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 →
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.
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.
I lost a relationship to Lyme. As I’ve learned since, Lyme has ruined many relationships and marriages.
The year we met was wonderful. He was smart, funny, sweet, and kind. Best of all, he said “yes” to everything, from new foods to foreign films to travel. He taught me about sailing; I shared my love of cycling. Over a couple of years we grew close.
Then came the beginning of the end of us. When he won tickets to Paris and we arrived full of plans to explore La Ville Lumière, suddenly I was so tired that I didn’t couldn’t keep up. My customary joi de vivre was flagging along with my body. We thought it was jet lag or flu. Continue reading →
My name is Daniel. I am 21 years old and I have chronic Lyme with multiple co-infections.
I am writing to you today asking for your support. As you may know this is election year for us here in the States. Many issues are discussed by the candidates but one issue is missing from their platforms. The controversy of chronic Lyme. The fact that hundreds of thousands are sick and go without healthcare coverage is sickening and needs to change. That is why I put this petition together. I am hoping that this gains enough signatures to bring awareness to this topic. I mean how awesome would it be for a candidate to finally stand with us and have Lyme be apart of their platform? This is a big opportunity. So, the time has come to make a decision. Are we in this thing alone or are we in it together?
That’s the little portable pump for my IV drugs. Then there were the pills. More pills. Harsh meds that made me sicker so I could get better. I can’t believe I made it through all that. When it could have been avoided…
It’s 2016, and I’m finally climbing out of the Lyme hell I fell into blindly four-and-a-half years ago. If only I’d known more, sooner.
Maybe I can help someone, somewhere, by offering a few things I was shocked to learn. Frankly, it is damned hard to pick just 10 things. But here goes: Continue reading →
Don’t be put off by the science lingo—click on the image to download and play a Powerpoint of the nanotrap at work. Cool, right? Courtesy of Dr. Lance Liotta, George Mason University.
Several years ago after gardening in my suburban backyard, I found a deer tick attached to my hip. Then came a rash. And then I started hurting all over like I was getting the flu.
I wasn’t surprised when my nurse practitioner examined me, diagnosed Lyme, and prescribed antibiotics. I should have been lucky. I had the bite with the beast still attached, in the middle of the classic target rash. I felt like I was dying of flu-like aches and pains.