Child’s illness mystifies doctors

Jennifer Vardy Little
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Mom blames poor tests that failed to diagnose Lyme disease

Chelsey Livingstone and her mom, Angela Rector, organize the many pills Chelsey needs each day as she battles Lyme disease. It's a costly process that could take from one to three years. Jennifer Vardy Little – The News

SUTHERLANDS RIVER – For 8 1/2 years, Angela Rector brought her daughter to doctor after doctor, looking for answers.

Chelsey Livingstone, 11, lives in pain. She describes joints that ache so badly it keeps her up at night and a sharp pain in her stomach.

“It feels like someone’s stabbing me in my belly,” she says softly.

From the time she was a small child, she’d call out to her mother as she lay in bed at night, and in the time it took Rector to get across the hallway, she’d find Chelsey lying there, staring unresponsively at the ceiling with blue lips. Doctors thought she had epilepsy at first, but ruled that out, instead calling the nightly events “episodes.”

Doctors didn’t believe Chelsey when she said how bad the pain was, either.

“You know how they always ask how bad the pain is on a scale of one to 10? She’d say a 15, and they said that was impossible,” said Rector.

She was tested for rheumatoid arthritis, bladder infections, Crohn’s and irritable bowel, but all the possibilities were rejected. Eventually, says Rector, physicians at the IWK suggested it was all in Chelsey’s head and gave her a book on ways to cut back her stress levels.

Rector wasn’t willing to give up, however. All along, she begged the doctors to consider Lyme disease. When Chelsey was just 2 1/2, the family was living in Borden, Ont., and Rector believed her daughter had been bitten by a tick.

“We never saw the tick, but she had the classic bull’s-eye rash,” she recalls. “She’s been sick since pretty much the day it happened. She had the rash, a high fever, but the Department of Health in Ontario told us there weren’t cases of Lyme disease up there. So I assumed it was the flu – every night she’d vomit.”

She never got better. Doctors tested for Lyme disease, says Rector, but blood tests in Canada aren’t always accurate.

“Every time, I’d ask them if they were sure it wasn’t Lyme disease, they’d do the test, it would come back negative,” said Rector.

Finally, she took her daughter to local naturopath Lisa McNiven, who did the tests that officially diagnosed Chelsey last month, just two days before she turned 11.

“We’re still in shock,” says Rector. “When they told us – I couldn’t even speak, I was so mad. They could have diagnosed her a long time ago if there were better tests.”

For Chelsey, though, it was a relief to know what was happening.

“At least I know what’s wrong – I was scared,” she said.

Chelsey was immediately referred to a doctor in Port Hawkesbury who is an expert with the disease. He put her on a regime of medications – 26 different types a day, including a variety of herbs, vitamins and supplements. In just a month, it’s become second nature for her to carry around pillboxes to remind her which medications to take.

At night, she has to rub castor oil on her joints and sleep surrounded by heating pads to help ease the pain.

“It’s really, really unfortunate this has gone on so long,” said Rector. “The doctor told us he doesn’t even know if it can be fixed – he told us it could get better, it could stay the same or maybe it would get worse. He’s hoping that because she’s young, her body will be able to fight it.”

The disease has already affected her liver, pancreas, circulatory system, small intestine and short-term memory. Chelsey is usually in too much pain to do the things other kids her age do – playing outside is enough to leave her in tears.

“She’s got quite a battle ahead of her – the doctor asked her if she was willing to fight, and I know I’ll keep fighting for her,” Rector said.

Complicating things further is the fact that Chelsey is allergic to penicillin, which means the most common antibiotics can’t be used. The initial antibiotic they tried isn’t working – it stirs up the bacteria so much that it causes excruciating pain – so they’re waiting for a medicine to be shipped from the United States.

“We’re hoping this one will work better,” said Rector, adding that the $90 a bottle medicine will only last about a month. “The doctor’s told us that it’s going to get worse before it gets better. I just have to keep reminding myself that this is Chelsey’s normal now.”

Chelsey’s medications cost more than $800 a month and she has to travel to Port Hawkesbury every month to see her doctor. None of it is covered by her insurance. Normally, the treatments would last around six months, but because she’s been left undiagnosed for so long, it will take at least a year – and possibly up to three years – before she’s finished with the medical regime.

Rector’s husband has a disability and can’t work, leaving Rector, who just finished school, the only breadwinner in the house. They also have a younger son with special needs.

“It’s been tough – it seems like she’s getting a new pill every time we turn around,” Rector said. “We’ve literally had to sell stuff and borrow money from every person in our family, choose between paying the bills or getting her medicine.”

At first, said Rector, the family refused help from anyone.

“We didn’t want to bother anyone,” she said. “But everyone kept telling me this is what your community is for.”

Collection bins have been placed at various locations in the Thorburn, Sutherlands River and Merigomish area and people have been very generous.

“One bucket at the LBR had $195 in it – from people wanting to help me,” said Chelsey, her eyes sparkling. “And that was only after a few days.”

A benefit dance is also being held tonight at the Glasgow Pub, with a silent auction and 50/50 draw.

“We’re hoping to get enough to get us through the next few months,” said Rector.

She’s also hoping that Chelsey’s story will encourage other parents to take added precautions to protect their children.

Lyme disease is spread through the bite of infected ticks. If it’s caught quickly, it can be cured with antibiotics.

Although Chelsey is believed to have contracted the disease in Ontario, last year it was announced that blacklegged ticks, known for carrying Lyme disease in other parts of the province, had been found in the county – specifically in the areas around Melmerby Beach, Egerton, Kings Head and Pine Tree, while Powell Point and Thorburn are being monitored closely.

“If your child has a tick on them, take it to the hospital with them so it can be tested and get them on antibiotics right away,” she said. “If there’s Lyme disease in the tick, it will clear up. Chelsey never got put on antibiotics. I’m hoping others will be more informed and aware about Lyme disease.”

Organizations: Department of Health

Geographic location: Sutherlands River, Ontario, Port Hawkesbury Borden Canada United States Merigomish Melmerby Beach Pine Tree Powell Point

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Recent comments

  • Ingrid McAdam
    June 07, 2011 - 18:08

    It would have been to no avail to be seen by ID doc here in NS... I was bite in July 2008...had bullseye,crater,removed ticks pieces, over 60 symptoms... I cried my heart out, to my Doc. I felt like I was dying, my eyes hurt so bad I was sure I would go blind... @ 45 yrs old... I did everything the Health Canada Website stated to do... after 2 written requests the HEAD OF CDC writes back "...IF SHE IS CONVINCED SHE HAS LYME DOES SHE WANT AN OPINION" ( I think this paper should publish it) ...5 Drs later ...I finally found a Dr (2 yrs later) that listened to me... It was such a relief to be diagnosed with Lyme and Bartonella... I can hardly walk, dress myself and losing function of right has destroyed all my dreams.... the area I was in was loaded with ticks but because of a neg. Elisa the area is not endemic and more people will get bit there.... what a mess NS.... I hope your precious child can fully recover from this....

  • Kathy
    May 30, 2011 - 21:35

    for 4 years i was in pain 24/7 and the doctors up in halifax had no idea what was wrong with me like Chelsey my pain out of 10 was either 15-20 I was crying all the time. just this year in January they finally diagnosed me with Ankylosing Spondalitis and I have to get a needle every week for the rest of my life and I'm only 30. Thabk god I got accepted in pharma care you guys should try to get your daughter accepted onto that.

  • Monica
    May 29, 2011 - 09:44

    Can you not sue OHIP or specific doctor's for negligence? Thank God you were persistant.

  • Yvette
    May 29, 2011 - 04:44

    I feel this little girl should have her medicine covered considering they made a mistake in her diagnosis so many times and so many years ago. All the years of pain she has suffered. Nobody wants to see anythihg like this happen. My sympathy to the family. Brave and strong mother, Chelsea is lucky to have her and will cure as she sounds as brave and strong as her mother. xx

  • Paris Chute
    May 28, 2011 - 21:46

    My daughter age 14 has been battling this disease since she was 11. She went about 15 months with Lyme before we got a diagnosis and that was only because we fought tooth and nail to get answers. We had to travel to the US and it cost us almost 10,000 dollars to go. Our friends and family rallied together to help us cover the cost too. When we returned with positive results we found the very doctor you are speaking about and he has been treating her since. She was on IV antibiotics with a regime of vitamins for 17 months. She is still having some troubles but is much better than she was. It has cost our insurance company and the government (for VON care) we figure close to 80,000 dollars. It is insane. We got the same treatment from the Canadian doctors as Chelsey. Keep fighting Chelsey, we are rooting for you.

  • Brenda
    May 28, 2011 - 16:08

    The comment made by Laura about Lisa McNiven and her diagnosis. The majority of allopathic doctors do not accept anything a naturopath has to say. Biomeridian testing used by naturopath’s is accurate and very useful for many conditions; allergy testing being one.

  • chris powell
    May 28, 2011 - 14:57

    Thanks for the reporter & Chelsey's family for bringing awareness about lyme disease. Sadly, our daughter Nicole also suffers with lyme as well as 2 co-infections and is treated in the US. The good news for both Chelsey and Nicole is that they have a diagnosis at last. Nicole is getting better, slowly but surely. Her blog, chronicles her life with lyme. She has the most amazing attitude, courage and sense of humour. She graduated with honours from high school last June completing 11 courses in 9 months-a miracle considering her pain, short term memory loss and a myriad of other symptoms. She is also teaching piano and taking AP spanish and english courses at the moment. Angela, please feel free to contact me, via Nicole's blog if you like. Chelsey, now that you know what the problem really is, do everything you can to listen to your docs and you will get better. It is going to take time and it won't be easy but after all this time feeling crummy, I can tell you are a fighter. So go kill those lyme bacteria! and make sure you go back to your other docs and let them know what is really going on in your body. You can be their teacher! No one should have to experience what Chelsey has gone through all these years and my heart goes out to this family. Imagine if only 1 doc had really listened and taken a full history about the EM rash and done something about it years ago! Yet another story about medical ignorance and needless suffering. Shame on the naysayers about Lyme. Kudos to her treating doc. He is a giant among men for his courage.

  • Brenda
    May 28, 2011 - 09:04

    Lyme disease is a clear and present danger. It has been here longer than people think. Ticks are everywhere with areas of higher concentration. There have been people who have died as result of Lyme here in Pictou County. Misdiagnosis is very common with testing poor in Canada. I would recommend people see a naturopath/Lisa McNIven. I have chronic Lyme and went to the USA for help. I had an ID doctor and a neurologist in Halifax tell me they knew nothing about Lyme and did nothing to refer me to anyone who did. I found my own help. Education is the key. People need to know how to protect themselves from this devastating zoonotic bacterial infection.

  • Violet
    May 28, 2011 - 06:12

    The poor poor child. I had chronic pain for five years with Dr's suggeting it was in my head. A Dr. of natural medicine finally found I had heavy medal posioning. I can't imagine a small child having to suffer that kind of pain for so long. WHY WOULD A DR. EVER SUGGEST SOMEONE'S PAIN WAS IMAGINED!!!

  • Chels
    May 27, 2011 - 20:05

    Poor little girl . . . how can those doctors live with themselves? And a preventable disease if it is caught early enough. This is CRIMINAL!

  • K & M
    May 27, 2011 - 17:46

    My daughter and I and some friends camped out at Cranberry Campground last weekend. We went to the LBR for a coffee on sunday morning and thats when I saw the donation bin (which we contributed to:) for Chelsea with her story attached. My daughter goes to 4H with Chelsea. Chelsea and her mother are such beautiful people. They are always so nice. It breaks my heart that they are going through is (I had tears in my eyes the whole time I was reading the story). We will do what we can to help out. That is what the community is for, is right:)

  • Robert
    May 27, 2011 - 17:43

    Dear Mrs. Rector and Chelsey, I just wanted to let you know that both my daughters have gone through this. Lyme and its co-infections are horrific in what they can do to your body. However, that said, with treatment your child can get better. My older daughter was bed ridden for the first two years of her treatment before she was able to go to school part time/part days. Pain, seizures, hallucinations, neuropothy, insomnia, visual disturbances, exhaustion, constant blinding headaches, temperature issues that made her feel so cold that all she felt was burning,endless pills, IV therapy. These were all part of her journey. But, today, 4 years later, she is in school full time. She plays tennis 5 times a week. And, just yesterday, the child whose brain was so inflamed that she literally could not read a Get Well card, received an academic award in recognition for her scholarship. I tell you this so that you do not give up hope. There is a light if you just keep reaching for it. Good Luck!!

  • County resident
    May 27, 2011 - 17:14

    I do hope you keep pushing MSI to cover her meds, there is no reason why they can't help with the costs. When help for a condition is not available within our province they will cover the costs for treatment elsewhere. So there is no reason why they shouldn't help your family out now!!!! You really have to push them, and don't back down. Keep up the fight you are all facing and good luck! Get better soon.

  • jf
    May 27, 2011 - 17:02

    It's about time the doctors actually checked for lyme, my sister has it, and has had it for a few years. Even when requested the test for lyme the doctors basically said not lyme, and it would be a waste of money to bother with the tests. Turns out it was lyme and she may end up having life long complications because of her late treatment

  • Joe MacIntosh
    May 27, 2011 - 08:48

    I agree doctors have to get their heads out of the sand and get up to speed on this devistating disease. Several years ago NB DNR had an awareness campain to make people aware of the potential of Lymne Disease and ticks. When reviewing the information, I was shocked when reading the early symptoms "bulls eye rash and flu like symtoms". I recalled a time in 1976 when wooking in the woods of Cape Breton missing a few days of work with those very symtoms. When I was next into the family doctor, I mentioned this and asked if I should be tested for Lymne Disease. Her response was "Lymne Disease did not exist in 1976", I could have slapped her. Even though the disease was not named until later, the ticks and the underlying bacteria/virus did exist but was not identified. I was lucky and some how dodged the bullet since I did not develope Phase 2 or Phase 3 symtoms but now I am wondering if something may trigger it again as I get older, or is there something in my body chemisty that blocked it and could be used by others. I do hope that Chelsey pulls through this and goes on to a normal life.

    • Evelyn Seeton
      May 27, 2011 - 16:52

      My husband contacted Lyme (we believe) when we were in New Brunswick on vacation in the late 1980's. Doctors here in Halifax did not believe he had Lyme even though he had the telltale bullseye rash (many do not get this). He went through many years of pain, eventually becoming addicted to pain killers, had a heart attack, a stroke and died of a blood clot. Anybody who suspects they have Lyme should check into the Canadian Lyme Association. The person who started this website is a former resident of Nova Scotia.

  • Kelly
    May 27, 2011 - 08:10

    Finally. a diagnosis! We can only hope that Chelsey can overcome all of this and live a normal life. I really wish her pain would go away so she can try to be a kid.

  • Nicole
    May 27, 2011 - 07:54

    Angela, I felt sick reading this. It is so infuriating, you have told me what you have gone through and it is so unfair. It is so unfair for poor little Chelsey too, to think they would not believe her pain. I cannot imagine how angry you must be. They should be held accountable. I am so happy that Lisa has discovered the source. You now can attack the very thing that is making Chelsey's life so hard. I am here to support you always. If you need help with childcare, we can take Mitchell anytime as Cailen would love to have him. Keep your head high...the community is going to support you in all of this. Get well Chelsey. Take care.

  • Laura
    May 27, 2011 - 00:22

    Dear Mrs Rector and Chelsey..I am literally furious and thank God for Lisa McNiven for the diagnoses. Why did the other doctors not send Chelsey to the specialist???. I would think very deeply about this serious business of some Cdn doctors and their playing God. You, Chelsey have a lifetime of trying to cope with this neglect on their part. Please think about this and act accordingly.