Lyme Disease: Tricky to Diagnose and Other Things You Need to Know

3 years ago

I have no medical training, so this should not be taken as medical advice. If you are wondering about symptoms, get off the internet and call a qualified physician!

Let's talk about ticks. Ugh, my head is itchy just thinking about it. I'm going to go take a shower now.

Okay, I'm back. Just thinking about ticks gives me the heebie jeebies. But I've got to write about them (and compulsively scratch myself all the while) because I've learned some things about ticks and Lyme disease that I didn't know two weeks ago.

We just got the test results back. My little guy has Lyme disease and is on a course of antibiotics for it. Which means it's likely that there's a tick somewhere in my house.

**Goes nuclear on house cleaning.**

Scary as it is, I've learned that Lyme disease is a little tricky. It's not as straightforward as, say, a throat culture telling the doctor you have strep. It's more like a set of puzzle pieces coming together and kind of sort of maybe looking like the cover, enough to say, I guess these pieces go into this box...

I took Hoss to the ER on a weekend to get a Lyme test. Early-stage Lyme isn't an emergency, so I could have waited until the family doctor opened on Monday. But I wanted a doctor to assess the rash while it was still bright red and obvious.

The doctor ran through a list of questions and looked at his rash.

"This isn't consistent with Lyme disease. It would look like a target. He's allergic to something," the doctor concluded.

I asked him to order the tests I came in to get anyway. Having a mama-bear moment, I also firmly yet politely requested a prescription for antibiotics to start, just in case.

Crazy mama happened to be right this time.

I had read enough about Lyme to know that I wasn't going to treat this lightly. It's easy to treat if caught early enough, but it's easy to miss. Lyme disease has some tricks up its sleeve.

Trick #1. Lyme disease is carried by barely-noticeable ticks. Deer ticks are much smaller and harder to spot than the ones you pull off of your dog. You're not likely to find them unless you go looking for them.

Image: David van der Mark via Flickr

This isn't a full-grown deer tick, but the adult isn't much larger.

Trick #2. The tests aren’t terribly accurate, especially early on. The tests for Lyme disease are notorious for both false positive and false negative results. Since you or your little one will be getting poked anyway, make sure the doctor orders both an ELISA and Western Blot. Neither are 100% accurate, but two are better than one.

Stay in close communication with your doctor about symptoms so that you can decide together whether to treat (even if blood tests are negative).

Trick #3. Lyme disease rash doesn't always look like the characteristic bullseye. Often, we look for the erythema migrans, the target pattern that is associated with Lyme disease. But you won't always see it. For one, the bullseye marks the site of the bite, which could be hiding in hair or in less obvious places on the body. Two, it could have come and gone before you noticed it.

This is what we generally associate with Lyme:

Image: Centers for Disease Control and Prevention via Flickr

We didn’t see the bullseye on Hoss. Instead, he showed splotches all over (pictured below), even on the bottom of his foot. He seemed to have a circle around his face, with downward red streaks on his cheeks. So, my guess is the bullseye was covered by his hair. At this point, we'll never know.

(c) Courtney Sperlazza - all rights reserved

This splotch had just popped up. It later expanded a little, and the middle became very white. These patches differ from the target pattern usually associated with Lyme, which are found at the site of the bite.

What sent us to the doctor's office

Information about symptoms can be found on the CDC website. Of course, call the doctor if you have questions about anything out of the ordinary, Lyme or not.

Like I said, we caught it early, so Hoss didn't experience the later-stage symptoms like muscle and joint aches or Bell's palsy. We will continue to watch for those and other symptoms, in the unlikely event that the medicine wouldn't work.

These were the symptoms Hoss did show:

  • Hoss had a high fever, 102F at one point, in the middle of June. This is the same kid who will tally maybe one mild cold all winter, so the red flags went up. Some of his friends came down with colds around the same time, which threw us off.
  • While he had the fever, he showed some behavior changes. I figured he was grumpy from whatever caused the fever. Still, at the time, I just thought he was coming down with something.
  • My energetic little guy was also suddenly wiped out all the time. He asked for sleep on more than one occasion. Normally, he's our bedtime negotiator, and I think he would go days without sleep if no one put him to bed. So this wasn't typical behavior.
  • He then came down with the rash. The strange circular pattern on top of everything else started to point to Lyme.

Just a simple blood test, and our suspicions were confirmed. Trust your gut, mamas. Hoss was prescribed a few weeks of antibiotics. We’re not the type of family to take medicine for every little thing, but of course we’ll give antibiotics for a disease that could cause a lifetime of suffering.

Are you at risk for Lyme Disease?

In the United States, Lyme Disease tends to pop up in the eastern part of the country. However, there's nothing stopping a tick from hopping onto a host and flying across the map. (I haven't done any research on other countries, but you can find your area's stats with a simple internet search.)

If you're in a Lyme hotspot, you may want to use extra caution if you have a pet, if you've been playing in tall-grass or wooded areas, or if you're a constantly-outside family like we are.

Some last thoughts...

  • If someone in your household is diagnosed, make sure to keep an eye on the rest. You don’t know where the tick jumped off.
  • Get your long-haired dog a short-cut for the summer. Brush and check her often.
  • Check your kids thoroughly every night and when they’ve been playing in high grass. Comb through hair, check for ticks hiding in or behind ears, in underarms and in skin folds.
  • Remove ticks with tweezers, making sure to get the head out. Other methods (petroleum jelly, burning with a match tip, etc.) cause the tick to panic and regurgitate, pumping disease into the host body.
  • I DIDN'T EVEN SCRATCH THE SURFACE! There's a lot to know about Lyme disease. If you have questions, talk to your doctor or visit a more informative site, such as the CDC - they're legit.

Courtney has an MPH in epidemiology. She blogs at Project Courtney and is the managing editor of APtly Said, the blog of Attachment Parenting International.

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