Tag Archives: lyme disease

Yo, Journalists!

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“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

When Lyme Disease Goes to the Heart

Carolyn and her dog x with the friends helping her get the xx treatment.

Carolyn with her pooch Betty and, from left to right, the friends who have banded together to help Carolyn get treatment: Mark Gordon, Jim Pettengill, Teresa Gordon, Bruce Hoppenworth, Marianne Antonelli, and Gary Antonelli. Not pictured: Maggie Gobie.
Photo: Randy Martinek

Lyme affects the heart in more ways than one. Just ask Carolyn Ross, who was loving the outdoor life on a Virginia horse farm back in 2007. Then ominous change came overnight.

She can tell you the day her health crashed: December 27. After a holiday party, flu-like symptoms came on, and a few days later she noticed a rash on her arm.

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Blackberry Cobbler

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Photo: LifeLoveLyme

I miss cooking, I really do. I used to prepare meals all the time—for friends, for my kids, just for myself. I’m not an amazing cook, mind you. But I love the process, from chopping and stirring to arranging everything on pretty serving dishes.

When Lyme hit and left me breathless with shock, I couldn’t stand up long enough to stir a sauce, much less haul my pain-riddled self up and down the aisles of the grocery store and stand in the check-out line.

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Video: Young Freeskier Makes Comeback Following Lyme Treatment

LymeLight – The Story Of Professional Freeskier Angeli VanLaanen Living With Lyme Disease from NEU PRODUCTIONS on Vimeo.

Considering that I can’t even walk my dog around the block right now, this story of an amazing athlete’s return to health was an especially great find.

Freeskier Angeli VanLaanen made this film because she wants others with lyme know that they are not alone—and that recovery is possible.

Click on “play” above to hear her talk about how she was probably infected with lyme disease as a ten-year-old girl by tick bites she got in Wisconsin; Angeli was misdiagnosed during many years of dealing with various symptoms.

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Video: “The Biology of Lyme: An Expert’s Perspective”

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.

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Video: Rachel’s Story: What It’s Like to be a Teen with Lyme

I like so many things about Rachel’s YouTube video, I hardly know where to start. She’s so earnest, so honest, so insightful.

The details she gives of life with lyme at 14 along with her perspective at age 20 reveals so much. Her juxtaposition of “then” and “now” is simply brilliant.

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Checking Facebook, Craving Face Time

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Two things in particular sustain me: natural beauty and friends.
Photo: LifeLoveLyme

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.

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Burning Feet

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.

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Do Ticks Survive Winter? Researchers Weigh In

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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.

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Babesiosis: Multiple Strains Complicate Diagnosis

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.

Symptoms can include fatigue, drenching sweats, muscle aches,  and nausea; the infection often begins with a high fever. It can also attack the spleen.  I got mine from a tick bite. People also become infected through blood transfusions. 

The thing is, if you are treated for Lyme but you also have this co-infection going undetected and untreated, your health won’t improve, as seen in a recent television program about a young girl in Maryland who wasn’t improving when treated for Lyme alone. 

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