British Lyme Disease Foundation

Presenting details on Lyme Disease & other Tick-borne Diseases for the UK


could be a result of tick photography

Deer (under the tree!) in East Sussex, England.


The BLDF passes all donations to the registered UK charity Lyme Disease Action

(Click the link above for details of the next annual CPD approved Tick-borne Disease Conference)

If you need urgent details on tick removal please click the following link and scroll to 'What if I am Bitten?'

(click here for information on tick removal)


Trawling the Web

Having found I was suffering from Lyme disease in 1997 I spent several hours trawling the web for as much information as I could find on the disease. At the time there was little UK specific data. I thought it might be useful to put a site together that linked all the most useful information that I had found. I also provided a pack of information to help give a more detailed view for the medical profession and anyone interested. This has now been superceded, as thankfully, there is now lots of information freely available on the net. The best starting place is to join the Eurolyme Web Group which is packed with patients (and the odd doctor or two) to give you advice and details of their personal experiences, which will be invaluable if you are new to this complex disease. If you are approaching Lyme Disease as a practitioner then you should print and digest the Dr Burrascano guidelines which may be the only document you need. He has treated thousands of Lyme patients in the US (and advised doctors and patients around the world) and can be relied upon to give very thorough advice for the medical practitioner.

I was lucky enough to find some excellent information on tick bite prevention specifically aimed at the UK, kindly provided by Arun District Council and Dr.David Hagen who is a consultant in public health for the area. Hard copies can be requested from Colin Combes (phone: 01903 737683) and at colin.combes@arun.gov.uk 

I have left some of the links below to the more useful papers and sites available. But the most up to date information will be found on Eurolyme, as the momentum has really started to move towards proper diagnosis and treatment for this disease caused by, what has now come to be recognized as, a super-microbe. This pleomorphic (basically it changes form) microbe can exist in at least three different morphologic forms: spirochaetal, spherolplast (or l-form), and the recently discovered cystic form. L-forms and cystic forms do not contain cell walls, and thus beta lactam antibiotics will not affect them. Borrelia is clever enough to hide in the hosts own blood cells and body tissue to evade the immune system, it also has severe immunosuppresive capabilities and is capable of survival in deep cold storage and the most extremely hostile environments. After initial infection borrelia can produce little or no antibody response within the host, since the cell wall is lacking in some forms the immune system is unable to acknowledge the infection. The days of a long standing borrelial infection being classed as easily treatable with a few weeks of oral antibiotics are most certainly gone. It is all to do with bacterial load, number of times bitten can affect this substantially and increase the chance of co-infections such as Babesia and Ehrlichia. 

 

Summary of Important Details 

Tick-borne infections in the UK are not limited to 'hot-spots' like the New Forest and are countrywide

Lyme Disease is not new to the UK, it has been here since at least the 19th century, but incidence has certainly increased due to a growth in tick numbers 

Lyme Disease cannot be ruled out by a negative ELISA or Western Blot blood test, see below

You do not have to have been bitten by a tick attached for 24 hours to contract the disease, Borrelia is present in infected tick saliva and not just the gut contents, poor removal can cause regurgitation of stomach contents of the tick into the unfortunate host

Not all ticks carry Borrelia, you can be bitten by a (relatively) healthy tick (major studies in US only so far)

Early diagnosis from a bite and adequate treatment should lead to a good recovery, again we are still defining 'adequate'

Up to 50% of people diagnosed do not remember being bitten by a tick or any special bite mark

A long standing infection cannot be 'cured' with a few weeks (or even months) of oral antibiotics, we are dealing with a 'stealth microbe' that may need many months of treatment just to allow the patient a better quality of life, reducing bacterial load should be the initial aim of any treatment and you will certainly need a course of IV treatment if you have associated neurological or joint problems

Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result

Lyme Disease is multi-systemic and cannot be ruled out before a diagnosis of ME/CFS or any fatigue syndrome is reached

After a tick bite, Bb undergoes rapid hematogenous dissemination, and, for example, can be found within the central nervous system as soon as twelve hours after entering the bloodstream. This is why even early infections require full dose antibiotic therapy with an agent able to penetrate all tissues in concentrations known to be bactericidal to the organism.


There is also a worldwide newsgroup for Lyme patients (and anyone interested in the subject) you will need to subscribe to:

sci.med.diseases.lyme

Find your feet here before you start posting too much personal information on this newsgroup. The Eurolyme link below is a much better place to start and is full of people willing to help with more UK specific information.


If you take one piece of information away from this site it should be:   

Lyme Disease MUST be diagnosed with the aid of clinical symptoms (up to 50% of sufferers do not remember the tick bite or any specific bulls-eye rash) current ELISA and 'Western Blot' blood tests are simply not reliable enough for a definitive diagnosis. If you have a negative blood test for Lyme this categorically does not rule out an active borrelial infection. See the Burrascano article below for a detailed explanation. 

Any practitioner, including your local hospital microbiologist, who rules out lyme disease purely on a negative blood test is not up to date. The annual CPD approved Tick-borne Disease Conference is held each June and would be a great way for any proactive practitioner to update their knowledge, see the Lyme Action site below for booking details. Copies of the last conference transcript are also available here.


Links to useful information

Ticks & Lyme Disease, UK Specific Lyme Disease Information (click here for tick removal)

Dr J Burrascano MD, Diagnostic Hints & Treatment Guidelines for Lyme Disease & Tick Borne Illnesses. (Definitive treatment guidelines)

Lyme Disease Action UK Registered Charity with Annual Conference Details

Eurolyme Web Group (register here if you're new to Lyme Disease)

Video Microscopy of spirochaetal structures (broadband connection recommended)

International Lyme & Associated Diseases Society (A Professional Medical & Research Organization)

Lymenet Homepage

US Lyme Disease Foundation

Lots of Lyme Links

United States "Centre for Disease Control" Brochure

Some useful colour pictures of the EM Rash

 


If you have any questions please feel free to e-mail me, replies may take a few days at times, so please join Eurolyme first.

Mark Greenfield
spud@wadhurst.demon.co.uk

Copyright © 2009 Mark Greenfield