Wednesday 20 April 2011

HAS THE IOM REPORT FINALLY TIPPED IN OUR FAVOUR

People live in a World of growing interdependency and complexity. The old English word connexity is an appropriate description that helps to define the combination of connectivity and complexity that is our reality.

Tick-borne diseases (TBDs) including Lyme disease are certainly embedded in our world of “connexity.”

This group of diseases defies simple cause and effect explanations and, while science has enabled us to uncover critical information on TBDs, we also realize that much more remains hidden.


The above extract from the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes - Workshop Report see here

With the recent information finding that some patients with ME/CFS are being found to have XMRV and Lyme Disease this is not only of significance to just patients with Lyme Disease.

Thursday 14 April 2011

LYME DISEASE FIGURES UP IN ENGLAND AND WALES

The Health Protection Agency is advising people to take care when visiting areas where ticks are present, to prevent tick bites and reduce the risk of catching Lyme disease.

Latest provisional figures from the Health Protection Agency (HPA) show there were 953 laboratory-confirmed cases of Lyme disease reported in England and Wales in 2010. The majority of these cases were acquired in the UK rather than overseas, with two-thirds of cases identified among residents in the South of England.

According to Centres for Disease Control in USA and Dr Ho Yen from HPA in Scotland the actual figure of people infected by Lyme Disease is more likely to be in the region of 10x that of serological positive tested cases so nearly 10000 cases in England and Wales last year. I don't have the figures for Scotland yet.


Advising people on the HPA website to take care of being bitten by a tick is just not good enough more publicity needs to be done by our Health Authorities.


Currently it is the patients and the UK charities that are raising awareness of this debilitating and often painfull disease.
Thank you to BADA UK for the latest drive for Tick Bite Prevention Week and for getting information into various newspapers recently including

The Independent 'Lyme disease nearly made me come indoors,' says Ray Mears
and

The Daily Mail Survival expert Ray Mears reveals how simple tick bite nearly ended his career


Shame on our Health Protection Agency for their failure to raise public awareness.


Saturday 9 April 2011

LETS WORK WITH THE LYME DOCTORS AND LETS START CALLING THIS ILLNESS ANYTHING BUT CFS



Dr Judy Mikovits at the NIH State of Knowledge Workshop in 2011 on ME/CFS. She says XMRV is allowing all the other viruses (entero, herpes etc) to keep going,

i.e it's similar to the way HIV causes AIDS, which is anything up to 25 different infections in the end.

Then she also says let's work with the Lyme doctors and lets start calling this illness anything but CFS

Tuesday 5 April 2011

SEEK AND YE SHALL FIND

RETROSPECTIVE ANALYSIS OF A COHORT OF INTERNATIONALLY CASE DEFINED CHRONIC FATIGUE SYNDROME PATIENTS IN A LYME ENDEMIC AREA

Samuel Shor1, MD, FACP Principle Investigator:1Samuel Shor, MD, FACPAssociate Clinical ProfessorGeorge Washington University Health Care SciencesInternal Medicine of Northern Virginia1860 Town Center Drive #230Reston, Virginia 20190Phone 703 709-1119 Fax 703 709-7496
samshormd@gmail.com ABSTRACT

Background Chronic fatigue syndrome is a diagnosis of exclusion for which there are no markers. Lyme disease is the most common vector borne illness in the United States for which chronic fatigue is a frequent clinical manifestation. Intervention of patients with Lyme disease with appropriately directed antimicrobials has been associated with improved outcomes.
Methods

An arbitrary date was chosen such that all patients registered in the database of the practice of the PI, which is located in the Lyme endemic area of Northern Virginia area were reviewed. The diagnosis of clinically significant fatigue > 6 months was chosen. Inclusion criteria required fulfilling the International Case Definition for CFS.
Results

Of the total 210 included in the analysis, 209 or 99% were felt to represent a high likelihood of “seronegative Lyme disease.” Initiating various antimicrobial regimen, involved at least a 50% improvement in clinical status in 130 or 62%. Although not achieving the 50% threshold according to the criteria discussed, another 55 patients subjectively identified a beneficial clinical response to antimicrobials, representing a total of 188 or 88% of the total identified as having a high potential for seronegative Lyme disease.


Conclusions


A potentially substantial proportion of patients with what would otherwise be consistent with internationally case defined CFS in a Lyme endemic environment actually have a perpetuation of their symptoms driven by a persistent infection by Borrelia burgdorferi. By treating this cohort with appropriately directed antimicrobials, we have the ability to improve outcomes.


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I have been remiss in posting recently ( busy enjoying life ) and also finding lots of interesting info on Lyme Disease and ME/CFS through Facebook but I had to post the above excellent research.


The above study concentrated on a known endemic area but here in the UK there is not so much research done on Lyme Disease areas to see where it is endemic.


My own diagnosis was part of a domino affect.


A nurse training at the Royal Surrey hospital had a patient admitted, on the ward with a tick bite and overheard talk about Lyme Disease.


Never having heard of Lyme Disease she looked it up on the Internet.


Only a fortnight later her new found knowledge proved useful when her husband had a tick attached whilst sitting in his garden. The husband attended the local surgery and Lyme Disease was dismissed as unlikely as the patient had not been infected in a known Lyme endemic area.


However a few days later the typical bulls eye rash appeared (lucky him as 40% of cases often don't get a rash). Still his GP and Dermatologist shook their heads and dismissed Lyme Disease, however the wife had by then pursuaded the GP to prescribe antibiotics and just as well as the NHS blood tests came back positive for Lyme.


That was the first known case at my surgery, later other cases presented in the early stages of tick bite and bulls eye rashes and eventually led to my GP suspecting I had Lyme when a chance course of antibiotics significantly improved my chronic arthritis and muscle weakness (My story is in the right hand column).


Since, there have been several patients present at my surgery and several other surgeries in the Guildford locality- seems once doctors start to look they find.


An area is only endemic when sufficient research has been done to establish that it is endemic - if the research is not done that does not mean there is no Lyme Disease in the area.