Two for Two: Our Lyme Disease Story

Historically, Lyme Disease has been a controversial topic. While attitudes are changing, some mainstream doctors are still skeptical as to the validity of Lyme Disease (especially “Chronic Lyme Disease” which is even harder to diagnose). Many people live a life trying to convince the medical community that they are, in fact, sick. And that they are not CRAZY. I’m here to tell you that it’s a very real disease and shockingly, each of our children contracted it while we were living in Northern Virginia.

May is Lyme Disease Awareness Month, so this is my contribution to spreading awareness. I’m not an expert and certainly can’t offer a medical opinion, but I thought by sharing our story we might help another family who is looking for answers.
Lyme Disease is an infection caused by a bacteria that is carried by deer ticks. If caught early, it is easy to treat. However, without a positive blood test, many doctors will not treat it. Luckily, we found our way to a Pediatric Infectious Disease doctor who knew her stuff. It ended up being an easy treatment and our story is, thankfully, not one that carries on today.

First: Cases on the Rise

As awareness, research, and data collection has improved, the Center for Disease Control has changed its statistics and now the number of cases in the U.S. is TEN TIMES the number originally thought at 300,000 new cases each year (source, source). It’s higher than AIDS cases and breast cancer cases. These numbers are scary, but with more awareness and education, we can help change attitudes and hopefully change the way the medical community sees this virus.
Here’s our story:

The Dream House

In the spring of 2013, we moved to a new house in Oakton, Virginia (about 12 miles west of Washington DC). It had gorgeous hard wood floors, an updated kitchen, a very private backyard and it was surrounded by woods.

We LOVED the privacy the woods offered to us, and we marveled at the families of deer that would come by in the early morning. We’d call to the kids and they’d come running to see the deer eating or just passing through our yard.

“It’s Just a Virus”

About two months after we moved in, my then seven-year-old son, Townes, starting acting “off”. He had headaches and stomach aches and seemed a little “out of it”. I brushed it off as random kid complaints. He then developed a low-grade fever and the headaches and stomach aches continued.
Virus, right? What kid hasn’t had these exact symptoms and it amounted to a viral infection that worked itself out?
After about a week of this, I took him to our pediatrician and he confirmed it was most likely just a virus. We plugged along with our normal activities — school, unpacking, playing.
He wasn’t bedridden — but was struggling with malaise, headaches and stomach aches.

The Mysterious Non-Itchy Rash

In the middle of this virus, and I think as a direct result of his fogginess, Townes fell off the swing and hit his head. The next morning he was throwing up every 20 minutes. We went to the ER where they stopped the vomitting and decided that we should treat him as if he had a concussion, but it wasn’t worth the negative aspects of doing any imaging to confirm it. He avoided sports at school and we were told to follow-up with our pediatrician.
When we followed up with the pediatrician a few days later, we talked to him about Townes’ virus again, but with such vague symptoms it was hard to diagnose him with anything more than a virus.
That same night while helping Townes out of his bath I noticed he had these huge red stripes all over his back and chest and smaller red, flat circles on his chest and thighs.

This wasn’t a rash I had ever seen before. What I realized later was that those weren’t stripes, but the outer circle of a very large lyme “bullseye” rash on his back. He was oblivious to it — it wasn’t raised and it wasn’t itchy. I grabbed my phone and took some pictures. I sent them to my sister and my mom and asked if they’d ever seen anything like it. They were as puzzled as I was.

The rash faded by the next morning, but never really completely went away. The rash would reappear if his body temperature would rise — like when he was sitting under a warm blanket/comforter while watching tv. It also appeared on his butt-cheeks and his face while he was sleeping.

I’m very trusting and since the pediatrician wasn’t worried, I wasn’t overly concerned. But he was not himself and still just not feeling well. The fever would come and go — we rarely treated it because I figured his body was doing its job in trying to eradicate the virus.

Could It Be Lyme?

During this time, we also found a scab on his back that we were suspicious of — we thought it could possibly be a tick bite that we never noticed.
I took him to the pediatrician again, and voiced my suspicions that he could have Lyme (but I forgot my phone and didn’t have the pictures — of all the days…).
The pediatrician said that it was very rare for people in our area to get Lyme Disease. He said of all the people he’d sent for blood work, like 2% had come back with a positive test. But to be sure, he gave us the lab work for the testing.
But, we were never able to get the blood work..I’ll spare you the details, but let’s just say my son has a healthy fear of needles and is very strong when he needs to be. I let it go because the doctor said if he has Lyme, it wouldn’t just go away. In other words, wait it out. If it’s just a virus, he’ll be better soon.

Grandma’s Intuition

About three weeks into this virus, and with no signs of improvement, we were baffled. With no blood work, we couldn’t treat him, but I just had this bad feeling about it all. But I also tried to remain calm and stay the course. I was torn.
If my research on google was right, then he definitely had it. The only thing holding me back was that there didn’t seem to be any photos online that matched his rash exactly. This gave me pause.
My mom saw a story on Fox News and his symptoms were identical to the ones they listed for people with Lyme Disease. She called and begged me to have him tested — she was convinced that he had Lyme Disease. I won’t forget that call — I remember where I was standing and the emotion in her voice. If she could’ve reached through the phone to shake me by the shoulders to knock some sense into me, she would have! She convinced me to push harder.
I sent my childhood friend an email who had been through rounds of testing because they suspected she had Lyme and she suggested I send the pictures to her sister-in-law, who happened to work with Lyme patients but who also used to work as an ER nurse. I sent the pictures to her “blind”. I think I just said, “Townes has this rash, what could it be?” She texted back immediately and said it was LYME and I needed to get him on antibiotics ASAP.

The Diagnosis

I ended up contacting a Pediatric Infectious Disease doctor at Georgetown University Hospital in Washington, DC. I spoke with her nurse who suggested I forward the pictures along with a list of his symptoms and they would get back to me if they were suspicious it was Lyme. I emailed them and 20 minutes later they called and said, can you come in tomorrow?
Longer story, longer. He was diagnosed with Lyme Disease. I was stunned and relieved. She said there was no need for blood work because the type of rash that is associated with Lyme in that area is very specific and distinctive. (In other words, someone with Lyme in Northern Virginia may have a rash that looks very different to someone who has Lyme in Connecticut.)
The distinctive rash, coupled with his tell-tale physical symptoms, made it clear: There was no denying that he had Lyme. And as she put it, she took the clinical diagnosis or “old school” approach (as she called it) to diagnosing infectious diseases: study the symptoms. The diagnostic blood test was not reliable and not necessary.
Interesting side note: she said the virus stays on top of the skin at first and it travels over the skin which is why the rash on his butt cheeks showed up after the first round of the bullseye rashes.
Townes was on antibiotics for a month and started feeling better soon after the drugs got to work. He has been symptom-free ever since. Our doctor noted that now that he’s had it, we don’t need to worry about contracting it again.

Not Again!

Fast forward 6 months and I found a tick at the base of my daughter’s neck — it couldn’t have been there very long and we extracted it easily (no head was left behind). I kept an eye on her, but didn’t think much of it (other than we needed to check for ticks a little more often!).
But then about a week later and (again) after giving her a bath, I noticed that the same rash that Townes produced appeared on both of her upper arms. It was stunning, really.

I took the pictures and called the Pediactric Infectious Disease doctor the next day. We got her in that week and confirmed that she, too, had Lyme. She was on antibiotics for three weeks and has also been symptom-free ever since.
The entire practice at Georgetown just shook their heads — the chances of both of our kids contracting Lyme disease seemed nearly impossible. Maybe we should’ve played the lottery that day!

Living Lyme Free

We are so lucky that we caught it early since many people go years without a diagnosis and by the time they are diagnosed, the Lyme has become a systemic disease that is extremely hard to eradicate. If left untreated, Lyme disease can cause swelling of the joints, memory loss, speech problems and sometimes even worse symptoms like paralysis as it spreads throughout the body to the heart and nervous system.
A huge percentage of people never realize they had a tick bite or notice a rash (and 50% never produce a rash, at all) so when they suddenly start feeling sick, Lyme isn’t even on their radar. Again, we were so lucky we caught the rash for both kids.

I know our story is not as dramatic as many others who have gone years without a diagnosis. Blood work is king to mainstream doctors (understandably), but Lyme is extremely hard to diagnose with a blood test. In my research I read a story about one woman who would not give up on her diagnosis and it took SIX blood tests until she finally got the positive diagnosis. So much time lost!
My heart goes out to anyone who is struggling with the disease or who has a family member who is struggling with it.
If you have a strange rash (not necessarily identical to the one my kids had), especially if you’re experiencing fogginess, a low-grade fever, or viral-like/flu symptoms, don’t let your doctor dismiss it and just give you an anti-itch cream. Do your research and get some answers! (See the link at the end of the post for a full symptom list.)
After that experience, I never looked at the deer near our house the same again. I know it’s not their fault, but deer are so overpopulated in some parts of Virginia. I suspect that is why the number of cases of Lyme has been on the rise.
Now we live in Denver and they have a different population of deer here — mule deer. It appears that Lyme disease is extremely rare here and I’m not even sure the mule deer carry ticks. In 2014, about 95% of Lyme Disease cases were reported in the Northeast. But there have been reported cases in every state.

(via Amazon)
I was told that the best way to prevent a tick bite is by using the OFF! Deep Woods Insect Repellant in the green can. It’s very inexpensive (I get ours from Target) and it’s the only thing that will protect you. (More resources on how to prevent Lyme Disease are listed at the end of the post.)
That’s our long Lyme Disease story. I hope it finds its way to another person or family who is trying to figure out what is going on with their child or family member. I wish I had found a story like this when I was frantically searching google trying to figure out what was going on with my son.
Do you have any experience with Lyme Disease? Tell me your story in the comments.
And share this post so that it finds the right people ☺

More on what you can do to spread awareness and prevent Lyme Disease:

+ The proper way to remove a tick (hint: it doesn’t involve burning the tick like we used to do growing up!) + Diagnosis and Testing + Symptoms of Lyme Disease and Signs and Symptoms of Lyme Disease

(via lymediseaseassociation.org) + Printable posters on how to prevent tick bites + Lymedisease.org + Lymediseaseassociation.org + Deerdamage.org is providing a service to Virginia communities in more ways than one + Under Our Skin (A chilling, award-winning documentary about Lyme Disease from 2008.) + Under Our Skin 2: Emergence (The 2014 sequel to Under Our Skin.)

Originally published at www.alittleofalot.net on May 11, 2015.