Beware Infection and Re-infection with Lyme

My friend Mickey gave me this magnifying glass cleverly disguised as a necklace. Note the thin tweezers for grasping the tick close to the skin, and the sesame seed next to the nymphal tick.               LifeLoveLyme

My friend Mickey gave me this magnifying glass cleverly disguised as a necklace. Note the thin tweezers for grasping the tick close to the skin, and the sesame seed next to the largish-sized nymphal tick.
LifeLoveLyme

 

 

Last week, I had just pulled out of my brother’s driveway in the gorgeous countryside on the outskirts of Middleburg, Virginia, when I felt an itch on my ankle. I looked down and saw a teensy tick clinging on by its mouthparts. Wrenching the steering wheel, I pulled over in a blind panic. Using my fingernails as tweezers, I grabbed it as close to the skin as I could and got it off.

Chanting “Be calm, be calm,” I got out of my car and scanned the parts of my body I could see. There on the back of one leg was a larger tick. I struggled with that one but got it off, too.

Making a U-turn like I was in a movie getaway scene, I tore up John’s driveway, jumped from the car and ran into his house. I shouted out what I’d found as I headed for the bathroom, stripping off my clothes as I went.  

         LifeLoveLyme

LifeLoveLyme

I know my skin well now, every mole, every freckle, every imperfection.  I didn’t find any more ticks, but the two bites I had were already an angry red, and a rash was spreading around one of them.

I stuck the ticks to a piece of tape. Back home, I’d pull out my magnifying glass and see that they were Lone Start ticks, known carriers of Monocytic Ehrlichiosis, Rocky Mountain Spotted Fever, and ‘Stari’ borreliosis.

Here’s why I panicked, even though I am still on antibiotics to treat my tick-borne illnesses (TBI). Several years ago, having come back from a long and terrible stretch bedridden with Lyme and other infections, I was finally back at work. I was still on antibiotics, still recovering and strengthening my immune system. But I felt so much better; I had a good bit of my life back.

So I got the idiotic idea to take a walk in a nearby woods on Labor Day to celebrate, to finally spend a little time outdoors. I was focused on pacing myself because of my severe fatigue; I figured I had the energy for 20 minutes.

And I felt elated walking in the grandeur of a chestnut forest. I’ve always felt peace from time in the woods. The trails there are well-maintained, with limbs cut back and a deep layer of mulch keeping weeds away. I felt safe.

I was very wrong.

I found that tick the next day, already engorged, already sharing whatever was in its gut with me. Was it infected? My Lyme doctor immediately put me on meds targeted to kill new infection.

Long story short: Despite my doctor’s best efforts, I relapsed. All the way back to out of work and bedridden. What a horror.

So with this bite,  I’m once again on a round of meds specifically to address any new bacteria or parasites. A week in, I’m not relapsing. A week in, I’m praying that my immune system has become strong enough this time to help help kill any new bacteria in my bloodstream before they drill down into my body to stay a long time.

My brother lives in horse country, where many horses and many people suffer with Lyme. Still, there’s a chance the ticks on me were not among the 50% around here carrying bad stuff. I’m holding my breath.

But wait, there’s more. My son, helping me get our home ready to sell, was painting a fence in the IMG_6754front yard last week. He came in and asked me to check him for ticks. When I pointed to a minute nymph on his leg, he scoffed. “No way, Mom, that’s too small to be a tick.”

There is no such thing as too small.

When I got it out with tweezers, I stuck the speck to a piece of tape and silently handed him a magnifying glass so he could finally see the tiny legs wiggling.

We got in to see the family doctor–the receptionist fit us in immediately, familiar with the risk of infection. And the doctor, who fortunately understands the high risk here in Northern Virginia, prescribed Doxycycline for 28 days. This doctor knows the preventative treatment is less risky than taking a chance of getting such a debilitating diseases. And he’s one of the doctors who knows there’s no sense waiting for test results, that immediate treatment is urgent.

That’s because current tests measure not the Lyme bacteria but antibodies created by the immune system. Those don’t show up for four weeks or more, and even then the test may not detect them. Hopefully a new test measuring the bacteria will be in wide release this year.

I know you are asking, “What the hell? How could this happen when you know all about Lyme?”

All I can say is, human nature is stupidly, dangerously optimistic.

Back in 2008, in our overgrown and shady back yard, I had my first tick bite. I had my first Lyme infection, complete with the bull’s-eye rash that only comes with about half of infections. I know it is out there.

But my son was painting a decorative little fence in a mulched flower bed out front, in full sun with few tall plants. We’ve all heard ticks like the woods, right?

That’s misleading. They may prefer the woods, but they are everywhere. They travel on rabbits, on mice, on birds. No place is safe here in Northern Virginia.

Given what I read, no place in the world is entirely safe from ticks except Antarctica.

I should have known better. My precious son.

I do pay someone to do the yard work, someone who takes the risk every day as his profession. I should have paid someone to paint my fence.

The good news is, we did catch the tick right away, and 99.9% of people treated right away are fine. I pray my son falls in that group. So far, he’s feeling good.

As for how I allowed myself to be bitten again, my though process was skewed. Was it stupidity? Was it lingering “Lyme brain”?

When my brother wanted to show me his flower garden, I hesitated because I had not brought my permethrin-treated knee boots (I usually keep them in my car). I had nothing to wear that was treated with the tick-killing chemical.

“But I’ll only be on the short mown grass on the lawn,” I thought.

Then I remembered that my Lyme doctor’s wife got a tick bite and Lyme walking across a few feet of grass to put trash in their garbage can.

And then, for reasons I will never fully understand,  I pushed that thought away and stepped out into his lawn, one of the stupidest things I have done in my life. I’ll never, ever make that mistake again, I tell myself. Meantime, I hope I don’t pay a steep price for my error in judgement last week.

My friend and Lyme-patient advocate Kathy is fielding many phone calls from people with tick bites asking what to do. I’m getting them myself and sharing what I’ve learned. Maybe this blog post will help someone be smarter than I am. Other than that small effort, I feel helpless to stop this health threat that’s exploding as I watch.

Kathy never steps off pavement, not even with treated footwear. You may be like me, and simply unable to accept that measure. But whether you have Lyme or are healthy as can be, please do all you can to protect yourself.

Treat your clothes with permethrin, or buy clothing already treated. Wear light colors so you can see any ticks on you. Check for ticks every time you undress. When you come inside, throw your clothes in the dryer for at least 20 minutes so any ticks will die. Don’t wear those clothes through the house; any ticks on your clothing could drop off and bite you later. Scrub right away in the shower; wash your hair.

Check your skin again. Especially behind the knees, your crotch, your head, your back. I don’t have anyone to check my back so I use mirrors. It can be done.

If you find a tick, find out what to do. If you need a Lyme Literate Doctor (LLMD) find one near you through the International Lyme and Associated Diseases Association (ILADS).

And here’s another tip: Carry a magnifying glass and pointed tweezers with you at all times. You never know when you might need them. But let me tell you from experience: Chances are good that you will.

 

 

 

 

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4 thoughts on “Beware Infection and Re-infection with Lyme

  1. Anonymous July 11, 2016 at 12:09 pm Reply

    Thanks for posting. This is quite an account. Our son and grandson both had Lyme and luckily they have a LLMD who pounces right away on tick bites and horrible diseases that threaten.

    • LifeLoveLyme July 11, 2016 at 12:56 pm Reply

      Luckily is right- I feel that way, too. So many doctors don’t know what they should.

  2. Lori Geurin November 9, 2016 at 2:25 pm Reply

    I’m so sorry you’ve been through this!

    I can so relate to the panic you must have felt discovering the ticks on you after being ill with Lyme before. I love being outside in nature, and now make extra sure I’m taking all the precautions possible to protect myself and my family. But despite all that, the ticks just seem to love me.

    I too became reinfected with Lyme and it was a huge setback for my health. Despite receiving additional treatments for the re-infection it set me back, nearly to the beginning.

    I became too sick to work and had to quit my teaching job — extreme and constant pain, forgetfulness, and bed-bound due to the extreme fatigue. I’m guessing you can relate!?

    I hope and pray you’re doing better these days.

    XO

    • LifeLoveLyme November 9, 2016 at 4:08 pm Reply

      I just posted about more new research funding, and answers can’t come soon enough for all of us! Don’t you just wonder if once infected we somehow put out a signal that makes us more likely to be bitten again? Considering how careful we are, it is pretty amazing. Then again, it is impossible to completely avoid ticks. I hope you got your life and career back, and if not, I hope you are better enough to find joy in life.

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