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.”
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.”
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.
“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.
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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Karen Henkelman says
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.
Peggy Wewiora says
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. ??
Heather Floyd says
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.
Dave Cottrell says
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!
Orlando Grisales says
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 .
Deborah Joyce says
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.
Patricia Morgan says
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.
Howard Bargman says
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
Simone Barnard says
Sadly this is how a lot of people think. What wasn’t mentioned in the article is that I had a positive blood test in Ontario for Rocky Mountain Spotted Fever, a tick borne illness that often falls under the Lyme disease umbrella. I have had many alternative tests done including testing out of Germany, which tested positive for various tick borne bacterias. Lyme is extremely common sadly, yet a very very lonely illness as many drs and professionals don’t recognize it and many doubt your illness (such as yourself). Yet my daily pain is extremely real! Suicide rates among Lyme disease patients are quite high sadly due to the lack of support. And comments like yours only make those of us suffering feel even more alone! Please research it and read stories of others suffering with the illness before spreading your doubt.
Andrew Sabean says
To Howard Bargmen. Apparently you haven’t got a clue what your talking about. I have been living with Chronic Lyme for years. I wish you could live with it for a week. You would soon change your mind. As far as Dr’s finding another cause for the misery you go through, GUESS WHAT – THEY NEVER DO.
Sharon Douglas says
I was diagnosed with Lyme disease 5 years ago and was taking Antibiotics and Nonsteroidal anti-Inflammatory drug which seemed to help. However, I still suffer from some of the symptoms. My symptoms have always been chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. I am a 54 year old female. the Antibiotics wasn’t really working and I could not tolerate them for long due to severe side effects, There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased my anxiety a bit. Our primary physician recommended me to kycuyu health clinic and their amazing Lyme treatment. My symptoms including chronic fatigue, joint pain and rash, disappeared after 4 months treatment! The herbal treatment is a sensation.. My Lyme disease is totally reversed! this is a herbal store that will be leaving it’s footprint in this world. I’m 54 and have never been this healthier
James Weiten says
Responding to Mr. Howard Bargmen, it sounds to me like you should spend a little time researching Lyme disease and it’s many co-infections, from studies and articles from around the globe, which are easily found online of all places.
This would further educate you on the very reality that not only is it reaching endemic proportions, thousands of people are not being diagnosed properly by medical professionals, or being diagnosed incorrectly and treated for a disease they do not have.
Fact: Canadian blood tests are inaccurate. Luckily, for a couple grand, one can have their blood tested in Germany.
I know what I am talking about, as I am one of those individuals, that after experiencing seizures, tremors, and a multitude of CNS symptoms, went through the brain MRI to rule out MS. Provincial blood test negative. German bloodwork positive for Lyme and several co-infections. Yeah, I have late stage Neurological Lyme. Oh, and by the way, the last tick I had on me was well over thirty years ago.
Spiro Keats says
To the dr who responded to this article, thank you for outlining the position held by many in the Canadian medical community.
To respond to some of your comments:
1. The CDC (Centre for Disease Control) has estimated that there will be 300,000 (or more) new cases of Lyme disease in the US per year. A large percentage of those cases will occur in the northeast US in the states bordering Canada i.e. Maine to Wisconsin. As we all know from Covid, disease is not limited by international borders. It does not make sense to think that those areas can be so strongly affected and Canada in the proximity to those areas is not affected. The disease is not uncommon.
2. Most drs in Canada have not seen Lyme cases as they are not trained to diagnose the disease clinically and have no idea of what they might be dealing with. The disease must be diagnosed clinically (by a Lyme literate dr) based on patient symptoms and history of possible exposure. Testing regardless of where it is done should never be used to make the diagnosis.
3. Lyme disease is very opportunistic and may affect any part of the body. This certainly makes it that much more difficult to diagnose. A broad based approach must be considered when dealing with this disease. A specialist will focus on one specific anatomical body region/structure, and that gives Lyme a huge adavantage in the battle to properly diagnose and treat it.
4. There is no doubt that long term use of antibiotics is not beneficial and indeed may be very harmful. It would be preferable to diagnose the disease accurately and treat it in its acute phase. For acute Lyme cases a relatively short term (4-6 weeks) dose of antibiotics is higly likely to successfully eradicate the disease in the patient.
5. Not all ticks may be infected with the disease. However, the risk of Lyme infection after a tick bite should not be minimized. The patient should be treated.
6. Doctors in Canada must be properly trained by Lyme literate personnel, and the misconceptions held by many in the Canadain medical community must be eliminated. An open mind is one that is willing to consider all new possbilities regardless of past experience ( not saying that experience is not beneficial…far from it). Nothing is static in this world and we must change/adapt to survive.
Tracy Farquhar says
@Howard Bargman, You pompous, misguided man! May your karma include being bitten by numerous infected ticks!
Cheryl Lee says
I have had severe joint pain and swelling especially in knees, elbows and wrists along with stiff and sore muscles. I have been diagnosed with autoimmune hepatitis (no cause determined), axonal sensory motor polyneuropathy (undetermined cause) all in the past 10 years. Most days for the past 2 years I can barely walk from the pain and unsteady gait. I have had every blood test and nerve test there is but can’t find a reason for my symptoms. I have been to a neurologist, hematologist, internal medicine and rheumatologist who can find nothing to suggest a cause for my symptoms. When I suggest Lyme and its co-infections to these doctors you barely get a response out of them. I have had blood sent to a lab in Germany and the tests came back high positive for co-infections of Bartonella Henslae, Erlichia and Rickettsia. The doctor’s response False
Positive. Where do you go from there? It seems like you are just doomed to have a poor quality of life (at least in Canada).
James Weiten says
In response to Howard Bargman,
You sir are another Lyme illiterate MD.
FACT: A majority of medical professionals are not educated regarding Lyme disease. Lyme sufferers do not believe it’s a conspiracy. It’s a sad reality.
That’s why we rely on seeking LLMD’S, or Lyme literate MD’s.
FACT: Provincial blood testing has a very high insensitivity, does not test for various strains of Borrelia, nor does it test for co-infections that often accompany a tick infection.
And, given the fact Lyme has been around for thousands of years, it’s a much bigger health threat than your comment indicates.
So you are a Lyme literate dermatologist?
“You removed the tick a she was fine”.
Yup. Maybe that tick was not carrying the bacteria.
Or, maybe, it did transmit the disease (s), and sat dormant for months or years as it has been well documented in the medical literature that it has that ability to do so.
Katherine Bhana says
Sending Prayers, after my Lyme Disease diagnosis, my rheumatologist was very open when looking at alternative medicines and procedures, with his guidance i started on Lyme disease Ayurvedic treatment from Natural Herbs Centre. The treatment worked very effectively for my Chronic Lyme, most of my severe symptoms simply vanished within the first 3 months on the treatment, i feel better now than I have felt in years and i can feel my strength again. Visit Naturalherbscentre. com Remember you are not fighting alone
Brenda Begg says
To Katherine Bhana: Should I, or anyone I know, contract Lyme Disease, I will keep this in mind. Natural remedies do work for many disorders. Of course, pharmaceutical companies aren’t on board with this. I am so happy for you that you’ve found relief. In this day and age we need to self-advocate, do a lot of research, and be open minded to alternative interventions. Unfortunately, OHIP and many health care plans don’t cover the exorbitant fees.