“All the news that’s fit to print”? Then why isn’t there constant press coverage in the NYT and every other news outlet about Lyme and other horrific diseases carried by ticks? Where’s the reporting about the lack of proper diagnosis and treatment and the latest research results?
We’ve asked this question thousands of times. We have plenty of topics: Raising awareness. Emerging science. Suffering patients. Impacts on families, businesses, the economy.
Just recently I heard yet another story that should be told, about a group of boys in my area who found a way to connect with each other. These young kids have been housebound, some for years. Continue reading
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.
Two things in particular sustain me: natural beauty and friends.
For a long time now, I’ve been in a place where viewing the lives of friends through the window of Facebook is incredibly painful. What’s wrong with me? Why can’t I just enjoy the happy happenings of others instead of being overcome by my own piercing grief, frustration, and regret?
I checked my page today and saw a lot of posts from folks, many of whom I have not seen since I got sick. They’re experiencing all kinds of major life events. Meanwhile I’m facing major limitations.
I’m pretty sure most people around the world who aren’t living with Lyme think the symptom list is this simple and straightforward:
- bull’s-eye rash
- flu-like symptoms
And I reckon that this false belief is a major reason persistent Lyme disease continues to be missed in people with a wide range of complaints physical, cognitive, and emotional.
I know, ugly photo. But it shows the flowerbed in my backyard where I got a tick embedded in my hip one summer. And a bull’s-eye rash soon after. And pretty soon was very, very ill.
As you can see, my garden is in a sad state these days. Last summer and fall I was too sick to clean it up—and besides, I was very afraid of the danger lurking there.
I said to myself, I’ll feel better in the winter. I’ll get rid of the dead things when the ticks are gone.
Flash forward to the middle of winter. Someone in my support group reported that she’d just come inside her house and done a complete tick check—in January. In Virginia.
And found a live deer tick. We were shocked.
I’d assumed that once temperatures dipped below freezing, ticks were done for ‘til spring. Now I know otherwise.
Here’s what I found out.