And the frustrating part is that Lyme sufferers aren't just going into these longer-term treatments blindly. There are hundreds upon hundreds, if not thousands, of people who have been greatly helped by long-term antibiotics and more integrative care. Does all of that clinical evidence count for nothing?
The article is below, but here is the link to the original article. After reading it, I encourage you to check out the comments by readers below the original article. Feel free to post your opinion!
Jan 23, 2015
From cartwheels to a wheelchair in one year
A Westdale teen went from turning cartwheels to a wheelchair in a year.
Grace McWaters was a gymnast, played the violin and got good marks at school. Now, the 14-year-old forgets the names of her pets, doesn't recognize old friends and gets confused about where she lives.
Doctors are baffled. Her parents Brenda and Darryl McWaters are convinced she has Lyme disease.
"It is the scariest, most awful thing I've ever experienced in my life," says her mother. "It's like watching her disappear before my eyes."
Neurology experts tried in January to determine why she now has bouts of speaking unintelligibly. Faced with no firm diagnosis or treatment plan in Hamilton, her parents took her Thursday to a Florida clinic run by a medical doctor who uses both Western and naturopathic medicine to treat a wide variety of illnesses from Lyme disease to Alzheimer's to brain trauma to weight loss.
An online campaign and a fundraiser Friday in Westdale have raised more than $20,000 to help the family with the $5,000-a-week cost of going to the Sponaugle Wellness Institute for up to three months of treatment.
"Her health has deteriorated so fast," says her mother. "It's a devastating illness … The more I talk about this, the emotions strangle me."
Grace started Grade 8 at Dalewood Middle School in September 2013 as a healthy, active teen.
"She was lively, energetic and social kid," says her mom. "When we'd go for a walk, she'd see how many cartwheels she could do down the sidewalk. She spent two hours a day on the trampoline. She was very physically active."
The first sign of trouble was heart palpitations followed by headaches, neck pains and sore joints.
"She would be in agony," said her mom. "Her knee would swell up like a balloon."
By October, she had stomach aches and her energy plummeted. She developed sensitivity to light and noise.
"She was losing weight," said her mom. "It was a struggle to get her to drink enough water. She found it impossible to swallow anything."
Grace switched family doctors when no answers could be found. They did every test from iron deficiency to X-rays. Everything was negative.
"I was getting frantic," said her mom. "I felt sick about it … We were at the end of our rope. We had tested for everything … The symptoms kept piling up."
Her mom asked for a Lyme test after noticing Grace had a lot of the symptoms of the tick-borne disease. The result was negative.
However the tests, the ELISA followed by the Western Blot, are considered unreliable by patients and some Lyme doctors. But infectious disease experts say they're "incredibly sensitive" tests and the only ones approved by the U.S. Food and Drug Administration.
"The problem with the test is false positives not false negatives," says Dr. Michael Gardam director of infection prevention and control at Toronto's University Health Network.
The parents paid about $500 for Grace to be tested again for Lyme in the U.S. This time the test was positive.
Grace started taking antibiotics, the standard treatment for Lyme disease, under the care of a Canadian and an American doctor along with a naturopath. At first it seemed to work.
"It was like someone put the brakes on," said her mother.
Grace improved enough to start Grade 9 at Westdale Secondary School in the fall — the first time she'd attended school in nearly a year.
But long-term antibiotic use causes health issues of its own. The mainstream medical community maintains Lyme should be cured after no more than 30 days.
"We cure Lyme disease all the time," said Gardam. "People who test positive respond to treatment. It works really well. It's people who test negative who aren't responding to treatment. But than you have to ask yourself, 'Do they have Lyme disease?'"
In November, Grace started deteriorating rapidly to the point she now requires a wheelchair and is having neurological issues such as memory lapses.
"They had no explanation," said her mom. "It's like living in the 'Twilight Zone.'"
The family researched their options and settled on the clinic, which is licensed as a massage establishment with no public complaints against it. It's best known for its detox programs.
"I completely empathize," said Gardam. "I understand why they are looking for any options they can find … I really wonder about the health-care practitioners that offer these things that are so far out of the mainstream. It just makes me very uncomfortable."
But the family thinks Canadian doctors "have their heads in the sand" about Lyme.
"As soon as I mention Lyme, they shut down," said the mom. "They dismiss you and they don't take you seriously. They don't want to help you. You have to go to the U.S. It will change eventually, but not without a fight."
905-526-3349 | @Jfrketich