Staying grounded while recovering from Lyme disease
If you’re like me, you want to know the latest scoop on what scientists are learning about Lyme disease. In this May 2013 interview we hear again from pathologist Alan MacDonald. (This interview is part 2 of a 3-part series, see the first one here). I’ve noted some key points you can jump to if you don’t have time to view the entire interview.
Photo: LifeLoveLyme
After months of being severely limited by Lyme – worn out by an hour or two of daily activities and resigned to holding court on my red sofa for most of my waking hours – I am enjoying a period of respite from herxing between treatments as I build up my immune system for the next big round of IV antibiotics. Mind you, at the moment I still only have maybe a quarter of a tank of gas per day to run on, but that’s enough to get me a fraction beyond just the basics. It’s enough to allow me to drive myself to the weekend house all by myself on better days when I’ve planned well, which means an incredible sense of freedom. The first day, I settled in to read a stack of library books and a bagful of New Yorkers and simply…rest. But yesterday I was seized by the exuberance of the season and went to the hardware store to pick up a small shovel and hot pink petunias. Continue reading
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.
Everyone, everywhere should read these tips from experts at the International Lyme and Associated Diseases Society (ILADS), reproduced here from the ILADS website with permission.
Chronic Lyme disease patients may face a long hard fight to wellness. People with chronic Lyme can have many debilitating symptoms, including severe fatigue, anxiety, headaches, and joint pain. Without proper treatment, chronic Lyme patients have a poorer quality of life than patients with diabetes or a heart condition.
The fact is Lyme is a complex disease that can be highly difficult to diagnose. Reliable diagnostic tests are not yet available which leaves many—patients and physicians alike—relying on the so called “telltale signs” of Lyme disease: discovery of a tick on the skin, a bull’s eye rash, and possibly joint pain. However, ILADS research indicates that only 50%-60% of patients recall a tick bite; the rash is reported in only 35% to 60% of patients; and joint swelling typically occurs in only 20% to 30% of patients. Given the prevalent use of over the counter anti-inflammatory medications such as Ibuprofen, joint inflammation is often masked.
You’ve probably read that ticks carrying lyme disease and other infections can be the size of a poppy seed. Sure, you’ve seen the seeds adorning muffins. But this video PSA with Katie Seeley makes you stop and focus on just how tiny they truly are.
It’s important to know what you are looking for, so that when you check yourself or your kids for ticks, you’re looking as closely as humanly possible. Someone I know pulled a speck from his skin with tweezers thinking it was just a minute scab, until he looked at it up close and saw tiny legs waving at him.
Indeed, these ticks are so small that I missed the one that reinfected me when it first latched onto my thigh. Despite my fanatical body check (I was recovering from a previous infection, so believe me, I was motivated never to be bitten again), the infinitesimal tick eluded me until it had been embedded in my skin for a couple of days and caused some irritation…by which time it had transmitted its dangerous cargo, causing my health to crash again.
Remove an infected tick soon after it bites, and you may well never be infected. Seek proper treatment right away if you are infected, and by most accounts you will feel great soon. Miss the infection for some weeks, months, or years—and you could be in for a world of trouble beyond anything you ever imagined.
So check out this video, and mind Benjamin Franklin’s words: “An ounce of prevention is worth a pound of cure.”
Lymenade, which produced this video with And What Productions, is no more. But the group’s creative work to get the word out about the lyme epidemic lives on. Learn more in the videos following “Poppy Seed,” above.
And to see a New York Times video on how a tick sticks to the skin, click here.
LifeLoveLyme 