Lyme disease symptoms

DISCLAIMER: Caudwell LymeCo charity shares public domain  information, which it believes to be reliable, in good faith. It should never replace the advice of a qualified physician with a license to practise medicine. If you believe any information on this website to be incorrect, you are invited to contact the charity using the Contact page.

This Lyme disease symptoms page contains:

  1. a description of first signs of (acute) Lyme disease
  2. a description of long-term (chronic) Lyme disease,
  3. photographs of the visible rashes which some patients have, and
  4. a bullet-point list of the possible symptoms of Lyme disease.
1. What are the first signs of (acute) Lyme disease?

For some people, Lyme disease comes on gradually and has some of the symptoms of flu. They may have swollen glands, aching muscles, headaches, tiredness and a general feeling that something is not right. This can go on for weeks or months, and many of the symptoms are very difficult to describe. A lot of the symptoms are mild and banal, but the sum of all of them together makes it difficult or impossible to continue life as before.

For other people, Lyme hits them like a sledgehammer. The very first symptom for some people can be acute psychosis that requires them to be treated in hospital. It can be sudden inflammation of the heart causing life-threatening abnormal heart rhythm (arrhythmia) or cardiac arrest. It may be a sudden paralysis of one side of the face (Bell’s palsy) which means they can no longer speak or eat normally.

A considerable number of people can have Lyme disease for months or years with no symptoms at all (Latent Lyme disease). The illness may suddenly flare up into a symptomatic illness when something else weakens the immune system, such as another bad illness, an injury or operation, or a very stressful event.

2. What are the symptoms of long term or “chronic” Lyme disease?

Try to imagine the worst flu you have ever had, and then try to imagine it lasting for months or years.

You are ill but you have to carry on your daily life, trying to hold down a job or look after your children, doing the shopping and keeping the house tidy. The whole time, you feel exhausted and your muscles hurt. You don’t want to go out with your friends, you just want to retreat to your bed.

Other symptoms gradually appear, including migraine-type headaches which can go on for days at a time; muscle twitching that makes you drop things or fall down stairs; not being able to focus your eyes properly; finding you feel actual pain from light, sounds or even a scratchy label inside your clothes; muscles which burn from the effort of walking upstairs, or from holding your arms up long enough to wash your hair; your heart pounding inside your chest from the effort of walking around your own house; and getting severe stomach aches or diarrhoea from food you thought was healthy such as yoghurt, bread or fruit.

You have brief dizzy spells frequently, and you sometimes feel disoriented as if you were drunk. Some days your reactions are so dopey that you just don’t feel safe driving your car, but the idea of trying to walk when you are so weak and exhausted could make you sink in a chair and cry.

Photograph by Adam Hughes

The mental symptoms are more frightening still. You cannot think things through properly, so you are afraid to make important decisions about your finances, for example. Some patients reach the point where they struggle to make even trivial decisions, and lose all self confidence. They may gradually lose control as others step in and make decisions for them. You become very forgetful. You suddenly start forgetting words in the middle of a sentence, or using the wrong word without realising. You may suddenly forget what you were saying when you were in full flow. You may give up reading altogether because you just can’t take it in. Children with Lyme disease invariably find their school work suffers.

Some patients find they can no longer recognise people, even friends they know well and see regularly, so they go through the same profoundly disturbing experience as Alzheimers patients, of being greeted throughout the day by strangers who appear to know all about their personal life.

Some people develop severe mental symptoms. They lose the ability to read, for example, or even to speak. Some people become paralysed by fear that they know is irrational, by panic attacks, by flashes of anger they cannot control, or by crippling depression and suicidal thoughts. Some people have acute psychotic attacks.

Self esteem plummets as you no longer feel like your usual self and coping with the mental and physical demands of life becomes increasingly hard. Very few people have externally visible signs of this illness. A lot of people with Lyme disease lose friends and support; often, people cannot understand why they can no longer keep up with the active life they once enjoyed.

In fact, one of the biggest difficulties for most people with Lyme disease is that, on the outside, they usually look absolutely fine. Every single person with long-term Lyme disease can list the names of former friends, and often even family members, who no longer speak to them because they believe the illness was invented…. sometimes, even when shown blood test results.

3. What are the visible symptoms of Lyme disease?

A few people with Lyme disease get a rash called erythema migrans or a “bull’s-eye rash”.

NHS guidelines state that two thirds of people get this rash, but those working at the specialist private Lyme disease clinics in Europe and America say that only one third of their patients report noticing it. Some research states that 90% of patients have this rash. No two research papers seem to agree! One thing is certain, that the rash does not appear on all patients.

The rash can vary from person to person,  but the most distinctive version looks like this, with an obvious central clearing:

Sometimes, the rash is less distinctive and look more like these:

Some people find an erythema migrans rash sore, but in most cases it doesn’t hurt or itch. Some types of spider bites cause rashes that look very similar to erythema migrans, and they are extremely painful.

Some people with Lyme disease, but only those who have had it for years, get another type of marking on the skin called acrodermatitis chronica atrophicans. It occurs when the skin begins to atrophy or in other words, becomes thinner. In the early stages it looks like a maroon bruise:

aca1

In the later stages it can be very severe and is accompanied by polyneuropathy. This means problems with the nerves, usually in the hands and feet, including numbness, tingling, pins and needles or intense pain. It may look like this:

ACA advanced

If you want to see more images of types of Lyme disease rash, you may find this article helpful.

4. A list of the symptoms of Lyme disease

This is a list of many of the possible Lyme disease symptoms. Very few patients have all of them; Lyme attacks different parts of different people’s bodies.

Bullet point lists of symptoms can sometimes make lots of different illnesses sound the same. A description written by patients can give a much clearer idea of how the illness really shows itself. We do recommend reading our descriptions above, if you have not already done so.

Neurological

  • Numbness in body, tingling, pinpricks
  • Burning/stabbing sensations in the body
  • Burning in feet
  • Weakness or paralysis of limbs
  • Tremors or unexplained shaking
  • Seizures, stroke
  • Poor balance, dizziness, difficulty walking
  • Increased motion sickness, wooziness
  • Lightheadedness, fainting
  • Encephalopathy (cognitive impairment from brain involvement)
  • Encephalitis (inflammation of the brain)
  • Meningitis (inflammation of the protective membrane around the brain)
  • Encephalomyelitis (inflammation of the brain and spinal cord)
  • Academic or vocational decline
  • Difficulty with multitasking
  • Difficulty with organization and planning
  • Auditory processing problems
  • Word finding problems
  • Slowed speed of mental processing

Respiratory/Circulatory

  • Difficulty breathing; “air hunger” – a feeling of not having enough oxygen or being able to inhale deeply enough, like gasping for air
  • Night sweats or unexplained chills
  • Heart palpitations; heart arrhythmia
  • Heart block, heart murmur
  • Diminished exercise tolerance; this is the medical term for feeling exhausted, feverish and full of pain after doing an amount of exercise you previously found easy – you feel tired, but it’s not a good kind of tired!
  • Chest pain or rib soreness

Head, Face, Neck

  • Headache
  • Facial paralysis (Bell’s palsy)
  • Tingling of nose, cheek, or face
  • Stiff and painful neck
  • Sore throat
  • Swollen glands
  • Heightened allergic sensitivities; new allergies develop and old ones worsen
  • Twitching of facial/other muscles
  • Jaw pain/stiffness (like TMJ)
  • Change in smell, taste; lose sense of smell, or smell things that are not really there

Digestive/excretory

  • Upset stomach (nausea, vomiting)
  • Irritable bladder
  • Unexplained weight loss or gain
  • Loss of appetite, anorexia

Psychological and Psychiatric

  • Mood swings, irritability, agitation
  • Depression and anxiety
  • Personality changes
  • Malaise
  • Aggressive behavior / impulsiveness
  • Suicidal thoughts (increased likelihood of suicide)
  • Depersonalisation; this is a feeling that you are outside your own body, observing yourself and surroundings from a neutral standpoint
  • Over-emotional reactions, crying easily
  • Disturbed sleep: too much, too little, difficulty falling or staying asleep; many patients spend all night struggling to get off to sleep and all day fighting to stay awake
  • Suspiciousness, paranoia, hallucinations
  • Feeling as though you are losing your mind
  • Obsessive-compulsive behavior
  • Bipolar disorder/manic behavior
  • Schizophrenic-like state, including hallucinations

Cognitive

  • Forgetfulness, memory loss (short or long term)
  • Poor school or work performance
  • Attention deficit problems, distractibility
  • Confusion, difficulty thinking
  • Difficulty with concentration, reading, spelling; a severe inability to perform mental tasks that were previously very easy
  • Disorientation: getting or feeling lost; it is very common for Lyme patients to find they are suddenly lost when driving to a place they have been many times and know perfectly well
  • Dementia

Reproduction and Sexuality

Females:

  • Unexplained menstrual pain, irregularity
  • Reproduction problems, miscarriage, stillbirth, premature birth, neonatal death, congenital Lyme disease
  • Extreme PMS symptoms
  • interstitial cystitis

Males:

  • Testicular or pelvic pain

Eyes and Vision

  • Double or blurry vision, vision changes
  • Wandering or lazy eye
  • Conjunctivitis (pink eye)
  • Oversensitivity to light
  • Eye pain or swelling around eyes
  • Floaters/spots in the line of sight
  • Red eyes

Ears/Hearing

  • Decreased hearing or deafness that comes and goes
  • Sound sensitivity; the quietest of noises may hurt the ears; it is possible to have both these symptoms at once, and thus be unable to hear the television at full volume because it is being drowned out by the sound of someone rustling a piece of paper as they read in an adjacent room
  • Pain in ears
  • Ringing or buzzing in ears

Musculoskeletal

  • Joint pain, swelling, or stiffness
  • Shifting joint pains; sometime sthese are accompanied by swelling and sometimes redness but sometimes they appear normal
  • Muscle pain or cramps
  • Poor muscle coordination, loss of reflexes
  • Loss of muscle tone, muscle weakness

Skin

  • Erethyma Migrans (rash)
  • In late stage disease, dermatitis cronica atrophicans
  • Benign tumor-like nodules called lymphocytoma

General Well-being

  • Decreased interest in play (children)
  • Extreme fatigue, tiredness, exhaustion
  • Unexplained fevers (high or low grade)
  • Flu-like symptoms (early in the illness)
  • Symptoms seem to change, come and go

Other Organ Problems

  • Dysfunction of the thyroid (under or over active thyroid glands)
  • Liver inflammation
  • Bladder & Kidney problems (including bed wetting)

Photographs by Adam Hughes and Michela Metcalf

Michela Metcalf - 12