Tag Archives: symptoms

Video: Shockingly Candid Story of Lyme Disease

Uncategorized, Video July 27, 2016 Leave a comment

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.

10 Things I Wish I’d Known About Lyme Disease

Co-infections, Lyme and the Brain, Lyme Basics, Prevention Tips, Symptoms: How Do You Feel?, Testing, Ticks: Where It all Starts, Tips for Family and Friends January 23, 2016 Leave a comment

IV treatment. Pills. More pills. I can't believe I made it through all that. When it could have been avoided...

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 →

Video: “Facts to Save Your Life” by Gabbi Hicks

Lyme Basics, Symptoms: How Do You Feel?, Tips for Family and Friends, Video April 29, 2015 Leave a comment

Look at this young woman. She looks pretty fine, doesn’t she?

Now listen to her words. Really listen. (Well, it’s kinda hard not to, she’s so compelling).  Continue reading →

Burning Feet

Co-infections, Lyme Basics, Symptoms: How Do You Feel?, Tips for Family and Friends March 7, 2013 Comments: 4

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.

Continue reading →

Babesiosis: Multiple Strains Complicate Diagnosis

Co-infections, Lyme Basics, Testing February 25, 2013 Leave a comment

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. 

Continue reading →

5 Ways to Help Others “See” Lyme

Lyme Basics, Mental Health, Tips for Family and Friends January 21, 2013 Comments: 14

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Actually, I’ve learned many people need a little help from me to truly see the pain.

Lyme is known as an “invisible” disease. That’s because oftentimes we look pretty good on the outside despite feeling myriad symptoms inside. And—unfortunately—many of us are darned good at keeping those symptoms invisible.

My own reasons include:

  • I don’t want those around me to worry.
  • Pride.
  • I don’t want people to know how sick I really am because I’m afraid they’ll abandon me.
  • I hate the thought of becoming that depressing person who is constantly complaining about how crummy he or she feels.

But I’ve come to see that a dose of reality is a good thing. When people understand the seriousness of this illness, they offer empathy and support.

Beyond that, we need others to know how serious chronic Lyme can become, so more people understand diagnosis and prevention—and stay well.

Continue reading →

Believing in Lyme When Looks Are Deceiving

Battling Isolation, Lyme Basics, Staying Positive, Tips for Family and Friends January 13, 2013 Comments: 5

Credit: Lyme Chick's Facebook page

Credit: Lyme Chick

“You look great!”

Many days, I wince when someone says that to me. I want to shout in frustration “I FEEL AWFUL!” And when I try to explain, I want to hear “I believe you”—not “But really, you do look great!”

I’ve felt hurt because even those closest to me don’t see my suffering sometimes. But I’m realizing it’s hard for them to believe how awful lyme can be if I don’t clue them in. Especially when it comes to pain. 

Not long ago, my longtime neighborhood book group got together for a potluck dinner. I was just getting to the point in my recovery where I could leave the house occasionally. So I said I’d love to come if I felt okay. Especially because they let me off the hook when it came to cooking a contribution for the table, which I knew I couldn’t manage.

Happily, I made it to the dinner. A few days later someone sent around a photo that included me. By the time I checked my email, a couple of others in the picture had piped up, making jokes about how the picture should have been photo-shopped…the usual chatter of people who hate photos of themselves.

I’m usually one of them. But I opened the file and had to admit I looked, well—great. Yes, great.

The thing is, I felt like hell on the inside.

Continue reading →

Video: Did You Know Ticks Can Transmit Lots of Infections—Like Babesiosis?

Co-infections, Ticks: Where It all Starts, Video December 10, 2012 Comments: 2

I’m very lucky to have wonderful neighbors. One of them, Marilyn, called me the other day to say she’d seen this segment of “Monsters Inside Me” on Discovery’s Animal Planet. It explores the case of a Lyme patient who was not recovering, and her doctor’s discovery that she had babesia caused by the parasite Babesia microti. Marilyn knows I’m being treated for Lyme and wanted to make sure I knew about this co-infection. She got the message: Lyme patients with babesia need treatment for that along with Lyme in order to recover. I’m also lucky to have a Lyme literate doctor who checked me for co-infections at the start because I had soaking night sweats, a key symptom; my treatment is going well. Babesia can also cause the spleen to rupture; read one patient’s story here. The good news is, babesia can be treated. But first it has to be diagnosed. Please, share this video to help get the word out. And if you want lots more information on babesia symptoms and treatment, see this video by Dr. Robert Horowitz of the Hudson Valley Healing Arts Center in New York. 

My Brain on Lyme

Lyme and the Brain December 7, 2012 Comments: 15

Lame brain, Jello brain... lyme brain. Credit: skpy's Flickr stream

Lame brain, Jello brain… Lyme brain.
Credit: skpy’s Flickr stream

There was a time when I thought Lyme disease meant a fever with other flu-like symptoms and a bull’s-eye rash lasting maybe a few weeks. Even when I read that these infections can cause problems with cognition, I didn’t really get it.

Early on as my mind faltered, I thought, “Damn, it’s really happening, I’m getting older and my brain just isn’t working like it used to.” Then I figured, “Wow, the pain and fatigue from this illness are really affecting my ability to think.”

My teenaged son would look at me like I was crazy when I’d forget something we were supposed to do together. I took him to the dentist on the wrong day, even though I looked at the appointment right there on the kitchen calendar a dozen times. On some days, my brain just could not take in information correctly.

I’d blank out on the names of long-time colleagues, or struggle to put together copy for an assignment that should have been easy after many years of writing professionally.

I’d turned 50. I thought the trouble was aging. Turns out it was my brain on Lyme. Continue reading →