Case Study – Is lyme disease under-diagnosed in the UK?

Being a London GP, I was surprised when a patient presented with a sort-of ‘erythema migrans’ type rash a week after attending a music festival nearby. He could not remember being bitten and described a prodromal flu-like illness. I was faced with a few options – if this was cellulitis then I should treat with flucloxacillin and penicillin; if it was lyme disease should I request serology to confirm and then treat with doxycycline? Or should I prescribe doxycycline 100mg BD for 14 days immediately (the correct option!)?

It occurred to me that GPs may falsely conclude that a negative Borrelia serology excludes a diagnosis of Lyme disease and that Lyme disease in the UK is significantly under-diagnosed. Lyme Disease Action and the RCGP have collaborated to raise the awareness of this tick-transmitted condition in efforts to improve primary care detection and early management which confers a better prognosis.

Here are some key points about Lyme disease in the UK:

  • Lyme borreliosis occurs throughout UK, not just woodland areas.
  • There is no test of disease activity and no test of cure so diagnosis should be clinical
  • The main season for the disease is from March to October, though disseminated disease may present throughout the year
  • 1 in 3 people do not recall a tick bite
  • If you are unsure whether there is erythema migrans or cellulitis treat with doxycycline
  • If there is a tick bite and typical early symptoms, treat without waiting for serology results
  • Serology within six weeks of infection has a high chance of being negative
  • Early antibiotics may abrogate the immune response and lead to negative serology
  • If disseminated disease occurs it may lead to cardiac, ophthalmological, rheumatological and neurological complications

To learn more about Lyme disease and how to diagnose it in primary care visit the RCGP’s online learning environment.

Dr. Ishani Patel

MBBS BSc MRCGP DCH DRCOG

General Practitioner

E-learning CPD Fellow, RCGP

Associate GP, Transforming Cancer Services Team, London

Advisory Committee on Cervical Screening (ACCS), Public Health England

 

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May

Thank you for this blog post. I definitely think Lyme disease and other tick borne infections are under- diagnosed in the UK. I got Lyme disease when I was 23 and I’ve now been very ill for six years. Misdiagnosed by NHS as having chronic fatigue syndrome. CFS, ME and fibromyalgia are very common misdiagnoses of Lyme disease. I went private this year and finally got correct diagnosis. I’m getting better on treatment but I am now a complex late stage case and difficult to treat. GPs need to be recognising Lyme and treating early.

October 17, 2014 at 1:34 am Reply

    morena1979

    Hi May, please could you inform me as to how you were privately diagnosed? I am currently looking into it as my doctor will not acknowledge the idea of Lyme disease, which I believe I have had for 25 years.

    February 3, 2015 at 4:12 pm

    Emma

    Wow!! ^^ May – it sounds like you’ve just described ME!!!! That was the same as me (except it was almost 7 years for me). I’m too having privet testament. Fingers crossed you’re on the road to recovery – good luck xx

    March 10, 2016 at 10:58 am

Brian White

Thank you Dr Patel, great advice! I have met several people here in western Canada who were treated too late and they are now in a living hell. Uncontrollable facial tics, light sensitivity, brain fog and dazed incoherence. I was horrified. One lady told me “it would be a blessing if the Lord released me from this pain”. Don’t take chances. Research has shown that if people get antibiotics right away, they have a great chance of full recovery.

October 17, 2014 at 7:05 am Reply

Elizabeth Alban

Very good to hear a GP who is aware of this. Perhaps you could also post information for colleagues on how to spot disseminated late disease. My daughter is in this position, with a bite 4 years ago, and has had to go abroad for treatment. The NHS doctors are still trying to diagnose her with CFS. Negative UK serology, but bite, rash, primary illness, late symptoms progressing to severe, herx response to anti-microbials, bacteria seen under dark field microscopy and positive LTT test, latter two in Germany. All costs being borne by us, no help from NHS.

October 17, 2014 at 8:04 am Reply

    Mike

    You are not alone Elizabeth:

    Our daughter has also been suffering from what the NHS decided to call Early Onset Fibromyalgia and the only help was Pain Control Classes. Fortunately she was invited to join a study by Dr. Alan MacDonald in the USA and the blood smears we sent to him revealed Borrelia by a molecular beacon technique he is developing. We then contacted Armin Labs in Germany who reccomended Dr Harald Bennefeld at Vital Kliniken in Bad Driburg, Germany. He spent three hours (not three minutes) with us throughly investigating the symptoms and conducting an examination which led to a blood test, dictated by what the doctor heard from us and observed for himself. We already knew there was Borrelia, but the Blood Test revealed about 8 viral co-infections 2 of which were right off the scale…

    There really is no NHS support – they are too busy assuring themselves of their denial

    I hope you see light at the end of the tunnel, we think we see the occasional glimpse, but it looks like being a long road back and our daughter has already missed the last year of 6th Form…

    February 10, 2016 at 8:41 pm

    Elizabeth Alban

    Do look up http://www.lymediseaseuk.com, Mike, and join our online community. Over 3.5K in the same boat and many of us with young adult daughters. I hope your daughter continues to make progress.

    March 10, 2016 at 10:13 am

livingbasshead

It’s very refreshing to read this from a GP. I’m lucky in that my GP is very supportive of my private diagnosis but I went years undiagnosed leaving me with late disseminated disease from which I still suffer, even after antibiotic treatment.

October 17, 2014 at 8:45 am Reply

Lorna Bramley

My heartfelt thanks to you Dr Patel for posting your knowledge and advice.
As a Late stage Lyme Disease sufferer, of now 18 yrs, I am so happy to see some correct information from the Medical profession, at last. As a patient who was diagnosed too late, and given too little Doxycycline at the time, I know what it is to suffer badly, with no further help from GPs. I have had to pay £Ks to get treatment Privately.
May I respectfully ask that you give your patents 200mg / 2x pd for at least 4 wks, preferably 8 wks? research strongly shows that 100mg is bacteriostatic and will leave the patient still with the bacteria. The consequences are dire for the patient.
I know the guidelines say otherwise, but I believe them to be just ” guidelines”. GPs should have the freedom to make a clinical diagnose. If the patient presented with Syphilis there would be no hesitation in giving a higher dose and for longer.
Many thanks for what you have posted, it gives me hope.
Sincerely,
L Bramley Mrs.

October 23, 2014 at 1:21 pm Reply

Melissa Smith

Thank you for this article Dr Patel. I have Lyme disease but was not diagnosed by my NHS Doctors, despite known history of a tic bite, symptoms including blurred vision, arthritic pains, a disseminated lymes rash, and eventually branch block of my heart. Despite calling NHS Direct after I was bitten they told me not to bother going to my GP unless I developed an EM rash, which I didn’t. Despite being admitted to hospital with heart problems (I’m 35) no-one recognised Lyme, until my cardiologist recognised the symptoms and I was tested, but the test was negative (I had taken a course of antibiotics previously for the rash which could have affected the test result), so I was told I didn’t have it. In desperation because I was so ill I went to a private Doctor who made a clinical diagnosis of Lyme based on the tic bite and my symptoms, and sent blood tests to America and Germany which came back positive. I have been on antibiotics for nearly a year now and have made huge improvements recently including the branch block being reversed after nearly 9 months. Huge steps need to be taken within the NHS to make awareness, testing, diagnosis and treatment of Lyme better. It has ruined my life and cost me a fortune to treat a disease that had it been recognised earlier could have been treated with a few weeks of doxycycline.

October 23, 2014 at 4:57 pm Reply

Tini

Mike
Could you please tell hiw your daughters inital treatment went with Dr Bennefeld and the type of follow up home treatment?
Many thanks in advance

March 10, 2016 at 2:33 pm Reply

Richard Brooke-Powell

Dr. Patel, thank you for this, the NHS is not informing its GPs and infectious disease depts and it’s mental health depts…that this is a clinical diagnoses disease .
The guidelines that they are following, from the IDSA , have been withdrawn by the CDC.
I was bitten thirty two years ago in Vermont USA in the heart of the area
Lyme was discovered.
All my tests for borrelia bss in the UK are negative…because the test used is next to useless. But my German tests are positive.
The NHS denies that these are of value ..denying me and many others treatment.
Lyme disease does not conform to the ‘normal’ behaviour of bacterial infections.
Lyme seldom goes alone, it is accompanied by other bacteria and viruses .
These produce multi system breakdown in our health.
Time to re educate the NHS with the truth and science.

March 10, 2016 at 11:52 pm Reply

    Malcolm

    Refreshing to hear you say this, Dr Patel.

    And if anyone is interested, monolaurin is a great treatment for Lyme. It’s as effective as antibiotics and much safer. Naturally derived from coconuts, it’s safe to take long term and very effective. But you have to take LOTS – build up to 30g per day (30,000mg), and take it for several months. You will soon notice it working, but it can’t give you a permanent cure if you have long-term Lyme because of bio-films – you will need to take bio-film-busters after a few months to help with that. Easily bought online, but prices vary enormously.

    March 11, 2016 at 11:32 pm

Paul Gill

I was bitten by a tick, I removed it from my thigh, I had an EM rash at the bite point, I live in a Lyme endemic area of Scotland, and yet my ELISA test for Lyme came back negative so my Doctor insisted that there was no way I could have the disease. Now over 3 years on I am still ill, and he still insists the the EM rash does not confirm Lyme Disease, it only indicates a possibility of Lyme Disease. The lack of knowledge is truly appalling. I now have an illness that I will have for life due to poor clinical diagnosis and down to biofilms throughout my body, and nobody knows how to eradicate biofilms.

March 11, 2016 at 10:21 am Reply

    She

    My husband has suffered for 12 year with numerous symptons , joint pains , heart problems , sharp shouting pains throughout body , severe neck and head pain , stomach and kidney problems , has always been mis diagnosed , he was bitten in his belly button by what he thought was a horsefly , but it must have been carrying a tick , because he finished up with the circular tick target rash, this was originally treated with an antibiotic cream, then dismissed , but didn’t heal for months . 8 month ago in despair , with went to doctor with a four page written document of medical historyand insisted to be put on doxycycline , 5 months course was given,whilst waiting to see a tropical disease doctor , the doxycycline has eradicated 90 percent of symptons bar chronic head pain, an mri has showed cognitive inpairment and white matter , which once again is a sympton of chronic lymes disease, and once again is treatable with an antibiotic called ,cefuroxime, we are hoping our doctor will prescribe this at an appointment tomorrow, fingers crossed, by the way a lymes test did come back negitive but after the doxycycline , apparentley 52% come back negitive, not a reliable test. Hope this maybe of some use.

    October 3, 2016 at 5:13 pm

Sharon

Mike I note you mentioned Dr Bennefeld, can I ask your opinion on him and the clinic.
I have a + Armin result and am looking to go to his clinic. Just wondering if you would mind sharing your opinion

July 3, 2016 at 2:23 pm Reply

    emma

    Hi
    Did you get any feedback on Dr Bennefelds clinic
    Best wishes
    Emma

    October 6, 2016 at 12:38 pm

Bolek

IT IS
My case
I came to Bolton Hospital with a book example of erythema migrans and having had a bite couple of days earlier to my surprise consultant diagnose cellulitis (sic) I have not believed what I heard. Anyway got angry and went straight away same day to Salford Hospital. Result was woman consultant made me scared what she said was ITS NOT A LYME DISEASE as its to do with hot countries with lime trees . THATS WHAT SHE SAID !!!!!! I could not believe it I have wasted 4 hours of precious time to hear BF from so called proffesionals !! I should have called her idiot but did not want trouble. So I am sitting now having first dose of amoxicillin from private online practice abroad. To all just skip NHS it should be called N Bs S . Just makes me wonder why on earth I have been paying all that taxes and contributions I will change this as it is something I can do to better myself.
Thank You

April 13, 2017 at 11:31 pm Reply