A cautionary tale about Lyme disease
Editor's note: Parenting columnist Jamie Buss wrote this very personal column about Lyme disease in 2017. The story of her daughter's illness and the toll it has taken resonated with readers. With summer fun kicking into high gear, we brought back this column as a reminder for parents to check their children for signs of ticks.
Perhaps you caught Steve Orr’s story about them earlier this month or seen info come across your social media feed. The word is getting out. Experts believe this could be the worst season yet … for ticks.
This may raise a few eyebrows. It may cause you to pay closer attention, at least for a little while. But, like anything, one’s motivation generally wanes, as motivation tends to do. It’s human nature and completely understandable. That said, if you’re taking these warnings a bit more casually, it’s likely because you’re fortunate enough not to be affected by Lyme disease.
Once upon a time I fell into that category. Our family was once somewhat casual checking for ticks. As reports of them grew, however, so too did my concerns. Our family camps, after all. We hike, too. Weather-permitting, we spend as much as we can outdoors. We’ve pulled ticks off our children and ourselves. Ironically, though, a tick was never found on my daughter, Ella, 8, who now suffers from chronic Lyme disease.
A little back story
In early 2015, my daughter suffered from some pretty debilitating headaches. She spent a good deal of time in the nurse’s office as a result. We took her to see her pediatrician, had her eyes checked, ran some blood work, but miraculously, one day they just stopped on their own.
For two days, we carried her everywhere because she couldn’t get anywhere on her own. The pediatrician thought she may have juvenile rheumatoid arthritis and scheduled her to see a specialist immediately. Blood work followed to help pinpoint things, which unfortunately, came back positive for Lyme.
'Not a huge deal,' I thought at the time.
We had a diagnosis, after all, and the doctors were highly optimistic that Ella would make a quick and full recovery. Not knowing anything about Lyme at the time, I had no reason not to believe them. That was, until things got worse.
Ella’s symptoms went from knee pain to a myriad of other issues. She suffered from various types of headaches. She had blurred and double vision, insomnia and concentration problems. She felt as though needles were in her feet when she walked and had bouts of air hunger, which I liken to an asthma attack, of sorts. She had stomach pain and chest pains so severe, she’d be unable to stand up straight. The list was long and frightening. But, it proved four weeks of antibiotics wasn’t enough to rid her of Lyme and that we were in for a far longer battle.
On the recommendation of fellow Lyme sufferers, we set out to find ourselves a Lyme-literate doctor (LLMD) who could help us further. It seemed an easy task, until we delved into the process. There wasn’t a single LLMD in our area. Not one. So, we had to travel 4½ hours to be seen. After more rounds of blood work and further testing, it was concluded that Ella not only suffered from Lyme, but also two other tick-related diseases, or co-infections, further complicating her path to recovery.
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Tickmageddon? Some say Lyme disease risk will soar this year
While I’d like to tell you things have gotten far better, I just can’t. This winter, our second since her official diagnosis, brought on the worst pain she’d experienced yet. In a span of a few months, she either arrived to school late, left early or didn’t go at all 40 percent of the time.
Miraculously, she didn’t fall behind academically, but was instead robbed of precious time to simply be a kid. She couldn’t socialize, laugh and play with her peers, as she was isolated from so much. Even when she was able to do more, her pain was a constant, unwanted companion.
Ella has been on several rounds of medications and herbal supplements to combat Lyme and the other diseases with which she’s been stricken. She’s had more vials of blood taken in the last two years than most will in a lifetime. Her record … 19 vials in one sitting.
I wish I were kidding.
And because of the medical/clinical divide with regards to Lyme, little to none of her workups and treatment are covered by insurance. The disease is debilitating, deflating and downright expensive.
With warmer weather returning to our area, my daughter’s pain is subsiding. She hasn’t missed a day of school since spring break, a feat we celebrate daily. I wish I could say it’s because she’s being cured, but unfortunately that’s not likely the case. Instead, symptoms are just being put at bay, because that’s how Lyme works for many sufferers. The colder the climate, the worse some will feel. It’s a bit of a catch-22, really. The symptoms can diminish in warmer weather, but the presence of ticks is higher as the temperatures climb, so you trade one worry for another.
Lyme prevention
It seems awful to admit this, but sharing our story, in a way, is meant to scare you. In no way is that done maliciously. Rather, it’s meant to raise awareness and advocate on behalf of an ever-growing group of people who suffer like my child does. If one tick is found, or one family helped, then my daughter’s hardships are not for naught.
Please, educate yourselves about Lyme disease. Wear long, tight-fitting, light-colored clothing when hiking. Ticks are easier to spot on lighter clothes. Long socks should be worn when walking through thick grass and wooded areas. Clothing should immediately be changed, and washed, upon entering your home. Use repellent on skin or clothing to help deter ticks. Know where ticks like to hide on bodies. They prefer dark, moist areas, so check hair, underarms, inner legs, etc. They can be as small as a poppy seed, so be thorough.
Know the immediate signs, but don’t rely too heavily on them. Finding a tick on the skin is an obvious clue, but it’s important to note that ticks or a bullseye rash are found in less than half of all Lyme cases.
If you find a tick, use a set of tweezers to pull it upward and out of the skin. Consider sending it to a lab for testing. Find more info at www.lymedisease.org.
Treatment should happen right away if one is found, as the earlier it's caught, the easier it is to treat. The International Lyme and Associated Diseases Society (ILADS) recommends antibiotic treatment last for no less than three weeks, many times longer.
Become familiar with signs beyond the obvious. Sudden onset of headaches, unexplained joint pain or fevers should alert you.
Through all of this, the best advice I can give is to trust your instincts. If blood testing comes back negative, or you aren’t convinced things are going the right way, find an LLMD for a second opinion and get more extensive testing done elsewhere. You are your best advocate.
Editor's Note: This column was written by a parent who is not a medical professional. If you are experiencing a health issue, please see your doctor.
Jamie Buss is a parenting columnist and mother of three. Continue the conversation with her at www.facebook.com/ROCparenting or via email at ROCparenting@gmail.com.
Lyme disease by the Numbers
300,000 – number of new cases reported each year
300 – strains of Lyme worldwide
100 – strains of Lyme in the U.S.
50 - The percentage of times a tick or bullseye rash is found
35-50 – The percentage of times common blood testing shows a false negative
1 – Lyme is the fastest-growing vector-borne disease in the U.S.
— Statistics from ILADS.org