Living With Lyme Disease

Receiving a diagnosis of Lyme disease can be frightening, particularly if you’re unsure how long you've had the condition. In most cases, Lyme disease has no lasting effects if the symptoms are treated with antibiotics soon after you've been bitten by an infected tick.

However, if you don't notice that you've been bitten by a tick and don't receive antibiotic treatment, you may experience symptoms of Lyme disease including arthritis, neurological issues, and heart disease. This is sometimes called chronic Lyme disease. 

There’s no cure for chronic Lyme disease and treatments can be complicated. However, there are steps that you can take to make living with Lyme disease more bearable. Read on to learn more.

Emotional

Getting a diagnosis of chronic Lyme disease can affect your mental and emotional health. People with chronic Lyme disease are more likely than those without the condition to feel negative.

In fact, more than half of people with Lyme disease experience mood swings, about one-quarter suffer from anxiety, and about 20% have depression.

This is all frightening information. Remember that most people with Lyme disease don’t experience mental health complications. However, if you begin experiencing mood swings or mental health symptoms that are uncharacteristic for you, speak with your healthcare provider immediately. In addition, try to find a practitioner that specializes in Lyme disease and therefore has a more nuanced understanding of your symptoms. 

You might consider talking to a trusted loved one about the mental and emotional effects of Lyme disease. That person can help you know when you might be experiencing these symptoms, and can help connect you with help. 

Finally, whether or not you’re experiencing mental health symptoms, living with Lyme disease can be emotionally taxing. Online support groups can connect you with other people living with Lyme disease who will understand your challenges and be able to share what has worked for them. 

Physical

The physical effects of Lyme disease include arthritis, which occurs in up to 60% of patients who were not treated after a tick bite. About 12% of people experience neurological symptoms, including numbness or weakness, and about 1% of people experience heart problems, including a racing heart. 

Exercise

Many people with chronic Lyme disease experience fatigue and painful arthritis. That often means that exercising is the last thing that you want to do, but getting exercise can actually improve symptoms, making you feel more energetic and limber. 

One study found that even a low-intensity resistance training program reduced symptoms of Lyme disease. People who exercised three times a week for four weeks reported four times more days of feeling “healthy and full of energy.”

More broadly, exercise is considered essential for people with arthritis. 

Diet

Lyme disease causes inflammation in the body, so people with chronic Lyme disease often benefit from following an anti-inflammatory diet. Broadly speaking, following this diet means:

• Avoiding vegetable oils; use extra virgin olive oil instead
• Avoiding red meat
• Increasing fruit and vegetable intake

Maintaining a healthy body weight can also help reduce inflammation and may help mitigate the symptoms of Lyme disease. 

In addition, people with Lyme disease should eat a diet that encourages a healthy gut microbiome. Lyme disease itself and extensive treatment with antibiotics can both take a toll on your gut health. Eating for a healthy gut microbiome includes:

• Reducing refined sugar
• Eating more fiber—like fruits and vegetables—which help feed gut bacteria
• Eating fermented foods like yogurt, kombucha, or kimchi

Sleep

People with Lyme disease often have a lower quality of sleep. At the same time, getting enough sleep can help you reduce inflammation and keep symptoms at bay. Make an effort to get the recommended eight hours of sleep each night. Establishing healthy sleep hygiene can help. This includes: 

• Going to bed and waking up at the same time each night
• Minimize artificial light—including from phones or tablets—as you get ready for bed
• Sleep in a cool, dark room

Pain Management

It may take trial and error to find out what pain management techniques work for you during a Lyme disease flare-up. Common techniques that you can try include:

• Using heating or cooling on sore muscles and joints
• Soaking with Epsom salts
• Gentle, light-touch massage
• Acupuncture or chiropractic care

Talk to your healthcare provider about what pharmaceutical options might help you manage your pain. 

Social

Living with Lyme disease can take a toll on your relationships. This can include:

• Experiencing mood swings
• Feeling resentful of people who are not dealing with the same symptoms that you are
• Becoming withdrawn because of the physical and mental effects of Lyme disease

Talk to those who are most important to you about the ways that Lyme disease affects you. Having an open conversation can help prevent damage to your relationships. You and your loved ones may both benefit from support groups for people with Lyme disease and their friends or family. 

You might find it empowering to join organizations that advocate for patients with Lyme disease. 

Practical

Lyme disease—like other autoimmune diseases—is often characterized by flare-ups. With time, you’ll begin to understand your pattern of symptoms better.

Lyme disease is still not very well understood. Because of that, finding a healthcare provider who is Lyme literate, or who specializes in treating Lyme disease, is very important. These practitioners have the most up-to-date research and information, and they understand the ways in which Lyme disease can manifest.

You can find these healthcare providers through Lyme disease organizations, or by asking people in support groups or others with Lyme disease. 

Disease Prevention

You might think that once you’ve been infected with Lyme disease you can let your tick-wariness wane. However, that’s not true. Even if you are experiencing symptoms of chronic Lyme disease, you can still be reinfected with Lyme. Because of that, you should still take steps to prevent Lyme disease and other tick-borne illnesses, including: 

• Using bug spray
• Wearing long pants and shirts when outside
• Trimming back brush around your yard
• Regularly checking for ticks after you’ve been outside

Learning to live with Lyme disease can be an adjustment. Try to remember that there is plenty of support available, and scientists are learning more about treating and coping with Lyme disease every day.