AWARENESS IN THE MEDIA

An excellent article where the Daily Mail raises awareness of Lyme disease read here

Stella Huyshe-Shires, chair of the charity Lyme Disease Action: 'The risk of Lyme disease - which can cause fever and dizziness, bladder problems and fatigue - is increasing everywhere in the world. The bacteria which causes this awful disease is carried in ticks - in their saliva. 'So I travel with a tick remover - a small hooked device that works by gently lifting and twisting the tick out of the skin without pressure.' (Tick remover, £4.99, lymediseaseaction.org.uk)

My response
All excellent advice.
Stella I wish I had read your advice years ago.

I did not know that Lyme Disease could be caught in the UK I had thought it unique to USA. It took 5 doctors and 3 rheumatologists 4 years to diagnose me.

I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Musculo Skeletal Disease, Polymyalgia Rheumatica as my symptoms deteriorated and then a chance course of antibiotics led GP to suspect Lyme Disease.

Following ILADS guidelines on long term antibiotics I have my health and my life back.

Where is the awareness?

When my MP Anne Milton wrote to ask HPA that question a couple of years ago the reply came back that they had updated their website!! What use is that if there is no public awareness.

Where I live in Guildford I am in touch with 23 people diagnosed with Chronic Lyme disease the latest case like me was diagnosed with PMR and then Parkinson's last Christmas he has now tested positive for Lyme Disease and already responding to antibiotics.

A terrible quote from the IrishTimes can be seen here

'Thanks to all of you who responded to the column on ticks and Lyme disease some weeks back. One reader told me of an effective way to remove ticks from the skin, courtesy of her father who survived the trenches of the first World War. Light a match and blow it out. Apply the still hot head of the match to the protruding tick, which will promptly withdraw its head from under the skin'.

My response by e mail to the newspaper.

I take great exception to the flippant and misleading comment in your recent article. You do your public a gross mis service with this comment. Your original article was reasonably written and you did quote ' Dr Paul McKeown, of the Health Protection Surveillance Centre. “The entire tick, including any mouthparts which might break off, should be removed with a tweezers by gripping it close to the skin.' which is currently the correct advice following over 19000 research articles on Borrelia infection clearly not known by the soldiers in the trenches during the first World War.

By shocking the tick in any way either by heat, Vaseline, or grabbing the tick, risks the tick regurgitating it's stomach contents into you, if it is infected.

As well as Borrelia there are many other infections a tick can carry including Bartonella, Babesia, Ehrlichia, Anaplasma, Mycoplasma and others most of which can cause serious health problems alongside a Borrelia infection although rarely tested for in the chronically sick patient by our Health Authorities.

You have barely scratched the surface of the problems for patients who contract these tick borne diseases, please write something to contradict your latest error of judgment at the very least.

I am in touch with a number of patients from Ireland with Chronic ill health following a tick bite some travel to USA to see World experts in this field.

This is a link to a blog I follow which is trying to get the Health Authorities to take note of the problems http://ticktalkireland.files.wordpress.com/2010/08/stats-analysis-lyme-ireland.pdfhttp://ticktalkireland.files.wordpress.com/2010/08/stats-analysis-lyme-ireland.pdf

I was sent this link from a Canadian Lyme patient who was infected in Ireland
http://www.ncbi.nlm.nih.gov/pubmed/9360424
'Data of Lyme disease seroprevalence has been established in European patients or at-risk populations and in blood donors or control subjects'. 'The range of antibodies to B. burgdorferi in blood donors or control subjects shows the highest spikes in Ireland 15%'

This is also mentioned on Tick talk Ireland.

I have long been critical of our Media in the UK for their lack of wanting to get involved in the controversy surrounding diagnosis, blood tests and treating of Lyme Disease, but I can not forgive them their lack of at least wanting to raise awareness amongst the general public, I was pleasantly surprised at your original article but hope you do something to rectify your latest misleading quote.

I live in Guildford Surrey and have suffered from Lyme disease since 2003 it took 5 doctors and 3 rheumatologists 4 years to diagnose me. My GP suspected Lyme Disease after a chance course of antibiotics improved my symptoms although I had attended surgery at times of bites, bulls eye rashes summer flu' and migrating arthralgias.

As my symptoms deteriorated I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Musculo Skeletal Disease, Polymyalgia Rheumatica and finally Lyme Disease. I was retired early from the Civil Service on Ill health grounds, at my worst I had difficulty standing and walking across a room and could not walk up or down stairs properly for 3 1/2 years now after long term antibiotics following alternative guidelines by International Lyme and Associated Diseases society rather than the restrictive HPA/IDSA guidelines I am recovered, I have no pain, no disability and can garden and cycle again.

My experience is like so many others whose doctors fail to catch this awful disease at the time of the tick bite when it is so easily treated although on a longer and higher course of antibiotics than NHS would give, as several patients have found to their cost. My local surgery is now treating a number of patients in the early stages of tick bite but also several others whose illness has become chronic like mine.

I now know of 23 patients in the Guildford area with Chronic Lyme Disease the latest case like me was diagnosed with PMR and then Parkinson's last Christmas he has now tested positive for Lyme Disease and on antibiotics his symptoms are improving.

There is so much more that our media could do to help raise awareness of this emerging disease but also bring into the open the controversy that surrounds this illness the best place to start your education would be by reading some of the information on www.lymediseaseaction.org.uk website

There are an increasing number of doctors and consultants now in the UK supporting ILADS way of treating, some because they or their family member have become infected and they have had to travel to the USA to see the expert Lyme Doctors.

'Of course, you can never replace the value of talking with patients.' It is the listening to patients that our doctors have lost the art of.

My greatest concern is for the children who are the most vulnerable and the hardest to get adequate treatment for, if you read some of the e mails I have had from parents of children with Chronic Lyme Disease it would break your heart.
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So much more needs to be done and the media could do so much more to raise public awareness and save countless people from this awful disease.