Lord Tony Greaves writes…Raising awareness of Lyme Disease. Do you know how to deal with tick bites?

Ticks courtesy of Lyme Disease Action 1Lyme disease is something rather nasty that you can get from being bittenby a tick. Both Lyme and ticks have had quite a good press of late (or perhaps a bad one) due to a number of “celebrities” getting infected –people such as John Caudwell (founder of Phones 4U) and Bella Hadid, daughter of Yolanda Foster – with long articles in the Mail, Evening Standard and on the BBC website.

Not so well promoted, but I hope important, was a short debate I secured and led on Lyme Disease and other tick-related infections in the House ofLords last week. This was, it seems, the first ever debate in Parliament onthis matter. This is perhaps not surprising since Lyme Disease was onlynamed in 1975 (after a small town in Connecticut where it was first studied). So what is this all about and should we all worry about it?

Lyme disease, or Lyme borreliosis, is an infectious disease transmitted tohumans and other animals by bites from ticks, which are small arthropodsrelated to spiders, and I can tell you from a close encounter with quite a big one last June that they are pretty nasty things. Infected ticks transmit the Borreliosis bacterium when they suck your blood, and they are found throughout the UK. They live on vegetation, particularly damp areas of vegetation such as bracken and in woodland. They are found throughout the countryside but they also appear more and more in towns – in parks and in suburban gardens for instance – and they are increasing in number.

Lyme disease can cause debilitating conditions, both acute and chronic. It can knock people out, producing symptoms similar to ME (for which it maybe misdiagnosed), migraines, neurological symptoms and persistent flu-likesymptoms – symptoms both physical and mental – so it is pretty serious stuff. At the moment, the only test for Lyme disease is a blood test, which is not wholly reliable since it produces many false negatives. The levels of knowledge about this disease within the NHS are inadequate and estimates of 3000 cases a year in the UK may be well on the low side.

Too little is known about this somewhat mysterious illness and there is controversy over its incidence, its diagnosis, its treatment and the relative success of different treatments. There is also confusion because there are other tick-related diseases which we appear to know even less about than Lyme disease, and which we might well be talking about in this way in a few years’ time.

The understanding and importance that the NHS gives to Lyme disease has improved in the past year or two, but information to professionals and public education are not as good as they ought to be. The Lyme DiseaseAssociation (LDA) is a small charity which provides advice and help for people with Lyme symptoms, and have put a lot of really good information in the public domain. They also campaign for better recognition of the problem within the NHS and among the general public. Its view is that “the current
level of knowledge is appalling. Doctors do not understand the tests, the epidemiology or the disease itself”.

We had a really good debate with contributions from both people with experience of the disease in their families and professionals. Liberal Democrat peer Kate Parminter spoke of the real need for a lot more information on what to do if you have a tick bite quoting her daughter who is doing the Duke of Edinburgh’s Award. We got a serious reply from the health minister (Lord Prior of Brampton) and I hope we helped, in a “House of Lords” kind of way, to bring attention to what is a growing problem and put a bit of pressure on for more action from the authorities.

Tick courtesy of Lyme Disease Action 2If you are walking in the countryside, or going out into a park in town or country, playing field sports, or just gardening – you need to know what ticks look like, what to do to check if you’ve been bitten, what to do if you find them on you or your kids, what to do if you are bitten. And you might catch one off your dog if you are not careful in how you remove them.

There’s lots of good information out there – you can’t start better than with the Lyme Disease Action website (and thanks to LDA for the pics of the horrid things!)

* Tony Greaves is a backbench Liberal Democrat member of the House of Lords.

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5 Comments

  • I lived for 15 years in the French Massif Central and I often removed ticks from various parts of my body.. They can, and do, find ‘awkward’ places….
    I never developed the ‘ring-a-roses’ marking but, over the years, my GP sent me, on three occasions, for blood tests as the marking is not always present…..I’d back Tony Greaves in urging anyone who finds ticks to be aware of the symptoms and long term affects and seek medical advice if concerned…

  • mark zeichen 29th Oct '15 - 6:23pm

    … thank you …

    mark

  • Rachel Alban 30th Oct '15 - 1:21pm

    I absolutely applaud the Lib Dems and Lord Greeves in particular for being the first political party to recognise this scandal of neglect in the UK health system. I hope the other parties will follow the Lib Dem example of representing the vulnerable and marginalised, as Lyme Disease sufferers in the UK undoubtedly are. However, I would recommend anyone who wants the most accurate and authoritative information on this disease to consult http://www.ilads.org, which is the International Lyme and Associated Diseases Society. For an extremely small charity the LDA has no doubt made a contribution to awareness in the UK, but the UK now needs greater expertise from across the world to stop this preventable disease becoming a debilitating epidemic.

  • Anna Sullivan 30th Oct '15 - 6:56pm

    Thank you so very much for not only raising awareness of tick borne disease but doing so with such accuracy. Many in positions of responsibility misrepresent Lyme Disease and other tick borne illnesses, claiming they are easy to diagnose and easy to treat when the truth on both counts couldn’t be further away. I am a British citizen currently living in New York’s Hudson Valley, which is the global epicentre for tick borne infections in humans. I was misdiagnosed for five years due to inadequate testing and a GP who believed that a so-called negative test result meant I didn’t have Lyme. I got bounced around from heart specialists to arthritis specialists, and no one could help me. Finally, after I learned more myself, I asked my doctor to order a newer test called the C6 ELISA, and sure enough, there was a blaring positive result. The spirochetal load in one’s body after five years of untreated infection is tremendously hard to treat. The bacteria are in every joint and organ of my body and I am on extended heavy antibiotics to get better. Our family has suffered terribly during this illness, including my young child, who has only known his mother very ill. Please continue to advocate for funding to better diagnose, treat, and prevent tick borne infections in the UK. When the testing improves, it will become evident just how many people are ill and need adequate treatment. As a local doctor has said here in New York: “In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.” – Dr. Kenneth Liegner

  • I can only add my applause for raising awareness of this.

    I know somebody who died from complications caused by Lyme disease (years ago, when GPs weren’t aware enough) and I caught it twice myself, first back in the early 90s when it was not widely known. Luckily my mother had read about it and suggested that I see my GP when the typical signs developed. I had not heard about it at the time, and I was very lucky indeed to get it treated in time.

    You need general awareness to get people to take it seriously: the symptoms don’t really seem all that threatening until it is too late.

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