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.
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 →
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.
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.
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 →
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