CONCERN OVER INCREASING LYME DISEASE IN UK

Annual Report of the Chief Medical Officer for Scotland 2010

Zoonoses
One concerning trend in zoonoses, i.e.
diseases that can be transmitted from
animals to humans, is that shown by the
increase in lyme disease, a tickborne
disorder. The rise cannot be accounted for
purely by changes in laboratory protocols
or in the number or demographics of
patients tested. Variations in climatic
conditions and alterations in clinical
presentations may have contributed to
this continuing rise year on year. This is
also likely to be impacted by improved
recognition and clinical suspicion.

http://www.scotland.gov.uk/Publications/2011/12/13153419/0

In England and Wales, the provisional figures for the first 3 quarters of 2011 have just been released. The laboratory confirmed cases for weeks 1-39 (approx. Jan – Sept) rose from 768 in 2010 to 968 this year – an increase of 26%.

http://www.lymediseaseaction.org.uk/latest-news/concern-about-rise-in-lyme-disease-cases/

THERE WAS NO MORE INFLAMMATORY DISEASE WHEN THE BACTERIA WERE ELIMINATED

In some genetic backgrounds of mice, acute inflammation is sufficient to fight off infection and resolve disease. In other mouse strains, the pathogens, or in this case the bacteria, get past TLR-induced inflammation and remain symptomatically undetectable in cells and tissues (Barthold, etc); Barthold et al. have found that no matter how severe or mild the disease in any of the genetically inbred strains of mice, there was no more inflammatory disease when the bacteria were eliminated. If bacteria find a new disguise, and then come out of hiding, does the process start over again, resulting in chronic, or relapsing remitting, symptoms of inflammation, until the pathogen finds a new disguise or a new hiding place? Or, even if the Borrelia remain dormant, does exposure to a different pathogen that also produces TLR agonists re-trigger the expansion of latent pro-inflammatory cells that were initially stimulated by Borrelia TLR binding proteins?

From Dr Karen Newell Rogers presentation at 2011 Lyme and Tick borne Diseases National Conference details here

SYMPTOM GRAPHER

With Chronic Illnesses it is difficult to present our symptoms to our Doctors in the short time allotted. It is also difficult to keep a diary of patterns and trends, I know I kept a daily diary for about 5 years.

I had seen one or two charts available at a cost on the Internet but this free access one is definitely the best I have seen so far.

Although designed by a Lyme Disease sufferer I can recognise the value of it for many other Chronically ill patients and in particular those with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome ME/CFS.

I am assured that there will be no data stored other than the e mail addresses for the log in and that can be as fictitious as you choose.

One tip - if after many months a four weekly pattern emerges, that is typical of Lyme Disease so if you haven't considered Lyme as a differential diagnosis then seek a good Lyme Literate Medical Doctor's opinion. Lyme symptoms cycle about four weekly on treatment but also when not on treatment although not everyone is aware of these cycles and when we are at our sickest it is particularly difficult to see a pattern.

Here is the link to the Symptom Grapher here

FOUR UK DOCTORS FAILED TO DIAGNOSE SAM STOSUR WITH LYME DISEASE

Four Doctors in Wimbledon Failed to diagnose Sam Stosur ( tennis champion) with Lyme Disease.

Neighboring Richmond and other London Parks have been known endemic areas for Lyme Disease for many years according to HPA, what hope us mere mortals of getting timely diagnosis and treatment if such athletes as Stosur and Mel Clarke ( para Olympic champion archer) struggle for diagnosis and proper treatment in endemic areas.

Stosur was fortunate to finally be diagnosed from ID consultant in Florida which led to a couple of months intensive antibiotic treatment including IV, something which is also denied patients in the UK following current restrictive UK guidelines even if patients are fortunate enough to get a diagnosis.

click here

Mel Clarke talks about her difficulties getting treatment in the UK at the House of Commons meeting on Lyme Disease PDF available of the meeting if required.

My latest letter from Department of Health via my MP Anne Milton says 'A diagnosis of Lyme Disease can be made by a clinician on the basis of typical symptoms and known exposure to a tick bite ---' Interestingly our GMC seems to have confirmed this despite our 'expert' at HPA reporting doctors to GMC for not following HPA restrictive Guidelines.

'The controversy over Lyme Disease is the biggest medical disgrace ever' quote from a UK consultant.

Thankfully the Department of Health initiated 'The Information Standards Scheme' has now accredited the Lyme disease Action charity.

'Lyme Disease Action has been certified as a provider of high quality health information by The Information Standard scheme. This scheme was developed by the Department of Health to help the public identify trustworthy health and social care information easily. At the heart of the scheme is the standard itself – a set of criteria that defines good quality health or social care information and the methods needed to produce it.

To achieve the standard, organisations have to show that their processes and systems produce information that is

• accurate
• impartial
• balanced
• evidence-based
• accessible
• well-written

Accredited organisations have to show that where there are alternative views these are considered and presented; that information is truly evidence based and thoroughly researched from reputable sources.

Balanced, reliable information on Lyme disease is hard to come by, but LDA has achieved it. Doctors and patients can now use the information on this website secure in that knowledge. If someone quotes other sources of information be sure to ask whether those sources are also fully accredited.'

click here for link