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How to be Tick AWARE

for

Lyme Disease Awareness Month

May is #lymeawarenessmonth – In honor of Global Lyme Alliance and their #onebiteisallittakes initiative, I’d like to share my story about how I spent 7 years, disabled and fighting for answers.

Keep reading to learn how Lyme Disease has affected me and how you can be tick AWARE…

It ALL started with my peace corps service, 2011… I was medically separated after serving 6 months in Namibia when a parade of symptoms caused me to be sick for two months on and off without medical tests to back up what was happening. They found my previous EBV/ mono had been activated so they mistakenly thought that alone was the culprit and sent me home. They did test me for the tick borne infection rickettsia, and I tested negative, but I had found a tick in my bed one night during service and was sick a matter of weeks later. I always suspected Lyme but over the years to come, asked several doctors who assured me if I didn’t have a rash, it was ‘highly unlikely’.

After this experience, about a year later I started having severe symptoms that were soon diagnosed as fibromyalgia, then autoimmune bloodwork leading to a diagnosis of lupus, then thyroid symptoms diagnosed as hypothyroidism.. leaving me functionally disabled and struggling to manage working still.

I ended up having to leave my job to focus on my health and made ALL the lifestyle changes I had ever researched and found effective for autoimmune disease, and actually improved for about 6 months.

Then, in 2019, I declined even more rapidly with severe neurological symptoms, leading to a dx of POTS, MCAS and hEDS and my new POTS doctor wanted to rule out Lyme ‘just to be sure’. Sure enough, I tested positive for both late stage AND acute infection and put on the most aggressive treatment.

4 months later I’m still fighting, determined to get better, and am realizing this will be a forever battle.

Lyme disease is a stealthy bacteria that burrows deep into your tissues and hides from antibiotics. They’re quite brilliant creatures, and very difficult to eradicate. We lack good testing & treatment for these persistent forms of the illness & it’s also mediated by each individuals immune system reaction to the infection. One bite is all it took for this to happen to me, and it can happen to you, too.

be tick aware

Practicing good tick bite prevention habits is the best way to prevent Lyme disease and other tick-borne illnesses. Global Lyme Alliance shares these prevention strategies for being tick AWARE and what to do if you have been bitten.

Good habits range from wearing appropriate clothing, where you walk, and how often you check for ticks. Simply, it’s important to Be Tick AWARE.

5 easy steps to remember are:

• AVOID areas where ticks live. Ticks thrive in places like wood piles, leaf litter, long grass, beach grass, bushy areas, stone walls, and perimeters where the lawn meets the woods.
• WEAR light-colored clothing to spot ticks more easily; long-sleeved shirt tucked in at the waist, long pants tucked into high socks, closed-toe shoes, and a hat with your hair tucked in, if possible. Do not walk in the grass barefoot or in open sandals, even if it’s a shortcut.
• APPLY EPA-approved tick repellent (such as DEET or picaridin) and insecticide (such as permethrin) to skin, clothing, and shoes as directed. Watch video on how to properly apply repellent.
• REMOVE clothing upon entering the home; toss into the dryer at high temperature for 10-15 minutes to kill live ticks. Putting them in the washer, however, will not.
• EXAMINE yourself and your pets for ticks daily. Feel for bumps paying close attention to the back of knees, groin, armpits, in and behind the ears, belly button, and scalp. Check everywhere – ticks love to hide

WHAT TO DO IF YOU FIND A TICK ATTACHED

As hard as it may seem, don’t panic. Here are 5 steps to follow if you find a tick attached to you, or someone you know. Click here for a printable info sheet.

STEP 1. Remove the tick

Remove the tick with a tick removal tool or tweezers. Get as close to the skin as possible, being careful to get the head – pull the tick straight up – immediately clean the site of the bite with and antiseptic or soap.

DO! Save the tick in a sealable bag or vial with date of removal
DO NOT! Twist or agitate the tick - Touch the tick - Drown the tick in oil or use petroleum to remove, it could spread any pathogens

Watch tick removal video.

STEP 2. Send the tick in for testing

Testing the tick is important to identify its species and diseases it’s carrying. This information may aid in your diagnosis. It will also help researchers better understand tick habitats and patterns. Ask the lab to test the tick for Lyme disease and other tick-borne pathogens. Request that your lab test for Lyme disease and other tick-borne pathogens (co-infections).

See list of tick testing labs.

STEP 3: Monitor your bite site closely

1. Keep a close eye on your bite site and document any changes.
2. Take a picture of the site of the bite as soon as possible. If you see any changes, take additional pictures.
3. Draw a circle around the bite to easily track a rash that may start from the bite. Watch the site and other parts of your body to see if a rash develops for about a week or more. Any changes can mean a reaction to a pathogen from a tick.

It’s important to note that while the bulls-eye rash is most associated with Lyme disease, many people do not develop a rash or the appearance of the rash is not a bulls-eye. If you do develop a bulls-eye, CDC guidelines indicate this as a positive diagnosis for Lyme disease, and treatment should be started immediately.

STEP 4: Consult with your doctor

AS SOON AS YOU EXPERIENCE ANY SYMPTOMS, see a doctor. A symptom could be a reaction or rash at the bite site, fatigue, brain fog, or any flu-like symptom. Note: a bulls-eye rash serves as an official Lyme disease diagnosis per the CDC. At the first signs of symptoms, 21 days of antibiotic treatment doxycycline are recommended immediately. Early diagnosis and treatment are key!

It’s important to note that while the bulls-eye rash is most associated with Lyme disease, many patients do not develop a rash or the appearance of the rash is not a bulls-eye.

Step 5: Trust your symptoms, not the test

Current Lyme diagnostics are inaccurate about 1/2 the time! It’s important to remember that if your doctor says your test came back negative, but you are feeling symptomatic, you may still have Lyme disease. Trust your symptoms, not the test!

If you need help connecting with a Lyme treating physician, GLA can help.

 

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