Eleven years ago, Bella Meisner was a typical three-year-old.
She was happy, energetic, loved anything pink and her parents say she could charm a room with her bubbly personality.
“Then, one day, it all changed,” says Bella’s mother, Lisa Meisner.
“It wasn’t gradual. It was literally (just) like that.”
It first started with flu-like symptoms and screaming and crying fits, which Lisa thought was odd for the healthy and cheerful toddler.
Then came the issues with touch.
Lisa says Bella would become so incredibly agitated by the sensation of clothing touching her skin that even a 10-minute drive with her seatbelt on became impossible.
“She would scream when she had to put (clothes) on. When she was five, I remember she told me ‘Why do you make me wear things that hurt? . . . When I put (clothes) on, it feels like they are full of needles poking me all over.’”
Around the time she was nine, Bella would have up to 90 seizures a day. At one point, her mood swings were so severe she was admitted to the Garron Centre for Child and Adolescent Mental Health at the IWK children’s hospital.
“She couldn’t go to school. She couldn’t function. She hasn’t been in (a regular) class since Grade 4,” Bella’s father, Matt Meisner, says.
Now a 14-year-old, Matt and Lisa say their daughter’s condition has only gotten worse.
A suspected diagnosis
Her parents say Bella contracted Lyme disease in 2008. Since then, Bella suffers from constant mood swings, chronic ear pain, extreme exhaustion and seizures, as well as several other debilitating symptoms.
As Bella requires around-the-clock-care, Lisa had to quit her job at a call centre to care for her daughter, leaving Matt as the sole breadwinner. Bella’s ill health has also affected her education, and she’s only able to attend special education classes three times a week.
While doctors initially diagnosed Bella with autism around age seven, Matt and Lisa suspected their daughter’s worsening symptoms were indicative of Lyme disease, which they say is prevalent in the Lunenburg County area. They allege doctors refused to test her for it, and misdiagnosed her symptoms.
At one point, the Meisners were forced to enroll in parenting classes due to Bella’s behaviour, and claim doctors told them Bella’s symptoms were “all in her head.”
“I felt like the worst mother in the world,” says Lisa. “We have two other children who don’t act that way. It’s not all in her head.”
Frustrated by the lack of support from doctors, the Meisners recently ordered a testing kit from IGeneX Inc., a testing lab in California that claims it can detect Lyme disease. Bella’s results came back positive for borrelia, the bacteria commonly found in ticks that causes Lyme disease.
She has not received a positive Lyme diagnosis in Canada.
“(Her) symptoms could have been down next to nothing if she had been treated years ago,” says Matt. “She may never get better.”
Debilitating disease or pseudoscience?
There is controversy surrounding the issue of whether chronic Lyme disease is an actual medical condition or pseudoscience.
A report by the Association of Medical Microbiology and Infectious Disease Canada (AMMI) states due to Lyme disease’s similarities with other infectious diseases, individuals with undiagnosed or unclear symptoms often attribute their condition to Lyme. The report can be viewed at www.ammi.ca/Content/03.17.19%20AMMI%20Canada%20Position%20Statement%20%28EN%29.pdf.
Long-term antibiotic treatment, which chronic Lyme advocates claim can ease symptoms and rid the disease, “is of no more benefit to the patient than a placebo, (and can cause) significant adverse events,” the report states, such as severe allergic reactions.
American labs that claim to test for Lyme, such as IGeneX, are not widely recommended due to the high prevalence of false-positive results.
Earlier this year, The Chronicle-Herald reported doctors in Nova Scotia “follow the standard Infectious Diseases Society of America (IDSA) guidelines for the treatment of Lyme,” which does not support “long-term antibiotic treatment in chronic or persistent cases of Lyme.”
Due to the IDSA’s guidelines, doctors found treating patients who claim they have chronic Lyme disease are at risk of having their medical licence revoked.
Although Lisa acknowledges doctors in Nova Scotia are unable to diagnose her daughter with chronic Lyme disease, she says more needs to be done in regards to long-term testing of Lyme.
“They need to take a stand. If they take a stand for us, (not all of their) licenses can be taken away.”
The Meisners say not only are they struggling to support Bella, but they also say that they, too, have Lyme disease.
For the last several years, Matt has experienced mood swings and extreme exhaustion like his daughter, while Lisa had two strokes in recent weeks, which she attributes to the disease.
Due to Lisa’s symptoms, she was immediately treated for neurological Lyme. She received 14 days of intravenous fluids and 28 days of oral antibiotics. But since starting treatment, Lisa received two negative Enzyme-Linked Immunosorbent Assay (ELISA) tests, which detect antibodies or infectious agents in blood samples.
Although Lisa now has limited mobility, can no longer drive and has trouble speaking, she says she’s unable to receive further treatment for Lyme in Nova Scotia without a positive ELISA test.
“My oral meds (were) done Oct. 25 . . . That’s all Nova Scotia can do for me.”
Neither Lisa nor Matt have received a positive diagnosis in Canada.
Frustration in medical community
Dr. Todd Hatchette, president of AMMI, says he is sympathetic of the Meisner family’s situation.
“There's no question that they are suffering from something and the symptoms are real. It’s extremely frustrating for patients when they're looking for an answer and doctors can't give it to them.”
Hatchette says the focus in the chronic Lyme disease community on whether long-term Lyme is an actual medical condition or not should be instead shifted to alleviating patients’ symptoms.
“It’s frustrating,” Hatchette says.
“You have people who then have such disdain for the medical system, because they're not getting the answer they want.”
In recent years, people who claim to have chronic Lyme have travelled to the U.S. for treatment, as doctor protection laws in the U.S. allow doctors to treat Lyme with aggressive long-term antibiotics that follow the International Lyme and Associated Diseases Society (ILADS), although these guidelines are still not widely accepted in North America.
In August, the Meisners travelled to Albion, Maine to have Bella and Matt treated for chronic Lyme by Dr. Richard Dubocq, who told The Chronicle-Herald last year that 75 per cent of his patients become better after treatment with long-term antibiotics.
Hatchette says he can’t comment on Dubocq’s practise specifically, but says “the real tragedy is (chronic Lyme sufferers) are being directed by physicians in the U.S. that use alternative methods of diagnosis, whether it be specialty labs or basing it on purely clinical signs, and then prescribing therapies that have never been shown to work.”
And there’s a hefty cost.
“They're paying for their answer,” Hatchette says. “They don't do this in the States for free.”
In December, the Meisners will go back to Dubocq for further treatment. While the Meisners say they will have to fundraise to be able to afford their next appointment, Matt says, “It has to be done.”
The Meisners say that while it’s too early to tell if Bella’s treatment is effective, they’re hopeful their daughter’s symptoms might someday resolve.
“It’s a constant struggle,” says Lisa, “but Bella is strong.”
– The Meisner’s fundraiser is an open mic night at the Newcombville Fire Hall on Nov. 23 from 6-9 p.m.
– There will be many locals volunteering their time and talents, as well as a canteen, bake sale and silent auction table.
– All proceeds are for the medication, travel expenses to Maine and appointment cost to see the Lyme specialist.
– Anyone wishing to donate or help out in anyway is asked to contact Matt Meisner at email@example.com.