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Symptoms Attributed to Chronic Lyme Disease

What is it?

What Are the Symptoms Attributed to Chronic Lyme Disease?

Some patients who have had acute Lyme disease, go on to develop chronic symptoms including fatigue, pain, cognitive symptoms ("brain fog), sleep disturbance, and other unexplained symptoms. Although these symptoms have been attributed to persistent Lyme infection (i.e., chronic Lyme), active infection has yet to be demonstrated. Other patients who have not been exposed to the Lyme bacteria (i.e., antibody test negative by reference labs) pay for private lab testing in the US or Europe. These private labs (i.e., non-reference labs) have false positive rates as high as 50:1 (i.e., only one true positive test for each 50 false positive tests). Yet other patients are diagnosed with chronic Lyme disease based on symptoms alone without any serologic testing.

Although many patients report improvement with antibiotics (anecdotal evidence), high quality research consistently show that antibiotics are not helpful and potentially harmful. Some so called "Lyme literate doctors" subscribe to the persistent infection hypothesis and prescribe antibiotics despite strong evidence to the contrary. These doctors represent a small fraction of the medical community. The CCDP does not prescribe antibiotics unless patients have positive serology and have not had prior adequate treatment. The CCDP is not involved in the care of patients with acute Lyme disease where antibiotic treatment is required.

For more information, go to BC Centre for Disease Control.

Diagnosis & Symptoms

Symptoms Attributed to Chronic Lyme Disease

There is no agreed upon definition or diagnostic criteria for diagnosing chronic Lyme disease (CLD). There is significant overlap between the symptoms attributed to CLD and those of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), FM (Fibromyalgia), and other Central Sensitivity Syndromes (CSS). A study by the Complex Chronic Diseases Study Group could find no difference between patients with symptoms attributed to CLD and those with ME/CFS. ME/CFS is often triggered by an infection. For those with a history of serologically proven (antibody test by a reference lab) Lyme disease, persistent symptoms may be due to the acute Lyme infection triggering the onset of ME/CFS. This population is said to have post-Lyme disease syndrome. Other patients without serologic evidence of prior infection by a reference lab (e.g., BCCDC) have a positive test by private non-reference lab. These patients likely have ME/CFS, FM, or related disorder with a false positive test.

Lyme Disease Testing

Internet search results would have one think that testing for Lyme disease is controversial. There is a lot of misinformation about Lyme testing. False negative tests are common only in early acute Lyme but not in late Lyme disease. Of note, late Lyme disease is not the same as CLD and represents specific syndromes associated with persistent infection. Click here for a Fact Sheet on testing for Lyme disease.

Symptoms attributed to Chronic Lyme Disease

As mentioned, there is no agreed upon definition or diagnostic criteria for diagnosing chronic Lyme disease (CLD). Symptoms attributed to CLD include:

  • Fatigue;
  • Pain;
  • Cognitive symptoms ("brain fog)
  • Sleep disturbance; and
  • Other unexplained symptoms (e.g., gut, brain, or autonomic (adrenaline) system)

Lyme disease itself is described as having 2 different stages. There are the early and late stages of Lyme disease. Of note, late Lyme disease is not the same as CLD and represents specific syndromes associated with persistent infection (see below).

Early Stage Symptoms of Lyme Disease

(occurring 3 to 30 days after the tick bite) include:

  • Flu-like symptoms (often in the summer months) such as:
  • Chills and fever
  • Swollen lymph nodes
  • Stiff neck
  • Headaches
  • Fatigue
  • Muscle and joint pain
  • A large, expanding skin rash (erythema migraines), located around the area of the tick bite (in approximately 40% of affected people). This rash may be circular, triangular, or oval, and may resemble a bull's eye.

Antibiotics are used to cure early Lyme disease and to prevent further complications of the infection when used early.

Late Stage Symptoms of Lyme Disease

(months-to-years post-tick bite)

Approximately 60% of patients who were infected with Borrelia (the agent that causes Lyme Disease), but were not treated with antibiotics, go on to develop arthritis, neurologic symptoms (brain or nerves), and skin manifestations.

Antibiotics are also used for late Lyme disease and are usually curative.

As mentioned, CLD is not the same as late Lyme as evidence of persistent infection is lacking. Although there are many anecdotal reports of symptom improvement with antibiotics, high quality randomized placebo-controlled trials have consistently shown a lack of benefit. In fact, there is strong evidence showing potential harm in the use of antibiotics for symptoms attributed to CLD.

The CCDP does not see patients with acute or late Lyme disease. As mentioned, we will treat patients with symptoms attributed to CLD who have positive serology and have not had prior adequate antibiotic treatment. Otherwise, our policy is not to use antibiotics for patients with symptoms attributed to CDL.

More information reviewing the controversies surrounding CLD is available on our website.

For more information, go to BC Centre for Disease Control.

Living with a Complex Chronic Disease

Living with Lyme Disease

The effects of long term health problems associated with Lyme disease can be as devastating as they are in any long-term chronic illness.

Many of the symptoms of Lyme disease are similar or the same as the symptoms of people who have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia (FM). The treatment approach is supportive and symptomatic for people with ongoing symptoms. 

Develop an activity plan

If you have had Lyme disease for some time, you may have noticed that some activities and situations can make your symptoms worse. These situations are known as triggers and might include noisy or crowded gatherings, prolonged physical activity, emotional upsets, or pressure of work.

If you identify your triggers and use an activity diary, or daily log to track your activities and fatigue levels during the day, you will be able to plan your activities when they will be easier for you to manage, and at a time that allows you to have a rest period if needed. This is called “pacing”.

For example, if mornings appear to be a higher energy time for you, plan to do the more demanding activities such as exercise, studying, or shopping during that time, taking care not to overdo it. Set modest goals for your daily activities and pay attention to the way your body responds to various levels of activity. Feeling fatigued means it is time to rest.

Start an exercise program

The benefits of exercise with respect to well-being, physical function, and pain control are well-known. People with Lyme disease who choose to participate in an exercise program that is individualized to their specific needs will usually have the positive benefits of being with other people who have similar problems. If they are able to persevere, they will gradually feel improvements with respect to their Lyme disease symptoms.

The key is to listen to your body and do what you can that day. You will have good and bad days. On the bad days you will not be able to do as much as you can on the good days; so don’t push yourself on your bad days. Also don’t try to make up for it on your good days. Pace yourself and your exercising each time you participate. Avoid crashing by pushing yourself to do too much. Don’t try to “keep up with the class”.

Another key is to do enough without overdoing it. Doing a bit every day is better than pushing yourself one day and crashing for the next 3 days afterwards. If you can’t do it every day then try every other day. The days you grocery shop count as walking exercise; so you don’t do more walking on the days that you grocery shop.

The key to success is to start with a very gentle program, pay attention to messages from your body and do some gentle form of exercise every day or every other day if possible. Start low, with 3 repetitions of the movement compared to the normal 10 to 15 repetitions. Go slow, and increase at your own rate so that you can do a few repetitions most days and not crash afterwards.

Exercise programs may include:

  • Range of motion exercises while you are bedridden
  • Strengthening exercises
  • Aerobic exercises
  • Exercise in water (e.g. aqua-fit) Vancouver Parks and Recreation
  • Pilates
  • Tai Chi
  • Yoga that is restorative in nature and teaches relaxation Yoga Vancouver

Learn relaxation techniques

The aim of relaxation is to block out feelings of stress, anxiety and/or pain. These techniques also help people who have trouble with falling asleep.

There are many relaxation techniques, including:

  • Deep breathing exercises
  • Meditation Mayo Clinic
  • Visualization
  • Progressive relaxation
  • Biofeedback

Here is an example of simple relaxation technique that you can do anytime and anywhere:

  • Set aside 10 to 20 minutes at least once a day. Make this your private time to be quiet and alone (no interruptions!)
  • Make yourself as comfortable as possible in a quiet, darkened room – lying down is perfectly fine if you are too fatigued to sit up.
  • Begin by breathing in through your nose. Say “re” silently to yourself and then say "lax" as you exhale through your mouth.
  • Count to four as you inhale through your nose, pause, and then breathe out for a count of four through your mouth. Take nice easy breaths, and don’t force the air in or out as you breathe.
  • This technique can help you at any time of day when you feel very tense or anxious. It is also a very good approach to getting to sleep at bedtime.

Improve your sleep

Many people with Lyme Disease are not able to enjoy good, energy-restoring sleep. Poor sleep can make other symptoms of Lyme Disease such as pain and fatigue much worse. Sleep disturbance can include:

  • Problems with falling asleep
  • Waking up frequently
  • Restless Leg Syndrome (numbness and tingling in the lower limbs, and muscle twitching
  • Sleep apnea (loud snoring, with pauses in breathing, followed by a loud snort or gasp when the person starts breathing again)

Referral to a sleep specialist or sleep clinic can help with a diagnosis and ways to improve the quality of your sleep. Some of these may include:

  • Regular daily exercise within your comfort limits
  • Raise your activity level during the day, to the level you can tolerate
  • At bedtime, include a quiet, relaxing activity such as a warm bath
  • Play a recording of relaxing sounds
  • Have a regular bed time and plan for 8 to 10 hours of sleep per night
  • Make sure your bed and pillows are comfortable, with good support for your neck, such as a cervical pillow.
  • Medications (“sleeping pills”). Most sleeping pills will help you go to sleep, but do not help you to have a deep, energy-restoring sleep. Consult your doctor if you think sleeping pills might help you, and be sure to learn about side effects and safe use of these medications.

Eat Foods That Promote Health

Good nutrition is a known factor in good health. For people with a chronic condition such as Lyme Disease, nutrition plays an even more important role in healing and becoming as healthy as possible.

Healthy Eating Guide

Consult the Canada Food Guide

  • Select food from at least 3 of the 4 food groups every day.
  • Eat at least 5 to 10 servings of vegetables or fruit daily.healthy food
  • Avoid caffeine and alcohol
  • Eat small, regular meals (every 3 to 4 hours)
  • Eat organic foods free of pesticides
  • Include foods rich in omega-3 (an essential fatty acid) such as salmon, mackerel, herring, sardines, halibut, flaxseed, pumpkin seeds, and canola oil. Avoid fish that has more than very low levels of mercury.
  • Drink 6 to 8 glasses of filtered or spring water every day.
  • Ask your pharmacist to recommend a daily multivitamin (no iron if you are past menopause); Take calcium and Vitamin D to reduce the risk of osteoporosis.
  • If you have food allergies or intolerance, ask your doctor to refer you to an allergy specialist to help with your dietary planning.

Manage your pain

Each person experiences pain in a unique way, related to his or her history, culture, and attitudes toward health and illness. Also, the experience of a person with long-term, chronic pain as in Lyme Disease is different than that of a person who has post- surgical pain or pain from an acute injury.

Any approach to pain relief must take these differences, and the needs of the individual, into account.  Many people with Lyme disease have found the following strategies helpful in controlling their pain:

  • Relaxation exercises and gentle stretching
  • Massage therapy, physiotherapy, and/or osteopathic treatment
  • Warm baths with Epsom Salts
  • Acupuncture and acupressure
  • Botox injections
  • Local anaesthetic e.g. Lidocaine injections into tender muscles
  • Nerve blocks

When these strategies are not enough to control pain, your doctor may prescribe the use of pain-controlling medications. The use of drugs in the management of Lyme disease should be based on a patient’s symptoms, with the most severe symptom as the primary target.  More than one drug may be prescribed in order to deal with all symptoms. This requires caution because of possible risk of drug interactions.

The range of possible drug treatments includes the following types of medications:

  • Analgesics (pain medications) such as Acetaminophen and Non-steroidal Anti-inflammatory Drugs (NSAIDS).
  • Opioid drugs (for patients with severe pain that does not respond to other treatment approaches.
  • Antidepressants that have pain modulating effects (a change in the way the pain is felt), are useful even in the absence of symptoms of depression. They are used at the lowest effective dose.
  • Anticonvulsants that have pain modulating effects. They are used at the lowest effective dose.
  • Other medications with pain moderating and other beneficial effects. These include a variety of pharmacological agents that at this time require further randomized controlled trials.

Make Your Environment Healthy for You

Many people with Lyme disease have some environmental sensitivities or intolerances. They have symptoms when exposed to levels of substances that do not bother other people. These can include toxic substances such as cigarette smoke, petroleum products and pesticides. They can also include perfumes, dust, and moulds.The best way to avoid problems with these substances is to avoid being exposed to them (which can be difficult). You may not be able to control everything in your environment, but there are some steps you can take within your own living space, such as:

  • Remove all sources of dust and mould (all those “dust-collectors”, houseplants, etc.)
  • Raise your awareness about harmful cosmetics and discontinue use of toxic personal care products.
  • Use cleaning products that are labelled “non-toxic”, “eco-friendly” or “safe” or make your own using baking soda and vinegar.
  • Refer to a toxic substances found in cleaning and other products
  • Avoid the use of pesticides and herbicides
  • Keep the humidity in your house between 30 and 50 percent to reduce mould growth
  • Remove carpets if possible. If not, use a HEPA filter vacuum for cleaning

Achieve Emotional Health

Any long-term illness or condition can have a major impact on a person’s emotional health. There are many reasons for this, including:

  • Having to deal with physical symptoms such as pain on an ongoing basis.
  • The challenge of finding a diagnosis and effective treatment in a medical system that cannot always respond.
  • Dealing with losses, including the ability to work and be employed at a regular job, the ability to enjoy strenuous physical activities, and/or the ability to function as a fully active member of a family.
  • Having a disease that “doesn’t show” and dealing with people who do not understand Lyme Disease. This can lead to feeling isolated with your disease.

Many people with Lyme disease have felt helpless and unable to do anything to improve their condition. But those who have been able to change the way they think and feel about their illness have begun to feel more in control. They have developed coping skills and found good sources for emotional support.  This change in perception can happen when a person accepts that he or she has a complex, chronic disease and believes that there are many ways to lessen its impact on quality of life.

If you develop coping skills that allow you to pace your activities so that you get enough rest, you may also be able to lower the amount of stress you feel. You can set reasonable and “doable” goals for yourself and start to work on those that you think are most important. You can re-set your goals as you go along. You can learn more about helpful resources in the community, about safe and effective treatments, exercise programs, and healthy eating.

You can feel less alone with your disease when you educate yourself, and then help other people to understand about your condition. You will be able to explain about your need to pace your activities and what your limits are.

Many people with Lyme disease find that joining a support group helps them connect with others who have Lyme disease. They are able to gain emotional support as well as useful information. You may want to include family and friends in support groups that can help them understand and cope with the effects can have on families and friendships.

If you feel better after you attend a support group, continue going. If you feel worse afterwards don’t go back. Don’t waste your time if the group is composed of people who like to compare their illnesses and complain. This activity is wearing and not supportive and wastes your energy. Find a positive group where you feel uplifted by going.

The goal is for you to find your way back towards healthy living and make sure that although you have Lyme disease, it does not “have you”. You are more than your illness.

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SOURCE: Symptoms Attributed to Chronic Lyme Disease ( )
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