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.
Lyme disease symptoms develop 3 days to 3 months after being infected. The commonest time period is thought to be 1 to 4 weeks.
“Erythema migrans” rash
A flat, red rash which progressively expands, called “erythema migrans”, is a common symptom of Lyme disease and unique to this infection. It may be small, or may expand and become quite large. It is not usually itchy, painful or raised. As it spreads out, it may heal at the centre and develop a central clearing, or rings like a target or a bull’s-eye, although different and less distinctive rashes are also common. On dark skin, erythema migrans tends to look similar to a bruise.
At least 1/3 of Lyme disease patients never develop a rash. (Source: Public Health England)
Erythema migrans can be difficult to distinguish from some other types of rash, including ringworm and tinea, especially if relying on photographs.
Non-specific symptoms are very common in Lyme disease, but they can also be caused by many other illnesses too.
Some of these symptoms may be mild, others severe. People with Lyme disease have at least two of these symptoms, but usually more.
- Flu-like symptoms such as fever, swollen glands, night sweats and tiredness; these can be mild or very severe;
- Joint or muscle pain; joint pain can be noticed in one joint and then switch to different joints in a short space of time; over time, joint infection can lead to arthritis in one or more joints; muscle pain typically affects all large muscle sets and is particularly noticed in the arms and legs;
- Neck pain or stiffness;
- Memory problems or trouble concentrating; this is different from general absent-mindedness and can involve forgetting entire skill sets, people, or periods of time;
- Headache; this can take the form of cluster headaches which are present for days, weeks or longer;
- Other neurological symptoms; what the patient feels can include pain, numbness or paralysis, often on one side or sometimes in one random part of the body; tingling or pins and needles; twitching; some people become abnormally sensitive to light, sounds or even smells; some people develop intermittent eyesight problems.
The symptoms of neck pain, memory problems, headache and other neurological symptoms in Lyme disease are caused the bacteria which causes Lyme disease attacking the nerves and brain, and the person’s immune system fighting the infection.
Doctors may categorise them as
(a) inflammation of the nerve roots used for feeling and moving (this is called radiculitis);
(b) inflammation of the nerves that make up the brain (this is called cranial neuritis); and
(c) inflammation of the membrane that surrounds the brain and spinal cord (this is called meningitis).
Lymphocytic meningoradiculitis or Bannwarth syndrome, which is specific to Lyme disease, occurs when the spinal cord fluid is filled with a a very high level of lymphocytes (a type of white blood cells) fighting the bacteria that cause Lyme disease, and is experienced by patients as an intense nerve pain radiating from the spine in the neck and small of the back, and spreading to the extremities.
Read our patient descriptions (below) for more detail on their subjective experience of these symptoms in Lyme disease.
Unusual symptoms occur in a small percentage of Lyme disease patients. The symptoms listed below can also be caused by some other illnesses. They include the following:
- Facial paralysis, usually only on one side, called Bell’s Palsy;
- Heart arrhythmia, which means irregular heartbeat, which can be life threatening. The commonest known type of arrhythmia associated with Lyme disease is called “heart block” but Lyme disease can cause other types of arrhythmia too;
- Encephalitis, which means a swollen brain; this requires treatment in hospital in its acute form, but it can also occur in a milder form which causes very severe headache but is difficult to diagnose;
- Psychosis, or other acute mental symptoms;
- Lymphocytoma is a symptom of Lyme disease which occurs typically on the earlobe, scrotum or nipple, but can appear elsewhere on the body.
Chronic Lyme disease symptoms
There is currently only one symptom in the medical literature which is defined as being specific to “chronic” or long-standing Lyme disease infection, Acrodermatitis Chronica Atrophicans.
Acrodermatitis Chronica Atrophicans (ACA), is unique to Lyme disease and can occur in people who have been infected with Lyme disease for many years. It occurs particularly on the palms of the hands and soles of the feet; it begins with painful inflammation of the skin (called “acrodermatitis”) which lasts months or years, often with bluish red discolouration, and ultimately leads to thinning of the skin ‘like tissue paper’ (called skin “atrophy”).
This symptom can be mistaken for peripheral vascular disorders.
Some patients experience a delayed recovery from Lyme disease symptoms, after their antibiotic treatment has ended. Sometimes symptoms do not resolve, or not all of them resolve. In some patients, this may be because antibiotic treatment has not eradicated the bacteria. (There is currently no test to check this.) In others, damaged tissues may need a long time to heal. In other cases, tissues may be permanently damaged, and it is possible that, in some cases, Lyme disease has triggered another condition such as an autoimmune disease. All of this is theory, as the small amount of research published so far does not give us conclusive answers.
Any of the symptoms listed above may persist for months or years.
- Arthritic symptoms may persist or even worse after treatment because damage to joints, including erosion of cartilage, often does not heal; and thus all subsequent movement will continue to inflict wear and tear on an already damaged joint.
- Nerves can take months or even years to heal fully, and this means that a wide variety of neurological symptoms of Lyme disease can last a very long time after a Lyme disease infection. Such symptoms may include Bell’s Palsy or other paralysis, and problems with memory and concentration which could be likened to the slow recovery from a concussion or other head injury. As with convalescence from concussion, rest is essential and over-activity can make symptoms worse.
- Cardiac symptoms in Lyme disease are often caused by damage to the nerves which control the heart and the way it beats. Some patients need an artificial pacemaker for a period of time while healing, whilst others may require an operation (called a catheter ablation) to rectify the damage to the nerves.
- Non-specific symptoms (as listed above) very often persist, according to patient anecdotes, and those often reported include fatigue, pain (in both muscles and joints, as well as neck pain and headaches), non-specific neurological symptoms, including memory and concentration problems, sleep disturbance and anxiety.
A great many patients also report the onset of additional symptoms after suffering from Lyme disease for a prolonged period of time, including allergies or intolerances to foods and other substances; gastro-intestinal disturbances including constipation, diarrhoea, bloating and pain; alcohol intolerance; inability to tolerate heat or cold; problems with eyesight and/or hearing; and anxiety, panic attacks and depression. Research is needed to establish if these symptoms are caused by Lyme disease infection, and if so, the mechanism of pathology.
For further discussion, visit “Persisting symptoms in Lyme disease”
Patients’ own descriptions of symptoms
“One day, after I had been ill for about a month, I got into my car and realised I had forgotten how to drive. I sat puzzling over the pedals and controls, but I couldn’t even remember how to start the engine. I’d had my driving license for fifteen years, and I just felt so ashamed.”
“I used to get strangers coming up to me every time I left the house. They asked me personal questions and they knew everything about my family and my life, but I had no idea who they were. I couldn’t recognise anyone’s face except my own family. It went on for months and I found it so upsetting I just didn’t want to leave the house any more. I lost so many friends because I literally lost all memory of them.”
“I forgot how to read. I love reading but I couldn’t even remember the alphabet. Eventually I could read again after nearly a year. “
“One day I got lost while I was driving my son to his nursery. It was the pre-school I’d been taking him to for over two years. So my four-year-old had to tell me how to get there, but on the way back home I got so lost I just pulled the car over and cried for half an hour. I was terrified.”
“I keep losing words. I’ll be in the middle of a sentence, and stop dead because my brain can’t find some everyday word like ‘shoes’ or ‘microwave’. It gets dead annoying.”
Difficulty concentrating (often called “brain fog”)
“My husband always used to read me articles from the newspaper over breakfast, but when I got Lyme disease I couldn’t take anything in. Trying to follow what he said gave me a headache that lasted all day. I found it really irritating if he even spoke to me, because of how bad it felt inside my brain just trying to take it in.”
“…my eyes and brain go funny and I can’t do my schoolwork. I find it so hard doing maths, I am good at it sometimes like I used to be but other times I am so stupid I want to punch myself in my stupid brain. And I hate myself.”
“I used to work full time in the city in investment banking. I can’t imagine how I could possibly work in my old career, … I can no longer focus or remember words mid sentence. My numeracy and spelling are not the same.”
“I always suffered from migraines and when I caught Lyme disease, I got a headache as bad as a migraine which lasted me 6 months.”
“I had a headache that would throb even worse when I lay down. The pain went all down my neck. I could only sleep propped up on cushions. I took codeine but it made no difference. The pain made me go a bit out of my mind for a while. After two weeks I just lost it and ended up bashing my head against the wall – even that didn’t make it hurt any more than it was already hurting. I am still hoping to wean myself off morphine.”
“I had a random range of anxieties that developed including a fear of falling through floors. I slept on the lounge floor and I was afraid to shower in case the floor gave way. This had a huge impact on mine and my family’s life.”
“I felt anxious all the time and had almost daily panic attacks where I felt as if I couldn’t breathe and thought I was going to have a heart attack because my heart was beating so hard.”
“I dreaded social gatherings because all the different voices and the lights were overwhelming, my brain couldn’t cope with all the stimulations and it used to trigger panic attacks. I stopped leaving the house.”
“I couldn’t walk upstairs so I had to sit on my bottom and lift myself up, one stair at a time. A friend lent me her old crutches, but a few times my legs buckled underneath me.”
“My left shoulder hurt all the time and I found it difficult to change gear in my old car, so eventually I bought an automatic one. I got treated for Lyme disease years ago but this problem hasn’t got any better.”
“I went straight into the ICU with a very fast heart beat that was skipping beats. I felt ready to jump out of my skin every moment. They did an operation called a catheter ablation to make it beat properly, but it didn’t work the first time so they had to do the operation again. I am truly grateful to the doctors who fixed my heart. They were wonderful and I would have died without them.”
“I was taken into a ward and tested for epilepsy because I was getting increadibly violent spasms in the night. My whole body would tense up so suddenly I would spring off the mattress. I was also getting these blanks where I would just lose a few minutes at a time. I would be talking to someone and then the next thing I knew they weren’t in the room, but I had no idea what had happened. One time I was in the chemist, then suddenly I was at home with a jar of vitamins in my hand – maybe I stole them, I have no idea. They said I had abnormal brain waves but it wasn’t epilepsy. They gave me epilepsy drugs anyway, which were useless and made me feel even more tired.”
“I had muscle twitching that made me drop things, spill drinks down my front and fall down stairs. I couldn’t focus my eyes properly so it was hard to read and dangerous to drive.”
“I couldn’t hear properly. I once had the TV on really loud, but I still couldn’t hear what it was saying because everything was getting drowned out by the rustling sound of my husband reading his newspaper in the next room. If you put your hand on your head and slowly move it, you’ll hear your hair making a crackling noise. When I had Lyme, the loudness of that sound when my head was on the pillow could stop me getting off to sleep at night. When something like that happens, you really fear that you’re going out of your mind.”
“I kept feeling a kind of buzzing as if electric shocks were running through my body.”
“I had sleep deprivation due to my legs going into spasms and my body jumping all night.”
“I lost the feeling in my toes, my nipples and the outer sides of my hands. It’s never come back even years after being treated.”
“I am constantly tired and dizzy. I am unable to work full time and frequently have to spend entire days in bed. My social life has dwindled away…”
“The tiredness from Lyme disease was nothing like the tiredness from doing too much sport or hard work. It was a painful exhaustion that never goes away, no matter how much you rest, how much you sleep, no matter what you do, you feel too exhausted to get up and eat a meal, too exhausted to chew food, too exhausted to follow the plot of a film on television, too sleepy to take in what people are saying to you. I would put on one sock and then have to rest while I got my willpower up to put on the other one. I would drink tea with a straw so I could put it on the table instead of getting the muscle burn and trembling from the effort of holding the mug to my mouth. Have you ever been so tired you thought you might vomit? That’s how tired I felt when I woke up every morning.”
One patient’s account
This account was submitted anonymously in response to a Caudwell LymeCo Charity online survey of patient experiences.
“I was bitten at Disneyland Paris in June 2013 on a family holiday. I had the classic bullseye rash all over my body and prescribed one week’s worth of antibiotics then I never gave it a second thought. Initially I had severe flu like symptoms which left me bed bound most weekends. At the time my daughter was only 4 years old. I found it incredibly difficult to lift my legs and so my husband had to assist me up the stairs and into bed.
“Symptoms became more severe and I had a random range of anxieties that developed including a fear of falling through floors. I slept on the lounge floor and I was afraid to shower in case the floor gave way. This had a huge impact on mine and family’s life. I visited the GP regularly during this time and was told I was suffering from work related stress I was also referred to a psychologist. I am a lecturer in a busy city centre Further Education college and, because I thought it was my job making me poorly, I was more determined to not take time off. It was the most difficult and stressful time. I thought I was going crazy. I was fatigued, run down, my face drooped on one side and my brain didn’t feel like it belonged to me.
“My anxieties added to my tiredness until I eventually I broke down (I was walking over a bridge contemplating suicide on the way to collect my daughter from school and felt my family would be better off without me and that they had had enough of my ailments and struggles). My husband googled my symptoms and realised I had Lyme Disease.
“Eventually I took some time off work and my blood was sent for testing. At this point my bites had reappeared and so I was prescribed a further 2 weeks of Doxycline. I began to feel better for a couple of weeks but then slowly started with aching joints, difficulty walking up the stairs on an evening, and brain fog. The GP said it would be highly unlikely that I would have Lyme Disease, especially from Disneyland, and especially if I hadn’t seen a tick!
“I received a positive result and was given 4 weeks Doxycline in 2014. I felt better again for a few weeks but then slowly my aching joints and brain fog returned. I reduced my full-time teaching hours to part-time as by the end of the working week I can’t function or move. My daughter is now 7 and I also have a 1 year old son. I was reluctant to get pregnant as there is an uncertainty about Lyme being passed on but I had been given the all clear from the Infectious Disease Dept in 2014 so I waited another year to be certain. My symptoms seemed to subside during my pregnancy but as soon as I gave birth I have struggled to walk properly as I have a searing pain in my right hip….
“Even reaching down to pick my son up hurts and luckily my husband runs around after the children on an evening, but I don’t want to live like this. I have visited the GP a ridiculous amount of times, so much so I am afraid to go. My current symptoms are…. aching joints, searing pain in hands, hands curling in, cold feet and hands, dizzy spells on standing, unable to straighten back on standing, difficulty walking up the stairs on an evening, forgetfulness and I struggle to find my words, which has become more apparent whilst I am teaching my students.
“…The most frustrating thing is that, even though I tested positive for Borrelia Burgdorferi, my ongoing symptoms are not linked to me having Lyme Disease and the NHS continue to waste money testing my blood for illnesses I do not have. So when I get the all clear, I have to phone the doctors again and make another appointment. I think they think I have been treated and that is it, so why have I never felt well since being bitten?”
Another patient’s story
“It was like the worst day of the worst flu I’ve ever had, but it went on for years and I had to just try to pretend I felt OK, and keep going.
“I was trying to hold down a job while getting fevers every single night and waking up drenched in sweat, for months, doing the shopping and keeping the house tidy. The whole time, I felt exhausted and my muscles hurt as if I’d been beaten with sticks. I didn’t want to go out with my friends, I just wanted to stay in bed. I cancelled things so many times that my friends just stopped inviting me. They probably thought I didn’t like them any more, when really I was desperate for someone to come round and help me but too embarrassed to ask.
“Other symptoms started appearing. I got migraine-type headaches for two weeks at a time. I had muscle twitching that made me drop things, spill drinks down my front and fall down stairs. I couldn’t focus my eyes properly so it was hard to read and dangerous to drive. I felt intense pain from light, sounds and even scratchy labels inside my clothes – the doctor looked at me like a lunatic when I told him that one. My muscles burned from the effort of walking upstairs and from holding my arms up long enough to wash my hair. My heart went pounding inside my chest from the effort of walking around my own house. I got griping stomach aches and diarrhoea from foods I thought were healthy like yoghurt, bread and fruit.
“I would get constant dizzy spells throughout the day which only lasted a few seconds at a time but just happened again and again. Sometimes I just felt kind of disoriented like I was drunk. My reactions were so dopey it was like I was operating in slow motion, and I knew I wasn’t safe driving my car, but the idea of trying to walk when I was so weak and exhausted could make me sink in a chair and cry.
“The mental symptoms were the most frightening. I couldn’t think things through properly, so I was afraid to make important decisions about my finances, or anything really. I ended up being late on paying bills because I kept putting them to one side, to deal with when I felt my brain was working better, but that day didn’t come. I lost my self confidence so much I could dither for an hour over what clothes to put on in the morning and what to eat for breakfast. I got sacked from my job because I had too many sick days off and made mistakes when I was there.
“I got memory loss that made me stop recognising some of my friends and I used to get weird flashes of anger for no reason. That’s just not me at all, I am a calm person, a bit of a wimp if I’m honest. Sometimes the anger flashes came upon me while I was all alone and I would have angry imaginary conversations in my head. I truly thought I was losing my mind. Eventually it turned into depression and suicidal thoughts and I didn’t leave the house unless I absolutely had to.
“I lost quite a few friends and I was even rejected by some family members who just thought it was all in my head. It’s ironic that the worst symptoms really were the ones in my head – the memory loss, depression, headaches, brain fog and confusion, all those symptoms were happening in my head. I needed help and love, but I got judged and blamed instead.”
Lyme disease in young children
There is currently very little published medical research documenting Lyme disease symptoms in young children, and none on babies, or on patients in the UK.
One research paper describes the neurological symptoms in 96 children in North America. The main symptom in this category was encephalitis (swelling of the brain), which children would experience as very severe headache and blurred vision, which could eventually become blindness:
“The most frequent neurologic symptom was headache, and the most common sign was facial palsy. Less common manifestations were sleep disturbance, and papilledema associated with increased intracranial pressure. Signs and symptoms of peripheral nervous system involvement were infrequent. The most common clinical syndromes were mild encephalopathy, lymphocytic meningitis, and cranial neuropathy (facial nerve palsy). In contrast with adult patients with neurologic Lyme disease, meningoradiculitis (Bannwarth’s syndrome) and peripheral neuropathy syndromes were rare.”
A child’s story
The following account was written by a British mother whose child was diagnosed with Lyme disease as a baby.
Child D was diagnosed with Lyme disease at the age of three. The following text is his mother’s description of D’s symptoms:
“When D was born he was a beautiful baby and he seemed to develop normally. He said “Mummy” when he was only 9 months old and could also say about nine other words, in his own way. He was crawling at that age too.
“By the age of 10 months he seemed to be going backwards. He stopped crawling and seemed too floppy to even hold up toys. He hardly looked at me any more, he just stared into space; even when I got right in front of him, there was no reaction, I couldn’t even tell if he was really seeing me. He just lost interest in everything. He cried 22 hours out of 24 and he never slept for more than about 20 minutes at a stretch. He never seemed to fall asleep, it looked as if he was basically swooning from the exhaustion of crying so much. He would screw his eyes up and turn his head away from the light, or from sunshine. He never looked at people when they called his name. He stopped trying to copy words or make any sound but crying. He got extremely severe constipation and ended up in hospital a few times for the doctors to deal with that, though sometimes he would have a day of explosive diarrhoea instead. You could see he had tummy ache by the way he pulled his legs up and writhed around while crying. Every time I changed his nappy the smell was honestly horrific. Between his second and third birthdays he had 12 stays in hospital, but they didn’t have a clue what was wrong. We met some wonderful doctors on this journey though, who went to extraordinary lengths to help us in whatever way they could, and I feel like crying when I remember how kind some of them were.
“The amount he sweated every night was unbelievable. We had to change the bedding as well as his pyjamas, sometimes several times a night. He was dripping with sweat sometimes by day as well, and his hair was pretty much always wet.
“When D was 2 he liked to watch DVDs. He watched the Ice Age movie three times a day, every day, for at least 4 months. When I tried to make him watch or do anything else he would cry so much it just seemed cruel. When he watched the film he was red around the eyes and his little mouth turned down, but at least he could be silent and seemed captivated by it. He also liked to watch the 30-second title sequence of some DVDs for hours at a time and would cry desperately if I actually used the menu to start an episode. He was given a tricycle, but the only way he was happy was if I put it on its side so he could lie on the floor and spin one of the wheels very close to his eyes. He would do this for long periods of time and seemed to find it calming. This was when our conversations with doctors turned to considering whether he was autistic.
“My overwhelming memory of D for the first four years of his life was crying. It became the background noise to my life, and screwed my stomach into knots for every second of it. Sometimes he was literally screaming as if in so much pain he was terrified of it. Other times he was wimpering as if he just couldn’t find any comfort. And occasionally he was weeping in profound sorrow; at those times he would actually look into my eyes, as if begging me to make things better.
“By the time D was three and everyone else’s children were talking, people kept asking me if he was deaf, because he had no reaction at all to human speech. People sometimes waggled toys in his face and couldn’t understand why he just turned his head the other way. At home he would lie on the floor doing nothing for hours, and when we left the house, he would put his hands over his ears and scream literally non-stop. He was diagnosed with allergy to gluten, dairy and several other foods, and when we took those out of his diet there was a sudden improvement in the crying and in his attention to the world around him. It only lasted a few weeks, though, and then he carried on getting worse like before.
“D was diagnosed with Lyme disease around his 4th birthday and very slowly improved once he was on antibiotics. He had antibiotics from a private doctor for nearly two years. The doctor felt like a lighthouse in a dark storm; he knew how to explain everything and could offer a solution too.
“D had already been late with a lot of developmental milestones – speech, walking, toilet training – and still hadn’t reached others, like drawing, colouring pictures and dressing himself. I would say it took him at least 6 years after he finished antibiotics for most of the symptoms to go away. The antibiotics were just the start of his healing. He needed speech therapy and physiotherapy to to help him catch up with the developments that should have been happening while he was ill. I had to sit on the floor every day and actually teach him how to play. I taught him how to use toys. I taught him how to roleplay. I taught him how to tickle people and fool around. He was slow and delayed in each step, always playing catch-up.
“I don’t know how to explain the relief I felt when he started talking. He gradually learned how to tell me about symptoms, like when he had a headache and wanted paracetamol, which he only asked for when the pain was very bad, and telling me when he couldn’t see properly and would like the light turned off. He could also tell me about the things he was interested in, and start to show me his personality. All through primary school he was this odd mix of very mature and very babyish. He could happily play imagination games with younger children and have mature conversations about science with adults, but he really struggled to connect with his own age group. What made it hardest was that nobody understands this illness, so even after we got his diagnosis, people kept asking me to explain and justify everything about him that they thought wasn’t normal. I constantly received trite suggestions which were nothing more than thinly veiled criticisms of my parenting skills. It was a watershed moment when I realised I could get rid of these people for good, by asking them to give me specific help rather than just advice!
“For some symptoms, we just had to wait and hope. He very often got headaches. He constantly complained of leg pains and refused to walk anywhere. Sometimes we would have to make him walk, and it usually ended up in him sitting down on the pavement and crying. He was always really big and sturdy for his age, and by that time he was too heavy for me to carry him. His eyes would go funny at school and he sometimes struggled to read, because he couldn’t see properly. I wish his teachers had been nicer; their casual indifference was unbelievably cruel. His physical coordination was very bad, especially fine motor skills. He was very prone to stress and panic, and he hated school, parties, family gatherings and even shopping because all the noise and bright lights still hurt his eyes and ears. If I didn’t take him away from these situations he would eventually throw a screaming tantrum, like a toddler.
“He could not produce legible writing. When his teachers began offering idiotic responses to my requests for help, I decided to home school him for year 4, and paid for an expert to give him coaching for his writing. She taught him how to grip the pencil properly and build up the strength and co-ordination in his hands. Apart from the home schooling he also went to three different primary schools, and the last one was absolutely wonderful. With the incredible kindness and skill of all the staff, they eventually helped him fully catch up academically and in social skills, ready to start secondary school.
“I would say he has recovered now, though he still suffers joint pain in both his knees and ankles and obviously has far less energy than his peers. I have been told his fine motor skills are below what they should be. He is still prone to headaches and terrible at sport. But at least he is capable of having an enjoyable day now. He feels OK most of the time. I can’t look back on his babyhood or primary school years without feeling overwhelmed by sadness. I couldn’t enjoy being a mother at all, seeing my baby suffer so much, but it finally feels as if the nightmare is over.”
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.