Virginia Governor’s Task Force on Lyme Disease 2010-13 and
Co-leader, Parents of Children with Lyme Support Network, DC Metro Area
“…The physician cannot rely on a laboratory test or clinical finding at the time of the bite to definitely rule in or rule out Lyme Disease infection, so must use clinical judgment as to whether to use antibiotic prophylaxis. Testing the tick itself for the presence of the spirochete, even with PCR technology, is helpful but not 100% reliable.
An established infection by B. burgdorferi [the bacteria that causes Lyme] can have serious, long-standing, or permanent, and painful medical consequences, and be expensive to treat. Since the likelihood of harm arising from prophylactically applied anti-spirochetal antibiotics [taking antibiotics to kill potential infection] is low, and since treatment is inexpensive and painless, it follows that the risk benefit ratio favors tick bite prophylaxis.”
-Dr. Joseph Burrascano, the longest-treating physician for Lyme in the U.S.
As the weather warms, there is justifiable panic in the question, “I just found a TICK on me, so what do I DO?!” Continue reading →
What a great idea. Identify and record the location of ticks you find, see what kinds have been found around you, and learn how to safely remove them. Check it out, and learn more at the foundation she started, by clicking here: LivLyme
Wow. My last post was 2018. So much has happened since then. And now I’m living in southern Maryland, with a view of the Chesapeake Bay. I can even see it when lying in bed (above), which is awesome since I still spend a lot of time in bed.
I think I might be well now except for a lot of stresses that set me back, and two tick-bites that may have set me back though we treated right away, my doctors did I mean.
I’m wondering about using my limited energy to blog again. Is anyone out there? Can I be helpful?
Something I’ll consider seriously in the coming days. Because we always have to prioritize, those of us with chronic illness. I do need more things to do lying down, though, so in addition to a book idea I have, perhaps I’ll return to this space regularly.
If you are reading this – I hope you are doing well on this day. I focus on one day at a time now, and I’ve gotten pretty good at not worrying about the future so much. Try it and see for yourself if you can find some peace that way.
I have been wondering lately if it’s just my imagination or if Lyme research and awareness are finally getting traction. Because funding has been pretty dismal historically. But the situation is improving bit by tiny bit.
When I discovered this on YouTube years ago, I sobbed as a happy young boy’s health disintegrated before my eyes because of Lyme and co-infections—and no appropriate treatment. I weep when I watch it today.
And I wonder if he ever recovered, because he’s extremely ill at the end of this video. The website for donations is gone. Did he make it?
So many thousands could tell similar stories of horrible illness, treatment hard-won, and improvements followed by crashing in an endless cycle.
Jean-Luc, I think of you often. You are my hero. Your courage has sustained me many a day.
I haven’t found the rest of your story online, but I hope the treatment you finally got has brought you to remission, and that you are out there fishing every day.
This graph is frightening: Our boys and girls are most at risk. I’m guessing that’s because they spend so much time exposed to ticks: playing outside, playing sports on grassy fields, and rolling around with beloved pets that may be carrying infected hitch-hikers.
Bear in mind these are the reported cases at the moment; many experts believe overall numbers are much higher due to under-reporting and testing that is 50% inaccurate. I bet there’s an update soon from the CDC’s current number of 300,000 reported cases year.
We need prevention, prevention, prevention—and we need solid diagnostic testing and treatment. What can we do? Raise awareness by writing local and federal government reps and newspapers. Take what we learn to our primary care docs. Advocate for research funding.
Kids should not be disabled, losing out on school, friends, family time, music lessons, sports, first dates, homecoming and more because of a preventable illness.
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. Continue reading →
Because I’m not merely “tired” when Lyme gets me in it’s grip, I’m far beyond that. Tired is what happens to well people who overdo. It’s what happens to heroines in Victorian novels who faint on chaises.
Isn’t there a better pronouncement for what happens to people with chronic illness—sometimes even when we do nothing at all?