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 →
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.
If you’re like me, you want to know the latest scoop on what scientists are learning about Lyme disease. In this May 2013 interview we hear again from pathologist Alan MacDonald. (This interview is part 2 of a 3-part series, see the first one here). I’ve noted some key points you can jump to if you don’t have time to view the entire interview.
Meet Dr. Alan MacDonald. Okay, so he’s a little wonky when he goes into the scientific details—he’s a pathologist. But remember, those details speak to his credibility. And in this July 2013 YouTube video, he serves up some excellent big-picture explanations that we can all understand.
You might be surprised by some of the details he offers in a variety of areas, including these (keep your cursor on the bottom of the screen to keep minutes visible and zoom to these highlights):
what we can learn from syphilis as it relates to its “cousin” Lyme (4:00)
how Lyme infects just about any part of the human body (6:15)
what MacDonald found when studying the brains of people who had dementia (8:19)
how the current U.S. Lyme test is based on only one strain, although there are at least 100 known here—and more in Europe (8:28)
The ongoing work of dedicated researchers like Dr. MacDonald is critical to filling the holes in current knowledge about Lyme disease.
When I finally arrived at the door of a Lyme Literate Doctor (LLMD), I was surprised to learn that in addition to Lyme, I have an infection of the red blood cells called Babesiosis, caused by a tiny parasite.
As many of us know, Lyme disease identified and treated early means a quick road to health.
Left to invade the body deeply over time, Lyme and other tick-borne infections can be disabling—and even fatal. Treatment in those cases can be a long, expensive, and rocky road.
I should have been on the shortest path. I was treated based on a tick embedded in my hip, a rash, flu-like symptoms, and severe pain all over my body.
But when my test came back negative, my practitioner stopped the month of antibiotics that would have saved me from a nightmare that has been going on for three years now.
On Tuesday, members on the House side of Virginia’s General Assembly voted on a bill requiring doctors to tell patients that Lyme testing is inaccurate. So when I had the chance to join fellow Lyme advocates in Richmond the day before and help inform delegates, I grabbed my cane and pain medication and climbed carefully into a friend’s van.
Did you hear whoops of excitement from Virginia this week?
A history-making bill (SB971) that would require doctors to inform patients of the inaccuracy of Lyme testing is under consideration right now in my great state. I would have traveled to Richmond to support the bill in person, if I weren’t so ill with lyme myself.
Above is a video from YouTube of the January 29 debate in the state Senate earlier this week. If you are aren’t a hearing junkie, scan for the opposition’s argument, and fast-forward to these sections for compelling highlights:
[15:15] Senator Richard H. Black, who introduced this bill. When asked if consideration has been made as to how the bill could intrude on patient/physician relationships (many doctors oppose the bill), Senator Black replies respectfully, “I have tremendous faith in our physicians and I believe in their ability to do their jobs. I feel like in this particular area [Lyme disease] that this is a measure that would be of assistance and I think that it is something we owe to the people in the vast areas of Virginia that are afflicted by this.”
The Senator then cites incidence charts [21:15] and says that while his district is ground zero for Lyme in Virginia, other areas also have a very high incidence.