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.

RAPID TRANSMISSION OF INFECTIONS FROM A TICK BITE

Regurgitation Transmission of Borrelia burgdorferi to humans ; The Rapid pathway
as contrasted with Salivary gland transmision ( the Slow pathway)

Ticks and Tickborne Bacterial Diseases in Humans: An Emerging Infectious Threat

Ticks are currently considered to be second only to mosquitoes as vectors of human infectious diseases in the world

Clinical Infectious Diseases Year 2001 vol 32: 897-928
(an Official publication of the Infectiious Disease Society of America) link here 

An ongoing debate in the Lyme community is over how long it can take to be infected by a tick. I read an interesting post by Dr Alan MacDonald on the subject on the Lymenet Europe forum  which I share.

'Salivary gland processing of Bb is an accepted pathway to transmission of infection to the mammallian host.
The Minimal Infective Dose ( Minimal Infective number) of properly conditioned Bb
from an infected tick is not known with certainty, although estimates or outright guessing of 
Minimal tick attachment time for tranmission of infection are bandied about in the literature.

Overlooked in Tick transmission of infection to mammalian hosts is Regurgitation Transmission.

Regurgitation Transmission is a reallity which is discussed in the attachment.

In essence,the Rate of delivery of borrelia from tick to mammalian host via the salivary route
is slow. In Contrast, with regurgitation transmission, the rate of delivery of borrelia to the
mammalianhost is high.. A Huge bolus of ifectomes is delivered with a single episode of tick vomitus.

Regurgitation transmission explains cases of Erythema migrans which develop rapidly,
even those cases of EMgreater than 5cm diameter noted with the tick still attached to the center of the EM lesion.

Walter Reed's collegues solved the mystery of Yellow Fever transmission in Cuba
by "sticking out his arm" and allowing the mosquitos to feed.

If there is commentator confidence that short term attachment produces no human Bb infections
then let those experts "stick out their arm" and allow the Infected Ixodid nymphs to feed .

Food for thought...stand behind your expert statements....by stickingout your arm.'

Thank you Dr MacDonald 

There is not much humor involved with reading about patients chronically ill with this disease but a mental picture of some of the most ardent deniers of Chronic Lyme Disease standing in line 'sticking out their arms' amused me today. Of course these deniers of Chronic Lyme Disease know far more than they let on about the complexity of this disease to do anything so fool hardy, as a trawl through patent applications will soon confirm. here

LYME DISEASE - MULTIPLE SCLEROSIS MISDIAGNOSIS

I have removed this video because it plays each time I enter my blog however it is worth watching and the link is here 

  Four doctors told Susan Mercurio she had MS. Kay Lyon's daughter was prescribed powerful psychiatric drugs and sent to a locked ward. Both had been misdiagnosed; they really suffered from Lyme disease, the tick borne disease that's spreading throughout New England.

Earlier posts on Multiple Sclerosis here  but also information in right hand column several lectures by Tom Grier.

RELAPSING ILLNESS

Many people with chronic illnesses suffer with relapses, remissions, flare ups - Rheumatoid Arthritis, Multiple Sclerosis, ME/CFS, to name just a few but it is also a recognised pattern in Lyme Disease. 

Ben Luft NIH researcher of many years with the Lyme disease spirochete had something to say on the subject at the Institute of Medicine Workshop on Lyme disease and other tick borne illnesses in 2010 here

But the nature of Lyme disease is it's a relapsing disease.

In 2009 I met a young lady at a Lyme Disease Conference organised by Lyme Disease Action here, she told me of the huge improvements in her health on long term antibiotics.

Recently I was sorry to hear that she had relapsed and once again was struggling to get appropriate treatment from her NHS doctors, even with her history of recovery the first time around. 

An Ecologist/Entomologist/Evolutionary biologist living in Scotland she tells her health story on her new blog here in the hope that it will help raise awareness and help other sufferers of Lyme Disease. 

Her first post is of particular interest because she shows a video of her abnormal or Myopathic gait, symptoms of neurological Lyme disease and I am sure many with Multiple Sclerosis and other Neurological illnesses will identify with this gait - the difference being that with antibiotics this abnormal gait has previously and can again become normal. Link to her first blog post here 

'Toots' as she calls herself goes on to share some Lyme Overview presentations, a good Rant about the denial of this disease and then her latest post about the Four weekly cyclical nature of Lyme disease - I wonder how many patients with Chronic illnesses have documented their symptoms and discovered they too have a four weekly cycle, which is one of the hall marks of Lyme disease.

I look forward to hearing more from Toots on her journey of recovery and wish her all the best, this disease is not for the faint hearted. Our medical authorities marginalize those with Chronic Lyme Disease, without paying due attention to all the emerging science which shows that Chronic Lyme Disease is a very different condition than an Actute case of Lyme Disease.

SUCCESSFUL TREATMENT OF MOTOR NEURONES DISEASE, ALS, LOU GEHRIG'S

Dr. David Martz -- unedited footage from Bev Feldman on Vimeo.

Dr Martz was diagnosed with Motor Neurones Disease ( Amyotrophic Lateral Sclerosis, ALS, Lou Gehrig's Disease) in 2003.

Above he talks about his journey in being tested for Lyme Disease but repeated negative serology until eventually a positive DNA test in Urine.

He was treated with aggressive IV antibiotics, he says the change was dramatic.

'Within 1 month the body pain that had required oxycodone had disappeared, the arthritis that had required Intramuscular Methatroxate had totally disappeared.

Within 1 month my energy went from half an hour to with 4 to 5 hours stamina.

By 2 months I was able to cross my legs without using my arms to assist them.

By 3 months I could get up out of a chair myself without anyone having to pull me up.

By 6 months my Neurological findings had disappeared.

I did not return to absolute complete normality but did return to about 70% of my base line self and was subsequently able to open a new practice to see if my response to antibiotics might be shared by others stricken down with the usually fatal diagnosis of ALS ( MND). 

Rocky Mountain Chronic Disease Specialists was opened in 2005 and we saw approximately 900 patients over the next 2 1/2 years.

 About 100 of them had ALS ( MND) we did identify that some patients did respond to antibiotic therapy regardless of the positivity or negativity of their Lyme Disease testing by any laboratories.

We found about 15% of people clearly got functionally better and probably 20- 30% had their disease stabilized, without progressing further.

This is unheard of and we are in the process of preparing this information for publication.'

________________________________

An earlier post on Dr Martz here

PHYSICIAN FAILURE TO DIAGNOSE IMPLICITLY TRAVELS WITH PHYSICIAN FAILURE TO TREAT LYME BORRELIOSIS.

Senator Blumenthal hosted a recent Senate Health, Education and Labor Committee field hearing on Lyme Disease. There is an opportunity to submit further testimonies Senator Blumenthal for the Record of the United States Senate.

here 

One letter to US Senate hearing from an eminent Pathologist with years of experience working in the field of Lyme Disease:-

Lyme Borreliosis is a major public health problem in the
United States, in Europe, Eurasia, and Australia. The infectious pathogens are not a single microbial agent, but
a complex of Tickborne diverse Borrelial species (currently in excess of fifty genotyes in the USA).  We test blood specimens with approved diagnostic test reagents based on One of the Fifty currently known USA borrelia burgdorferi strains. Implicit in this unitary approach to blood testing is the obvious conclusion that many Borrelia strains in the USA which do not match the CDC reference borrelia burgdorferi strain will be missed. Both easy to diagnose and very difficult to diagnose Lyme
diseases  are often accompanied by simultaneously transmitted non-spirochetal pathogens ( "co-infections"). Laboratory testing for co-infections of Lyme borreliosis are
ordered correctly in only a minority of patients, because
their personal physicians rely on one blood test, namely the test which detects patient antibodies to the B31 strain of Lyme borreliosis. Relapse of disease , according to Professor Benjamin Luft of the State University of New York at Stony Brook in expert testimony to the Institute of Medicine,in the year 2010 in Washington D.C., is  an expected  clinical pathway for many persons afflicted with this disease complex. Untreated Lyme Disease, and incompletely treated Lyme Borreliosis are accompanied by morbidities in the joints, the heart, the eyes and the peripheral and central nervous systems and in other organ systems.
Statistical compliations of the annual case numbers of Lyme Borreliosis in the USA by the Centers for Disease Control and Prevention demonstrate that the disease is spreading
from its originally described epicenter in Connecticut to annually involve 30,000 to 40,000 patients (  Year 2010-2011 conservative estimates from CDC registries)  in all states north of the Mason Dixon line extending westward to at least the State of Minnesota.
The actual Southern extent of Lyme Borreliosis is a contentious area where CDC imposed definitions of "what Counts" are at variance with clinical and laboratory diagnoses
of Lyme borreliosis in the Southern USA rendered by patient care physicians,  and supported by Serodiagnostic "two tier"  seroposiitive test results from Nationally Certified Independent Commercial Clinical Testing Laboratories. In effect the diagnosis of Lyme Borrreliosis in states South of the Mason Dixon line and west of the Mississipi River is actively
and vigorously discouraged by National  and State Health Agencies.
Physicians who practice in opposition to this regulatory  geographic Dogma are at risk for sanctions against their medical licensure. Politics and Medical science have become inextricably intertwined in the Lyme borreliosis diagnostic arena.
It is sobering to view that 216,000 cases of Lyme borreliosis were diagnosed and treated in the Federal Republc of Germany for calendar year 2009; which is a 6 fold higher Lyme disease case number than the maximal per annum "acceptable" number for USA Lyme disease cases in ANY calendar year.
Physician Failure to diagnose implicitly travels with physician failure to Treat Lyme Borreliosis.
  Even the most conservatively polarized factions agree that failure to Treat Lyme borreliosis carries the future potential morbidities in multiple organ systems  over a patient's lifetime.
Governmental interposition between the physician and the patient  in the diagnostic and treatment equation carries consequences equivalent to untreated spirochetal infection over a patient's lifetime, as demonstrated in a previously Federally mandated clinical policy for treatment in a group of Select patients with spirochetal infection in the USA in the last century.
My professional view is that untreated and undiagnosed
 spirochetal infections in the human host in these United States have unfortunate consequences.  Better awareness,
Better laboratory testing ( by Gene chip methods for example) and better leadership from the Federal Level and from State Departments of Health will offer
 better public
health outcomes for our citizens.     Respectfully submitted,
Alan B. MacDonald MD
Sayville, New York

WHAT MOST DOCTORS DON'T KNOW ABOUT LYME DISEASE

Dr Burrascano - Lyme Disease Testing and Treatment http://ilads.org

Another excellent presentation here 

An earlier presentation that helps to understand the background and the controversy over Lyme Disease here 

HOPES FOR A NEW AND ACCURATE TEST FOR LYME DISEASE

Dr Richard Bingham at the University of Huddersfield is on the trail of an accurate test that will enable quick and accurate detection of Lyme disease.

Dr Bingham is attempting to reproduce the bacterial proteins that lead to Lyme disease in an effort to produce better testing and hopefully leading to better treatment.

Details available on the University website here 

Dr Bingham presented at the 2012 Lyme Disease Action conference details of his presentation here 

Science Daily have already picked up on this important information link here  

Science Daily in the above article also mention Paralympic Archer Mel Clarke who was affected by Lyme Disease. Mel recently won a silver medal in the 2012 London Paralympics. Congratulations to Mel.

Mel attended a meeting at the House of Commons in 2008 with various MP's, incuding Anne Milton, Oliver Letwin, Hugo Swire, several doctors, representatives from Lyme Disease Action and from the Health Protection Agency - this was Mel's presentation here

Quote from Mel 'As I was in New York with Lyme disease, they knew what to look out for.  I was referred back to the UK for rehabilitation and treatment at home.  I do it all at home (now). 

I went to a top neurology consultant and he 

said “Lyme disease – what’s that?”  

I carried on with the antibiotic therapy – as an outpatient.'

The response from HPA was:-  made by Dr. Sue O’Connell:  First of all I’d like to say how sorry I am to hear Mel’s story.   I am surprised that Norwich did not know about Lyme disease.  There has been research in the area,
Thetford Forest is a Lyme research area.  This has happened over 15 years and done by a group from Charing Cross Hospital.  So it is disappointing that this has occurred and I am very sorry about that.


Roll on the day when we have accurate and sensitive testing at all stages of Lyme Disease, proteomics have been used successfully in research work (Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome here)
 but that or something similar needs to be translated into easy and inexpensive tests available for our Doctors to initiate. Only then can attention focus on treating patients adequately for their needs.
__________________________________________________________


Meanwhile the Media pussy foot around the subject of Lyme Disease, when they could do so much more to help raise awareness and help publicise the emerging science. However there has been some media interest recently thank you Daily Mail.

The Daily Mail :- 

Insect bite in the park left me in agony for SIX years here

As pretty as a picture (but a lot more deadly): Killer diseases from anthrax to the Black Death as you've never seen them before here 

Malaria, DVT, liver disease... What you don't want to bring home from your holiday here 
SYMPTOMS: A ‘bull’s-eye rash’ – a bright red patch of skin which then fades in the centre, perhaps coupled with muscle and joint pain, fever, headaches and fatigue.

IT COULD BE: Lyme disease

Soggy summer means 12 million cats and dogs could be infected by parasites  Wet summer led to abundance of pests such as ticks here 



_________________________________________________________________________________________________

Thanks to The Scotsman for the following excellent article here

Bruce Alexander: More must be done to combat Lyme disease

Quote 'A recent audit of patients at a Perthshire Medical Practice found a ratio of confirmed cases equivalent to 125 per 100,000 people. Applying this ratio across Scotland, there could be around 6,500 people contracting Lymedisease each year, the vast majority going undiagnosed and untreated.' 

INVISIBLY ILL

Invisibly Ill Video Sneak Preview

This interesting video preview can be watched here 

Bec is currently writing, directing and producing a series of self-funded educational documentaries entitled Invisibly Ill

This sneak preview starts with interviews with Californian Microbiologist Prof Garth Nicolson, founder of the Institute of Molecular Medicine and New Jersey Psychiatrist Dr Robert Bransfield, President of the International Lyme and Associated Diseases Educational Foundation

Dr Bransfield - I think one way to think of it is, if you have chronic infection that adversely affects the brain it has different affects at different points in a person's life.

If it affects fetal development we see developmental diseases and Autism.

If it is in middle life we see depression, anxiety and cognitive impairments.

If it is in early life and sometimes fetal it may show as psychosis like Bipolar or Schizophrenia.

If it is in later life it can be associated with Dementia.

But in all those cases what they have in common is there's a provocation of the immune system and there's close communication between the immune system and the nervous system.

Prof Nicolson - Stealth infections are in general bacterial but some cases viral infections, that can get inside and hide inside cells and they can't be seen by the immune system

Dr Bransfield - Chronic persistent low grade infections

Prof Nicolson - The most common stealth infections related to Chronic Illnesses are number one Mycoplasma, Chlamydia Pneumonia, Borrelia Burgdorferi which is one of the causative components of Lyme Disease a complex illness involving not only Borrelia but Mycoplasma and other infections as well.

Dr Bransfield - Babesia comes up and certain viruses Herpes 1,2,6, Toxoplasmosis but there's other infections that are not well identified and those are invariably as a group, these slow growing relapsing stealth infections that stay in the body in a low grade way and slowly impact and have affect over time.

Prof Nicolson - All these infections spread throughout the body and tend to end up in the central nervous system where they can cause tremendous damage.

That's just the start so go to the link to watch several speakers on this subject.

Great work Bec I look forward to watching more and visiting your website for further information here