Learn how to improve energy levels with Lyme disease through pacing, rest, exercise, nutrition, hydration, and more. Discover tips for managing chronic fatigue and finding balance.
Being sick is exhausting. Whether you have the flu or Lyme disease, your body is drained from illness and the effort to heal. People who are sick need to sleep—a lot. Well-intentioned comments of “You should get out for a walk” never help Lyme patients, just as they wouldn’t help a cancer patient worn down by chemo, because the exertion only makes a sick body feel worse. When you are acutely ill with Lyme disease, your energy levels are going to be very low. That’s your body’s way of protecting itself while antibiotics kill off spirochetes.
As you start to get better, though, you’ll get a little more energy and want to spend it. For those wrestling chronic Lyme who may be bedridden for months or years, or whose symptoms may wax and wane, you’re naturally going to be looking for ways to improve energy levels so you can have more consistent good days, and feel like you are living rather than surviving.
Having been in remission from Lyme and babesiosis for over a decade, my energy has gotten better and better and I’m able to do more and more. Here are some lessons I’ve learned about improving—and maintaining—energy levels with Lyme disease:
Pace yourself
As soon as you start to feel any energy, you’re going to want to run right out and do all the things you haven’t been able to while sick. Who wouldn’t? I can’t tell you how many Lyme patients I know, myself included, who did this and then crashed. Whether it’s doing more physical activity than you’re ready for (guilty) or jumping right back into work and independent living (guilty), doing too much, too fast inevitably leads to a flare up or a full blown relapse.
I’ve learned to pace myself throughout the day so that I can have strings of good days in a row, rather than peaks and valleys. This may mean taking lots of breaks from work. This may mean napping at low energy points of the day. It may mean exercise or socializing for shorter amounts of times than you’d like, at least at first. A doctor once said to me, “Think of your energy in terms savings, not credit card spending.” The more you can pace yourself, the more reserves you’ll have.
Rest
This word may seem like the opposite of energy, but without it, you won’t be able to build an energy repository. You’ll constantly be spending energy, then completely depleting yourself. When that happens, you’ll be forced to rest and recover, sometimes for days or weeks. Think of yourself like a car: if you go until you use all the fuel, you’re going to run out of gas on the highway and your trip will be cut short. If you stop at rest areas to refill before your tank gets too low, you can ultimately take a longer trip.
For me, this means taking breaks during the day and taking a nap every afternoon without exception. It means always sticking to the same sleep schedule. It means stopping activity before I’m overtired. Sometimes it means taking a full day off from screens or work or activity, because if I don’t take that one day, I will be forced to take many days.
Exercise as you are able
Pushing myself to exercise when I’m too tired—even now while I’m in remission—always, always makes me feel worse, not better. Listen to your body. Of course, physical activity is important for anyone’s well-being, but it’s not always possible when you’re really sick. Simply moving your limbs in bed may be enough, or too much, at first. As you start to get better, work with a physical therapist who won’t push you to the point of post-exertional malaise to slowly bring exercise back into your routine.
Remember the brain-body connection
Lyme and other tick-borne disease can affect both the body and the brain. I have found that pushing one too far tends to make the other tired. For example, if I over-exert myself physically, I don’t get the physical symptoms you’d expect: aches, malaise. Instead, my neurological symptoms rev up. Conversely, if I spend too much time on screen, my body gets physically fatigued and I need to rest, even though I haven’t exercised. Any energy expenditure can affect your entire body, both physically and neurologically.
Fuel up
Sticking with our car metaphor, I’ve realized that the type of fuel I put into my body makes a big difference in how it runs. Eating small, well-balanced meals with lots of fruits and vegetables, whole grains, and lean proteins makes a difference. Of course, we all want and deserve treats here and there. But in general, I try to ask myself, is this food going to help or hurt my recovery? Will it give me sustainable energy, or will it give me a sharp energy rise and then a sudden crash? Am I giving my body the vitamins and nutrients it needs to help it recover?
Many Lyme patients follow an anti-inflammatory diet. For me, the decrease of inflammation in my body has made me less sluggish and more energized. Eating small snacks in between meals also helps to regulate my hypoglycemia, a symptom of babesiosis. Keeping my blood sugar stable gives me more consistent energy throughout the day.
Hydrate
Friends make fun of me good-naturedly for the amount of water I drink, and the fact that I never leave home—even for a short jaunt to the mailbox—without my water bottle. But consistently staying hydrated helps keep my body running well and wards off fatigue. Of course, everyone needs to hydrate, but I’ve found that as a Lyme disease patient, I need more water than others. My body is processing dead spirochetes, toxins, and medications, so it’s no wonder that it needs lots of water to flush itself. You don’t want to overhydrate to the point of washing sodium out of your body (a good way to counteract this possibility is by trading off with electrolyte-enhanced water), but the more water you can drink, the better you’ll probably feel.
Take vitamins and supplements
Your doctor can run tests to determine any vitamin or nutritional deficiencies you may have as a result of Lyme disease or treatment. In addition to eating well, I also take some vitamins and nutritional supplements that help my body. I wish I could tell you a magic energy supplement to take, but because no two protocols are alike, what’s worked for me might not work for you. I will say that I haven’t found any one supplement that has suddenly boosted my energy, but increasing certain vitamins has helped my overall recovery.
If you are on antibiotics, make sure you are also taking probiotics to regulate your microbiome (talk to your LLMD about which type to take, and when to take them—usually at least two hours before or after the antibiotic). Yeast overgrowth from a candida infection caused by antibiotics can definitely make you feel sluggish, so balancing antibiotics with probiotics can help your overall energy levels.
Avoid stimulants
Coffee is tempting, but it won’t cure Lyme disease. The fatigue of tick-borne illness is not the same as the fatigue of a poor night’s sleep, a hard workout, or a long day at work. It can’t be fixed with a caffeine. I find that caffeine only makes me feel jittery, and then it makes me crash later. Instead of a cup of coffee, what I really need for sustained energy is rest.
Consider medications
That said, your doctor may consider medications that could help your specific energy issues. For example, if insomnia is a problem, a sleep medication may help you get better rest, which will lead to more daytime energy. Certain medications that regulate circadian rhythm could help daytime fatigue for some patients. Talk to your doctor about what might be right for you.
Consider co-morbidities
When we’re sick with Lyme, it’s natural to get singularly focused on it. But if you aren’t getting better, it’s important to consider what other infections could be at play. That doesn’t mean you don’t have Lyme disease. That means you might have Lyme disease and something else, and if that something else isn’t treated, you are only fighting a partial battle. Make sure your LLMD evaluates you for other tick-borne diseases and that your medical team considers other conditions that could be exacerbating your Lyme fatigue.
Keep the faith
When you’re in bed all day and barely have the energy to pad to the kitchen for a meal, it can be hard to imagine one day living an energetic life. If someone had told me when I was that sick that I would one day be skiing, paddleboarding, writing, and socializing again, I never would have believed them. But here I am. With the right treatment and support, you can get here, too.
Being sick is exhausting. Whether you have the flu or Lyme disease, your body is drained from illness and the effort to heal. People who are sick need to sleep—a lot. Well-intentioned comments of “You should get out for a walk” never help Lyme patients, just as they wouldn’t help a cancer patient worn down by chemo, because the exertion only makes a sick body feel worse. When you are acutely ill with Lyme disease, your energy levels are going to be very low. That’s your body’s way of protecting itself while antibiotics kill off spirochetes.
As you start to get better, though, you’ll get a little more energy and want to spend it. For those wrestling chronic Lyme who may be bedridden for months or years, or whose symptoms may wax and wane, you’re naturally going to be looking for ways to improve energy levels so you can have more consistent good days, and feel like you are living rather than surviving.
Having been in remission from Lyme and babesiosis for over a decade, my energy has gotten better and better and I’m able to do more and more. Here are some lessons I’ve learned about improving—and maintaining—energy levels with Lyme disease:
Pace yourself
As soon as you start to feel any energy, you’re going to want to run right out and do all the things you haven’t been able to while sick. Who wouldn’t? I can’t tell you how many Lyme patients I know, myself included, who did this and then crashed. Whether it’s doing more physical activity than you’re ready for (guilty) or jumping right back into work and independent living (guilty), doing too much, too fast inevitably leads to a flare up or a full blown relapse.
I’ve learned to pace myself throughout the day so that I can have strings of good days in a row, rather than peaks and valleys. This may mean taking lots of breaks from work. This may mean napping at low energy points of the day. It may mean exercise or socializing for shorter amounts of times than you’d like, at least at first. A doctor once said to me, “Think of your energy in terms savings, not credit card spending.” The more you can pace yourself, the more reserves you’ll have.
Rest
This word may seem like the opposite of energy, but without it, you won’t be able to build an energy repository. You’ll constantly be spending energy, then completely depleting yourself. When that happens, you’ll be forced to rest and recover, sometimes for days or weeks. Think of yourself like a car: if you go until you use all the fuel, you’re going to run out of gas on the highway and your trip will be cut short. If you stop at rest areas to refill before your tank gets too low, you can ultimately take a longer trip.
For me, this means taking breaks during the day and taking a nap every afternoon without exception. It means always sticking to the same sleep schedule. It means stopping activity before I’m overtired. Sometimes it means taking a full day off from screens or work or activity, because if I don’t take that one day, I will be forced to take many days.
Exercise as you are able
Pushing myself to exercise when I’m too tired—even now while I’m in remission—always, always makes me feel worse, not better. Listen to your body. Of course, physical activity is important for anyone’s well-being, but it’s not always possible when you’re really sick. Simply moving your limbs in bed may be enough, or too much, at first. As you start to get better, work with a physical therapist who won’t push you to the point of post-exertional malaise to slowly bring exercise back into your routine.
Remember the brain-body connection
Lyme and other tick-borne disease can affect both the body and the brain. I have found that pushing one too far tends to make the other tired. For example, if I over-exert myself physically, I don’t get the physical symptoms you’d expect: aches, malaise. Instead, my neurological symptoms rev up. Conversely, if I spend too much time on screen, my body gets physically fatigued and I need to rest, even though I haven’t exercised. Any energy expenditure can affect your entire body, both physically and neurologically.
Fuel up
Sticking with our car metaphor, I’ve realized that the type of fuel I put into my body makes a big difference in how it runs. Eating small, well-balanced meals with lots of fruits and vegetables, whole grains, and lean proteins makes a difference. Of course, we all want and deserve treats here and there. But in general, I try to ask myself, is this food going to help or hurt my recovery? Will it give me sustainable energy, or will it give me a sharp energy rise and then a sudden crash? Am I giving my body the vitamins and nutrients it needs to help it recover?
Many Lyme patients follow an anti-inflammatory diet. For me, the decrease of inflammation in my body has made me less sluggish and more energized. Eating small snacks in between meals also helps to regulate my hypoglycemia, a symptom of babesiosis. Keeping my blood sugar stable gives me more consistent energy throughout the day.
Hydrate
Friends make fun of me good-naturedly for the amount of water I drink, and the fact that I never leave home—even for a short jaunt to the mailbox—without my water bottle. But consistently staying hydrated helps keep my body running well and wards off fatigue. Of course, everyone needs to hydrate, but I’ve found that as a Lyme disease patient, I need more water than others. My body is processing dead spirochetes, toxins, and medications, so it’s no wonder that it needs lots of water to flush itself. You don’t want to overhydrate to the point of washing sodium out of your body (a good way to counteract this possibility is by trading off with electrolyte-enhanced water), but the more water you can drink, the better you’ll probably feel.
Take vitamins and supplements
Your doctor can run tests to determine any vitamin or nutritional deficiencies you may have as a result of Lyme disease or treatment. In addition to eating well, I also take some vitamins and nutritional supplements that help my body. I wish I could tell you a magic energy supplement to take, but because no two protocols are alike, what’s worked for me might not work for you. I will say that I haven’t found any one supplement that has suddenly boosted my energy, but increasing certain vitamins has helped my overall recovery.
If you are on antibiotics, make sure you are also taking probiotics to regulate your microbiome (talk to your LLMD about which type to take, and when to take them—usually at least two hours before or after the antibiotic). Yeast overgrowth from a candida infection caused by antibiotics can definitely make you feel sluggish, so balancing antibiotics with probiotics can help your overall energy levels.
Avoid stimulants
Coffee is tempting, but it won’t cure Lyme disease. The fatigue of tick-borne illness is not the same as the fatigue of a poor night’s sleep, a hard workout, or a long day at work. It can’t be fixed with a caffeine. I find that caffeine only makes me feel jittery, and then it makes me crash later. Instead of a cup of coffee, what I really need for sustained energy is rest.
Consider medications
That said, your doctor may consider medications that could help your specific energy issues. For example, if insomnia is a problem, a sleep medication may help you get better rest, which will lead to more daytime energy. Certain medications that regulate circadian rhythm could help daytime fatigue for some patients. Talk to your doctor about what might be right for you.
Consider co-morbidities
When we’re sick with Lyme, it’s natural to get singularly focused on it. But if you aren’t getting better, it’s important to consider what other infections could be at play. That doesn’t mean you don’t have Lyme disease. That means you might have Lyme disease and something else, and if that something else isn’t treated, you are only fighting a partial battle. Make sure your LLMD evaluates you for other tick-borne diseases and that your medical team considers other conditions that could be exacerbating your Lyme fatigue.
Keep the faith
When you’re in bed all day and barely have the energy to pad to the kitchen for a meal, it can be hard to imagine one day living an energetic life. If someone had told me when I was that sick that I would one day be skiing, paddleboarding, writing, and socializing again, I never would have believed them. But here I am. With the right treatment and support, you can get here, too.
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