Tag Archives: bulls-eye rash

ticks are everywhere_caroline blog

Ticks are Everywhere. Don’t Believe Me? I was Bitten in My Own Bed.

By Caroline Lewis

Tick prevention was never something that crossed my mind growing up, despite living in Fairfield, Connecticut. I would often go on hikes with my family and friends or walk my dog without a care in the world. I went to summer camp in Maine for eight weeks every summer for six summers, and was never bitten, or even taught about tick-bite prevention.

That all changed on Wednesday, June 26th, 2019. On that morning, I got out of the shower to start my normal post-shower routine. As I was rubbing in lotion on my left arm, I felt a small bump. I looked down to see a black tick attached to my arm. I panicked.  Everything I had read about Lyme disease while working for GLA flooded my mind.

Now how ironic is this? Luckily, the day before I was bitten, I took home from GLA a tick removal tool that we include in our Be Tick AWARE prevention kits, with the intent of giving it to my mom to use on my dog.  Little did I know that I would be using them to extract a tick from myself less than 24 hours later. After carefully removing all of the tick with the tweezers, I placed it into a plastic bag (OK, two bags just to be safe), and brought it to work to show everyone that their newest member of the team had been bitten by the very menace that those of us at GLA fear the most.

In my case, I got this tick bite from simply being in my own home. I did not go outside that day (except to go to work); I did not hike; I did not walk my dog in the woods; I didn’t go near beach grasses; I didn’t roll about in fallen leaves, and so on. I should not have gotten a tick bite, but I did. I came home from work and stayed inside for the rest of the night. Ticks are everywhere, and that is something you cannot allow yourself to forget.

Back at work I went to my boss and told her what had happened.  Soon, the whole office was invested in my story, with our scientists looking at the tick with a magnifying glass. We concluded that the tick most likely came into my house on my dog and was in my arm for less than 24 hours, since I would have noticed it when I changed my clothes the night before, or I would have seen it on my arm during the day.

I logged onto the GLA website so I could find a lab to test my tick. I ended up choosing UMass Laboratory of Medical Zoology in Amherst, Massachusetts since they offered to test the tick for common tick-borne co-infections as well as the Lyme disease bacterium.  I packed the tick up and sent it off.

The UMass Labs sent me convenient texts and emails whenever they discovered something new about the tick. For example, they updated me on when received my tick.

However, while getting those texts and emails was admittedly great customer service, I grew more anxious waiting for the actual test results.  My mind was swirling with the worst possible fears and I could not relax.  My heart would race every time I thought about the rick results, filling me with anxieties.

Flash forward to Monday, July 1st, 2019: The tick tested positive for the Lyme disease bacterium, Borrelia burgdorferi, but none of its co-infections.  It was a black-legged deer tick in the nymph stage, and it was only partially fed – confirming our guess that the tick was attached to me for less than 24 hours.  This fact calmed me because I remembered reading that it’s typically accepted that that the tick needs to be feeding for at least 24 hours in order to infect a person with Lyme disease.  I’ll be okay, I thought, it was only attached for around 12 hours.

On Friday, July 5th, I was waiting at the DMV when I noticed a small red rash around my tick bite.

Oh no, I thought, there’s no way! I quickly scheduled a doctor’s appointment for later that day. I have a doctor who has seen me since birth, however, she wasn’t available on such short notice. So, I saw another doctor within the same practice.

When I arrived, the doctor did not believe I had been bitten by a tick and questioned me intensely.  She also stated that the rash was less than 5cm, so she did not think it was a tick bite – just an inflamed insect bite. This doctor completely dismissed my tick bite, and even told me that sending a tick out for testing was useless, ultimately crushing my confidence and making me question my certainty. Yes, this happened in Lyme endemic CT.

She sent me home with the words “keep an eye on.”  The whole appointment lasted around five minutes. I started to feel like the majority of Lyme patients out there who see doctors who steadfastly refuse to believe them no matter the iron-clad evidence. I started second guessing myself. What if I’m just allergic to tick bites generally?  What if the lab misidentified the bug in my arm? This caused extreme anxiety all weekend.

When I returned to work that Monday, I felt defeated. I hadn’t looked at my rash that morning, but when I revealed my arm to my coworkers, it was clear that a bulls-eye rash had formed.

My coworkers suggested meeting with my trusted family doctor this time to check out the rash.  Later that day, my family doctor was available, and she took a look at my arm. She gasped and exclaimed that I needed doxycycline immediately.  She even asked if she could show her intern my rash, claiming it was a perfect example of a Lyme bulls-eye rash.

My bull’s eye rash continued to get worse after I started Doxy.  Here are some pictures of the first three days after I started the antibiotics. By now the rash has diminished and is completely gone.

Here are pictures of my bulls-eye from July 9th to July 11th.

I was relieved to get a final diagnosis, I also felt extremely lucky.  Not lucky in the sense that I had contracted Lyme disease, but lucky because I had the bull’s eye rash, which is a classic symptom of Lyme. Many people who’ve been bitten by a tick never

recall the tick, or even develop a rash. Lucky, too, that I had a doctor who knew the science and believed in me. Moreover, because I found the tick which had bitten me in a very conspicuous place. Sadly, a lot of Lyme patients aren’t so fortunate.

Looking back, it is almost amusing that in my whole life I was never bitten by a tick until I started working at Global Lyme Alliance. Every time I tell my story, it leaves my friends and family gaping in disbelief.

This experience has given me a small window into what some Lyme patients face, from physical fatigue to physician dismissal – it’s utterly frustrating. Admittedly, my round of horror was relatively brief, and the odds for recovery are in my favor as I started treatment so early. Consider those who are suffering for years and never know what they are suffering from, often because of the lack of understanding by too many physicians and the lack of accurate diagnostics.

My thanks to GLA for providing me with this platform so I could share my Lyme story.  Thanks, too, for providing me with the resources and guidance to help me get through this trying process. And to those who think you’re immune from a tick bite, think again. I was bit inside of my own house!

 

 


Caroline is Global Lyme Alliance’s social media and marketing intern for the summer of 2019.  She is from Fairfield, Connecticut, only one hour away from the birthplace of Lyme disease, Old Lyme, CT.  She is a rising senior at Denison University in Granville, Ohio and she is studying Psychology.

Not All Lyme Rashes Are Created Equal

by Jennifer Crystal

Lyme disease: that’s the illness you get when you find a bulls-eye rash, right?

It very well could be, but here’s the catch. The bulls-eye rash isn’t the only sign of Lyme disease. Nor does every Lyme rash (Erythema Migrans or EM) present as a target with red rings around it. To assume that Lyme always comes with a bulls-eye rash is, in fact, to be way off target and—worse—poorly informed when it comes to diagnosing the disease.

In fact, less than 50% of Lyme patients ever find a bulls-eye rash, or any rash at all. But that doesn’t mean they don’t have Lyme. It means they, and their doctors, will need to look a little further.

I found a rash on my forearm in the summer of 1997 while working at a camp in Maine. It wasn’t a bulls-eye shape. It was a series of red dots, sort of stippled, that extended from my wrist almost to my elbow. It wasn’t raised and it didn’t itch.

“It’s probably from your sleeping bag or something,” the camp nurse said. In 1997 Lyme disease was not on the public health radar or mine, which is ironic since I grew up in Connecticut where the disease was first discovered.

That same summer I developed hypoglycemia, which I later learned is a common symptom of the tick-borne disease babesia, a co-infection of Lyme. That fall I was bedridden with flu-like symptoms. Had I presented these symptoms, and my rash, to medical professionals today, they might have seen a pattern and tested me for tick-borne illnesses. Lyme literacy is improving, but not all doctors look at individual symptoms in a big picture way—and that pesky myth of the bulls-eye rash, especially if you don’t have one, still persists, which is why I continue to share my story.

Sample Em-RashEM rashes present in many different ways. Some are small. Some are big and blotchy. Some are spotted. Some are pink and some are bright red. If these sentences are starting to sound like a Dr. Seuss book, it’s because the lesson they contain is simple. If you find any type of rash at all, especially during the summer months, and if you subsequently experience symptoms of tick-borne illness, do not assume your rash is nothing. Show it to a Lyme Literate Medical Doctor (LLMD), who you can find here.

If you, your children, or your pets spend time outdoors, it’s important to do nightly tick checks of everyone exposed. As you are looking for culprits, also keep your eye out for rashes of all kinds. They don’t always appear in obvious places. A rash could be on your back—have someone else look!—in your groin, between your toes, behind your ears, or on your scalp.

And a rash might not be there at all, but you can have Lyme disease without ever getting one. Therefore, in addition to checking yourself for ticks and rashes, it’s important that you keep an eye out for typical Lyme symptoms. If you experience flu-like symptoms such as fatigue, joint aches, headaches, neuropathy, Bell’s palsy, or any other unusual symptom, do not brush it off as a summer flu.

Maybe you’ll get lucky, and that’s all it will be, the summer flu. But it’s better to be safe than sorry; let an LLMD make that call. You will also want to keep an eye out for symptoms of co-infections, like the hypoglycemia which I experienced.

Of course, if you are lucky enough to find a bulls-eye rash, take it as an unequivocal sign: you have Lyme disease. Do not wait to see if you develop symptoms. That can take months. By which time the disease, and possibly co-infections, will have spread further into your system and may cross the blood-brain barrier. Then the disease(s) will be much harder to treat.

In a way, finding a bulls-eye rash is like winning the lottery. If you’re smart, you have a ticket to immediate diagnosis and treatment. Moreover, it’s unlikely that you won’t have to deal with chronic symptoms and long-term treatments. If you aren’t so lucky as to win a bulls-eye, keep looking for ticks, atypical rashes, and symptoms of tick-borne disease.

I wish you all a Lyme-free summer!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

10 Top Myths About Lyme Disease

10 Top Myths About Lyme Disease

Lyme disease has become one of the fastest growing epidemics in the nation. According to the Centers of Disease Control and Prevention, there are more than 329,000 new cases in the U.S. each year. But getting the facts about Lyme disease isn’t always easy.

Here are some of the biggest “myths” about the illness—and the information you need to protect yourself, your family and pets from tick bites so you can safely enjoy the outdoors.

Myth #1:  Lyme always causes a bulls-eye rash.

FACT:  Although most people associate Lyme disease with the bulls-eye-shaped “erythema migrans” (EM) rash, less than 50 percent of patients develop one. Early stage Lyme may manifest as a mild flu-like illness with a headache, a stiff neck, or a rash that’s so pale or oddly positioned that it’s barely noticeable. If you get a rash, it’s just as likely to look like a simple rash that is easily mistaken for a skin infection or spider bite.

Myth #2: Lyme is an East Coast illness only.

FACT: Although it’s more prevalent in the Northeast and Midwest, Lyme disease has been reported in all 50 states and is a problem around the globe. It is endemic in parts of Europe and Asia, Australia and Canada, and is even found in the Amazon region of Brazil.

Myth #3: You’ll know when you’ve been bitten by a tick.

FACT: Ticks have a numbing agent in their saliva so you don’t feel anything when one first bites you. You probably won’t even know a tick is feeding. Most people don’t ever recall seeing a tick latched onto them.

Myth #4: Ticks die in winter.

FACT: Many people believe that ticks die in winter, but that’s not true. Temperatures have to drop below 10 degrees Fahrenheit for a long time in order for ticks to start dying, and thanks to climate change that’s not the reality even in the northern states anymore. Although this past February was the coldest month on record for many Northeast and Midwest areas, the heavy snows paradoxically provided a layer of insulation for blacklegged ticks that are now questing for blood as the weather warms up.

Myth #5: You have to be near deer to be exposed to deer ticks.

FACT: If you don’t see any deer and think the coast is clear, think again. Blacklegged ticks (commonly called deer ticks) carry the bacterium that causes Lyme disease. They feed on small mice, chipmunks, squirrels, rabbits, birds, deer, and even on dogs and cats

Myth #6: Ticks fall from trees.

FACT: Ticks don’t jump, fly, or drop from trees. They crawl up. If you discover a tick on your head or back, it’s probably because it latched onto your foot or leg and crawled up your body and not because it fell off a tree branch. Minimize your exposure by tucking pant legs into socks and shoes, wear long-sleeved shirts, and tuck your shirt into pants to keep ticks on the outside of clothing.

Myth #7: Hiking and camping are the most common ways to catch a tick-borne disease.

FACT:  It’s important to make tick bite prevention an important part of your outdoor plans whether you are gardening, camping, hiking, biking, or just playing outdoors. Although black-legged ticks live in moist and humid environments, particularly in or near grassy or wooded areas, they will cling to brush and shrubs and live in lawns and gardens, especially at the edges of woods and around old stone walls.

Myth #8:  If the blood test is negative, you don’t have Lyme. 

FACT:  Tests for detecting Lyme disease are often inaccurate. At present, your doctor will probably recommend two-tiered blood testing requiring a positive ELISA test result. Doctors commonly order an ELISA first to screen for the disease, then confirm it with a Western Blot. The ELISA measures the total amount of antibodies produced by the body in response to the Lyme bacterium (Borrelia burgdorferi). However, it may miss over half of Lyme cases because antibodies may not be high enough yet to detect, giving a false-negative result. 

Myth #9: Antibiotics cure everyone within two to three weeks.

FACT:  Studies show that as many as 20 percent of patients continue to exhibit symptoms even after they complete antibiotic treatment. What’s more, many of these individuals turn out to have co-infections transmitted by the same ticks that gave them Lyme. These co-infections don’t always respond to treatments for Lyme disease itself.

Myth #10: You can remove a tick with a match or by painting it with nail polish

FACT:   Forget any advice you’ve heard about holding a match to the end of a tick, swabbing it with nail polish or suffocating it with petroleum jelly.  You want to remove an embedded tick from your body. The easiest and safest way is to pull it gently out with tweezers. Grasp the tick close to its head, then slowly lift it away from the skin. Don’t twist or jerk the tick; this can cause the mouth parts to break off and remain in the skin.