"Lick Me, I Taste Like Lime...wrong lime!"
This is Jonathan…or more precisely…Joker Jonny…He is definitely our family’s “class clown”. Always full of fun ideas, and ready with the camera to film whatever crazy stunt he’s dreamed up and convinced someone else to do! So full of energy and fun, it was strange when at the end of the summer he suddenly came down with a fever, sore throat, headache, body aches & a stiff neck. Especially strange because my kids aren’t often sick, and they’re NEVER sick in the summer time…there’s too much fun to be had!
But it was true, he was sick, too sick to join us on our trip to Plimoth Plantation…and that’s sayin’ something for the kid who is the life of the party!
But I had heard of a few other kids coming down with an end of the summer bug, so I didn’t worry too much about it. A couple days later, he had an enormous red spot on the back of his knee…looked like a spider bite…or a bullseye. Then the following day, he had another one on the side of his other knee.
He had been sick for 4 days, and nobody else had caught it yet…strange….
You see, in a big family, once one person gets sick, it’s time to load up on the Ultra Immune & Berry Well, and buy stock in Clorox wipes. One or two might escape unscathed, but whatever it is, it’s bound to make the rounds.
On day 4 I noticed that the spots really did look like a bullseye and they were much bigger. I called his pediatrician, but as it was Labor Day, no one was in the office. So I took him to the emergency room. After listening to the ER Doctor rant about never waiting 4 days to bring in a kid with a fever and a stiff neck (meningitis symptoms – which I had considered, but he wasn’t that sick, and the neck stiffness was only on one side, as if he’d slept on it funny) they ordered some tests and we waited. They took blood counts, blood cultures, and did a test for Lyme Disease.
The very words send shivers up my spine.
Our family has a bit of experience with that disease. My brother has had chronic Lyme for over 10 years. It went undiagnosed for years; he’s been denied disability, his insurance company has refused to cover treatment, and his doctor has been threatened with losing her license if she continues to treat him. He has had to switch to an out of state doctor just to get the treatment he needs. Once a vibrant active outdoorsman, he’s now a man dependent upon IV antibiotics, no longer able to work on a regular basis, or roam the rugged mountains that he loves.
Lyme is a very debilitating illness.
The emergency room doctor came back in and looked at Jonathan’s “bites” or “rashes” again. He said that although they were the classic bullseye of Lyme Disease, the chances of getting bit by 2 infected ticks at roughly the same time were like millions to one…odds similar to winning the lottery. Reassured that this definitely wasn’t Lyme, he drew a circle around Jonathan’s spots so we could track whether or not they spread and sent us home with the diagnosis of an unspecified virus with a viral rash, and instructions to follow up with his pediatrician the following week.
The next day his spots had clearly spread, I was regretting not drawing the circle around them and taking pictures the first day we saw them. And now his eyes were red & puffy as if he had a bad case of hayfever.
But the Dr. said it wasn’t Lyme…
Then my friend Susan called and asked to come over and see Jonathan’s spots, a couple of her kids had Lyme disease a few years ago, so she was quite familiar with it, and was worried about Jonathan. I am SO glad she offered to come over. She took one look at Jonathan and said, “That’s Lyme, oh yeah, sorry Buddy…8 weeks of doxycycline”. I asked about the fact that there were 2 spots and told her what the ER Dr. had said. Turns out that multiple lesions are not that uncommon, and you don’t even have to be bit by more than one tick to get more than one lesion!
More “facts” debunked…
I always thought that the bullseye rash appeared while the tick was on you, or shortly thereafter. Turns out that the bullseye lesions can appear weeks or MONTHS after a bite. This certainly made sense in Jonathan’s case, we had TERRIBLE ticks this spring (like March, April, early May), but NONE this summer…yet one more reason to love 50+ free range chickens gobbling up every bug they can find.
Nothing gets you an immediate appointment at a busy pediatrician’s office like saying “My son was in the ER over the weekend with possible Lyme’s Disease, and they instructed that we follow up with a visit to his regular doctor.” We got an appointment that same day. By now he had been sick for a week and still nobody else was sick….clearly this was not viral.
Thankfully Jonathan’s pediatrician was a bit more knowledgeable about Lyme than the ER doctor. He knew that more than one lesion was not only possible, but even probable at times. Based on his symptoms alone, and without waiting for the Lyme test to come back, he ordered 3 weeks of doxycycline. Three weeks? I thought it took 8? Jonathan’s Dr. reassured me that the standard of care was 2-3 weeks, but given that I had a brother with this disease, he ordered the 3 weeks to set my mind at ease.
I was not convinced.
One thing I knew about Lyme was that if you catch it early and treat it aggressively it IS possible to cure it. But left unchecked, or undertreated, it comes back to bite you and is almost impossible to get rid of. One other thing you need to know about me…. I am not the Mama in there asking for antibiotics for every sniffle or cough…quite the opposite in fact! I try the natural route as much as possible, letting things run their course, I see antibiotics as a final course of action AFTER everything else has been tried, including good old fashioned chicken soup and just waiting for it to go away on its own. This does not work with Lyme…
Let me repeat myself…THIS DOES NOT WORK WITH LYME!!
If you let Lyme run its course, it becomes nearly impossible to cure, and your best hope is to just manage the symptoms while you pray for a cure. Except that nobody is really studying it, there are no big foundations, nobody is trying to turn facebook green for a week to raise Lyme awareness…its victims just quietly suffer while battling for insurance and disability coverage, and sometimes even just a doctor who can treat them without the threat of losing their license.
So I went home and did some research. I knew my sister-in-law had studied it thoroughly over the years that my brother has had the disease, so she was my first contact, my resident expert. She directed me to the website of Dr. Burrascano, the leading Lyme doctor in the country. He has a 37 page treatment guideline available as a free download that recommends 8 weeks of doxycycline…not 3 weeks…8 weeks.
In the meantime I had also posted on facebook a prayer request for Jonathan, and the Lyme stories started pouring in…several of my friends had battled Lyme with varying degrees of success, and the running theme among all of them was that 3 weeks is not enough, and it might even take 6 months! They also were gracious enough to give me the names of several Lyme literate doctors in the state.
So, I wrote a letter.
I printed out Dr. Burrascano’s treatment guidelines, and included the names of the local Lyme literate doctors, along with a plea to extend Jonathan’s treatment for the full 8 weeks. I put it all in an envelope and had Randy deliver it to Jonathan’s doctor the following day. You know you have a good pediatrician when he READS what you send him, RESEARCHES FURTHER on his own, and CALLS YOU BACK, even though it’s 7:30pm on a Friday. He agreed to the longer term of antibiotics!
You hear a lot about taking charge of your own care, being an advocate, but does it really work? Yes it does. Nobody, not even the best doctor in the world is going to care for your kids as much as you do. So it’s important to do your homework, write the letters, make the phone calls, and keep it positive! State the facts, give documentation…not just, “I read on a website…” Recognize that your doctor cannot be an expert in everything, so don’t hesitate to ask him to devote some time to studying something a bit further.
Jonathan has been on antibiotics for a week now, and we’re beginning to get glimmers of our light-hearted, teasing, annoying big brother back…we’ve missed that. But then partway through the day, he’s just spent, his body aches, his mind is fuzzy, and occasionally he gets tingly all over, like when your foot falls asleep. When I kiss him in the morning, sometimes I jokingly say “Yummy! Lyme!” and his siblings have come up with all kinds of nicknames for him like “lima bean,” “limestone” and more. Jillian came up with our new mantra…When life hands you limes, just rearrange the letters and return a smile.
The meds make him sensitive to sunlight, so we’re thankful that this happened at the end of the summer and not the beginning. Last weekend we went for a hike early in the day while it was still overcast, and he said he felt weird afterward, his skin felt ultra sensitive, like he was sunburned even though he wore long pants & a hat. We tease him about being a vampire now…but it’s no joking matter.
We are praying and believing that the meds will bring about a complete cure for Jonathan, but every once in a while, my mind jumps and I see how this terrible disease has the potential to rob a very high-spirited boy of his amazing future, and that would be a tragedy indeed. Our world needs more Jonathans, his fun-loving spirit is infectious, and I know God has great things planned for him!
I share our story in hopes to raise awareness about Lyme Disease.
It’s a relatively new disease that not much is known about. If you lead an active outdoor lifestyle, you need to educate yourself about it. Know the signs, symptoms, and treatment options. Below are links to learn more about it and a petition to update the standard Lyme treatment protocols that are outdated and likely ineffective. If you live in NH and need the name of a Lyme literate doctor, let me know, I’ll be happy to pass along that information.
This disease strikes so suddenly and can have such devastating long-term effects that people need to be aware of the symptoms. At the very least, please, sign the petition, let’s get those treatment protocols updated, and pass along Jonathan’s story to everyone you know. People need to know what symptoms to look for!
Some helpful links: