by Jennifer Crystal
Heat can take a toll when living with Lyme disease
Summer is usually a time for celebration, relaxation, and fun in the sun, but 2020 presents special challenges. Due to the pandemic many summer camps, water parks, and public swimming pools are closed. Families are therefore scrambling to find ways keep themselves entertained and cool.
This is a dilemma Lyme patients have faced for years. Summer can be a dreaded season for Lyme warriors, and not just because ticks are out in full force, It’s because some patients are not physically capable of doing the summer activities they enjoyed before their illness.
Moreover, heat takes a toll. Extreme temperatures can exacerbate Lyme inflammation, causing overheating, headaches, dizziness, an uptick in joint and muscle pain, and increased fatigue. Spirochetes (Lyme bacteria) can’t handle high temperatures, which can be a good thing, but when they die off at a more rapid rate than a patient’s body can eliminate them, the result is that the patient experiences a Herxheimer reaction.
Another issue for Lyme patients is that some antibiotics cause phototoxicity—this means you can’t go into the sun. I tried breaking this rule once and it felt like my face was on fire. Even if you’re wearing UV-protective clothing, hat, and sunglasses, you’ll still burn, and believe me it’s not worth it.
Finally, patients who receive intravenous antibiotics through a PICC line can’t get the catheter wet. One drop of water in the line can run straight to the heart, with dangerous consequences. You can wear a special plastic sleeve when your arm is near water (doing dishes, for example, or taking a bath with that arm hanging out of the tub), but swimming is a definite no.
With all of these limitations and complications, how are we to keep cool this summer? Here are some ideas:
- Kiddie pools: You don’t need kids to get a kiddie pool! In fact, so many people have ordered them as a way to safely swim apart from others this summer that for a while they were out of stock. Friends with yards report that it’s now easier and less expensive to find these pools online than it was at first. If you don’t have a PICC line, you can get an inflatable pool that allows you to almost fully submerge yourself and if you can’t be in the sun, you can set the pool up in the shade—just be mindful of ticks! Plastic baby wading pools are great, too, for either sitting in or soaking your feet. These smaller pools are safer options for patients with PICC lines. One friend set up an outdoor table inside her plastic wading pool. Her family was then able to keep their feet cool, dine, and maintain a safe social distance.
- Do it yourself “pools”: If you’re not able to get a kiddie pool, you can still sit outside, in the shade if necessary, and soak your feet or hands in cold water using buckets, bowls, or large plastic containers. Dunking your ankles is a great way to cool down, and the water won’t get anywhere near your PICC line (you could even set up a bucket for the opposite arm). A note to caretakers, setting up these “pool” options for patients is a great way to help out, since doing so may be too physically taxing for them.
- Spray fans: These are fans attached to spray bottles that you fill with water. They are inexpensive and can be ordered online. You can mist your face or any other part of your body.
- Cooling towels: Sporting goods stores sell special chamois towels that, when wet, are designed to quickly cool down “hot spots” like the back of your neck, forehead, wrists, and ankles. A bonus is that the towels are small and dry quickly, so you can use them indoors. You can also do it yourself by soaking washcloths in cold water to create a cool compress, or even just running your wrists under cold water in the sink.
- Sprinklers and hoses: Remember running through these as a kid? As a Lyme patient, you may not be up for running, and you need to be careful that a moving sprinkler doesn’t hit your PICC line. But set up correctly, with a sleeve on your arm, you can simply stand under a sprinkler, dab your feet in it from the comfort of a chair, or run a hose over your legs and feet. Again, just be sure you are taking good preventive measures against ticks, too.
- Smoothies and other summer “drinks”: Many Lyme patients avoid alcohol and sugar, but that doesn’t mean you can’t enjoy a frozen summer drink. I blend up smoothies with unsweetened coconut milk, frozen berries, protein powder, and a banana. If you add frozen pineapple, you’ll almost have a piña colada! Many health food stores also sell naturally sweetened lemonade (I particularly like unsweetened lemon-flavored electrolyte water, which has the bonus of helping you to stay hydrated, too). Flavored seltzers are often sugar-free and are another great summer drink.
- Frozen treats: Avoiding sugar and dairy doesn’t mean you have to avoid ice cream. There are now many brands of “ice cream” that are naturally sweetened and made with coconut, almond, or cashew milk. Many of these companies also make popsicles as well. Or, pour some 100% juice into popsicle molds (bought online), put them in your freezer, and make your own!
- Staycation: If you’re too sick to go outside at all, that doesn’t mean you need to lie miserably in bed all summer. Sometimes just moving to a different section of the house or a different chair can provide a helpful change of scenery. In this “staycationing” post, I suggest a way to take yourself on a winter “vacation” in your own home. Trade the warm water here for cold, and you’ll have a do it yourself summer vacation
This summer is an unusual one, but that doesn’t mean we can’t enjoy ourselves. All it takes is a little creativity and willingness to think outside the box. Have a safe, healthy, and cool summer!
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.
