The story of 5-year-old Brielle Reznik illustrates the challenges of getting help. But there is hope, too.
COLTS NECK – Brielle Reznik was an active, fun-loving toddler until she got bit by a tick.
Then her world came crashing down.
It started with leg pain. Next came staph infections, ear infections, migraines and anemia. There were fine motor delays; she couldn’t draw with crayons or cut with scissors. She also suffered seizures and bladder problems.
For two years, no one could pinpoint why.
“It’s the worst nightmare for a parent,” said Robyn Reznik, her mom. “Your child is sick, and you go to countless doctors who don’t know what’s wrong with her.”
At various junctures, Brielle was diagnosed with autism and diabetes. Twice, Robyn Reznik said, her daughter was referred to a child psychologist. But moms have good instincts and Robyn, who is a psychotherapist, kept searching for answers until she found someone who connected the dots.
It turns out Brielle has chronic Lyme disease, a condition that much of the medical establishment generally declines to acknowledge.
http://on.app.com/2eJEtJQ (News video here)
“If you have a child with Lyme disease, trying to find somebody to treat it is so, so difficult,” Reznik said. “I’ve never seen such discrimination against an illness.”
She’s not alone. The fight to recognize long-term Lyme, waged for years by advocates like the Wall-based Lyme Disease Association (LDA), is on the brink of a breakthrough. In December, Congress established a working group to examine the issue.
For now, suffering continues.
“People will often ask me to recommend a hospital to go to. There aren’t any,” said LDA president Pat Smith, who raised two children stricken by chronic Lyme. “None of them want to do anything about Lyme.”
Brielle’s story, which the Asbury Park Press verified with two different doctors and documentation of lab results, serves as a cautionary tale and — maybe — a sign of light at the tunnel’s end.
‘He saved Brielle’s life’
Lyme disease affects more than 300,000 people per year in the U.S., and New Jersey ranks second behind Pennsylvania in the number of reported cases. For many who are diagnosed promptly, the standard month-long course of antibiotics mitigates the illness. But detection is difficult, and for thousands of folks, the symptoms continue for months or years.
To date, the influential Infectious Diseases Society of America has declined to recognize chronic Lyme in its clinical practice guidelines. So sufferers are left to find a “Lyme-friendly” doctor, which is not easy.
“Doctors disagree about the long-term treatment,” said Dr. Rosario Trifiletti, a Ramsey-based pediatric neurologist who diagnosed Brielle. “That’s largely because we have lousy tests for it.”
The tick that bit Brielle, Trifilleti concluded, unleashed not only Lyme but Bartonella (a common Lyme co-infection) and PANS (pediatric acute-onset neuropsychiatric syndrome). He prescribed a long-term dose of oral antibiotics, which yielded only marginal results. So in August, he put her on 30 days of intravenous antibiotics.
“It’s made a huge difference,” Robyn Reznik said. “On day two she put her own pair of shoes on, which she had never done before.”
Brielle, who is now 5 years old, has a PICC line in her left arm. Each day, Robyn administers IV antibiotics. The treatment takes about an hour. Last week Trifiletti prescribed a second 30-day cycle, with the hope of getting the young lady attending kindergarten by mid-October.
“With the IV, she has made a complete turnaround,” Trifiletti said. “A kid like this 10 years ago would have been called autistic and would have been treated just with symptomatic medication. So this is a completely different way to look at a child who has problems like this.”
Reznik puts it more bluntly.
“He saved Brielle’s life,” she said.
A story worth telling
The backyard at the Reznik home in Colts Neck features plenty of trees. Newly invigorated, Brielle loves playing back there with her younger sister Arielle. Their parents take precautions, spraying them with tick repellent and checking their skin for bugs.
With its high concentration of woods and people, Monmouth County is a hotbed for Lyme. In New Jersey, only Morris County reported more cases in 2015. Yet Robyn Reznik said her dealings with local doctors and hospitals left her feeling like she was crazy for mentioning the condition.
“It’s gotten to the point where longtime Lyme patients, if they go into the hospital for something, many of them do not even bring their Lyme up,” the LDA’s Smith said. “This is sad and probably very dangerous. You can sort of understand it when a disease comes out; there is so much confusion that nobody knows what to do about it. But for heaven’s sake, this disease has been around for 43 years.”
Smith hopes Congress, whose interest was initiated by Rep. Chris Smith, can turn the page with a formal recognition of chronic Lyme. In the meantime, Reznik pays out of pocket for Brielle’s IV antibiotics. It’s $600 per month for the medication. Her insurer, she said, “told me by that by their standards, she doesn’t have Lyme disease.”
According to the Lyme Disease Association, 30 percent of Lyme patients are children. There are a lot of Brielles out there. That’s why Reznik is telling her story.
“I don’t want other parents to go through what we went through,” she said. “No one should have to go through that.”
The Lyme Disease Association’s annual conference takes place Sept. 23-24 in Philadelphia. It’s open to health professionals, researchers and the general public. For more information visit www.lymediseaseassociation.org.
Carino’s Corner appears Mondays in the Asbury Park Press. Contact Jerry at firstname.lastname@example.org.
Here is yet another Lyme/MSIDS patient who made a complete turn around with the use of IV antibiotics. There are many, many other such instances and yet the CDC wants to scare doctors into not using them due to five case reports of patients who didn’t do well: https://madisonarealymesupportgroup.com/2017/06/21/ilads-rebuttal-to-mmwr-article/
The MMWR article located in the above link is what the CDC/IDSA has been doing for decades – using their power to wage war against patients and the doctors who dare to treat them. And yes, this is a conspiracy of the greatest sort involving collusion, vested interests, money, power, and corruption of the deepest kind.
Recently there has been a panel discussion through Contagion Live with both sides of the Lyme disease controversy at the table. Dr. Shor, Dr. Bransfield, and advocate Pat Smith present the ILADS side while Dr. Sigal presents the CDC/IDSA side. Dr. Sigal seemingly can not fathom this “conspiracy,” and yet: https://madisonarealymesupportgroup.com/2017/09/02/lyme-disease-and-long-term-antibiotics-contagion-live/ This is the same man that is an active player and appears in journalist, Pam Weintraub’s book, Cure Unknown Inside the Lyme Epidemic. (Excellent book)
In the link I give the specific pages were Sigal is skeptical of chronic Lyme – choosing to diagnose patients with things like fibromyaliga instead, believes that Lyme isn’t a problem but that anxiety over it is, represents insurance companies and directly consults against patients for hefty fees, headed the clinical Lyme vaccine trial, and has written in publications that patients are not actually sick with Lyme but a strange psychiatric malaise.
The conspiracy is in action with many, many more Sigals out there.