks ago. Mom and daughter have been in Florida since April, hanging their hopes on an unconventional treatment for a disease that has turned an energetic girl into a teenager too weak to run and play.
Although many Canadian doctors are unconvinced, her family believes Kamea has Lyme disease. An infection caused by a bacteria carried by blacklegged ticks.
Kamea does not remember being bitten by a tick. And she never noticed the telltale bull’s-eye circles of infection.
What they do know is this: life changed for Kamea the day she spiked a fever in December 2009. She was 10.
The extreme fatigue that followed, they assumed was the flu. Only, it never went away.
The little red-headed kid who trained 17 hours a week as a competitive provincial-level gymnast, who played basketball at school and with the CYO Rebels, could barely keep herself awake at school. There were times when her Dalewood School teacher had to wake her up, asleep at her desk. At its worst, she’d go to school for a couple days, then need a day at home to recuperate, Yvonne says.
And then there was the pain. It travelled around her body, from joint to joint. Ankles. Knees. Hips.
One night, her mother, a registered massage therapist, had to carry her from the car into their St. Catharines home.
“She was screaming, she was in so much pain,” she says.
“I’d take her to bed and lie with her until she cried herself to sleep.”
Kamea describes it like this: “My arms and legs feel heavy, like after a workout.”
At times, she needs a wheelchair.
Just as painful was finding a diagnosis. There were many. Strep throat. Depression. Migratory polyarthritis. Mononucleosis. Chronic pain. Stress.
There seemed to be a different medical opinion from each specialist that saw her. From pediatrician to neuromuscular specialist, from pediatric rheumatologist to cardiologist to infectious disease specialist.
Kamea tested positive for Lyme disease twice at U.S. labs, as recent as April. Her one Canadian test was negative.
Her family just wants their little girl back.
They are holding a fundraiser for Kamea’s treatments in the U.S., which could run upwards of $50,000, on Saturday, June 22, at the Polish Legion on Vine St. A family member has donated $25,000. The Toyota plants in Cambridge and Woodstock where Kamea’s father, Doug Crowe, works, collected just over $18,000.
Kamea finishes her final treatment the day before the fundraiser, and Yvonne is determined to do the 22-hour drive and make it to the event.
Indeed, her treatment is both complicated and unconventional.
In Canada, the norm is 2-4 weeks of antibiotics if caught early.
The medical community is skeptical of “chronic Lyme disease” and the success of longterm antibiotic treatment, says Stephane Shank, spokesman with the Public Health Agency of Canada.
In fact, the National Institute of Allergy and Infectious Diseases states that more antibiotic therapy in not helpful, and can even be dangerous, for people who have non-specific symptoms (like fatigue and pain) after being treated for Lyme disease, and who have no evidence of active infection.
So, where does that leave Kamea?
In Florida, in the care of Dr. Rick Sponaugle at the Sponaugle Wellness Institute.
She did the antibiotic treatment in Canada without improvement.
Sponaugle has a different take. He believes the bacteria is hiding inside cells — not floating around in the bloodstream. The bacteria is protected by a “biofilm” layer, keeping the Lyme disease safe from antibiotics.
Treatment involves breaking down that shield, as well as optimizing brain function to repair a broken immune system.
“Lyme disease is a multiple organ, multiple system disease,” he says.
Five days a week, Kamea is treated with various IV blends. She has not, as yet, experienced any noticeable improvement. They’ve been told that it takes time and will likely happen when she returns home, Yvonne says.
“I’ve seen people get better,” she says.
“This is the best place for her.”
Besides, their options are few.
“It’s not fair to watch your kid suffer,” she says.
Yvonne is crying. Kamea, as usual, keeps a smile.
“To go from being so active. So much energy, to nothing?
“You want the best for your kid,” says Yvonne.
“That wasn’t going to happen without treatment.
“This is the only answer we have right now.”
FUNDRAISER FOR KAMEA CROWE
What: A fundraiser for 14-year-old Kamea Crowe who is in Florida being treated for Lyme disease.
When: Saturday, June 22, 6:30 p.m. to 1 a.m.
Where: Polish Legion, 294 Vine St.
Tickets: $5 at the door.
Details: Food, and live entertainment by The Brant Parker Band.
More: People can also donate to TD Canada Trust bank account No. 261-6406160 anywhere in Canada. In St. Catharines, you can donate at the Lake/Lakeshore branch.
Lyme disease in Niagara
FACTS ON LYME DISEASE IN NIAGARA
Some facts from Peter Jekel, manager environmental health, Niagara Region Public Health.
- To date this year, more than 450 ticks have been handed in to public health.
- Of those, 15 were the blacklegged variety, the type that can carry the bacteria that causes Lyme disease.
- Of those, one tick tested positive for Lyme. It came from Welland and was found on a dog.
- Last year, there were 685 ticks handed in. There are more ticks found so far this year, likely due to the cooler spring. Ticks don’t like hot weather and tend to lay low.
- Ticks are carried by migratory birds, and can drop off anywhere.
PROTECT YOURSELF FROM TICK BITES
- Dress in light coloured clothing to easily spot ticks
- Wear clothing that covers arms and legs when walking in wooded areas. Tuck in loose clothing and have your child wear shoes that cover the entire foot.
- Spray insect repellent that contains DEET on exposed skin and clothing. Always follow manufacturer’s instructions
- Check yourself and your child’s skin for ticks after outdoor activity. Pay special attention to areas such as the groin, scalp and armpits. Tick bites are usually painless, so you will likely not feel the tick.
- Cut your grass and dispose of leaf litter where ticks can live.
Source: Niagara Public Health
IF YOU FIND A TICK ON YOU ...
Report it to Niagara Public Health by:
- Placing the tick in a screw top bottle
- Bringing the tick to Public Health to be identified:
Niagara Region headquarters, Campbell East Reception
2201 St. David’s Rd., Thorold
(across from Brock University)
- For further information, call Environmental Health at 905-688-8248, ext. 7767 or 1-888-505-6074.
FOR MORE INFORMATION VISIT:
Niagara Public Health at: www.niagararegion.ca/living/health_wellness/disease-prevent/lyme-disease.aspx
Public Health Agency of Canada at: www.phac-aspc.gc.ca/id-mi/lyme-fs-eng.php#s4
