I am frustrated by the lack of interest our media shows over the controversy about diagnosis and treatment of Lyme Disease, this was my latest attempts at getting the television channels to take note although they are so difficult to find contact details.
In the past I have sent many e mails to all the national newspapers and spoken with reporters from most of them they are disinterested to the point of rudeness. One day they will be all over this like they were when HIV first broke into the news, but sadly people and children will continue to suffer unnecessarily because of lack of good investigative journalism of the calibre of Pam Weintraube ( links on my side bar).
When someone in the media realises that they or their loved ones are ill with Lyme Disease and the scandal that surrounds diagnosis and treatment then the brakes will start to come off.
Meanwhile I will continue to feed them information. Do feel free to comment constructive criticism always welcome.
This is what I sent.
There is much controversy about diagnosis and treatment of Lyme Disease. Our Health Protection Agency follows Infectious Disease Society of America Guidelines. These Guidelines are currently under review and at a presentation in July 09 available at IDSA website http://www.idsociety.org/Content.aspx?id=15026
Presentation number 15. highlights 25 studies on Seronegativity and persistent infection. There is considerable evidence that IDSA/HPA restricted guidelines are causing patients to continue with chronic ill health and be denied treatment that can help them. For many years now in USA doctors specialising in treating Lyme Patients developed ways of treating successfully with controversial long term antibiotics. Alternative Guidelines to IDSA were developed by International Lyme and Associated Disease Society.
UK Charity http://www.lymediseaseaction.org.uk/ has provided much needed support to UK sufferers of Lyme disease. This charity holds annual medical conferences details available on their website. This charity has for some time tried to engage HPA in dialogue to discuss the problems that IDSA/HPA rigid guidelines have caused several thousands of patients here in UK but their work is falling on closed ears.
'MP Oliver Letwin says he gives his full support to this charity on his website he says:- 'It is an interesting and important feature of the scene that, when these medical disputes occur, there is no joy to be had from lobbying ministers – because, no matter how many meetings you hold at Westminster, and no matter how many letters you write, you inevitably just get the answers written for ministers by the Health Protection Agency.'
My own MP Anne Milton Shadow Health Secretary has also been very supportive in trying to raise awareness of this awful disease but sadly her efforts result in the same denial from just a handful of people who advise the HPA, cherry picking science and playing with words to support their OPINIONS.
http://www.lymediseaseaction.org.uk/seminar2008/index.htm Following a meeting held at the House of Commons in November 2008 there were further developments, not as you might expect further discourse (especially as Dr Sue O'Connell from HPA actually said at the meeting 'Not everything is hunky-dory, but we have to work from the best available evidence.') but no the two doctors presenting at that meeting, supporting alternate treatment guidelines that of International Lyme and Associated Disease Society, were reported by Sue O'Connell to the GMC for using unorthodox treatments. Since when was long term antibiotics for complex bacterial infections unorthodox and by whose say so on what evidence? How many other zoonosis are difficult to diagnose and difficult to treat? Not content with shutting down those pioneering doctors who have helped many patients, there has now been issued a letter from the Chief Medical Officer to all our doctors. This is whilst the IDSA are still reviewing all their evidence and still not made their decision, although anyone reading or watching the presentations in July can see that nothing is simple to diagnose or easy to cure with Lyme and both parties agree that if not treated early people often go on to have chronic illness. http://www.lymediseaseaction.org.uk/releases/cmoupdate.pdf The above was a response to CMO from LDA with a link to CMO letter included. I was fortunate that I was treated by my GP but suffered 4 years of chronic arthritis before being diagnosed and was retired early on ill health grounds. For 2 1/2 years I could not walk up or down stairs and was at one point housebound, I am now 100% recovered and can actually cycle again. Quite a miracle but it took many months of simple antibiotics to recover my health, treatment which because of HPA schinanikens is denied most patients. In the USA there is a documentary film doing the circuit Under our skin http://www.underourskin.com/ Take time to watch the trailer and look under press at various other extracts. Seems rather melodramatic but I assure you the same is happening here in the UK. Who ever would have believed it possible! Recently Canadian TV showed the following, make sure you watch both parts.
We have our own list of tragic cases too here in UK, a Widow I know whose husband suffered psychiatric problems in his 70's as well as other Lyme Disease symptoms, diagnosed on NHS but was refused further treatment after the initial short courses. He went into his garden in the middle of the night doused himself with petrol and set fire to it, he died the next day of his injuries. His widow and family believe it was due to his Lyme Disease not adequately being treated.
There are parents of young children also struggling for adequate treatment possibly the saddest being Lewis Jeynes
Finally diagnosed but still medics do not know how best to treat him and although he is on antibiotics privately and made some significant progress his constant seizure spells are very worrying. Will they be able to help him or has it been too late getting his diagnosis?
Borreliosis and Associated Diseases Awareness UK charity produced their own DVD you can see their trailer here.
The following interviews, patients in UK and arguments from both sides.
Or a link to A2Z media site which is a bit slower to access
All the above just scratches the surface of what is considered by those specialising in it's treatment as a formidable bug. Those who advise doctors in UK that it is simple to treat and remaining symptoms you live with, there is no treatment, are wrong for many of us because on adequate treatment we do get better.
I would hope that an in depth documentary would help get to the route of the problems and would if nothing else expose what one doctor I met described as a 'Medical disgrace' her son ill with Lyme disease was taken to America for treatment, but from being in a wheel chair after many months antibiotics is now back at school, playing sport. She is not the only doctor I have met who has travelled to USA for treatment, what hope for those none medical people with restricted finances and now refused by NHS.