HAS THE HEALTH PROTECTION AGENCY ONCE AGAIN FAILED US?

Wednesday 26 September 2012

HAS THE HEALTH PROTECTION AGENCY ONCE AGAIN FAILED US?

The Health Protection Agency publishes the figures for Lyme Borreliosis in England and Wales in 2011.here

In 2011, 959 cases of laboratory-confirmed Lyme borreliosis (LB) were identified in residents of England and Wales, an incidence rate of 1.73/100,000 total population. This compares with 905 cases and an incidence rate of 1.64/100,000 in 2010. Excluding the 197 (21%) people known to have acquired their infection abroad during 2011, 762 are believed to have acquired their infection in the UK an incidence rate of 1.38/100,000 total population.

(To those not familiar with Lyme Disease certain sources believe the true figures of cases are likely to be about 10x the number of serological cases year on year.)

One point that interested me was this 'Almost half (n=463) reported presentations compatible with recent infection,' therefore the other half must be cases found beyond the early stages of disease- perhaps disseminated Chronic Lyme Disease!

Did the HPA recommended treatment of a couple of weeks antibiotics cure all, actually do that? or maybe that is the reason so many patients are joining Eurolyme looking for answers to why their NHS short treatment didn't work.

This NHS doctor has something to say about her initial failed treatment but recovery on longer treatment here

This BBC interview In 2007 with researcher Dr Klaus Kurtenbach ( sadly now deceased) has some very interesting points here

"In France they have diagnosed 10 times as many cases as here", says Dr Klaus Kurtenbach, one of the scientists at Bath University.

"Yet we've found the same number of ticks here carrying the disease."

Scientists studying ticks in the West Country's open spaces

Dr Kurtenbach and his colleagues believe British doctors are failing to spot the symptoms of the disease.

They say hundreds of people are suffering with headaches and even mild paralysis, who could be treated.

For Inside Out West, Dr Kurtenbach went out to woods near Bath to gather ticks.

Even in February, he found a large number of the bugs.

"Many people think it's only a problem in summer, and only in major forests", he says.

"But we are finding them now, and in greater numbers than ever."

It's clear that the public needs to be more aware of the growing health risk.

France (over 10 times the incidence as the UK's)
"In France, the incidence has varied considerably from one region to another
and it is estimated between12,000 and about 15,000 the number of new cases per
year. "
(Compare this with about 2,500 per year over the whole of the UK including
Scotland)

"The eastern and central regions are most affected, with an incidence of up to
more than 200 cases/100,000 population in Alsace." link here

Germany (148 times the UK rate)
"An incident diagnosis of LB was coded in 14,799 and 16,684 individuals for the
years 2007 and 2008, respectively, resulting in an incidence of 261/100,000
cases annually in the DAK cohort. Although the extrapolation of these numbers
may lead to an overestimation due to clinical misdiagnosis and/or miscoding, our
findings translate into 213,912 annual incident cases on a population-wide
scale, which suggests more LB cases in Germany than projected previously in the
available literature dealing with this topic."
Taken from
Clinical and Developmental Immunology
Volume 2012 (2012), Article ID 595427, 13 pages
doi:10.1155/2012/595427
Research Article: Evaluating Frequency, Diagnostic Quality, and Cost of Lyme
Borreliosis Testing in Germany: A Retrospective Model AnalysisLink here

Netherlands (20 times as many cases reported compared with England and Wales)
Our nearest neighbour, the Netherlands, has 43 per 110,000 (slightly different
use of 110,000 instead of 100,000 there but I don't know why, that's at
least 20 times the rate supposedly in England and Wales.) Link here

Belgium (45 times the rate reported in England and Wales)
Europe Journal of Clinical Microbiology and Infectious Diseases
2012, DOI: 10.1007/s10096-012-1580-3
"The overall Belgian incidence rates in the SGP practice in 2008–2009 were 18.65
(95% CI 17.29–20.08) per 10,000 persons for tick bites and 9.02 (95% CI
8.08–10.03) for erythema migrans."

This means 90.2 actual infections per 100,000. Link here

Norway (about 40 times the UK incidence)
Depending on the region, up to 84 per 100,000. They have really detailed maps of
the worst areas on the west coast, and south coast, which is where everyone
lives) Link here

Thanks to Denise Longman for sharing her research into these figures from our neighbouring countries.

3 comments:

Dr. John Petraglia28 September 2012 at 20:32
This is exactly why it's so important that doctors and their patients work together- I wrote my book specifically to help avoid misdiagnosis and stop the pain as soon as possible.
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Joanne1 October 2012 at 09:22
From Lymenet Europe
The political situation in the UK is far more extreme,
with the HPA (Health Protective Agency) actually FORBIDDING
UK physicians from attending International symposia on Lyme borreliosis
in Year 2011.

For many years ( until retirement in year 2011) Dr Susan OConnell MD was in
the position of complete control of all lyme Borreliosis testing, which under her
custodianship, was coincidentally centralized at her personal hospital--
Southampton Hospital. Following her retirement, the HPA (central UK Health authority)
elected to relocate the centralization of UK national Lyme disease testing to
the Porton Down facility ( which is mandated by Parliament to oversee
Biodefense and Biowarfare Activities fo the UK).
Under the custodianship of Susan OConnell MD, the United Kingdom has the lowest
number of annual new Lyme borreliosis cases in the entire European Community.

Physicians who are general practitioners in the British NHS have signs posted in their
waiting rooms which direct patients who believe that they might have signs and symptoms of Lyme borreliosis to "go elsewhere".

It is simple to understand why the UK has the lowest annual number of new Lyme Borreliosis cases of any country in Europe.

By way of contrast, Germany (including both East and West Germany) reported about 250,000 new cases of Lyme borreliosis for calendar year 2011. Estimates of the actual (unreported cases) number of LB annual cases for years 2011 to 2012 are projected by to be 750,000 new cases per annum. Some German physician observers feel that 750,000 cases estimate is in fact only 50% of the actual Lyme Borreliosis new case load per annum.

These statistics are received from physicians who practice Infectious Disease Medicine
in Germany.
http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=4204&sid=557e7848b2acc0ab7f79d5411c6a7618&start=70
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Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012