Living with Lyme disease: one woman’s story

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Once a vibrant and active woman, Simone Barnard now feels like a shell of the woman she used to be.

Barnard suffers from chronic Lyme disease, a disease that went misdiagnosed for nine years.

“I was misdiagnosed with fibromyalgia, depression, anxiety, cluster headaches, allergies, et cetera,” said Barnard. “Over the years I kept developing new and odd cognitive and physical symptoms, however I never put them all together. Before Lyme [disease]I was a go-go-go person. I had recently graduated university, while raising a child alone, and ran my own successful business. I was super outgoing and adventurous. I loved to hike and rarely sat still. After Lyme [disease]I was no longer able to hike, and, in fact at times, I have had to use a wheelchair. On good days now I can manage a 30-minute walk or an hour or so of errands.”

Barnard contracted Lyme disease in the summer of 2008, while living in northeastern England.

“I do not remember the tick bite, however, I did have a bulls-eye rash, which at the time I dismissed as a spider bite,” she said. “Only a small percentage of those bitten by an infected tick actually get the telltale bulls-eye rash. When I first got ill, I just thought I had come down with the world’s worst flu. I was deathly ill for three solid weeks and then after that I was almost bedridden for three months.”

Black legged tick (from left) larva, nymph, adult male, adult female (Photo: California Department of Health)

Black legged tick (from left) larva, nymph, adult male, adult female (Photo: California Department of Health)

Blood tests done in England and Canada came back negative for Lyme disease.

“It was September 2017 when my osteopath, Colleen Bush, said to me, ‘I think you may have Lyme disease.’ I immediately said, ‘No, I don’t, I have had numerous blood tests for Lyme that all came back negative.’ I had even seen an infectious disease specialist who said I didn’t have Lyme. She then mentioned that the current blood test used in Canada is known to be very inaccurate and suggested I look into Lyme [disease]more.”

Barnard said when she started researching the disease more in-depth she was blown away.

“I had every symptom and sign of the disease,” she said. “I contacted the Ontario Lyme Association and was given a list of ‘Lyme literate doctors’ in Ontario.”

Barnard was also diagnosed with Rocky Mountain spotted fever, a tick-borne bacterial illness.

“It took me months to find a Lyme-literate medical doctor who was knowledgeable and able to treat me. Many, if not most, Lyme patients have to go to the U.S. for expensive treatment, therefore I was very blessed to find a doctor in Ontario,” said Barnard. “I have also now given Lyme disease to my husband, as some of the tick-borne bacteria can be sexually transmitted. Lyme [disease]not only affects the body but it can equally affect the mind. For me the Lyme bacteria is now in my brain, organs (including most noticeably my heart) and all over. After doing a physical or mental activity both my mind and body need rest.”

Simone and her husband Jonathan (Simone Barnard / Facebook)

Simone and her husband Jonathan (Simone Barnard / Facebook)

Simone Barnard in a June 2018 photo posted to her Facebook page. She wrote: "thanks to my wheelchair (and an awesome kid who pushed their mom around) i was able to do 3 errands today!!!" (Simone Barnard / Facebook)

Simone Barnard in a June 2018 photo posted to her Facebook page. She wrote: “thanks to my wheelchair (and an awesome kid who pushed their mom around) i was able to do 3 errands today!!!” (Simone Barnard / Facebook)

Barnard talks on social media with other people suffering from Lyme disease.

“I try to raise as much awareness as possible about Lyme disease for many reasons. The main one though is the medical community is unable to properly diagnose and treat Lyme disease, therefore we need to be aware of it so we can first of all avoid tick bites where possible, and then if bitten know what steps to take,” she said.

If Lyme is treated properly while it’s acute it is curable. It’s when it moves into the chronic stage, like mine, that it becomes a life-long battle. Lyme is a very, very lonely disease. No one really knows what it’s like to fight this battle. I would do anything to be able to hike again, to be able to have my mind back so I can complete my master’s degree, to have a conversation with someone without my mind having to focus on finding the right words or thinking extra hard to comprehend what is being said.
Simone BArnard

Barnard said while the disease has changed every aspect of her life, there is a silver lining.

A partially engorged blacklegged tick female on the ear of a seven-year-old girl. Based on the size, it had been feeding for four days. (MDPI)

A partially engorged blacklegged tick female on the ear of a seven-year-old girl. Based on the size, it had been feeding for four days. (Image: mdpi.com)

“I believe all bad can be used for good, and through my experience I have not only grown immensely spiritually and emotionally, I have been able to help many others,” she said.

“I have brought awareness and even if I help only one other person not have to suffer with chronic Lyme disease by raising awareness then it is all worth it. I want people to be aware, not to scare them into never leaving the house for fear of a tick bite, to take preventative steps when outdoors. Protecting your pets and doing self-checks for ticks after being outdoors. If you find a tick on you it’s important to know how to safely remove it and how to send it off for testing. I always give the example of my brother, who lives in Pickering. He found a fully engorged tick on him last year. He removed it, sent it off for private testing and in the meantime started on a preventative dose of antibiotics. The tick tested positive for Lyme disease, however, because he started the antibiotics the day he pulled the tick off he never developed any Lyme [disease]symptoms.”

Barnard recommends the information on tick removal found at lymehope.ca.

Ontario Agency for Health Protection and Promotion (Public Health Ontario). Ontario Lyme disease map 2019: estimated risk areas. Toronto, ON: Queen’s Printer for Ontario; 2019. For more information, visit www.publichealthontario.ca.

Ontario Agency for Health Protection and Promotion (Public Health Ontario). Ontario Lyme disease map 2019: estimated risk areas. Toronto, ON: Queen’s Printer for Ontario; 2019.

The Simcoe Muskoka District Health Unit recently released some precautions to take against Lyme disease and West Nile virus, as people will be spending more time outside with the return of warmer weather.

The health unit recommends:

  • Avoiding being outdoors at dusk or dawn when mosquitoes are most active.
  • When outdoors in grassy or wooded areas, wearing light-coloured, long-sleeved shirts and pants, wearing shoes with closed toes, and tucking your pant cuffs into your socks. Light-coloured clothing makes ticks easier to see.
  • Using an insect repellent containing DEET or icaridin. Prior to using an insect repellent, make sure it is registered in Canada, read the label and follow directions. If using a spray repellent, be sure to use the product in a well-ventilated area. Apply only to exposed skin and/or clothing—never underneath clothing.
  • Eliminate potential mosquito breeding sites on your property where water can gather and become stagnant.

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8 Comments

  1. Karen Henkelman on

    Simone, thanks for sharing your story and being an advocate for getting the correct treatment for tick bites not only in Huntsville, but in Ontario and across Canada.

  2. Peggy Wewiora on

    I commend your courage to fight this disease and to make people aware. It is painful that our medical community is not grasping this information faster and with immediate change to their investigative diagnosis of ailments. Horribly sad that when kidney and heart issues appear “overnight” that the nephrologists and cardiologists don’t take this seriously. Crazy amounts of blood work are done at the critical stages to find cause including testing for Lyme with negative results.
    Heads up referring GPs and ERs this level of deteriorating life deserves more scrutiny than a basic test that has proven to be inaccurate even with a reported tick bite the previous year.
    I rant and join the cause to build awareness. It so easily can happen. We vaccinate our beloved pets. Change is needed.
    I am fortunate to have not experienced this preventable disease but I fear my beloved sister is a victim of this misdiagnosis. 2 years of agonizing therapies, failed kidneys, cardiac arrest, incomplete spinal cord injury and loss of all independence most likely started from a reported tick bite 3 years ago.
    Your brother’s experience should be the norm but without having to test privately. My understanding is veterinary clinics test for our pets. Most important is the immediate course of antibiotics to prevent major damage.
    Bless you Simone. Your story is one of the most informative and moving that I have read. 🙏🏻

  3. Heather Floyd on

    I would love to know more about her specific treatment and the doctor she found in Ontario Canada who was willing to help her out… I have Lyme, have travelled to the states and took antibiotics and herbals long term with no improvment.

  4. Thank you for sharing your story, Simone. I have been fighting this monster for more than ten years. I have a good doctor, here in BC, who has been able to keep me on my feet, but it is a constant battle.

    Never give up!

  5. Orlando Grisales on

    Hi Simone thanks for sharing your history ,is very encouraged and very good to be aware ,God bless you and I hope you get a better quality of life .

  6. Deborah Joyce on

    As a chronic Lyme sufferer, just one of HUNDREDS OF THOUSANDS, I can tell you it is absolutely real. It can be severely debilitating and FATAL. Watch the movie, Under Our Skin and read the book, Why Can’t Get Better, Unlocking the Mystery of Lyme Disease and Chronic Illnesses by Dr Richard Horowitz. Don’t deny it’s existence. I wouldn’t wish it on anyone but people who deny it, should be “blessed” with it.

  7. My bullseye rash and terrible flu-like symptoms appeared in 1989. I didn’t realize that I had Lyme disease until a family member phoned me about a Maclean’s article 6 or so years ago detailing the struggle and ensuing death of Gabe Magnotta after contracting Lyme disease. I’ve tested negative on two Elisa tests in Ontario and though the test is notoriously inaccurate, testing for antibodies for one strain of the disease, when there are many strains and co-infections, my otherwise good medical doctor says “no Lyme”, and treats me for fibromyalgia and chronic fatigue. It is reprehensible that this disease has been around since the 70’s or earlier and most doctors fail to recognize the symptoms, dismiss patient queries about Lyme, and remain blissfully unaware of the huge numbers of people contracting Lyme every year. It’s hard to live with debilitating headaches, pain, depression, gastrointestinal problems, brain fog, memory loss, etc. every day and see so little done to diagnose and treat the disease.

  8. Howard Bargman on

    I’d like to respond to a letter that was recently printed in the Doppler in which the reader outlined her experience living with Lyme disease. I have never met the writer and my opinions are not related to her but I think that it is important to correct and clarify some issues.

    Lyme disease is uncommon. After 43 years as a dermatologist, I have never seen a real case. I had one woman with an attached tick and I removed it and she did fine.

    My brother-in-law is pediatric rheumatologist at Hospital for Sick Children and he can only recall a few cases handled by him and his colleagues. He says that most cases were contacted in the United States.

    The writer mentioned nephrologists among the physicians in Canada who can’t diagnose Lyme disease. My sister is Professor of Nephrology at the University of Toronto and cannot think of a case of Lyme disease ever having involved the kidneys.

    Patients who believe that they have Lyme disease, but don’t have it, tend to follow the same mantras:

    ‘Canadian physicians can’t diagnose it properly’.
    ‘Laboratory testing in Canada is inadequate’.

    They tend to believe that there is a conspiracy and that physicians are hiding the truth about the incidence of Lyme.
    They tend to seek out physicians, mostly in the United States, who support their belief that they have Lyme, charge them a fortune, order laboratory tests from private labs and put them on long term antibiotics.

    There is no evidence that long term antibiotics are indicated and can be quite harmful.

    Patients with ‘chronic Lyme disease’ are surely suffering, only it is unlikely to be from Lyme disease because there is next to no evidence that after proper treatment, symptoms continue. Most patients are eventually diagnosed with another disease that was explained their symptoms.

    Such entrenched beliefs are common concerning medical issues such as anti-vaxxers who claim that immunizations cause autism and dental fillings with mercury causing other issues.

    References for those that are interested:
    Common Misconceptions About Lyme Disease The American Journal of Medicine March, 2013
    Perspectives on “Chronic Lyme Disease”. The American Journal of Medicine July, 2008
    Current Medical Diagnosis & Treatment. 2019 Lange series

    Howard Bargman MD, FRCPC
    Diplomate American Board of Dermatology
    Director of Laser, Dermatology, Sunnybrook Health Sciences Centre
    Certified American Board of Laser Surgery
    Certified Medical Laser Safety Officer (U.S.)
    Associate Professor of Dermatology, University of Toronto

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