I am highly critical of the Media for their lack of coverage on Lyme Disease. I have talked to many journalists about my own symptoms of ME/CFS, Fibromyalgia, Arthritis, Poly Myalgia Rheumatica that eventually turned out to be Lyme Disease but they are dismissive of the need to print articles on what they believe is a rare disease.
Gill Reese and founder of Eurolyme recently posted this from the British Medical Journal.
BMJ 1999;319(7210) :649 (4 September), doi:Personal views
My years with Lyme disease
Chris J F Wilson
I first became unwell in the wake of some students sadly succumbing to the meningococcus. I had non-specific symptoms malaise, fatigue but with the photophobia, headache, and difficulty on my feet they were serious enough to warrant admission to the neurology ward for investigation. The investigations were thorough, but no cause was found. A label of "depression" was hung around my neck I was discharged back into the hands of a less than sympathetic university health service, and it was here that the mysterious spectrum of symptoms that graced my life earned me the title "malingerer, " chiselled deeply into my notes and even deeper into the clinical opinions of all those who saw me thereafter. My aching joints were scrutinised by the rheumatologists. The neurologists put me under the inquisition again, trying to find some explanation for the interminable headache. Ultimately, as is often the case, I was directed to the psychiatrists. A label of "depression" was hung around my neck, and I spent several months at a loose end, my studies on ice, convinced that I was not psychiatrically unwell, yet being swayed increasingly to the point of view that I was somatising. A rather unhelpful faculty of medicine hindered my progress, and for a few years I let my body smoulder away gently, reluctant to grace a doctor's surgery. A constant headache was my shadow, my joints protested, and I had strange things happening to my skin - things I ascribed to a bad mattress, poor posture, worn out running shoes, and a hot bedroom rather than anything else.In the end it was easier to live with the symptoms rather than be ridiculed by those from whom I might seek advice. I learnt to accept the devastating effect that this malady was having on myself but most importantly on others. Constant pain, feeling permanently hung over, being unable to stand properly, and soaking erstwhile sleep partners, courtesy of night sweats, did not augur well for relationships. It seemed odd to me that the first time that a proper history was taken was when we knew the diagnosis. I had seen numerous specialists, but nobody had actually taken a full history; a point I had difficulty reconciling and even greater difficulty putting across. I stumbled over the diagnosis myself just before sitting my finals.Walking one day at Haworth, in a moment of serendipity, it all became rather clear. The topic of conversation was tick borne diseases and a profound dénouement took place. Yes, before becoming unwell I did recall the rather pathognomic skin rash of Erythema chronicum migrans after climbing in Canada and Switzerland. Indeed I recollect the initial lesion very well. Out of curiosity I had mapped out its perimeter as it spread up my leg. All that followed was easy to ascribe in retrospect to the spirochaetes and their passage through my body. When the serology came back I was delighted to find myself with Lyme disease. It was the greatest positive affirmation that I could have wished for. Soon after finals I underwent a rather unpleasant course of chemotherapy and then started in clinical practice. The legacy of a decade of grumbling Lyme disease no doubt debilitated me physically. And the stigmatisation of a label and frank derision by doctors led to a gnawing psychological dimension. Towards those who did not take me seriously I do not feel bitter. I pity them and hope that nobody else falls foul of them. To those at Bradford Royal Infirmary who took me seriously and gave me a chance to flourish I can never extend enough thanks. I extend similar thanks to the communicable disease directorate in Sheffield and to supportive friends. Regarding the effect my illness has had on my own clinical practice, I hope that I can reach the zenith of equanimity and open-minded consultations that I might have benefited from. It was fortuitous to have discovered Lyme disease. I was not on any form of crusade. It was luck that the discussion about Lyme took place and that I happened to be in the right profession. Above all, I am fortunate that its course has been relatively benign. My awareness of Lyme disease pre-dated my discovery by four years or so, and I did ask myself why I did not think of it earlier. It was probably because I was not on a crusade. In any case I doubt if I would have been taken seriously. Rare as Lyme disease is in the United Kingdom, I suppose there must be a small but significant population of those suffering from undiagnosed chronic Lyme disease, and I hope that they have sympathetic general practitioners looking after them. A headache of sorts is my inseparable companion and from time to time reality, just like those ticks in 1987, bites.Chris J F Wilson, surgeon lieutenant.Royal Navyhttp://www.bmj. com/cgi/content/ full/319/ 7210/649
There were many responses to this article but the following caught my attention.
'Need for UK support group 10 September 1999 Paul Wright,Consultant Microbiologist Conquest Hospital, St Leonards on Sea, East Sussex Re: Need for UK support group I read with interest the personal experiences of Chris Wilson and his Lyme disease. Once again he has shown how difficult it can be in the UK to secure this diagnosis and receive the most appropriate advice and support. In August 1996 the "Daily Telegraph" magazine published an article about Lyme disease. At the end of the piece was an offer of a copy of the Association of Medical Microbiologists' leaflet on Lyme disease. Within a month of publication I had recieved over 900 requests for the leaflet. Most requests were from people whose work or leisure activities put them at potential risk of this infection. Many of them had been unaware of the risk until reading the article. A signficant number of requests were also received from patients who told me they, or a close relative, had been diagnosed with Lyme disease but they had been unable to find out anything about the illness. Several reported that their doctor did not believe this infection existed - it was "just one of those fashionable Americian illnesses". There also appeared to be a lot of ignorance amongst doctors about the availability of diagnostic blood test. A frequent theme in the letters I received was the length of time patients had had the symptoms that they attributed to their infection. Accounts of arthralgia, fatigue, malaise, headaches, mood swings, months or even years after the diagnosis had been made, were common. I was left with the impression that in those fortunate patients in whom the diagnosis had been made and the required antibiotic prescribed then their doctor felt that was the end of their responsibility. Many patients were then left to their own devices to find out about,and cope with, their illness. At the time I was frequently asked if I knew of a support group for patients with Lyme disease and their relatives. I did not and to the best of my knowledge that is still the situation in the UK. In 1996 I had enough names and addresses to start up a small patient's group and indeed suggested this to number of them but nothing came of it. I am sure a Lyme disease support would be helpful both for patients and to educate health professionals. I must stress that I have no special expertise in Lyme disease and I did not write the leaflet I have described. I am the Publications Secretary of the Association of Medical Microbiologists and it is my responsibility to distribute the publications of the Association to those who ask for them. The text of this leaflet may be found on the publications page of the Associations website www.amm.co.ukRoutine testing for Lyme disease 15 September 1999'
Now over ten years later we have several support groups, the first being Eurolyme, which Gill Reese says was founded directly as a consequence of reading the comments to that article and with much support from Phyllis Mervine of CALDA - 'without whose advice and encouragement I'd have never got going with Lyme activism here in the UK!' says Gill.
From Eurolyme Gill started the annual conferences on Lyme Disease and through that Lyme disease Action was born. Since, there have been other UK groups such as BADAUK, Tick Talk Ireland and a recent research project Dartmoor Tick Watch to name but a few.
Patients are getting informed, the numbers diagnosed are growing,(including several doctors) and patients are getting better, using long term antibiotics according to ILADS guidelines. But although science has moved on and there is much good research/science that now shows the complexity of Lyme disease and the difficulty to treat, our Health Protection Agency remains in denial of these advancements. So the story of Chris Wilson has a common thread to so many more stories 2200 on Eurolyme, in fact not as rare as Chris suggested.
The ground swell is growing and patients are floundering, is this because of medical neglect caused by our HPA following IDSA guidelines which are so critisised for their discredited Lyme disease Guidelines and now corrupt review processes?
I owe my current good health to a few but ones at the top of my list have to be my GP, Lyme Doctor and Gill Reese.
Perhaps the occasional article in the newspapers has helped a little towards raising awareness of this tragic illness Lyme Disease, what a pity the media haven't yet grasped that this is in fact a bigger story, a medial scandal on a huge scale, greater than that in the early 1980's over the denial of HIV and AIDES.