Our Experience with Lyme Disease

My blog has never been a glossy or polished place where I try to make our lives seem perfect. At the same time, I feel like sometimes I end up telling the world far too many of our family’s problems. I feel vulnerable and even stupid for certain mistakes. And I really thought about not sharing this chapter, but I figured if I could help anyone avoid what we are experiencing -- good.

So, here it goes.

We live in upstate New York and frequently travel to Pennsylvania and New Jersey. And we LOVE being outdoors. As a result, we know all about ticks and Lyme Disease. If you don’t live where this is a big deal, feel free to skip this post (and thank your lucky stars!). Anyway, we check Ada for ticks daily, head to toe. So, when Ada was diagnosed with early disseminated Lyme earlier this week, we were completely blindsided. I mean, jaw-dropping, what-the-hell-do-you-mean, I’m-the-worst-mother-ever sort of shocked.

It all started a couple weeks ago before I headed home for the Laurel Festival. Ada had a low-grade fever for a couple days. I was worried she might have a virus or even strep. We always have to be careful with strep because my dad had open heart surgery to replace his aortic valve several years ago. Getting that strain can have deadly consequences for him. I had planned to take her to the doctor to rule it out before our trip when the fever vanished overnight.

My parents picked me up and we enjoyed our stay, only to have the fever come back when we returned home. It was low. Usually around 100.1, but ranged between 99 to 101.5 or so, and when we returned home, I figured it had been six days. Ada was also being somewhat irritable for a couple days, but otherwise completely healthy. We took her to her primary care doctor to start the investigation. Nothing showed up on a multitude of tests. 

But our doctor did mention the possibility Lyme. She said if Ada’s fever didn’t go away, we should return for a blood test. The three of us noticed a bit of redness on her scalp, so we were told to watch that, too. Of course, I immediately didn’t think that could be the case. We check her skin nighty and run our fingers through her hair, and I’ve never seen a tick on her little pale body.

It’s funny when you fixate on something for long periods of time. Like, I had this substitute teacher in high school who would always introduce himself by handing out pamphlets about the dangers of Lyme Disease. He was a long-time sufferer, and it had such an impression on me. A tiny tick bite can cause debilitating symptoms, sometimes with little notice. Where I grew up, the prevalence isn’t terribly high, so we thought this guy was a bit of a nut-case. Since I’ve grown and moved east, our doctor says around 40 percent of ticks carry the disease. When we visit NJ, the rate might be even higher. And ticks carry other sorts of scary, even fatal diseases as well.

Fast forward to Monday night after bath time. Ada had been fever-free for a week and the redness on her scalp had faded almost immediately after our doctor visit. We thought we had dodged some major bullet. Obviously she had just had another one of the hundred viruses we’ve jumped the gun and taken her to the doctor for. And then Stephen said “Uhhhhh -- you need to get up here. NOW. Ada has a rash over her entire body!” Cue the freaking out. Big and little round blotches were on her arms, legs, and trunk. Her cheeks were bright red, and this all just showed up after being in lukewarm water.

We ran over to the walk-in just minutes before it closed. The nurse practitioner wasn’t worried -- the rash was already fading the longer she had been out of the bath. But she said given our history of the mystery virus, she wanted to check with the on-call doctor. When the doctor came in, she sort of nodded and didn’t say much, they went out to the hall to talk, and we were promptly given a course of antibiotics “just in case” and a lab sheet to get a blood draw to check for Lyme.

By now, I was completely dumbfounded.

How could this have happened on my watch?

Last night I got a call from Ada’s usual pediatrician with a message that the results were in + we needed to chat. It reminded me a lot of her tone when Ada’s MRI results came back and meant brain surgery. I knew immediately that Ada had Lyme. I called her back and we spent a good 20 minutes talking about the stage the disease is in (basically we caught the early disseminated form in its earliest days -- because we didn’t see a bullseye, and not all people see the initial rash), the treatment plan (low dose antibiotics for SIX weeks), and anything we should look out for.

I told her I feel like a complete failure because I never saw a tick -- and I was looking! She said we did the best we could do by being so proactive about bringing her to the doctor. Apparently out of the four years she has been in our area, this has been the absolute worst for Lyme. I also told her I’m afraid to go outside again. She said we cannot live our lives in a bubble. We caught this early enough that Ada should have no long-lasting effects. Kids apparently don’t suffer the same fate as adults, and they typically have lower rates of post-treatment complications. 

So, now we watch and wait. And we arm ourselves with information to keep this from happening again. At the same time, I will admit the stuff I have come across online makes spotting ticks seem so easy. Ada has a lot of hair, and I’m almost certain that must be where the tick was hiding (after all, we did see the slightly red area at the doctor the first time around). The doctor said it’s possible the tick hadn’t been attached particularly long and that the 72-hour rule you hear isn’t necessarily how long it takes to contract the disease.

Anyway, if you live in a Lyme area, check, check, and check some more. Many people get Lyme without ever seeing a tick, so pay attention to any weird symptoms like on and off fever/flu with no explanation. Weird rashes. In children, irritability is another sign. The list goes on all the way to swollen joints, face paralysis, and more scary stuff I’m trying not to think about.

I look back on that high school substitute and now think he wasn’t so crazy. In fact, I thank him. Now I’m going to carry on that tradition of letting people know that this disease is no joke. Not all ticks carry Lyme, but if you ever suspect anything is out of the ordinary, get in touch with your doctor ASAP.

Have a safe and happy 4th of July weekend!

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Terrible Tuesday

MY KITCHEN.

Full disclosure: This photo is from days ago, but it looks very much the same on this sunny Tuesday afternoon. What that means is good stuff for you all, but we have loads of dishes to do by hand and in the washer tonight. It doesn't help that I have a bad habit of getting a new water glass every time I get up.

We all have our quirks, right?

I had planned to share with you a roasted sweet potato + black bean burger recipe today. Someone (cough, cough) ate the last one before I got the chance to photograph it. You may think I'm referring to Stephen in a coy way there, but I am -- in fact -- referring to myself.

So, I'll post the recipe tomorrow with lovely photos because I'm making these burgers AGAIN tonight. They are seriously that good. For now, here's the pre-cooked view of all the black beans + roasted sweet potatoes + walnuts + oats + spices and even more healthy, hearty deliciousness.

I think they'd be great for freezing, too. Double quadruple batch maybe? I'll try to throw in a dessert for making you wait, too.


I wrote about my weird lightheadedness issues yesterday. I feel totally normal besides having these strange moments of cloudy funk. However, the soonest I could get an appointment with a new GP was the 24th, so I decided the whole thing warranted a trip to the walk-in clinic. I hate feeling sick, weak, and otherwise shut-in -- especially when the cause isn't clear-cut.

Everyone was encouraged to wear a mask due to the recent flu issues around the area. (Making my best crazy eyes face there.)


In the end, my issue isn't sinus or ear-related. The doctor suspects anemia. I got three deep red viles of blood taken and should get the results tomorrow. I used to hate having my blood taken, but after enduring the 3-hour glucose test during my pregnancy -- it's a piece of cake. Fingers crossed we'll figure it out soon and/or the feeling will just stop.

I am ready to be back to my old self, please. Ready, too, to get out there and run some of the Freeze 10K series that I am dearly, dearly missing in all this madness.

Maybe this isn't such a terrible Tuesday after all. Just a busy and somewhat uncomfortable one. I've written over on Writing Chapter Three how I feel totally enthused to make 2013 the best year yet. I am hoping it's infectious, if you need some spunk.

Enjoy your afternoon! And if you're also on Day 3 of the Sourdough Experiment, don't forget to feed your starter!!!

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Where I've Been

Hi. I sort of disappeared on you. I have more news in the ear saga . . . and I've now almost completely lost all faith in health care. If you don't know what I'm talking about, I went to the doctor on Monday with annoying excess ear wax. He told me to use drops (Debrox) and come back to get my ears cleaned on Friday.

On Tuesday night, I ended up going to the ER at 11 PM because each time had I used the drops, they wouldn't come out of my ear for 3 or 4 hours. They were starting to hurt. They made me dizzy. And I was having a slight panic attack because the combination of spins, not hearing, ringing, and sort of claustrophobic feeling was really getting to me.

The physician's assistant on duty was even worse than my doctor on Monday. Actually, she was the same one we were extremely unhappy with when Ada was sick and we had to go to urgent care a few months ago. At first, I only slightly recognized her, but as she continued "caring" for me, I soon remembered.

Anyway, she very harshly explained that I needed to get over it and just keep using the drops. She said it was perfectly normal for them to stay in for hours. She very rudely asked me "well, what do YOU think -- that they'd work if they just came out?" Well. The package says to tip your head so they will come out, so -- uh -- yeah, that's what I thought.

Furthermore, she couldn't clean out the wax because it was still too hard/impacted (ew). But there wasn't any infection, thankfully. Basically, I waited there for several hours to only be told to get over it, to ignore the discomfort, and go home.

Wednesday came. I decided to be brave and use the drops twice more as directed. They were stuck in my ears almost all day. They elicited more pain each time I used them. It was absolutely terrible. Stephen stayed home with me because caring for Ada is difficult when I can't hear out of one ear, when that ear hurts, and when I'm a combination of dizzy/nauseous.

It was a hellish day, but I decided enough was enough and that I'd go to a walk-in to get them cleaned out on Thursday. It would all be over soon, despite how I hate the idea of getting my ears cleaned out. I just wanted the whole thing to be over. I couldn't function all week.


So, Thursday. My parents came over to help me with babysitting, etc. My dad went with me (driving is hard when you're dizzy, too -- go figure!) and we waited an hour to get in. Finally I got a nice physician's assistant who immediately told me that there wasn't any wax in my ear. At all. Weird.

Oh, yeah. And . . . I now have an ear infection and a bad case of . . . swimmer's ear.

Hmmm. I wonder how THAT happened! Could it be that those drops staying in my ear for hours wasn't such a good thing after all? You know. The entire reason I went to the ER? Ugh.

So, I basically made myself sick this week while following doctor's orders. I haven't been on antibiotics in years and years. I can't even remember. Now I'm on a Z-pack and medicated ear drops (that thankfully come right out when I tip my head over). I freaked out a bit about breastfeeding, but my lactation consultant (SHE IS ABSOLUTELY AMAZING!) gave me the OK to continue. At least something went alright in this whole thing.

Have you ever had an extremely bad experience with your medical care?

While I was pregnant, I loved my midwives. They listened to my concerns. They validated the feelings I was experiencing. If something seemed off to me, they wouldn't shut it down with a "this can't happen" or another black and white response. They trusted that I was conveying things that had importance in the situation.

Now, I'm left feeling like I can't trust anyone, that no one listens to me, and that I will never find a care professional for myself (OR for the rest of my family, for that matter) that I can feel comfortable with again. I liked my PA at the walk-in, but he doesn't take regular patients. So frustrating!

I apologize if this seems like a huge rant. Well, forget that word "seems". It is a huge rant. I just can't believe that this could have been avoided somehow. I don't know exactly where in the chain it would have been made different, but obviously something went wrong.

Here's a new vocab word for you all:

i·at·ro·gen·ic: Adjective; Of or relating to illness caused by medical examination or treatment.

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Monday. Oh, Monday.

I'm had a terrible day. Before I get into it, I'm declaring this week mini-makeover week. There have been some things I've not written about in a while -- for example, my sugar addiction -- that need some attention. And some change. From head to toe. So, I'm focusing my real-life week on these items.

Why not blog about them, too?

Alright. Some weekend stuff. I dyed my hair. Well, attempted ombre highlights with an at-home kit (this one) -- and it worked pretty well!

We changed up Ada's nursery. Her tree mural fell down weeks ago, so we replaced it. I love the new look. You can see more on Writing Chapter Three.


I ran with my favorite running buddies on Sunday. Funny how last Monday's solo 9-miler was excruciating at a 9:16/mile pace. We ran yesterday's 11-miler at 8:45/mile and it felt great! The power of running with friends always amazes me. (PS: Just started week 9 of the 12 week half training plan!)

And after the awesome run, we went to our favorite kid's museum for some fun. Ada's a little young for a lot of the exhibits, but as the weather gets colder, it's going to be nice to have somewhere to go on a Sunday afternoon.

Cabin fever definitely sets in starting in, well, October.


Now why my day has been terrible. Have you ever had too much wax in one of your ears? If you haven't, you're lucky. If you have, it SUCKS, right? Well. More than that for me. My ears have always been sensitive. I had two sets of tubes placed from having too many ear infections as a baby. I never even put my head under water.

Anyway, I have too much wax in my right ear. Ick. This story could go on for ages. Basically, I went to the world's most insensitive doctor today. He gouged around with a sharp instrument, which I've had done before -- but never, ever this roughly, after I told him about my sensitivity issues . . . and then he almost scolded me for being timid and nervous while he dug.

He ultimately told me I needed to use ear drops for a while and come back to have them flushed. I won't be going back to him, by the way. He was seriously rolling his eyes and shaming me for feeling a little scared. Yeah. I am scared! Anyway, I used the drops this afternoon . . . and then they wouldn't come out of my ear! They were stuck in my ear for over an hour and hurt, making me super dizzy, etc.

The worst part is that I have to do it again tonight. So, after I finish dinner, I'm off for round two of this horrible ordeal. I understand that having the whole ear flushing thing isn't torture for most adults, but getting absolutely no understanding from the doctor made it 10,000 times worse. Obviously, I need to find a new one -- and fast!

Besides my ears, I'm pretty brave whenever I need medical procedures done. From needles to giving birth without drugs. But when it comes to my ears?! AHHHH! Do you have a weird quirk like this, too? I can't be the only one!

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