Check out our guest blog post below by Lyme guru Joanna Petrakis from Toronto, Canada.
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 getting Lyme disease. On June 14, 2014, a friend and I decided to attend a wine tour in Niagara-on-the-Lake in Ontario, Canada. People do it all the time. It’s convenient, safe and because someone else is driving, it allows you to have a few more glasses of wine. What I did not know is that this day would change my life forever.
What does 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 felt every day. Of course, having just one of these diseases is debilitating enough, but when you feel as if you have all of them simultaneously, it’s that much more crippling. I would go to bed every night not knowing if I’m going to wake up the next morning. Then I would fear waking up, not knowing how the day would turn out. Every minute of every day was a struggle both physically and mentally. My thoughts revolved around; Will my limbs start twitching? Will I be able to remember my friends’ names today or even 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 again when I can’t feel my legs working and be bedridden for hours, even days?
Sometimes when I read through my journal entries from that time and remember everything I’ve gone through since that June day; I wonder how I’ve survived this. How am I not in a straitjacket in the psych ward of a hospital? How does anyone live through that fear and constant pain daily and for years? I don’t have an answer to those questions. Basically, I just worked on living, or should I say existing, as it sure did not feel like living. I have finally healed from Lyme disease and I am happy to say I am healthier than I have ever been, but it was a long and challenging road with a lot of setbacks to get here. After an experience like this a person changes their perspective on so many things and I have made it my mission to raise awareness and help others who suffer from this illness.
Contrary to popular belief, where you live or what you do, does not accurately reflect your Lyme disease risk. Ticks are spreading into more populated areas and 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 encounter 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.
Over the almost 4 years that I was sick I did a lot of research on tick bite prevention and what to do if you are bit to prevent contracting Lyme disease, which I share through my advocacy work and I am now sharing here. Please stay safe by taking special care to prevent a tick bite and the devastating consequences of it.
Lyme Prevention Do’s & Don’ts
Avoiding a tick bite remains the first step in preventing chronic Lyme disease. And you don’t have to be in the “woods” per se in order to be bitten by a tick. There can be ticks wherever there is grass or vegetation, and while it is a good idea to take preventive measures against ticks year-round, be extra vigilant in warmer months (April-September) when ticks are most active, and our skin is more exposed. Being aware is the first step in prevention. To minimize the risks of ticks biting or attaching to you in the first place, here are some simple tips:
- Wear long pants, long-sleeved shirts, and closed-toe shoes. Tuck your pants into your socks and tuck shirts into your pants to minimize the chance of ticks getting to exposed skin.
- Wear light-coloured clothing to make it easier to spot ticks and check your clothes and your body often.
- Wearing a hat so that the tick does not attach to your scalp is also a great preventative measure.
DEET or Permethrin
- Use repellents that contain 20 to 30% DEET on exposed skin and clothing, especially at the openings such as ankles, wrists, and neck, for protection that lasts up to several hours. Always follow product instructions. Parents should apply this product to their children, avoiding hands, eyes, and mouth
- Also ensure your pets are treated with flea & tick repellent.
- Use products that contain permethrin on clothing (do not apply directly to skin). Treat clothing and gear, such as boots, pants, socks and tents with products containing 0.5% permethrin. It remains protective through several washings. Pre-treated clothing is available and may be protective longer. Permethrin can be bought in camping or hunting shops.
- Avoid low-lying brush or long grass and try to stay in the centre of pathways or trails to avoid tree branches, leaves and long grass where ticks usually lie in wait for an unsuspecting victim to brush past.
- Carry a set of fine-tipped tweezers or one of the several tick removal devices on the market, to help remove a tick effectively.
- Check yourself and children every couple of hours for attached ticks and check before returning to the car for any loose ticks on outer clothing
When you come indoors, do a Tick Check:
- Do a tick check underneath clothes as soon as you are able! Ensure you are very thorough because remember, ticks can be very tiny, and can be mistaken for a mole or dirt.
- Also check family & pets on return from trips out in the country. Check in tucked away places such as under the arms, back of the knee, in the groin area, nape of the neck & behind the ears, belly button and scalp. And complete this “full body” check daily.
- Once home check your entire body for ticks. Important areas to check are behind the ears, inside the outer ear, under the arms, behind knees, the trunk of the body and the scalp. If there is no one home to help check, use a hand-held mirror to view all parts of your body.
- Bathe or shower as soon as possible after coming indoors (preferably within two hours) to wash off and more easily find ticks that are crawling on you.
- Tumble clothes you were wearing in a dryer on high heat for anywhere between 15 mins to an hour to kill remaining ticks.
DO’s AND DON’Ts
If you find a tick attached to your skin, there’s no need to panic. Follow these simple steps outlined below to get it out safely. Alternatively consider buying a Tick Twister, designed especially for removing ticks. It is important to remove a tick gently leaving the tick and its mouthparts intact. Squeezing too hard can cause the tick to regurgitate fluid containing bacteria for Lyme disease.
- DO remove the tick gently with fine tipped tweezers or a tick twister ensuring you keep the twister/tweezers as close to the skin as possible. This helps to remove the mouth parts as well as the body. Pull upwards with a steady even pressure.
- DO use an antiseptic wipe in the bite area to prevent secondary infection from germs.
- After removing the tick, DO wash your hands and the affected area with soap and water and apply an antiseptic cream.
- After removing the tick, DO thoroughly clean the bite area and your hands with rubbing alcohol, an iodine scrub, or soap and water.
- DO place the tick in a Ziploc bag & record the date it was removed. If possible, place the removed tick in a screw-top bottle and take it to your health care provider or health unit office. Testing can be done for surveillance purposes to determine if the ticks in this area are the type that can carry Lyme disease.
- DO be vigilant for symptoms including an expanding rash or summertime flu. Remember that the rash may take weeks to develop, so keep checking over the course of several weeks. Take a picture of the rash if you develop one.
- DON’T squeeze the body of the tick or use fingernails as the tick may burst causing more risk of infection.
- DON’T twist or jerk the tick as the mouth parts may become detached and remain in the skin.
- DON’T use flames, methylated spirits or Vaseline on the tick. This causes great discomfort & may cause the tick to regurgitate its stomach contents, where all the Lyme bacteria may be hiding.
- DON’T crush a tick with your fingers. Dispose of a live tick by submersing it in alcohol, placing it in a sealed bag/container, wrapping it tightly in tape, or flushing it down the toilet.
Joanna Petrakis lives in Toronto, Canada. She founded Lyme Out Loud Kids Canada which helps raise awareness and promotes advocacy for Lyme disease, and also works privately with people to provide support and advice on the healing tools that helped her recover. You can find her @jogirlwithlyme on Instagram where she shares more of her story.