WEBSTER, N.Y. – Once upon a time, our family was once somewhat casual checking for ticks.
However, as reports of them grew, so, too, did my concerns. Our family camps, and we hike, too.
Weather permitting, we spend as much time as we can outdoors. We’ve pulled ticks off our children and ourselves.
Ironically, though, a tick never was found on my daughter, Ella, who now suffers from chronic Lyme disease.
We took her to her pediatrician, had her eyes checked and ran some blood work, but miraculously, one day they just stopped on their own.
A year later, she had some new issues involving joint pain. It would come and go, a week or two at a time, but things were never so bad that we had real reason to worry.
Growing pains, we thought. She tweaked her knee at gymnastics, we thought.
All was fine — until one day she couldn’t walk.
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 the cause. Unfortunately, the results came back positive for Lyme disease.
“Not a huge deal,” I thought at the time.
After all, we had a diagnosis, 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 every reason to believe them — until Ella got worse.
Her 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.
• She had bouts of air hunger, which I liken to an asthma attack, of sorts.
• She had stomach pain and chest pains so severe she could not stand up straight.
The list was long and frightening. But it proved that four weeks of antibiotics weren’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 who could help us further. It seemed an easy task.
But not even one Lyme-literate doctor practiced near our Rochester, N.Y., suburb, so we had to travel 4½ hours for an appointment. After more rounds of blood work, tests showed that Ella suffered not only from Lyme, but also two other tick-related diseases, co-infections further complicating her path to recovery.
While I would like to tell you that things have gotten far better, I just can’t. This winter, our second since her official diagnosis, brought on the worst pain she has experienced yet.
In a span of a few months, she either arrived to school late, left early or didn’t go at all 40% of the time.
Miraculously, she didn’t fall behind academically but instead was robbed of precious time simply to be a kid. She couldn’t socialize, laugh and play with her peers because 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 she contracted. She’s had more vials of blood taken in the past two years than most people will give in a lifetime.
Her record: 19 vials in one sitting.
I wish I were kidding.
And because of the medical-clinical divide in regard to Lyme disease, insurance covers little to none of her workups and treatment. The disease is debilitating, deflating and downright expensive.
With the warmer weather slowly working its way back to northern New York, my daughter’s pain is starting to subside. 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 that’s not likely the case.
Instead, her symptoms are just being held at bay because that’s how Lyme works for many sufferers. The colder the climate, the worse some will feel.
In a bit of a Catch-22, the symptoms can diminish in warmer weather, but the presence of ticks is higher as temperatures climb. So you trade one worry for another.
Sharing our story is meant to scare you.
My intention is 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:
1. Wear long, tight-fitting, light-colored clothing when hiking. Ticks are easier to spot on lighter clothes.
2. Wear long socks when walking through thick grass and wooded areas. Clothing should be changed immediately and washed upon entering your home.
3. Use repellent on skin or clothing to help deter ticks.
4. 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.
5. Know the immediate signs of Lyme disease, 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 bull’s-eye rash are found in fewer 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 lymedisease.org.
Treatment should happen right away if you find a tick because the earlier the disease is caught, the easier it is to treat. The International Lyme and Associated Diseases Society recommends that antibiotic treatments last for no less than three weeks, many times longer.
Become familiar with signs beyond the obvious. A 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 a blood test comes back negative, or you aren’t convinced things are going the right way, find an Lyme-literate doctor for a second opinion and get more extensive testing done elsewhere.
You are your best advocate.
Follow Jamie Buss on Twitter: @jamielbuss
Lyme disease by the numbers
• 300,000. New cases nationwide reported each year
• 300. Strains of Lyme disease worldwide
• 100. Strains of Lyme disease in the United States
• 50. Percentage of times a tick or bull’s-eye rash is found
• 35 to 50. Percentage of times common blood tests show a false negative
• 1. Rank of Lyme disease as the fastest growing vector-borne disease in the USA
Thank you Jamie Buss for this informative but heart-breaking article about your daughter. As painful as it is, we must share these narratives as the medical community is in the dark ages with all things relating to Tick-borne infections. Many patients end up diagnosing themselves, a loved one, and even friends and total strangers after understanding the wide array of symptoms in someone else’s case.
For more on Lyme Disease: https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/