THE LANCET ALLOWS A VOICE ON CHRONIC LYME DISEASE

The Lancet on Antiscience and Ethical concerns associated with Advocacy of Lyme Disease link to details of this here

The Lancet has published three responses :-
 1. Stella Huyshe-Shires Chair of Lyme Disease Action  here

In which she points out 'The British Infection Association has listened to criticism of the position statement and is now collaborating with LDA and a Department of Health funded body, the James Lind Alliance, on documentation of the uncertainties in treatment and diagnosis of Lyme disease. Despite the prevailing view that patients do not understand the issues, some clinicians are prepared to work with patients. We might have had greater clinician participation in this project had it not been for reports such as Auwaerter and co-workers', but, in the end, evidence will triumph over institutional bias.'

 2. Carl Tuttle  here

 'Paul Auwaerter and colleagues are among the handful of individuals who have controlled the Lyme disease research agenda for decades and ultimately which data have been reported.'

 3. Prof Perronne University Hospital Garches Paris. here

'Recommended serological tests for Lyme disease vary greatly in sensitivity' 'Another difficulty is that, although many variants and new species of Borrelia are regularly discovered, most commercial tests rely on the original Massachusetts B31 isolate of Borrelia burgdorferi, used since 1982. However, Scottish experts were able to improve the sensitivity of their tests with local strains of Borrelia spp'
and also
'Additionally, peer-reviewed studies show that other bacterial, viral, or parasitic infections might contribute to syndromes associated with Lyme disease or its mimics. Microbial involvement is being actively investigated in other well known but poorly understood conditions. For example, the possible role of spirochetes, including B burgdorferi, has become the subject of research into the pathophysiology of Alzheimer's disease'

Perronne references Miklossy's work which is important especially as Alzheimer's is such a serious Health Care problem here

Prof Perronne is an ID and Tropical Diseases doctor and works in a state hospital, not privately and yet he is finding the approach of treating patients with Lyme Disease on long term antibiotics is beneficial. He was recently interviewed on French TV along with Prof Luc Montagnier (Nobel Laureate for his work with HIV) - interestingly the program was about treating Autism with antibiotics. A study done by 10 doctors in France treating 200 children with Autism on long term antibiotics and 4 out of 5 recovered - further research is to follow. Some, but not all of the children had Lyme Disease. A connection between Lyme and some cases of Autism has also been made by doctors in US.  TV interview here 

There was a reply from the authors of the Antiscience paper trotting out their predictable views and although they sight the study done by Cottle at Liverpool, that study is subjective and inconclusive, as there is no test that can prove a patient doesn't have Lyme. here

Thank you to the Lancet for giving others a voice, I was disappointed that you published such a thoroughly opinionated and un scientific article in the first place and have often wondered why?

LYME DISEASE – THE CHALLENGE FOR PATIENTS.

Lyme disease – the challenge for patients published in the Netherlands Journal of Medicine. here 

An excellent response by S.R. Huyshe-Shires, S. Pearson to an editorial 'Lyme borreliosis: the challenge of accuracy.' To read the background go to Lyme Disease Action website here

'Lack of good quality evidence concerning diagnosis and treatment disempowers doctors and all too often disenfranchises and alienates patients. Unfortunately the recent editorial by Klempner et al., by foreclosing valid questions, can only perpetuate this state of affairs.'

RESEARCH BY SURREY UNIVERSITY COULD HELP PEOPLE IN GUILDFORD AS IT ENCOURAGES AUTHORITIES TO RAISE AWARENESS OF THE DANGERS OF CATCHING LYME DISEASE

Guildford is a delightful town, the County town of Surrey UK. It is situated in a gap in the north Downs and is surrounded by beautiful countryside which is enjoyed by  many - walkers, dog walkers and cyclists.

The University of Surrey was involved in research with the Forestry Commission and Oxford University into 'Assessing and Communicating Animal Disease risks for countryside users.' here 

Abstract

Management of zoonotic disease is necessary if countryside users are to gain benefit rather than suffer harm from their activities, and to avoid disproportionate reaction to novel threats. We introduce a conceptual framework based on the pressure-state-response model with five broad responses to disease incidence. Influencing public behaviour is one response and requires risk communication based on an integration of knowledge about the disease with an understanding of how publics respond to precautionary advice. A second framework emphasizes how risk communication involves more than information provision and should address dimensions including points-of-intervention over time, place and audience. The frameworks are developed by reference to tick-borne Lyme borreliosis (also known as Lyme disease), for which informed precautionary behaviour is particularly relevant. Interventions to influence behaviour can be directed by knowledge of spatial and temporal variation of tick abundance, what constitutes risky behaviour, how people respond to information of varying content, and an understanding of the social practices related to countryside use. The frameworks clarify the response options and help identify who is responsible for risk communication. These aspects are not consistently understood, and may result in an underestimation of the role of land-based organizations in facilitating appropriate precautionary behaviour.

David Uzell was the team member from the Psychology dept at University of Surrey, Guildford. This is a pdf from that research 


'Making sense of unfamiliar risks in the countryside: the case of Lyme
disease'
Afrodita Marcu, David Uzzell, and Julie Barnetta



'These results suggest that policy makers and countryside authorities should not shy away from providing information on possible health risks as it is unlikely that this would act as a barrier against countryside use.'


Thank you David Uzzell, here is hoping that in time this will encourage organisations to take a proactive approach to warning the public of the possibilities of tick borne diseases.


My immediate concern is for people visiting Guildford because there is a growing number of ticks in this area and a growing incidence of cases of Lyme Disease.


I have spoken to people with Lyme Disease who have been infected from tick bites in their gardens, Woodland, Downland and along the River Wey. 


Several cases of Lyme Disease have been diagnosed in Merrow,  myself and 3 others within 200meters of my house, all our gardens side onto woodland, the other side of this woodland Pheasants ( competent hosts for Borrelia, Lyme Disease) are bred in Clandon Park. The woods and our gardens have ample hosts to feed the nymphal ticks before the ticks seek out their preferred host a deer, also found in abundance. 


Thankfully local doctors surgeries are becoming aware and hopefully more cases will be treated in the early stages and prevent others from suffering years of a chronic illness because the doctors missed those early signs of bites, rashes, summer flu' and migrating arthralgias. 


I have recovered on long term antibiotics. 


How many patients living around the Guildford area suffer from symptoms of Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal Disease, Polymyalgia Rheumatica not to mention so many other health problems, heart block, neurological problems, psychiatric problems and have never been properly assessed to see if it could be caused by Lyme Disease. With 50% not seeing the tick as the smallest is the size of a poppy seed, 40% don't get the Bulls eye rash, and blood tests can miss 50% of cases it is so important to raise awareness.


Sadly at present patients are the ones who drive awareness campaigns and not the Authorites. Guildford Borough do now have something on their website to warn people but not many of us would think to check their website  if we do not know Lyme Disease can be caught from tick bites in the Guildford area. here 

EMERGING INCIDENCE OF TICK BORNE DISEASES IN AUSTRALIA

Emerging incidence of Lyme borreliosis, babesiosis, bartonellosis, and granulocytic ehrlichiosis in Australia

Peter J Mayne

Conclusion

The study identified a much larger tick-borne disease (TBD) burden within the Australian community than hitherto reported. In particular, the first cases of endemic human Babesia andBartonella disease in Australia with coexisting Borrelia infection are described, thus defining current hidden and unrecognized components of TBD and demonstrating local acquisition in patients who have never been abroad.

To see the full paper here  

MULTIPLE SCLEROSIS AND LYME DISEASE?

Local Lyme Disease Researcher to Speak in Hermantown

For the past 20 years since he was diagnosed with a MS-like disorder and treated for Lyme disease, Duluth resident Tom Grier has taken a special interest in Lyme patients that present with symptoms similar to Multiple Sclerosis.

Mr. Grier’s interest in investigating his own disease goes far beyond what the average patient would do.

You see Mr. Grier created an organization that registers symptomatic patients for tissue collection and brain autopsies at the time of their death.

His main interest is to find formerly treated Lyme patients that have gone on to be diagnosed with either MS or dementia.

“Since 1975 when Lyme disease was first described in the medical literature, it has always been an assumption that the organism that causes Lyme disease mostly an arthritic disease and easily eradicated with the traditional and current treatment protocols of antibiotics.”

Explains Mr. Grier. “The truth is no serology test or spinal fluid test can accurately detect the sequestered infection within the human brain.

The only way to know for sure is to do brain autopsies, and look directly at the brain tissue with special dyes and stains.

Without special immune-antibody stains developed by the NIH, the bacteria would remain completely invisible under the microscope.’’

“Sadly no one is doing this kind of Lyme research; oddly the medical community seems to be strangely resistant to this kind of medical research and I’d like to know why? ” asks Mr. Grier.

“Pathology is far more definitive than assumptions, and much of our current understanding of Lyme is based on a very flimsy foundation of facts most of which turned out to be completely wrong.”

Something that Mr Grier points out in his talk are the ten facts about Lyme that the experts got wrong.

As examples, Mr. Grier cites that shortly after Lyme disease was first described in 1975 but before we knew what actually caused Lyme in 1981; that the public was told many things as absolute facts about Lyme disease that all turned out to be untrue.

Grier continues, “We were told by the experts of the time that Lyme was only transmitted by a new species of tick found in the NE USA (Ixodes dammini discovered by Andrew Spielman of Harvard) so Lyme was supposed to be a regional and isolated illness.

We were told it was mainly an arthritic disease and it turns out it can cause severe neurological damage.

We were told it was not transmitted transplacentally but several fetal autopsies have dispelled that myth.

We were told by some Lyme experts that the Lyme disease rash has to be the size of a basketball or it isn’t Lyme disease.

The truth is many Lyme rashes are only a few centimeters or not even seen.

We were told that the Lyme organism isn’t an intracellular organism which can help infections hide and remain dormant and safe from the immune system.

But as it turns out Lyme disease most definitely is an intracellular disease of the brain and we have local brain autopsies that prove this to be true despite their being treated aggressively with antibiotics.”

“The basis of our work is the idea that the bacteria enters the brain early in the infection and is trapped in brain tissue and even trapped inside individual brain neurons.

This happens after the protective barrier called the blood brain barrier is broken down by the infection in the first two weeks before the Lyme tests can even detect the infection.

Then after the infection has been cleared from the blood stream either by our immune system or by antibiotics, the blood brain barrier reseals itself weeks later trapping the infection within the brain.”

Mr. Grier explains that the end result is that the immune system stops making antibodies that the Lyme tests are looking for.

All our Lyme tests are indirect tests and have many many pitfalls.

The infection in the brain remains relatively silent for years or even decades until it results in an MS-like condition.

Explains Mr. Grier, “It isn’t a matter of if this happens because we already have individual pathologies that reveal this to be true.

Following these patients for years doing frequent brain MRIs reveals long-term treatment results in a shrinking of the white-matter lesions that look similar to MS lesions in the brain.

The question is how often is it occurring and what kind of treatment strategies do we need to create to detect brain involvement earlier, and how do we best treat longstanding spirochetal infections within the human brain?”

One of the reasons Mr. Grier has decided to do this talk in Hermantown was because of a Lyme disease documentary being filmed in Twig MN by local Duluth videographer Ben Barneveld who uncovered numerous disabled patients in the local area with a history of Lyme disease.

Unexpectedly a large percentage of these treated Lyme patients progressed on after treatment to having such conditions as:

MS, ALS, Parkinson’s, Rheumatoid Arthritis, and enlarged hearts.

Most of these patients only became aware that their neighbors were also sick like themselves, after local Lyme patients organized a showing of a Lyme disease documentary at the Twig town hall.

Now several of those patients from the Twig-Hermantown area have since registered for brain autopsies and have authorized their remains for Lyme disease research.

The lecture is titled: “Lyme On The Brain” and is a talk based almost entirely on autopsy data and pathology.

Mr. Grier’s lecture is

FREE and open  to the general public

Saturday, April 28th

10 AM

Grace Lutheran Church

5600 Miller Trunk Highway

HERMANTOWN, MINN.

All questions should be directed to

donatebrain@gmail.com

Tom Grier 218-728-3914

2000 (Poland): Lyme borreliosis and Multiple sclerosis: Any Connection? PDF here 

 

A Seroepidemic study. Ann Agric Environ Med. issue 7, 141-143

Synopsis: 

10 out of 26 MS patients tested positive for Lyme borreliosis. Notes how it is virtually impossible to make a distinction between late stage Lyme disease and Multiple sclerosis, not even with MRI. Diagnosis of MS vs. late stage neuroborreliosis are guesswork – there are no reliable tests for either. Conclusion: Multiple sclerosis may often be associated with Borrelia infection.

Ann Agric Environ Med. 2000;7(2):141-3.

Lyme borreliosis and multiple sclerosis: any connection? A seroepidemic study.

Chmielewska-Badora J, Cisak E, Dutkiewicz J.

Source

Department of Occupational Biohazards, Institute of Agricultural Medicine, Jaczewskiego 2, 20-090 Lublin, Poland.

Abstract

A total of 769 adult neurological patients hospitalised in clinics and hospitals situated in the Lublin region (eastern Poland) were examined during the years 1997-2000 with ELISA test for the presence of anti-Borrelia burgdorferi sensu lato antibodies. A statististically significant (p=0.0422) relationship was found between the clinically confirmed diagnosis of multiple sclerosis and the positive serologic reaction with Borrelia antigen. Ten out 26 patients with multiple sclerosis (38.5%) showed positive serologic reaction to Borrelia, whereas among the total number of examined neurological patients the frequency of positive findings was twice as low (19.4%). The result suggests that multiple sclerosis may be often associated with Borrelia infection

PMID:

 

11153045

 

[PubMed - indexed for MEDLINE] 

Free full text

'What is interesting here Adam is that they were not looking for MS, they gave ELISA tests to 769 neurologically impaired patients over a 

3 year period and the ones that tested positive for Lyme was only 26 patients but 1/3 of the time they were  MS patients from that group of 769

That is a high correlation considering the 50 % failure rate of ELISA tests.'

LYME DISEASE IN THE NEWS UK

At last we are having some decent coverage of Lyme Disease in the news here in the UK.

This was on BBC news this morning here and a link to some decent coverage last year which I missed here

Thank you to the Health Protection Agency for at last highlighting the dangers and supporting Tick Awareness week here 

HPA advises public to be 'tick aware' to reduce the risk of Lyme disease

Daily Mail here 

Ramblers warned of 'hidden menace' of ticks at English beauty spots as Lyme disease cases triple in a decade 

and here 

Staycationers told to beware of ticks and Lyme disease as cases in England and Wales soar

The Telegraph here 

Health Experts warn of hidden spread of Lyme Disease

Thanks to BADA UK  many more articles have been in local newspapers 

Let us hope that with more awareness more people can take proper precautions and if bitten by a tick can seek early appropriate medical help. Not everyone is aware of the sometimes poppy seed sized tick and not everyone gets the Bulls Eye rash. As symptoms can go on to develop often after a flu' like illness such as arthralgias, myalgias, arthritis, muscle weakness, phsychiatric problems, neurological problems, heart problems and be mis diagnosed as many other illnesses, Fibromyalgia, ME/CFS, Polymyalgia Rheumatica, Multiple Sclerosis, Parkinson's, Autism, OCD, ADHD, Alzheimer's and the list goes on.

What we really need is a good in depth article from a science Journalist to tackle the problems over chronic Lyme Disease  and the denial going on that leaves so many patients struggling years without proper diagnosis or adequate treatment.

OUT WITH THE OLD - LYME TESTING IN ENGLAND AND WALES

News today posted on Lyme Disease Action Website here

Dr Sue O'Connell previous head of the LBU at Southampton retired on Friday March 30th

I wish her a very long retirement long enough to watch the science changing regarding Lyme Disease and other tick borne illnesses and long enough for her to reflect how many patients could have been helped had science been allowed to speak above people's opinions.

My GP said Dr O'Connell told her to stop giving me antibiotics, other patients have told me the same. Thankfully in my case my GP could see my improvements and continued to treat me as I continued to recover - many other patients tell me that their doctors refused further treatment because of her advice, if that is the case I am sure a cry of delight will be sounding from many in the UK Lyme community at the news of her Retirement.

LDA go on to say the Head of Emerging Infections and Zoonoses in the Department of Health who has been responsible for Minister' responses on Lyme disease over the last two governments also retires.

Another piece of delightful news lets hope the successor can pen a more intelligent reply than those I have received since 2007. As a Retired Civil Servant with experience of similar such correspondence from within the DWP I would not have accepted such poor correspondence.

This is also good news to Lyme patients elsewhere  in the World as this is one less member of what is commonly referred to as the Lyme Cabal.

There is a little tune keeps popping into my head something from the Wizard of Oz - I am sure those familiar with the problems Lyme patients have had over the years will guess the tune I refer to.

Good to hear the testing is being moved from Southampton to Porton and with new testing being introduced lets hope this will help to improve testing and benefit the patients.

Another tune that comes to mind is 'Times they are a changing' - it seems there are stirrings from many of the major countries recently Germany, France, can't wait to hear the outcome from a recent meeting in Canada and of course it started this year with the US - Persistence study in non human primates here
and now recently Australia

Do go to Lyme Disease Action to read their report here on all change.

MORE LYME DISEASE AWARENESS IN AUSTRALIA

Thanks to Dr Mualla McManus for this excellent Video posted on the Karl McManus Foundation website here

Cases have been misdiagnosed as Arthritis, Multiple Sclerosis, Motor Neurone's, Parkinson's, and as in my case Polymyalgia Rheumatica, Fibromyalgia, ME/CFS and the list goes on.

Australia have been advocating hard recently and here is a link to several programs presented on TV in Australia here 

Many thanks for all their work in bringing more awareness to this dreadful disease which can more easily be treated in the early stages but capable of causing such horrendous ill health if left to develop into a Chronic Illness.

Our Health Authorities ought to be ashamed of their lack of efforts to understand this disease in it's chronic form.

Update more news from Australia here