Disclaimer: This article is based on my own experience with Lyme, the treatment I received, and research that I have done. It is not meant to be conclusive or to be taken as medical advice. My hope is to extend knowledge of Lyme so that through greater awareness more can be done to prevent further spread of the disease.

At the end of August I came down with a fever. Then I found a rash on my leg. The bite started to look worse. After a couple of visits to the doctor, it was confirmed: Lyme disease.

It’s true that we are often outside with our kids. They play anywhere and everywhere. This summer we were gardening and playing at my sister’s house in the country, where she’s found ticks before. Afterwards we went camping, slept in a cottage, and were often quick to bed and not so careful about tick checks as we had been. Then we returned home and the boys and I did yard work. We check our boys often. And I thought I had been diligent with checking myself. But I did not know it would be so easy to get bitten and never notice…

how do i know if i have lyme?

I did not see the bite right away. I started to have symptoms that looked like the flu: chills, aches, fever, and something I can only describe as small electric “shocks.” Different from the flu though is that I never had a runny nose or a cough. I thought perhaps at first that I had a sinus infection, since my husband and I were both getting over head colds. But then Gerhard noticed the bite behind my knee.

At first the bite looked like a red, round circle with a raised bump in the centre. It could have been a spider bite. It looked redder than a mosquito bite. I did not get a bulls eye, which people typically associate with Lyme. In fact, and I did not know this, but people with a darker skin tone will get something that looks like a bruise. With my dark tan, this was the symptom of Lyme that had shown up on me. So the first day I had a reddish, circular bite, and on the second day I had an oval looking bruise in the same spot. Only later did I get the classic ring around the bite, but it looked more purplish than red on my skin tone.

Symptoms of Lyme (from the Government of Ontario website):

a bull’s-eye rash (a red patch on the skin that is usually round or oval and more than 5 cm that spreads outwards and is getting bigger)
a bruise-like rash (usually on darker skin tones)
another type of unusual rash
fever
chills
headache
stiff neck
muscle aches and joint pains
fatigue (more tired than usual)
swollen lymph nodes
spasms, numbness or tingling
facial paralysis

You can also see a photo of the two types of rash on the website.

how can i avoid getting lyme?

You can get bitten by a tick and not know it, like myself. As I learned, in the US only less than 30% of patients with Lyme disease actually recall a tick bite. Even though I shower every day (even while we were camping!), this obviously was not a good enough measure for removing the tick. Once the tick is lodged into your skin, water will not wash it away. What I do now is physically pass my hand over the potential problem areas. For my kids, I give them a bath every day and my husband or I will give them a quick check over. My sister says she often finds ticks behind her kids’ ears.

Ticks are usually small, even the size of a sesame seed. It takes them a long time to lodge into your skin so usually they will seem only partially attached when you find them.

According to the Government of Ontario website, ticks will normally lodge:

on your head
behind your knees
in your belly button
in your groin area
in your underarm
on the back of your body (use a mirror)

I’d Like to Go on a Hike and not worry!

I love going for hikes, and though this experience with Lyme has shocked me (no one ever expects it to happen to them), it won’t stop me from going on hikes with my kids. One of the easiest ways of preventing a tick bite is to use DEET or “icaridin”. Most insect repellents for adults will have DEET. The recommended DEET dosage is once per day. You can also wear long sleeve shirts, pants, and closed shoes.

If you find a tick on yourself, pull it up and out without twisting.

Guidelines for Ontario:

Once you have removed a tick, wash your skin with soap and water and then disinfect your skin and your hands with rubbing alcohol or an iodine swab.
Put the tick in a secure container (for example, a bottle with a screw top so it can’t get out or be crushed) and contact your local public health unit.

The Good News

The good news is that Lyme disease is mostly treatable with antibiotics. The symptoms need to be recognized soon in order for the treatment to be most effective. Symptoms of Lyme usually show up within 3 to 30 days of a bite.

In my case, the first doctor that I saw did not recognize the bite or my symptoms. She took bloodwork, however. I still have not heard back the results of this bloodwork, which can sometimes be inconclusive, but a second doctor looked at my bite and confirmed that I had Lyme. She also recognized my symptoms. There has been a lot of controversy around Lyme and it has taken years to be properly recognized. I think this process of recognition is still happening. Of course, it’s frightening to see a bite and to think the worst. But I think it is important to be the best advocate we can for our health and for our kids’ health. That was why, despite the first doctor’s prognosis, I sought a second opinion—and I’m so glad I did.

chronic lyme

Controversies around Lyme are usually linked to undetected Lyme disease, called “chronic” Lyme. The controversy is that some people believe they have Lyme but they may actually have some other type of illness. In other cases, a patient has Lyme and physicians are unable (or in some cases unwilling) to treat their symptoms. A Lyme infection that is allowed to linger for several months at a time can lead to more debilitating complications, including psychiatric symptoms, and a range of physical impairment.

Unfortunately, there is no standard diagnosis of Lyme. Neither do we fully understand how the bacteria can sometimes survive some antibiotic treatment. Moreover there is no one “Lyme bacteria” but a whole family of bacteria that can cause Lyme, further complicating diagnosis and treatment. Finally (another thing you don’t want to know) is that there are other tick-borne illnesses that are lesser known but also caused by tick bites.

summary of what I learned

“Evidence of potential exposure to B. burgdoferi includes a patient’s recall of an Ixodes bite but the incidence of this event varies. In Europe, 64% of Lyme disease cases were attributed to a known bite, but <30% of US patients with Lyme disease recall a tick bite.” Reference: ILADS.

“The presence of erythema migrans (EM) rash is a “classic” indicator of Lyme disease, but the appearance of EM rashes is highly variable. Most EM rashes are solid colored, ranging from faint pink to a deep red. Less than 20% of all EMs have the classic “bull’s-eye” appearance. An EM may be missed if not specifically sought on exam, as they are typically asymptomatic and may be unnoticed or unrecognized by the patient.” Reference: ILADS . Picture of EM bites on different skin tones.

Breastfeeding mothers: another reason the first doctor hesitated to give me antibiotics was that I was breastfeeding. But actually, there is a type of antibiotics that is safe with breastfeeding mothers called amoxicillin. Reference: Centers for Disease Control and Prevention.

Widely-used tests for Lyme (eg. the commonly used ELISA bloodwork test) are unreliable. Presence of the EM (“bulls-eye”) rash is enough to make a diagnosis. The rash will go away on its own in a few days, though this does not indicate that a person is no longer infected with Lyme. Reference: ILADS: Lyme Disease Basics for Providers

There is no standard treatment of Lyme. “Although Lyme disease is not rare, the treatment of Lyme disease has not attracted pharmaceutical interest and the evidence base for treating Lyme disease is best described as sparse, conflicting and emerging.” Learn more here.

Despite there not being a standard treatment procedure, current clinical evidence suggests that Lyme should be treated for >20 days with antibiotics. In Canada, the standard is 3 weeks. ILADS writes: “Given the low success rates in trials treating EM rashes for 20 or fewer days, ILADS recommends that patients receive 4-6 weeks of doxycycline, amoxicillin or cefuroxime. A minimum of 21 days of azithromycin is also acceptable, especially in Europe. All patients should be reassessed at the end of their initial therapy and, when necessary, antibiotic therapy should be extended.” Read more here.

DEET can be used to prevent tick bites. More reading here.

On How I Got Lyme Disease