On Leafy Yards, Summer Play, and Lyme Disease

I am surrounded by ticks.

No, seriously. And I’m not just talking about all the recent media coverage of ticks and Lyme disease, like this New Yorker article on Lyme disease, or the fact that I devoted a chunk of my recent book to Lyme disease, the controversy surrounding the chronic Lyme diagnosis, and the role of social media in this polarization.

There are deer ticks everywhere in my lovely neighborhood sanctuary. I have pulled ticks off my husband’s legs, my daughter’s arms, and have had them crawling across the lens of my glasses. Most of the neighbors on my street have had Lyme disease at least once, and a town social media message board frequently has posts about people getting diagnosed with it, or advice on how to prevent it.

I am so hyper-aware of them that my two-year-old climbed up on my husband’s lap and tilted his head back.

“Daddy, let me check your neck. Ticks really like necks!” she told him. On the bright side, at least I know she is listening and absorbing, right?

We do thorough tick checks as soon as come in and every night. I try to wear long pants or light colors as often as we can, and when she’s wearing dark pants in the grass I tuck them into her socks. I scour her thick blond curls and scalp. We use organic methods of tick control in our yard.

Not everyone who gets bitten by a tick knows it, or gets the telltale bull’s-eye rash. Symptoms of Lyme disease can mimic many other conditions, and there is a lot of debate surrounding the accuracy of the basic Lyme blood test. It feels like it’s everywhere here in New England, yet feels so inscrutable, too.

I am fortunate that we have doctors who have extremely low thresholds for testing for Lyme, and live in a community where it is very much part of the public consciousness. But still, even with information, awareness, and prevention strategies, I feel a little besieged when I step out into our leafy, seemingly peaceful yard. Misdiagnosed and/or untreated Lyme, chronic Lyme, and Lyme’s co-infections are nasty business. I don’t want to run to the doctor every time we have unexplained symptoms like achiness, fatigue, or swelling, but I also don’t want to take chances.

I thought it was a great time to link to the Q&A on chronic Lyme and Lyme’s co-infections I did with my friend, fellow writer, and chronic Lyme patient Jennifer Crystal. It’s definitely worth a read, as is her more recent recap of news coverage over at her blog, Touched By Lyme.

Tell me, readers, do you live in an area with a lot of deer ticks? Is Lyme disease on your mind all the time in these summer months? Have any tips or tricks to share?

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2 thoughts on “On Leafy Yards, Summer Play, and Lyme Disease

  1. Thanks for sharing! I live on the west coast and ticks aren’t talked about. Lyme? A silent epidemic! Out health department states We only get 10 cases a year. Yet in WA many suffer from Lyme and Co., and also from MS. There is a lot of talk in the very large Lyme community that some MS is likely un-diagnosed Lyme. Lyme is endemic in WA but not promoted like it is on the East Coast.

    I live and breathe lyme as do many of my friends.

    My 19 year old daughter has been sick since she was 4 and had imbedded tick on her head. When we took her to the Dr they removed the tick, put a stitch in her scalp and told us to watch for infection at the site. Never a word about the possibility of Lyme. Her symptoms began less than a year later and this once active, intelligent and precocious fun-loving daughter of mine slowly changed into a sickly kid who had to struggle to get up each morning and go to school.

    Fast forward to her sophomore year in high school. She was so sick! It took us over a year to find out what was wrong with her. She was diagnosed with everything from depression to constipation, ultimately, the great Dr’s decided she must be a victim of bad parenting. Her fevers caused by depression. I don’t know how many times I was told to just make her go to school, you’re enabling her illness. Yet in my heart, I knew something was seriously wrong, and that it wasn’t because of faulty parenting!

    She has Lyme, Bartonella, Babesia, Erlicheosis and Chlamidia Pneumonia. Tha saddest thing was that the lyme and co-infections had 12 years to grow and a case of Lyme that could have been easily treated and cured is now chronic. Because we don’t have Lyme in WA and because our health insurance won’t pay for her care we’ve spent all of our life savings paying for treatments. Some have worked ok, others not so much.

    She just finished a year of IV treatments, traveling back/forth to WA DC. We used her college fund to pay for it. Is she better yet? Not really. At times we get glimpses of what her life might look like should she recover. Then she will over-do it and have a severe relapse.

    She hasn’t been able to graduate high-school yet. Still has dreams of going to an Ivy League school.

    The biggest battle we are facing right now. Should she move back home after living with her older sisters for a only a month. She is miserable and has relapsed in a big way. Says she is too sick to live independently. Can’t take care of herself. I wonder if I should let her become back home, make her stay for a few months and see if she adjusts, or figure something else out? Is this separation going to help make her stronger? Make her more independent? If I let her come home am I failing as a parent and enabling her? Disabling her? Or am I continuing to be one of the few people who truly understand her illness and probably the only person who she trusts in regards to her healthcare and ongoing chronic illness?

    So yes, Lyme Disease is on my mind all the time!

    • I don’t know where my comment went, but I do want to thank you for sharing your story. It is so important to increase awareness that Lyme is not just an East Coast thing. I am so sorry to hear of all the struggles your daughter and family have experienced, and hope she is able to gain some stability and better health.

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