My friend Mickey gave me this magnifying glass cleverly disguised as a necklace. Note the thin tweezers for grasping the tick close to the skin, and the sesame seed next to the largish-sized nymphal tick.
Last week, I had just pulled out of my brother’s driveway in the gorgeous countryside on the outskirts of Middleburg, Virginia, when I felt an itch on my ankle. I looked down and saw a teensy tick clinging on by its mouthparts. Wrenching the steering wheel, I pulled over in a blind panic. Using my fingernails as tweezers, I grabbed it as close to the skin as I could and got it off.
Chanting “Be calm, be calm,” I got out of my car and scanned the parts of my body I could see. There on the back of one leg was a larger tick. I struggled with that one but got it off, too.
Making a U-turn like I was in a movie getaway scene, I tore up John’s driveway, jumped from the car and ran into his house. I shouted out what I’d found as I headed for the bathroom, stripping off my clothes as I went. Continue reading →
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.
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It was definitely a bummer seeing all the things crossed out on my kitchen calendar.
I heard an excellent idea from a former Lyme patient who now makes her living helping others manage all the ins-and-outs of this disease. She suggests ditching pens for pencils when it comes to writing down calendar entries.
Because back when she was ill, she started noting social events and appointments in pencil. That way, she says, if she had to cancel something, she could erase it and move on. She didn’t have the stress of seeing her calendar filled with all the thing she crossed off because of Lyme.
That’s an idea we can all use as we move into 2013. In the past few days alone, I have had to miss the funeral of a friend’s mother, pass on my wonderful brother-in-law’s major birthday celebration four hours away in New Jersey, and cancel a reunion lunch with a dear family friend.
At least when I look at my kitchen calendar now, I’m not reminded of all that, and can look to the next week with a fresh outlook.
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.
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I’m wiped out this afternoon. I started a new antibiotic, and the escalation has begun on all fronts: pain and numbness in my legs; a flu-like, all-over sick feeling; ringing in my ears; and hit-by-a-bus fatigue.
When antibiotics cause herxing and my symptoms ramp up, I turn to some tips that help soothe me so I can get through the day.
- Epsom salt baths. I toss 2-3 cups of Epsom salts into a hot bath and soak for at least twenty minutes. The difference can be quite dramatic for me. Note: I did learn the hard way that applying lotion or oil afterwards isn’t a good idea; my pores were open and easily irritated.
- Heat. Hot baths and warm clothes are good, and I have several microwavable heating pads that conform to my legs and provide much-needed relief. Heat lamps like those used by acupuncturists feel wonderful on high-pain herx days.
- Burbur. This extract made from the leaves of the plant Desmodium molliculum is reputed to promote detox, and many lyme patients, myself included, report that it reduces their herxing. Ask your lyme literate doctor about dosages and whether it is appropriate for you.
- Tea with lemon. I’ve heard that lemon is a great detox, so I add it to tea or plain water, and while I’m at it I grate some delicious fresh ginger to reduce inflammation.
- Diet. Don’t let feeling awful be an excuse for eating poorly. On herx days, I double my efforts to avoid foods that cause inflammation like gluten and the nightshade vegetables (including tomato, potatoes, and alas my favorite, eggplant). Juicing gives me an added boost of nutrition.
Be sure to let your physician know if your herx is severe. Some experts say herxing can be dangerous, and set back recovery—so backing off on meds or antimicrobial herbs could be important.
See more on the Herxheimer reaction here.
- Lyme is a roller coaster. Your friend or family member may make plans, then cancel at the
Credit: Courtney Fox
last minute because they’re suddenly overcome by illness, fatigue, pain—or an array of other symptoms. They are not blowing you off; in fact, they are probably intensely disappointed. Let them know you’re happy to reschedule.
- Lyme is debilitating. Imagine how frustrating it would be to find yourself unable to walk to the mailbox in front of your house, fix meals and empty your dishwasher, or drive yourself places. You can make a huge difference by offering help with a task or two.
- Lyme symptoms can be invisible. If you find yourself thinking, “My friend looks terrific,” catch yourself. Here’s the key: Ask, “On a scale of 1-10, with 1 being terrific and 10 the absolute worst, how are you doing today?” The answer may surprise you.
- Lyme hurts the bank account as well as the body. The sad fact is that insurance often doesn’t fully cover treatment for this disease. And Lyme patients lose income if they are too sick to work. Be sensitive to that; your friend may be spending every penny on getting well, with none left over for a movie or meal out. Suggest free things, or make clear your plan to treat.
Lyme makes eating a challenge. Some patients suffer stomach trouble from tick-borne infections and/or medications used to treat them. Plus, certain foods actually increase the inflammation at the root of their pain. Nutrition is key to healing. Your friend or relative will be so grateful if you get them a gift certificate for carry out or offer to make a meal—and ask which restaurants/foods are the best choice.
For more insight, you might want to read some of these posts – or just browse around yourself using the categories search on the right.
5 Gift Ideas for Someone with Lyme
5 Ways to Help Others “See” Lyme
Believing in Lyme When Looks Are Deceiving
and here’s an essay from Spirochick addressing an interesting disparity: Empathy: Cancer versus Lyme
For the latest news and research, visit www.facebook.com/LifeLoveLyme.