10 Things to Know About People with Lyme Disease

The information below can help you better understand the unique challenges and difficulties for people who are living with Lyme disease and tick-borne illness, and their families.

1. Symptoms can change frequently. Because Lyme symptoms are related to inflammation, they can vary from day to day. Someone with Lyme disease may feel up for hiking or playing sports one day, and be genuinely bedridden the next. Not being able to predict how you will feel, or knowing what you will be able to accomplish each day, can be incredibly frustrating.

What you can do: Be flexible and compassionate. Don’t accuse someone of ‘faking it’, or say, “they didn’t seem sick yesterday”. Try to understand when plans must be altered to accommodate changing symptoms.

2. People with Lyme disease have to be very careful about what foods they eat. They should not eat sugar, and maintaining a high protein, gluten and dairy free diet is important to their health. Their bodies may have difficulty processing alcohol or caffeine, and certain foods or beverages can lower their immune system. This makes dining at restaurants, or celebrating special occasions, difficult – especially for children.

What you can do: Avoid making fun of someone who needs to make food choices that are atypical for our culture. Even better – provide a gluten free, dairy free, and low sugar (or sugar free) alternative for guests in your home. Choose restaurants that can accommodate the dietary needs of someone healing from Lyme disease.

3. They have to rest. ‘Overdoing it’ can have a major negative impact on someone healing from Lyme disease. For parents with young children, and people who had vital, vibrant lives before becoming sick, slowing down and doing less can be emotionally challenging. In addition, severe insomnia is common in people with Lyme disease, so they may not be getting enough rest at night (a problem when proper sleep is essential for a healthy immune system).

What you can do: Be patient. Be flexible. Cook them a meal, mow their lawn, babysit their children, drive them to a doctor appointment, help them any way you can. Recognize that people who used to be able to ‘do it all’ will not be able to – until they take time to heal. For children, remember that what looks like ‘behavior problems’ or ‘tantrums’ may be their only way of letting you know they need a break.

4. Supplements, herbal medicine, acupuncture, naturopathy, and non-Western medical interventions can really help some people with tick-borne illness. Lyme bacteria can deplete essential minerals, and the immune system may benefit from detoxification and herbal support. Probiotics help repopulate the ‘good bacteria’ often destroyed by antibiotics used to treat Lyme. While these interventions may not be ‘mainstream’ they have been shown to help people with tick-borne illnesses heal.

What you can do: Protect your loved ones from people who claim they can ‘quickly cure’ chronic Lyme disease, and who offer expensive treatments (people sick with Lyme are often desperate to feel better!). Respect that plant based medicines, professional advice, and activities such as yoga practice and meditation, have been shown to promote healing and well-being.

5. Depression, Rage, and Cognitive Difficulties are all symptoms of tick-borne illness. According to Sandy Berenbaum, LCSW, “Children and adolescents with chronic Lyme often meet the DSM criteria for one or more “mental illnesses”–anxiety disorder, depression, anorexia nervosa, AD/HD, as well as disorders in which behavioral problems manifest”. A survey by the National Lyme Disease Association revealed 59% of people diagnosed with Lyme disease were initially diagnosed with a mood disorder. Depression, memory loss, changes in behavior, and cognitive problems may be the only noticeable symptoms of an active infection.

What you can do: Recognize the psychological and cognitive symptoms of tick-borne disease. Notice when someone’s behavior is unusual or atypical and inquire, rather than judge. Help others learn how Lyme disease in children may appear as ADHD, learning disabilities, or behavior problems.

6. People with Lyme disease can be very uncomfortable in the heat. They may feel sicker in hot weather. If they are taking antibiotics, they may need to avoid sun exposure entirely. (Also, heightened sensitivity to bright light can be a symptom of infection).

What you can do: Plan activities for cooler times of day (or stay indoors with air conditioning). Be respectful when someone says they are uncomfortable, and make sure that cool, shady areas are accessible.

7. It may take a long time to heal from Lyme disease and tick-borne infections. In a culture used to “quick-fixes” it can be hard to comprehend that healing from a tick-borne disease may take several years. Some people find treatment works quickly and effectively. Others may go into remission, but will have a lifetime of dietary restrictions, vulnerable immune systems, and fears about relapse.

What you can do: Be supportive. Let your loved ones know that you are with them for the ‘long haul’. Remember that, although Lyme disease is a medical diagnosis, the psychological and emotional impact of the disease is vast, especially when someone’s lifestyle and productivity is radically altered.

8. Lyme disease is expensive. Health care costs for people with chronic Lyme are significantly higher than the general population, and effective treatments may not be covered by insurance. This can increase stress (especially for someone who is too sick to work!) and reduce opportunities to participate in social activities – at a time when social support and interaction is critical to emotional health and well-being. A family’s resources may be skewed toward a sick child, leaving others’ needs unmet.

What you can do: Plan social activities that are low cost, such as watching a DVD, attending a free lecture, or sharing a picnic. If the financial impact of Lyme disease on a family is significant, help organize a fundraiser. Assistance with yard work, tax preparation, simple car repairs, and similar tasks can help to reduce a family’s overall expenses.

9. People with Lyme disease (and their families) can become isolated. Friendships can wither during a long convalescence, plans may frequently need to be cancelled – and for children, behavior changes can affect the development of social skills (which is then exacerbated by the resulting lack of interaction). People with Lyme disease and their families can often feel very alone.

What you can do: Check in – often. Be understanding when someone feels overwhelmed, or has to change plans at the last minute. Be a good listener. Invite a child to a playdate or birthday party – even if their behavior can be challenging (arrange for an extra helper to assist the child). Most of all – act with compassion for the person with Lyme disease, and their family.

10. It is hard to find proper treatment for Lyme disease and tick-borne illness. People with Lyme often have to travel many hours, or even out of state, to find effective treatment.

What you can do: Offer to check on pets, or pick up children from school. Make a ‘care package’ for long car trips. Gift hotel vouchers or airline miles. Join others who support expanding training for medical professionals about the diagnosis and treatment of tick-borne illness.