LYME DISEASE IN THE UK

Although the introduction is not English the presentation is in English.









These presentations were at the Lyme Disease Action Conference in 2008
slides available here

LYME RESEARCH UK AND IRELAND - RESEARCH

New survey of the experience of health services of people with tick-borne infections in the UK and Ireland (Eire). This is set up by a group called LymeResearchUk and Ireland in conjunction with the charity Tick Talk Ireland.

This is survey by an independent group of researchers, led by Kate Bloor. She is fully registered with the Social Research Association, and this project adheres to their ethical guidelines.

The easiest way of filling it in is via this link;

http://www.lymediseaseaction.org.uk/latest-news/health-services-survey/

There are several OTHER ways of getting access to the survey.
You can be sent a direct link to the on-line survey, by email contact
lymeresearchuk@btitnernet.com

and/or a copy of the paper version (either email or sent to you in the post, UK or Ireland only).

We need to recruit people far and wide, including those who might not be on websites, have been treated and are better, those who were treated quickly etc.

Please ask permission of contacts before you pass this information on.

If you want an example of the kind of research that has been done, please find the link below. You can also sign up for information via social network sites
(link below).

http://ticktalkireland.wordpress.com/2011/02/14/lyme-policy-uk/

Many thanks for your help and interest.
Kate Bloor

Find Lyme Research UK on
Facebook: http://www.facebook.com/pages/Lyme-Research-UK/

THESE PATIENTS ARE SICK!

The Emperor’s New Clothes, Chronic Lyme Disease, and the Infectious Disease Society of America

Burton A Waisbren Sr. M.D. FACP
Founding Member and Fellow of the Infectious Disease Society of America

Waisbren Clinic

This essay will start with a definition of Chronic Lyme disease: Chronic Lyme disease is a syndrome that results when individuals who have been inoculated with multiple microorganisms by infected ticks and who have not responded to an initial course of doxycycline develop extreme fatigue, intermittent fever, joint pain, muscle pain, brain fog, concentration difficulties, skin rashes, and in many instances symptoms of autoimmune disease to the extent that they impinge upon their quality of life.

When one comes face to face with patients of this type in whom other diseases are ruled out, it is obvious that something serious is amiss.

It’s a conundrum why a group of respected physicians who are members of the Infectious Disease Society of America have not recognized this and have, instead, written a guideline that essentially denies that the syndrome exists. This guideline has resulted in literally hundreds of patients unable to be treated for Chronic Lyme disease.----------------------

go to the link for the full article here

continued and my favorite piece of research -

'Phillips, in a brilliant critique of the IDSA guidelines, has separated out numerous observational studies that suggest the occurrence of chronic Lyme disease as described in this essay.'

-----------------------------

Treatment of Chronic Lyme Disease: Fifty-One Case Reports and Essays in ...

By Burton A Waisbren Sr MD Facp Fidsa, Burton A. Waisbren, Sr.

This new book written by this brave IDSA doctor is available to buy but also read the first 34 pages here

IN MEDICINE WE DO NOT HAVE POPES OR FLAWLESS SAGE MENTORS.

Well argued presentation of traditional, conservative, IDSA Approach,November 1, 2011 link here

By

James Schaller "Physician" (USA) - See all my reviews

Amazon Verified Purchase(What's this?)

This review is from: Lyme Borreliosis in Europe and North America: Epidemiology and Clinical Practice (Hardcover)

Frankly, I am stunned I am doing the first review of this textbook. It shows immense sweat, effort and presents its position very clearly. The authors want to offer hope for cure and to make one tick infection, Lyme disease, seem managable. They are concerned with over treatment, and express common but useful concerns.

I have read most of the references in this book for my own new 7TH tick and flea infection text, and for others on TBD coming. While I would appeal that EMERGING DISEASE and AUTHORITATIVE cannot be in the same chapter, and that in tick and flea infection medicine triumphalistic speech is not possible, it is good that liberty allows scientists, such as these with doctor of medicine degrees, to publish freeely on what they feel is the best approach and why. They are clear and readable. The "why" is clear.

Of course Kuhn and dozens of others have shown objectivity in medicine and science is an illusion, and we bring so much of our inner self, our presuppositions, to how WE handle over ten thousand references and over 50,000 diagnosed patients who are positive with a tick infection. This does not apply to any single position, but to every position related to these emerging infections.

I love difference, and feel fear of difference is sad and in dealing with fully trained doctors of medicine, it is not the place to report or threaten traditional physicians or ones that take soberly what we all see--some people are not better after a solid treatment of one or two infections. Meaning, some people are very sick, and fail every type of treatment model.

I appreciate any hypothesis of what we should do with patients still not better after 2, 4 or 8 weeks.

I will defend any doctorate of medicine to write and present a plan that makes sense to them and thier study and experience.

LET ME BE VERY CLEAR. I TREAT OR EXAMINE PEOPLE TREATED BY EVERY SCHOOL OF THOUGHT IN TICK AND FLEA INFECTION MEDICINE. WE ALWAYS FIND THINGS THAT SHOW MORE IS GOING ON THAN PREVIOUSLY REPRORTED.

I LEARN FROM ALL, AND AM IMMENSELY CAREFUL DUE TO CONCERNS EXPRESSED BY EVERY GROUP AND CAMP.

AND FEEL THIS IS EMERGING AND GROWING AND WE NEED TO ADMIT THAT "CO-INFECTIONS" ARE NOT CO--ANYTHING, BUT ROUTINE, AND ROUTINELY MISSED.

LYME ALONE WITH NO VIRUSES, OTHER BACTERIA AND PROTOZOA IS QUESTIONABLE AFTER A DEEP READING OF 4,000 ARTICLES AND THE UNDERSTANDING OF THE PETRI DISH GUTS OF THE I. SCAP. TICK.

The doctor who says I am wrong on position 230 serves me, and makes me want to listen. The doctor that wants to remove someone's practice is niave, fascist, and has no understanding of power, contacts and influence of people to act against

They also do not see what they do not know. This is not science. It is gang warfare. We cannot do it another month to any MD.

We need to drop the raving and hate speech. It is not science. It is not medicine. It is not even a 200 level college class of the philosophy of knowing or modern philosophy of science.

I have seen every position of the dozen approaches used all over the world, help and harm people. This medicine covers at least fifteen specialties, and if that is new, your clinical knowledge of the domino effect in systems of the body needs a tune up.

IN CONCLUSION, I AM ALWAYS IMPRESSED BY THESE AUTHORS, AND WOULD FIGHT FOR THIER RIGHT TO HOLD THESE POSITIONS. I ONLY ASK THAT THEY APPRECIATE THAT current science IS OUTDATED IN SIX MONTHS EVEN IF THEY DO NOT KNOW--THE FLOOD OF PAPERS REQUIRES 50 HOURS OF READING A WEEK.

THANK YOU. YOU DO NOT NEED TO EMBRACE MY MODERATE POSITION. AND IT IS LIKELY WE ARE SEEING EACH OTHERS FAIURES, WHICH CAN CREATE A FALSE VIEW OF IDEAL TREATMENTS, AND THE MOTIVES OF TICK AND FLEA INFECTION INTERESTED DOCTORS OF MEDICINE.

Good job. I am sure it was not fun to write this position. IT WAS FUN TO READ AS A THINKER AND I COME TO MY OWN CONCLUSIONS. IN MEDICINE WE DO NOT HAVE POPES OR FLAWLESS SAGE MENTORS. Something most of use should recall?

Again, clear and fine writting.

ILADS CONFERENCE TORONTO - A SNIPPET BUT SIGNIFICANT NEVERTHELESS

Dr Horowitz Talks about Babesia Treatment - presenting at ILADS conference in Toronto 2011



Not included in this video but Dr Horowitz started his presentation talking about his recent visit to China to discuss Babesia with the CDC in China - good to know China is taking not just Babesia but other tick borne illnesses seriously and not being fooled by the IDSA restrictive guidelines.

Dr Jemsek, Dr Jones and Dr Raxlen at ILADS conference in Toronto 2011
Dr Jones touches on pregnancy and Lyme Disease.



Management of Ixodes scapularis bites — Dr Maloney




More information and DVD's will be available from the ILADS website here

WALK IN THE WOODS

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.

Editors
Committee on Lyme Disease and Other Tick-Borne Diseases: The State of the Science.
Source
Washington (DC): National Academies Press (US); 2011.
The National Academies Collection: Reports funded by National Institutes of Health.

Excerpt
It was obvious to participants at the workshop that a significant impasse has developed in the world of Lyme disease. There are conflicts within and among the science; policy; politics; medicine; and professional, public, and patient views pertaining to the subject, which have created significant misunderstandings, strong emotions, mistrust, and a game of blaming others who are not aligned with one’s views. Lines in the sand have been drawn, sides have been taken, and frustration prevails. The “walk in the woods” process of conflict resolution or a similar process seems necessary for creating a new environment of trust and a better environment for more constructive dialogue to help focus research needs and achieve better outcomes. Such a process does not imply a compromise of the science but rather is needed to shift to a more positive and productive environment to optimize critical research and promote new collaborations.

Go to the link here to read this excellent report laid out into easily accessible sections.
______________________________________________________

WALK IN THE WOODS - this process is so long overdue and aptly named in more ways than one, I spent the weekend listening to the ILADS 2011 Toronto conference streamed live - so much research is available and has been from 20,30+ years, even written by the IDSA denialists themselves, showing Lyme Disease and other tick borne illnesses to be difficult to test for and capable of persistent infection despite several courses of antibiotics - why do our Health Departments choose to ignore such a body of evidence?

It makes no sense which ever way you consider this - the health burden costs in themselves would make economic sense in ensuring that people are early diagnosed and treated not to mention adequate treatment for those of us who develop a chronic Lyme Disease, that's without the most obvious need to improve the quality of life for so many patients who like me have an antibiotic responsive illness following a tick bite.

It was a walk in the woods next to my home where I was bitten by ticks that caused my Lyme Disease illness and there is a growing number of my neighbours also infected, here's hoping this process of 'Walk in the Woods' - helps to get our doctors really working hard together to reduce this growing burden of ill health.

DOCTORS IGNORING SCIENCE

This was on the MEASSOCIATION website here

Dr Andrew John WRIGHT
GMC Reference Number: 2825184

Area of practice: Lancashire

Planned dates: 17 October to 25 November 2011
St James’s Building, 79 Oxford Street, Manchester, M1 6FQ

The Fitness to Practise Panel will meet at St James’s Building, 79 Oxford Street, Manchester, M1 6FQ to consider a new case of impairment by reason of misconduct.

The Panel will inquire into the allegation that between 2003 and 2006, Dr Wright, a General Practitioner, ran a private practice specialising in the management of fatigue disorders. It is alleged that Dr Wright instructed the Bowen Research and Training Institute, Florida, to test samples of six patients’ blood despite the Institute not being licensed for clinical laboratory testing. It is also alleged that in respect of a number of patients Dr Wright made diagnoses which were based upon inadequate evidence and subsequently initiated treatment.

The above reflects the allegation as it stands at the start of the hearing. The allegation may be amended as the hearing proceeds and when findings of fact are made by the Panel. If you require up to date information regarding the allegation throughout the course of the hearing, please contact the GMC’s Press Office.

In accordance with Rule 41(2) of the General Medical Council (Fitness to Practise) Rules 2004, the Panel may decide to exclude the public from the proceedings or any part of the proceedings, where they consider that the circumstances of the case outweigh the public interest in holding the hearing in public.

This was my response I would have liked to say so much more infact I'd have liked to throw all my blog posts at the MEAssociation and the GMC:-

There has been a concerted effort by our HPA to take out any doctor that dares to diagnose or treat patients for Chronic Lyme Disease regardless of whether patients have benefited from that treatment.

D of H reply to me recently ‘The Department is well aware of certain medical practitioners in the UK whose diagnosis and inappropriate treatment for Lyme disease puts patients at risk.’ Seems to me decisions were made even before these doctors come before a GMC hearing.

I was one of the fortunate patients who was given a clinical diagnosis of Lyme Disease (not by AW) and treated on long term antibiotics in line with International Lyme and Associated Diseases Society. I have recovered from painful debilitating arthritis and muscle weakness which was initially diagnosed as Fibromyalgia and then ME/CFS and later Polymyalgia Rheumatica until a chance course of antibiotics led to significant improvements. I was retired early on the grounds of ill health from the Civil Service but now I have my health and my life, with no pain and no disability.

Our Health Authorities are disregarding the wealth of research that shows this illness like other Borrelia to be a relapsing remitting illness capable of evading our immune system and short courses of antibiotic treatment. Visit the ILADS website for more information and Lyme Disease Action Website for information related especially to us here in the UK.

Last year the Institute of Medicine held a workshop on Lyme Disease and other tick borne illnesses their findings ‘Significant Gaps Remain In Understanding of Lyme Disease.’

Dr S O’Connell presented at that workshop and her presentation is still available to watch and listen to on their website. Dr O’Connell says in her presentation ‘we all agree we need improved diagnostic tests for all the tick-borne diseases.’

Current NHS tests for Lyme Disease can, according to some research, miss 50% of cases, they are antibody tests and the makers of those test kits used by our NHS – Trinity Biotech says that a ‘Negative results (either first or second-tier) should not be used to exclude Lyme disease.’

Dr O’Connell reported our doctors specialising in treating patients with Lyme Disease to the GMC, she will be called as the ‘expert’ witness, she is very well aware of the controversy that shows this disease to be far more complex than HPA accept following the restrictive and discredited IDSA guidelines.

At the IDSA review hearing the final report threw out any research that was done in Europe for the reason that in Europe we have several different species of Borrelia than in the USA, because they presented differently and had different illness patterns – information can be found on LDA website. We need clinical guidelines that are appropriate for us here in the UK.

For further reading see ILADS website for presentations given to IDSA review hearing in particular Steven Phillips presentation of 25 studies on seronegativity and persistent infection on 18 occasions the authors of the IDSA contested guidelines were involved in those studies and yet chose to ignore them in their restricted guidelines.

The GMC are being mislead into thinking they just have a bunch of wayward doctors out to make a fast buck- in reality we will find one day that they are very courageous doctors realising that this is the biggest medical disgrace of all time and struggling against all odds to find ways to help their patients get better and get their lives back.

We don’t know all the answers and they will be the first to acknowledge that, but we do know that some of us do respond well to long term antibiotic treatment.

If those denying this disease in it’s Chronic form would put as much effort into looking at the thousands of research papers (over 19000) then science could move on and make a significant contribution in helping patients who have an antibiotic responsive illness following a tick bite.

I hope others will comment on the ME Associations website and tell it as it is for patients with chronic Lyme Disease. here