Lyme Stories

Nicola – Aberdeen

I have had chronic relapsing Lyme since 2008- I have positive tests and 5 private specialists say I have Lyme but I am denied NHS treatment due to a total lack of understanding of the complexity of this disease. I know far more about Lyme than any NHS Doctor I have ever met. If I could not afford private treatment, I would probably be wheelchair bound by now.

Current Location: Aberdeen
Infected in: isle of Rhum
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Belinda – Surrey

Despite Lyme being spread by ticks, it is possible that my infection was caused by mosquito bites in September 2012. Initially misdiagnosed with cellulitis, I have had 2 weeks doxycyclin a week after being bitten and have a positive test from Porton Down for Borrellia afzelli. Second test in February 2013 was also positive.

Current Location: Carshalton, Surrey
Infected in: Huntingdon, Cambridgeshire – September 2012
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Adelle H – North Yorkshire

Because of the lack of knowledge in this disease, I have lost my dignity, my human rights, my house, my life! When I was little I dreamed of growing up, this was NOT what I imagined life would be!

Current Location: North Yorkshire, UK
Infected in: Black Forest, Gemany
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Louise Dean, London

Lyme – a treatable illness that is left untreated and left to destroy lives.

Current Location: Ilford, London, UK
Infected in: Limousin, France
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Joanne Drayson Guildford Surrey

I never had a positive blood test but then they are antibody tests and research shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis I continued on antibiotics for many months. Both my doctors continued to treat me despite Health Protection Agency advising against long term antibiotics. I have recovered my health, I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work, cycle and live a normal life. Life is such a joy.

Current Location: Guildford Surrey
Infected in: Woods across from where I live in Guildford Surrey
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B in Derby

Current Location: Derby
Infected in: Not known
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Emma Greener, Beverley

Current Location: Beverley, East yorkshire
Infected in: North Yorkshire moors or Upstate New York
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Lyme wrecked my life

Current Location: Oxfordshire
Infected in: My allotment in Oxfordshire
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Sue K, London

Current Location: East Dulwich, London, UK”
Infected in: Uppsala, Sweden
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Catherine, Hampshire

Current Location: Hampshire UK
Infected in: Hampshire UK
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Elliot, Hampshire

Current Location: Hampshire UK
Infected in: Hampshire UK
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Susan – Aberystwyth

Current Location: Aberystwyth
Infected in: Aberystwyth
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Nadine E. – Brighouse

Current Location: Brighouse, West Yorkshire
Infected in: Hungary
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Jordan Majeika-London

Current Location: London
Infected in: Dorset
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Sarah B – Kent

Finally, 6 months after relapsing, I managed to start some new medication, which – within days- reduced my pain, and now, two months in, mean that many of my days are painfree. I’m still unable to work, and some days just having a shower is all I can manage BUT some days I’m 70% back to where I was before this all happened.

Current Location: Ashford, Kent, UK
Infected in: Nr Dunkeld, Scotland
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JG Guildford

Current Location: Woking, Surrey
Infected in: North Downs near Guildford
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“Gunnar from Folkestone”

Current Location: Folkestone, Kent
Infected in: Holland lake district
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Hazel in Hertfordshire

I rang NHS Direct. I described the red bullseye rash. They said, “You need to go to Urgent Care” GP there said, “It’s an infected insect bite. I’ve seen loads of these. They go away in a week or so.” He wouldn’t give me antibiotics or anything else. How many people has he condemned?

We need to educate EVERYBODY!

Current Location: Hitchin, Hertfordshire, UK”
Infected in: Welwyn, Hertfordshire, UK”
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Richard – Hertfordshire

Current Location: Royston
Infected in: VERMONT USA
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R.Black – Brentwood, Essex

R.Black – Brentwood, Essex

Current Location: Brentwood, Essex, UK
Infected in: Possibly the New Forest and maybe also Thailand
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27 years of pain, disability and disbelief

27 years of pain and illness since the tick bites – I’ve lost my marriage, my career, my house and my social life, and the country has lost a scientist and a teacher. What a shameful way to deal with the health of the British people, and what a loss to our economy.

Current Location: Norwich UK
Infected in: Applecross peninsula, North West Scotland
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Karen O’Shea Cardiff

Current Location: Cardiff, Wales
Infected in: Cardiff, Wales
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Helen Y – North Yorkshire

Lyme disease has left me living life in the shadows, swinging between managing my life and being left in bed really ill.

Current Location: Harrogate, North Yorkshire, UK
Infected in: North Yorkshire moors UK
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Andrew Gold – Lucky to not be worse

10 weeks passed while I was suspected of being psychologically, not physically, ill …..

Current Location: Strathconon, Highlands, UK
Infected in: My garden
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Hattie, Devon

Lyme disease took away my career, my hobbies and a big chunk of my life. I was unable to work from 1993 until 2010 and I even had to fund my own treatment.

Current Location: Blackdown Hills, Devon
Infected in: Blackdown Hills, Devon/Somerset border.
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Viv B -Berkshire UK

Current Location:
Infected in: Runnymead, Berkshire
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Toni K – Shropshire

Current Location: Oswestry, Shropshire
Infected in: Llansantffraid, Powys
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Tracy Brennan, Dublin, mother of 3 small children

No rash, no flu like illness and no recollection of a bite. Just in the wrong place at the wrong time. Paying for it now. Hoping and praying one day I will be well again to look after my 3 small children. Tracy, age 38.

Current Location: Dublin, Ireland
Infected in: Montauk, Long Island, US in 1994
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Sarah-Colchester

Current Location: Colchester
Infected in: Hong Kong
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Carole C Scottish Borders

Current Location: Scottish Borders
Infected in:
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Tony Bent, Basildon, Essex

The ignorance in the HPA and DOH is absolutely inhumane. Things need to change.

Current Location: Basildon, Essex
Infected in: Basildon, Essex
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Fiona and her strange mix of infections

Current Location:
Infected in: Shropshire
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Sandra – Kerry Republic of Ireland

Current Location: Cork, Ireland
Infected in: Killarney National Park,Kerry, Republic of ireland
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Barney Brig, Cleveland, UK.

Current Location: Teesside, UK
Infected in: Grenada, West Indies
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Jane B – Exeter

Because of Lyme Disease, my health has been terrible for 16 years. I have no help, either medically or financially – I lost my job through this illness and am also denied benefits. I have already lost my gallbladder, and now I am having problems with my heart. I cannot afford private testing or treatment and have to rely on trying to remain positive, which is hard to do. Living with this disease is hel

Current Location: Exeter, Devon, UK
Infected in: Dartmoor, Devon, UK
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Fiona – Sutherland

I no longer garden, work, DIY, hill walk with my dogs. Instead, l fight to get well, fight GPs and fight the NHS.

Current Location: Southwest Sutherland, Scotland
Infected in: Southwest Sutherland, Scotland
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In search of freedom – Kerrie

Current Location: Edinburgh, UK
Infected in: Dartmoor National Park, Devon, UK
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Tara S – Brighton

Current Location: Brighton
Infected in: Southern India
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HPC – Northamptonshire

Current Location: Northamptonshire, UK
Infected in: South of Finland
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Zoe Age 15- Surrey

I have lost almost a year of my life to this awful disease- I am only 15, that is a lot of my life so far. Doctors need to get there act together on this and take Lyme seriously.

Current Location: Near Woking, Surrey
Infected in: No idea.
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Having to have private treatment!

Current Location: Douglas. Isle of Man
Infected in: Richmond Park, Surrey, UK in the Isabella Plantation
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Beware of hedgehogs!

Current Location: Rotherham, South Yorkshire
Infected in: Rotherham (in my garden)
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Susan- Oxfordshire

Current Location: Oxford
Infected in: Uffington near Oxford
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Raj N – Watford, Hertfordshire

I thought I was going to die. Symptoms in order of occurrence: Noticed rash on chest, ear ache, severe headache, stiff neck, back pain, fevers, cold sweats, upper body tremors, hip pain, right knee pain, left knee pain, double vision, creaking joints.

The mental effects were a big shock: short term memory loss, confusion, couldn’t plan local journeys, missed appointments, and couldn’t remember to take medication…totally spaced out feeling all day.

Current Location: Watford
Infected in: Merry Hill, Sherwoods Wood Watford
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Cheryl – East Sussex

Current Location: Hastings, East Sussex
Infected in: Upstate New York
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Gail M – USA

Current Location: Edinburgh, Scotland/ Chester County, PA, USA
Infected in: Likely New Hampshire USA, but uncertain
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Will – London

I was bitten by a tick in the Black Forest, Germany, in 1997. It was the one and only time I have been bitten. When I got back to the UK I noticed a red rash near the site of the tick bite. I thought I had some nasty fungal infection but my doctor said I had nothing to worry about.

Over the next week flu like symptoms got worse and I did some research and found out about Lyme Disease and took the list of symptoms back to the GP. She took a couple of minutes to take it in and then sent me for a blood test, when I returned 15 minutes later I found she had booked me into the local Royal Infirmary where I was treated for 7 days with IV antibiotics.

I have never had any follow up from the hospital or the GP.

Current Location: London, UK
Infected in: Black Forest, Germany, in 1997.
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Susanne Sklar’s Story

Current Location:
Infected in:
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Stephen Y

I was bitten whilst weeding in my garden in south Wales.

Current Location: Iceland
Infected in: South Wales
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Maria Peppiatt

Current Location:
Infected in: My garden that backs on to Hockley Woods in Essex.
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Classic Bulls Eye rash,symptoms and a Blind G.P.

Current Location: Poulton le Fylde
Infected in: Lancashire. Out with Dog
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James Adlington Porlock Somerset

Current Location: porlock somerset
Infected in: exmoor
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Linda B, Hampshire

Current Location: Hampshire
Infected in:
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Four visits to four doctors

Current Location: South Wiltshire
Infected in: South Wiltshire
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Simon B – Surrey

It’s not gout! It’s something else. GPs need to listen to their patients and perhaps do some homework rather than just digging in and going with what they know…

Current Location: Croydon
Infected in: Surrey Hills, UK
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Don’t take “no” for an answer

I suffered neurological pain and chronic fatigue for about 18 months due to a bacterial infection which is treatable with antibiotics. And I knew I was bitten by a tick. And I told doctors what the problem was from day one.

Current Location: Kendal, Cumbria
Infected in: Grizedale Forest, Lake District, UK
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Christine Ince – twice bitten

Current Location: Scottish Highlands
Infected in: Home – Scottish Highlands
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The Rockies Horror show

Current Location: Brighton UK
Infected in: Canadian Rocky Mountains
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Linda – Cornwall

Current Location: Penzance, Cornwall UK
Infected in: Perthshire – hill walking
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JMG – Glasgow

Current Location: Glasgow
Infected in: Argyll, Scotland
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Paula – Kent

Current Location: Kent
Infected in: Kent, UK
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Anita Nath

Current Location: Birmingham, UK
Infected in: Les Cabannes, Ariege, SW France
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Laura J Worcestershire

Current Location: Worcester, Worcestershire
Infected in: Wurzburg Germany
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Mandy

Current Location: Worcester UK
Infected in: Belluno Italy
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Alison G – Herefordshire

Current Location: Herefordshire UK
Infected in: Herefordshire
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S.T – Dartmoor

Current Location: Dartmoor, Devon
Infected in: Santa Cruz, California
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Jane from Connecticut

Current Location: wilton,ct
Infected in: wilton,ct or rye , ny
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Chronic Lyme diesase IS affecting my quality of life

Current Location: Northampton UK
Infected in: Allotments (both bites) Northampton UK
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Roger F – Suffolk

Current Location: Wrentham, Suffolk, UK
Infected in: Kayaking on the Broads, Beccles, Suffolk
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Anne T – Scotland

Current Location: Farm, Aberdeenshire
Infected in: Farm, Aberdeenshire
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shaun 30 yrs, not treated,

Why wont the doctors help? They tell me I am not liked I am a medical car crash yet mention lymes ,n they go potty

Current Location: suffolk
Infected in: thetford forest
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Des from Halifax

I lost my health my business my partner my savings now I am selling my house to pay for treatment

Current Location: halifax uk
Infected in: Ogden Halifax uk
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Andrew – Devon

Current Location: Devon – UK
Infected in: Scottish Highlands – UK
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Tiny tot

Typical EM rash misdiagnosed

Current Location: Dorking
Infected in: No idea. Somewhere in or around Dorking or maybe a hobbled own farm or Lego land?!?
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Helen Harvey 16 years of lyme

Read Helen’s story

Current Location: Ashtead surrey
Infected in: Western Australia
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Jan Cunningham Worcester Park, Surrey

Read Jan’s story

Current Location: Worcester Park, Surrey
Infected in: my garden (foxes) and/or Esher Common in Surrey/Richmond Park
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Undiagnosed Still

Read the Gamekeeper’s tale

Current Location: HIGHLANDS
Infected in: HIGHLANDS
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Katarzyna- Hythe

Read Katarzyna’s story

Current Location: Hythe, Kent UK
Infected in: Mountains in Poland
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Carol Allett France

My brother – who is now 78 years old – was stricken with this terrible disease 3years ago.

Current Location: Brittany, France
Infected in: Brittany, France
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Theresa. Leicestershire

Four years of GP visits with increasing ill health and all dismissed as not related to the bite which I apparently kept referring back to.

Current Location: Leicestershire
Infected in: Belvoir castle Rutland
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Natasha’s Story

Suffered for nearly 14 years due to undiagnosed Lyme disease and co-infections and forced to get private treatment in America as no help from the NHS.

Current Location: South West UK
Infected in: Hong Kong
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Benes Smyth Ireland

Late diagnoses now chronic neuroborreliosis Lyme Disease…..struggling with symptoms on a daily basis!

Current Location: Ireland
Infected in: Ireland
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Sarah N

Read Sarah N’s story

Current Location: Sheffield
Infected in: Dorset, Durdle Door
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Eight weeks to save my life

Read more

Current Location: Stroud, Gloucestershire
Infected in: Stroud, Gloucestershire
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Carol D Near Exeter, Devon

Current Location: Devon
Infected in: Devon
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Niiki – Lancs

I was bitten 16 months ago and over the last 12 months my life has been terrible.

Current Location: Wigan Uk
Infected in: Winstanley woodland
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Valerie – Sheffield

Since being bitten by a tick three years ago as well as suffering flystrike from an awful lot of nasty little black flies I have had all sorts of problems.

Current Location: Sheffield
Infected in: Derbyshire Moors
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Pam Meachin – Manchester

Why is this Disease being ignored ?

Current Location: Manchester, UK
Infected in: Grizedale, Lake District, UK
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Sarah M – Essex

When my ‘ME’ symptoms got much worse, it was found that I was suffering with Lyme disease, but no thanks to the NHS.

Current Location: Colchester, Essex, UK
Infected in: No idea
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Pat

Bullseye rash in 2006 but got diagnosed in time and put on 6 weeks high dose Doxycycline.

Current Location: Upminster, Essex
Infected in: Ardennes, Belgium
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Susan H – Wiltshire

Researching Lyme disease I believe I’ve had it for over 25 years.

Current Location: Salisbury, Wiltshire, UK
Infected in: New Forest
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Clare R – Surrey

I lost 2 years of my life to something that could have been treated quickly and if my Husband’s friend had not told us about Lyme disease I might never have received any treatment.

Current Location: Horley, Surrey
Infected in: Horley, Surrey
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Jane – School Field Kent

Sick for 2 years even though I got antibiotics from week 5 and then saw a consultant

Current Location: Essex
Infected in: Canterbury, Kent
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Dan Hickson – Cheshire

Went on holiday had several insect bites. 3 weeks later started to experience severe neurological symptoms which then developed into every possible symptom you can think of from vision loss to joint pain over a few weeks.

Current Location: Cheshire
Infected in: Fuerteventura
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Steadman Hemel Hempstead

My daughter has Lyme Disease but is way too ill to write this herself. She has been ill for 8 years now and is completely bed bound, she has to wear ear plugs and ear protectors over them because of sensitivity to noise.

Current Location: Hemel Hempstead
Infected in: Florida U.S.A.
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Rose- South Herefordshire

May 19th 2014, Took a card to my sister in law for her Birthday as I was leaving she said the foot path is open again now ( this is the path across the field to were I live) so that is the way I went home, it was very over grown had to fight my way through in places, lot of nettle stings I was wearing a skirt and flip flops. Mistake I now know…

Current Location: South Herefordshire
Infected in: Weston-u-penyard open field near woods
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CF – Ashdown Forest, East Sussex

Diagnosed in under a week. Owe my treatment success to BURRASCANO’s Lyme guide.

Current Location: Ashdown Forest, East Sussex, UK
Infected in: Ashdown Forest, East Sussex, UK
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Trevor Whitehouse (Chairman) ANPR Ltd

No sign of a tick or a target rash, but my life became a living hell. 3 heart attacks, bells palsy, double vision., paralysis, fatigue, Parkinson’s tremors and forty tons of worry, trips to the neurologist, tests and eventually following a spinal tap given 18 months to find a cure elsewhere or die.

Current Location: Preston UK & Malaga Spain
Infected in: Possibly a wasp sting 1992 Preston Guild
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Loraine G – Belfast

I think the worst part of this illness is the medical profession don’t believe your ill, I felt the treatment I received from my own GP, was more an evaluation of my mental health, I was treated as if I was crazy – having some sort of audacity to suggest to them I have symptoms of Lymes and Co Infections and for their help!

Current Location: Belfast, Northern Ireland, UK
Infected in: Annadale Embankment, Belfast, Northern Ireland
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Joel Scotland

I saw an NHS neurologist who said the tell tale “bulls eye” rash which I had around my tick bite was not relevant and that my Central Nervous Symptoms are Functional and dissociative Neurological Symptoms. He offered no cause for these symptoms, merely repeated back my symptoms. Lyme Disease is the cause and I now have Chronic Lyme Disease as a result of the delay.

Current Location: Dunbar, Scotland
Infected in: Spott East Lothian
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Fiona – Stockport

I know I’ve suffered various missed diagnosis of hypothyroidism, active viruses, protomyxzoa, lyme disease, mycoplasma. One by one I get to the root of my problems and prove the NHS wrong when I’m in a rut. When you have a diagnosis of ME/CFS/Fibromyalgia you are actively discouraged from seeking out the bacterial causes. No amount of pacing and rests will cure untreated bacterial infections or endocrine or immune problems. While getting your rest has its place and you can’t push through severe illness, once you feel better, you are less preoccupied about getting rest anyway. People comment how positive and proactive I am, but I feel like I have to be and couldn’t be anything other than that type of person.

Current Location: Stockport
Infected in: UK
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Janice Haddon, My journey through Lyme

This is the most painful, debilitating illness that currently has no cure. That needs to change. Read Janice’s story.

Current Location: Marlow, Buckinghamshire
Infected in: Unknown, possibility of a number of UK locations
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Consequences of not being taken seriously

When my doc suggested I was getting one thing after another, I told him I felt this was all one illness and was not getting better. I was tested for LD and had 2 weeks Doxy. antibiotics and no further treatment.

Current Location: Southampton, Hampshire
Infected in: In garden by woods.
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Vanessa Rochester Kent

My dog was cured. My life is diminished.

Current Location: Rochester, Kent
Infected in: Norh Devon
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Naomi Cassman

June 1999. Picking my kids up from school and walking home along river in Richmond-upon Thames in Surrey. I began to notice how tired I was. Had a picked up a bug? Life was busy with work, kids, dog, house etc. Ignoring the fatigue, the weeks went by as usual when one day, writing a children’s series, at my computer, I found myself staring aimlessly at the screen. I couldn’t understand the normal screenplay layout that was normally second nature to me.

Current Location: brighton
Infected in: Richmond Park, Surrey, UK
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Mick, Norfolk

Be wary at music festivals as sheep and other are on the fields prior to festival..

Current Location: Swaffham, Norfolk.
Infected in: Norfolk/ Suffolk
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Suzi Hollywood. Essex UK

A life destroyed by undiagnosed Lyme disease

Current Location: Essex , London, UK”
Infected in: Essex UK”
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