camclub articles - February 2015
The ticking Lyme bomb
LifeSpan Nutrition by Barbara Wren
Ruth Duncan - Myofascial Release UK
by Meleni Aldridge
On Monday 19th January 2015, I attended a Lyme Disease conference at the UK Houses of Parliament. The conference was convened by Mr Demetrios Loukas, a Lyme Disease patient himself, in order to give a voice to the concerns of the UK’s patient interest group over the NHS’ diagnosis and treatment of the vector-borne infection.
TOP FACTS
- 15 million year old tick-borne pathogen wreaking havoc on health – and increasing
- Lyme Disease is consistently mishandled by the UK NHS and many people are suffering needlessly
- Angry patient group brings complaints to Houses of Parliament with Lyme Disease conference
- Conference succeeds in defining key problems as well as offering solutions for new treatment approaches, but were any decision-makers listening?
Borrelia background
Lyme Disease is the name given to an infection caused by the pathogen Borrelia Burgdorferi [http://en.wikipedia.org/wiki/Borrelia_burgdorferi]. Described scientifically as a novel spirochaete, it primarily lives as an extracellular pathogen and has been around awhile — 15 million years to be precise! Whilst it is now accepted there are numerous subspecies, B. burdorferi is still the only species identified in current laboratory tests. Borrelia is carried by ticks and transmitted to humans through tick bites, but only 30-40% of people are ever aware that they have been bitten or see evidence of a tick bite.
It’s generally acknowledged that there is a window of around 16 hours between adherence of the tick, bite and start of transference, where the body’s defense reaction in the skin has a chance to destroy the invading spirochaetes. With a further 5-7 days for full transference of the infection, although it can take weeks longer. The classic tell-tale sign of a tick bite infected by Borrelia is a bulls-eye rash that develops around the site of the bite or an extended expanse of redness (Erythema migrans) with no obvious cause. Here again, complications with identification arise from the fact that only 30-40% of people ever show such a rash. To complicate matters further, only 20% ever develop a feverish, summer flu-like, reaction as their immune systems wage war on the newly integrated pathogen.
A WHO report from 2006 describes Lyme infection as the most common vector borne disease in Europe and that it’s a multi-system disorder that can be treated with antibiotics. It’s the multi-system effect that further clouds the diagnostic lens by manifesting as disorders that can be otherwise labeled, e.g. chronic fatigue syndrome, Alzheimer’s Disease, autism, multiple sclerosis, rheumatoid arthritis, osteo arthritis, fibromyalgia, neuritis and encephalitis, to name a few.
The propensity for little or no definitive evidence of a tick-bite reaction, coupled with doctors poorly versed in recognising signs and symptoms corresponding with a Lyme infection and limited or invalid testing, has led to a large and disaffected patient group calling for an immediate overhaul of the UK’s clinical protocols.
Caption: Erythema migrans – bulls-eye rash in Lyme disease
Laying it on the line
The conference was hosted by The Right Honourable Simon Hughes MP and chaired by, Lady Mar . Around 15 Members of Parliament confirmed attendance, but only 2 or 3 attended and only stayed a short while. Amongst the speaker line-up was only one representative to justify the UK’s laboratory protocols for Lyme Disease from Public Health England, Dr Tim Brooks.
The opening speaker, Dr Armin Schwarzbach – an international expert on Lyme Disease and a specialist in laboratory medicine – outlined the problems with detection, diagnosis and treatment. The central tenet of his message being that government policy is far out of touch with the reality facing patients diagnosed, or awaiting diagnosis with Borrelia. The US CDC still refuses to acknowledge that persistent Lyme infection is commonplace. Preferring instead to label patients with the tag of ‘Post Treatment Lyme Disease Syndrome’ (PTLDS) if they continue to show symptoms after one cycle of treatment with antibiotics. Once labelled as PTLDS, patients are then classified as sufferers of whichever disease their symptoms best fit, with further treatment for Borrelia no longer an option. In terms of misdiagnosis, the UK is not much different.
Chris Moore, Managing Director of Nordic Laboratories , ascertained very quickly that of the 100 or so patients in the room, only around one-fifth had actually received a positive laboratory test. Yet these patients are living in the tatters of lives torn apart by the symptoms of Borrelia infection and all of them had to seek (and fund) their own treatment because nothing is available on the NHS. He made the point that times have changed. Patients are now very informed and know a lot about their own health and are looking to their doctors for support, not dismissal. After outlining the problems in detection of Borellia with current laboratory tests and introducing new technology, he illustrated the severe socio-economic repercussions of delayed or misdiagnosis with actual case studies.
Mr Loukas’ GP, Dr Mark Ashworth, gave a refreshing and humble perspective from a doctor. He admitted that he had been Demetrios’ GP for several years and during that time he had learned a lot about Demetrios, Lyme Disease and being a GP. He offered a further beacon of light when he said: “It’s so important that GPs keep an open mind and a listening ear” and that they “Had to own up to the fact that there are large tracts of medicine and huge suffering of patients that we simply can’t explain”.
Shorter commentaries followed by a selection, including doctors treating Lyme’s patients privately and the key representative of the UK’s Lyme Disease patient interest group. All agreed that there is a problem and it’s getting worse not better. Lyme Disease is on the increase and the NHS is poorly equipped to deal with it. Patients are suffering extraordinary trauma as a result, much of it unnecessarily if doctors were better educated, more extensive and valid laboratory tests were available and if NICE guidelines allowed for appropriate treatment. The latter summed up honestly by Dr Beryl Beynon, who said: “They [GPs} are no longer free to divert from NICE guidelines and their work is becoming more confined – robotic in many ways.”
Metabolic mayhem
As the conference rolled on, I was left wondering when a connection would be made between the tick bite, the immune defence mechanism, chronic inflammation and metabolic dysregulation – all of which are in play with any and all of the above-mentioned diseases. I was also becoming increasingly alarmed by the inference that being in the great outdoors is dangerous, requiring public warnings about Lyme Disease and should you venture out, to ensure you cover up 1940’s safari-style. Apart from the need of as much vitamin D as we can get in the UK, getting active in nature is probably one of the most healthy choices you can make. Thankfully Chris Newton PhD, the third speaker, addressed these topics.
Dr Newton jumped straight in to elaborating how if one’s immune system is fully functioning, it’s unlikely that adhesion and transference of the Borellia spirochaetes would occur if you were bitten. He showed how an immune system that has been chronically upregulated through metabolic disturbance is unable to mount adequate defence. The remedy for this being largely diet and lifestyle choices given that poor food choices leads to chronic inflammation, as does excessive unresolved stress. He also stressed how important it was to institute these changes even as a long-term Lyme’s patient. In my opinion, his observations offered solid foundations for future treatment protocols.
An ignominious end
During the afternoon a lot of criticism was laid at the foot of the NHS and Public Health England (PHE) , but time constraints and heated emotions prevented a full right of redress by Dr Tim Brooks. Dr Brooks is Head of Clinical Services, Rare and Imported Pathogens Laboratory at Public Health England and is well known to the Lyme’s patient group. He did manage to get a few words out before the meeting broke down, and agreed that Lyme’s cases had increased considerably in recent years. However, PHE only report positive laboratory identifications and seem to feel that because England is an island, many of the vector-borne infections on mainland Europe are not prevalent here. It was unfortunate that the conference ended without many of the patients being given a voice due to timing issues and that emotions ran high during Dr Brooks’ address. Unfortunate too that Dr Brooks seemed to light the blue touch paper when he stated that there was an extended sequence of laboratory tests available on the NHS where Lyme Disease was suspected. The room somewhat imploded at that point given that not a single patient there had ever been offered such tests, which caused Lady Mar to call a halt to proceedings.
Despite the ignominious end, the conference succeeded in outlining the failure in the current approach to Lyme Disease and offering many of the solutions for a new framework. However, as with so many attempts to bridge the gap between patients and service providers, I feel that, sadly, both sides probably left this meeting no less entrenched in their own opinions as they arrived.
by Barbara Wren, Naturopath
Everything in our amazing universe is connected. We need to acknowledge this fact, most particularly when we are looking at the progression of disease in a person and in our population at large.
We see chronic conditions growing at an alarming rate so something which we do every day could be influencing this: feeding ourselves.
People need to join up the dots of the health picture, all the way from pre-conception to the present time.
There will be many events such as sore throats treated in childhood with antibiotics progressing on to conditions like irritable bowel and then possibly chronic fatigue some years later. People need to find a way of understanding how these health events are connected and why they occurred.
The way I see the disease picture forming is the following:
Stress creates dehydration in the body fluids, the dehydrated condition then leads to stagnation of the body fluids thus causing stagnant lymph.
This then moves on to create inflammation in the body and if the
inflammation is constantly suppressed, for instance with antibiotics for sore throats then the level of stagnation becomes even deeper and more serious conditions arise.
This is a typical story I have seen on many occasions over my 40 years of teaching and practicing :
A female patient asked for help for her daughter who has chrohn’s disease. I asked her where is the TB in the family, and she replied that the father had TB. She adds that she herself had anorexia. I then asked where was the autism in the family. She said the daughter who suffered from chrohn’s disease has an autistic son.
So we have TB, not treated adequately, predisposing to an anorexic daughter who has herself a daughter who develops chrohn’s disease. This predisposes her to having a son who develops autism.
All of these illness pictures are connected. The predisposition of stress passed on through the generations has increased thus showing great dehydration, stagnation, acidity and ultimately inflammation affecting higher functioning areas in a person, i.e. autism.
The liver is the organ which controls dehydration and we pass in weaknesses if adequate pre-conceptual work is not undertaken. We see when these pictures are passed from generation to generation, the person becoming more fearful and more prone to acute diseases. When the recurring acute illnesses are suppressed we see very deep chronic diseases appearing in our western populations.
So what are the primary needs of the body which can be addressed through correct nutrition?
Remembering that this is always an individual need. Firstly hydration, secondly pH regulation, thirdly body temperature control, fourthly our ability to store photons and to produce bio photons and finally to attract and utilise oxygen adequately.
The most important thing is for the patient to feel fully empowered by understanding the trail through the family picture of health events and how they were treated. Were acute illnesses resolved or suppressed? To understand takes away the fear enabling the person to take responsibility for their own journey.
Barbara Wren is a Naturopath & Healer and has been teaching and lecturing for the past 27 years, showing people a different approach to healing through nutrition and healing techniques. She is the author of two books – ‘cellular awakening’ and ‘Our Return to the Light’.
Barbara Wren will be leading a one day workshop in central London on 6th March 2015 – ‘Life Span Nutrition’.
See www.allaboutnaturalmedicine.com for full information and bookings. 020 8350 4607 / 07984 59262 – steve flood
Ruth Duncan - Mysofascial Release UK
Never at all did I think I would ever write a book!
Why - well I guess I never considered myself capable of doing it. I do consider myself practical, but certainly not able to eloquently put pen to paper (or fingers to keyboard as I don’t touch type either)
Ruth Duncan & Susan Findley
Perhaps I can credit, or blame, Jane Johnson for suggesting to the publishers, Human Kinetics, that I could write a book on myofascial release (MFR) as part of a series of books called ‘A Hands On Guide’. Jane, who is a physiotherapist, has written other books in the series namely Soft Tissue Release, Postural Assessment, Therapeutic Stretching and Deep Tissue Massage. Susan Findlay from the North London School of Sports Massage has also written another in the series on Sports Massage so altogether with my new book on MFR they offer a great resource for both new and accomplished therapist to learn and develop skills.
I was asked in the summer of 2011 by Human Kinetics if I would consider writing a book for them. I was not keen at all initially. There were just too many things to consider apart from the massive issue of how to write about a therapy that was primarily based on sense of touch and intuition. I simply had no clue on how to even start trying to describe how to perform MFR and make it understandable and also reflect the wisdom, value and professionalism that John F Barnes has spent many years promoting.
John, a physical therapist, has been called the ‘Father’ of modern myofascial release. He developed his approach to MFR over many years as a skilled therapist and has now taught over 100,000 other therapists around the world (www.myofascialrelease.com). There are only around 50-60 therapist in the UK who have made the trip to the USA to train with John and only a very small number of those, including myself, have completed his seminars.
‘A Hands On Guide to Myofascial Release’ came into being in September 2011. After obtaining Johns permission to write the book on his valuable work, I commenced the enormous task of working out my chapter layout and writing the proposal for the acquisitions board for Human Kinetics Europe and North America. This process took almost 9 months, but looking back, it was the easiest part. All I did was copy the layout from the other books in the series and fit mine to them - job done!
Next was the actual writing of the pages, double spaced pages and approximately 67,000 words in all to make it fit the book style and size - gulp!
I spent 2 weeks in a very wet and soggy Cornwall with my partner and our 2 dogs to write the bulk of the book and was quite surprised at how the book began to flow. But my concerns kept me awake at night - how can I write a book on something which is built of the sense of touch and on structures of the body which we still don’t know a huge amount about. How can I write this book without making the work sound ‘fluffy’ or ‘weird’. These are the simple, but scary, words that came to me. I know MFR is not ‘fluffy’ or ‘weird’ far from it, but I wanted to make sure that I didn’t undermine the credibility of John’s work and the amazing therapist he has taught with whom I have had the pleasure of working with.
I eventually just knuckled down and worked my way diligently through the chapters, followed John’s recommendations and my editors suggestions and finally wrote just over 67,500 words. With great relief, the final edit was sent to the publisher at the end of July 2012, headache over! Thankfully there were not too many re-write, just re-organisation of some paragraphs and chapters, but in general the chapters really did flow quite well.
A Hands On Guide to Myofascial Release by Ruth Duncan
Next came the charts and the photographs. I was asked by the publisher to have photo models of cultural diversity!
We had over 80 photos at different camera angles to shoot in late September 2013 and we had them so well organised we got congratulated by the photographers and the publishers. With Inspector Currie (another MFR therapist and friend) organising, we were a sleek team that day to be sure with no re-rakes at all! Well, we have been taking technique photographs for the workshop manuals for over 10 years now, so that was not new for us
Eventually, the last deadline was over and then everything went quiet as my work was done. It was just the waiting for the publication. I was really fortunate that I managed to get 50 early copies of my book to launch it at the British Fascia Symposium in Windsor in May 2014 which sold in about 15 minutes.
The book is now available on the Human Kinetics website and on ours.
http://www.myofascialrelease.co.uk/product/hand-guide-myofascial-release-ruth-duncan/
http://www.humankinetics.com/products/all-products/myofascial-release
Ruth winning the Outstanding Achievement Award for the Industry for 2014 at Camexpo trade show Olympia London. Julie, Ruth, Karen and Linda
Whilst the book is written predominantly for therapists wishing to learn or increase their skills in MFR, to learn the skill and develop your touch is always better to do so from both receiving treatment and by attending a workshop. Another of my scary things - how can I write a book about MFR when I know to really feel the work, understand it and value it, you must learn by feeling it by both receiving and giving?. Yet I wrote the book as I know it’s a fantastic resource and a great way to get you started on your journey into MFR.
For those who are reading this and who are not therapists, can the book help you? I think so. It can show you what to expect in a treatment session and you will know what the techniques are and how they work and what things make them more effective.
So, now that it’s all over - would I write another, possibly. I have no idea what on, but yet, I think I would do it again.
www.myofascialrelease.co.uk. MFR workshops for healthcare professionals
www.thenaturaltherapycentre.co.uk. MFR treatment sessions.
