When I discovered this on YouTube, 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 see it today.
Shame on the Canadian health system. He had to travel to the US for treatment. Not that it was easy to find a doctor here, either.
How many more victims of the Lyme controversy could make a video like this? How many more have lost their childhoods?
If he had been diagnosed and treated early, this video would never have been made.
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.
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
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
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.
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.
- 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.
abesia 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.
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 b
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