Teen's 'living death' was Lyme disease, family says
Jodie Sinnema, The Edmonton Journal Published: Friday, April 04
EDMONTON - During the worst of his illness, Ed Sperling would go into a catatonic state, standing motionless on the sidewalk for long periods before his mom would touch his shoulder or push him gently to move ahead.
At times, his body would twist strangely to stay balanced, his eyes would go unfocused and his brain couldn't make sense of letters, making reading impossible for the voracious reader and math whiz.
"This was Awakenings," said Sperling's mother, Janet, referring to the 1990 movie in which Robert De Niro portrayed a character who was catatonic until a new drug awakened him from encephalitis lethargia.
"This was a living death. His brain was there. The kid is in there, but he's locked into his body."
At first, Janet and her family thought Ed had been brain damaged in January, 2005, after a serious case of sinusitis made him vomit so violently he burst his esophagus and left him with a dangerous level of sodium in his blood.
Tests came back negative for Parkinson's disease and epilepsy. Doctors thought his catatonic state might be seizures, and Ed, then 15, couldn't walk over thresholds, a problem faced by some Parkinson's sufferers. Three tests done in Alberta also came back negative for Lyme disease, caused by bites from bacteria-infected ticks. The disease is rarely fatal in humans but brings on fatigue, fevers, headaches, severe arthritis, abnormal heart beats and other symptoms if left untreated with antibiotics.
But Janet and her husband, both entomologists who study insects at the University of Alberta, kept thinking back to their time in California where they would inspect their four sons regularly for freckle-sized ticks, some almost invisible in skin folds. Janet suspects she missed one in her son's hair.
The family has never experienced problems here, but last summer local veterinarians found 10 black-legged ticks on dogs. Two of those ticks tested positive for the bacteria that causes Lyme disease.
Alberta Health said it was the first time the western black-legged tick, most commonly associated with the disease, was found in Alberta.
The provincial health office immediately notified all physicians to be on the alert for symptoms of the disease, but no other ticks were found and no Lyme cases emerged.
John Tuckwell, spokesman for Alberta Health, said the province has set up a committee to plan a surveillance program in the Edmonton region this summer. Researchers could be out collecting ticks as the heat rises.
"We're very concerned about any disease that can affect human health," Tuckwell said. "We have never had a local case of Lyme disease in Alberta."
Between 1992 and 2006, 19 cases were reported in Alberta, but all the patients had travelled to eastern Europe or the east coasts of Canada and the United States, where ticks carrying the bacteria are common.
Despite this, Janet suspects Alberta has a growing problem and believes many local cases go undiagnosed, partly because local labs are giving out too many false negatives.
When Janet and her husband Felix sent Ed's blood down to a California lab, a positive result returned. Local doctors remained skeptical, despite Ed's continuing deterioration through 2005, Janet said. At some points, he could only have a conversation after someone caught and focused his attention.
Otherwise, his eyes remained glazed, his body movements frozen.
Several doctors said Ed was behaving erratically to get more attention or had psychiatric issues.
Not until late 2005 did a doctor reluctantly put Ed on three months of intravenous antibiotics, then six months of oral medication.
Ed, 18, is now back to his normal self, excelling in school and preparing for engineering at the U of A.
"Lyme disease (or a variant) is here and it's real," said Janet, who has spoken with many Alberta families with similar stories, even ones from northern Alberta where the Lyme-positive tick species has never been found, according to Alberta Health.
"We have endless numbers here in Edmonton and we are the tip of the iceberg. B.C. and Manitoba are way ahead of us."
Janet said Ed isn't included in any Alberta Lyme disease statistics.
He is officially undiagnosed, she said, even though California gave a positive result and the antibiotic regime cured him. That's because the provincial health office requires a blood test to come back from the laboratory with five positive indicators to define Lyme disease, Janet said.
The European standard requires only three indicators.
A study done at the Johns Hopkins University School of Medicine in Baltimore, Md., discovered blood tests positively identify only 50 per cent of people with Lyme disease.
"The tests need to change," Janet said. "We would have so many more positive results and people would get better."
Without help, Ed would have been in a nursing home -- or dead, Janet said.
"I want to make sure the next kid doesn't have the same problem."
At a recent LLMD visit the doc asked if a neuro hubby had previously seen knew anything about Lyme Disease -- we said no. The LLMD said I am sure he sees a lot of it but just doesn't recognize it.
The neuros really need to be educated about tickborne diseases.
As one neuro told hubby -- one part of the brain could not be causing his muscle rigors. That is the whole point -- a brain infection impacts all aspects of brain function including movement.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
So glad that young man was able to get the antibiotics he needed for treatment.
Great article! Thanks for posting it.
Posts: 1366 | From Southeast | Registered: Sep 2005
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I'm so glad he's doing better.
I can relate to the catatonic state, body twisted to stay balanced, and being "locked in"!
At my worst, those are my symptoms!
Thank goodness his family was there for him and never gave up!
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic