By Guest Writer Joanna Petrakis
I love to travel. Whether it’s on or off-the-beaten path, I enjoy sightseeing and being able to experience different cultures. I also love to eat and dance until my feet hurt.
Call me weird but when I travel, I make sure I have all the essentials for whatever may happen. I’m the person who brings the first aid kit, the extra camera in case the first one breaks and I pack for any type of weather. If you need something during a trip, odds are I probably have it on hand, including a thermos and hand sanitizer. Friends describe me as ‘risk averse’. If you’re doing something that requires signing a waiver, I’ll pass. I’d rather take the photos from a safe distance and see you at the finish line.
I like to think that I’m always prepared for every possible scenario and outcome. But the one thing I wasn’t prepared for was the possibility of being exposed to and getting Lyme Disease. This is my story.
On June 14, 2014, a friend and I decided to board a tour bus and go on a wine tour in Niagara-on-the-Lake, Ontario. People do it all the time. It’s convenient, safe and because someone else is driving, it allows you to have a couple more glasses of wine. We were having a great time.
As you can imagine, the last thing on my mind that day was contracting a disease. I didn’t know what Lyme Disease was much less know how it was possible to get it. I wasn’t’ even aware that ticks bit people and I definitely didn’t think there was any chance of me being bitten in a place that I visit all the time, so close to home, for a weekend getaway.
If I knew then what I know now, my risk averse nature would have prevailed and I would have taken all the precautions. During that trip, I was bitten by a tick and I ended up with Lyme Disease. Now more than a year later, I’m still suffering through one of the worst experiences of my life.
What does having Lyme Disease feel like?
Imagine having Fibromyalgia, MS, Lupus, Chronic Fatigue Syndrome, Parkinson’s, Alzheimer’s, Chron’s Disease, Bell’s Palsy, Rheumatoid Arthritis and Tourette’s Syndrome… all at the same time! That’s how I feel every day. Of course, having just one of these diseases is debilitating enough. When you feel as if you have all of them simultaneously, it’s that much more crippling.
I go to bed every night not knowing if I’m going to wake up the next morning. Then I fear waking up, not knowing how the day will turn out. Every minute of every day is a struggle physically and mentally. Will my limbs or head start twitching? Will I be able to remember my friends’ names today or what I just did an hour ago? Will I eat something that will exacerbate my symptoms? Will I be able to keep my eyes open for more than 10 minutes? How much pain will I feel in my joints today? Will I fall down again when I can’t feel my legs working and be bedridden for hours, even days?
Sometimes when I read my journal and remember everything I’ve gone through since that June day, I wonder how I’ve survived this. How am I not in a strait-jacket in the psych ward of a hospital? How does anyone live through that fear and constant pain on a daily basis? I don’t have an answer to those questions. Basically, I just work on living, or should I say existing, as this sure does not feel like living.
At the time I was bitten, I thought it was from a mosquito and that the black dot on my back was just a blood blister. I got the bulls-eye, a telltale sign of a Lyme Disease bite, but because it was so tiny I wasn’t too concerned. As time passed, I also got a huge rash in the area. Unfortunately, the doctor I saw misdiagnosed me with Folliculitis (an infection in the hair follicles) even though I had mentioned that I was bitten.
I spent months bedridden and physically paralyzed. Top doctors that I saw in Toronto suggested that it was “in my head”, that I was depressed or stressed out. It wasn’t until I was lucky enough to finally find one doctor who listened to me list all of my symptoms and decided to test me for every possible cause, including LD.
I was lucky enough to test positive. I use the term ‘lucky’ because most of the time, even if someone has LD, the test comes back negative. It’s not very reliable and you can’t be tested too early or too late after being bitten. I felt lucky that I finally had an answer. It was all bittersweet. But after 30 days on the drug that the specialist prescribed, I was not improving. And he was unsure as to how to help me further. I finally knew what I had, but now I was faced with a very long, almost impossible road to recovery.
Based on my experience, medical expertise in Canada is focused on the early or acute stages of Lyme disease and not on the late stage cases. Therefore, doctors in Canada follow the College of Physicians guidelines and believe that a person with Lyme Disease needs only a 30 day treatment of antibiotics. However, I am one of those cases that needs a prolonged course of action, as I did not get better after 30 days.
After several months of searching for a specialist, I found one in the US. I travel across the border every month to see her and as you can imagine, it’s not an easy battle to fight and it’s costly. I take over 60 pills a day, both prescription and supplements. I get injections every month and physiotherapy for pain every week. And after almost 8 months of treatment, I am slowly improving. But I still have a long road ahead of me to overcome this illness. And my life may never be the same.
It’s alarming to me to think that anyone could take a walk in the woods or vineyards and have their life change so drastically by a tiny little tick. These days I still prepare for everything, but now my preparation revolves around my disease. I pack all of my pills and supplements, my food, my sleep aids and my therapy tools. That’s how I get around on the days when I am able to. My friends have a new nickname for me, ‘the bag lady’. It’s not a life I would wish on anyone.
Ticks know no borders and respect no boundaries. Contrary to popular belief, a person’s area of residence does not accurately reflect his or her Lyme Disease risk because people travel, pets travel, and even ticks travel. Many believe that this is due largely to climate change and migratory birds that ticks attach to. As a result, ticks are spreading into more populated areas. This creates more opportunities for people to be exposed to Lyme disease all year round.
In other words, hiking in the bush is not the only place where you can be exposed to ticks. You can come into contact with them while overseas or even close to home, doing any general outdoor activity such as gardening, camping, golfing and even going on a seemingly innocent wine tour.
The information on Lyme disease can be overwhelming and scary. It is not my intention to make you afraid to go outside and enjoy nature through hiking or camping, or to stop going on wine tours in Niagara-on-the-Lake. I love nature and the outdoors and Niagara is still one of my favourite places to visit.
My intention is for you to be prepared. The best advice I can give to you is to get tick smart. Do your research. Knowledge is power. Know the bug, know the bite and know what to do. Spend an extra 5-10 minutes out of your day and take the necessary precautions. It may prevent years or possibly a lifetime of pain and suffering.
Stay safe, stay healthy!
For the last 12 years Joanna has worked in Marketing in the Communications Industry as well as in a Teaching capacity with the Peel Board of Education.
Before being diagnosed with Lyme Disease, her passions were travelling, playing competitive tennis and doing yoga. She has become a strong-voiced advocate for education on tick-borne illnesses through schools and the media. She hopes that her story can help prevent others from suffering the same fate.
Joanna’s friends and family have opened a Trust Fund to help cover the costs of her treatment and provide more information on her story. http://helpjoheal.com