Thursday, 9 July 2009

LIME FOR LYME

These beautiful lime coloured Begonias seen at Hampton Court RHS show yesterday have inspired me to write this post, something everyone, but particularly gardeners and especially journalists should know.

The Infectious Diseases Society of America’s new Lyme disease guidelines review panel will hold a one day hearing on July 30 2009. This hearing is part of the antitrust settlement that the Connecticut Attorney General negotiated. On May 1st of 2008 the Att. General announced this review, after investigations of the previous panel members had found significant conflicts of interest financial in Insurance,Vaccine production and research. They were found to have excluded members from the board who had a divergent point of view and had excluded research articles that had a different view whilst supporting their view by their own research.

It's an unprecedented action - the first time a medical society has been investigated and forced to re-examine its guidelines.

These guidelines are considered authoritative in countries throughout Europe including of course UK, also Canada as well as America. Although as their name suggests they are GUIDELINES they have been used to refuse patients treatment and to take disciplinary action against doctors who choose to treat following alternative guidelines.

Alternative Guidelines are those written by International Lyme and Associated diseases. They believe that Lyme is not rare, is not simple to cure for many people, ongoing symptoms can be indicative of ongoing infection and that blood tests are unreliable. They have a considerable body of research that supports their opinions which are being ignored by IDSA.

Sadly the new review board was convened with members from the IDSA and excluded any doctor treating patients following ILADS guidelines so already there is a bias, including one member an ex president of IDSA who has already spoken out publicly against ILADS and in support of IDSA guidelines, before even looking at the evidence.

There have already been many representations made to the review board from 43 charities plus ILADS, Canada, a German speciality clinic and UK Lyme disease Action Charity, that I am aware of.

In America 5 States have now passed legislation to protect their doctors, if they choose to treat differently than IDSA guidelines. A bill is hoping to be presented at Congress this year. In the UK many politicians have been supporting the charity Lyme Disease Action and asking questions in Parliament and writing to Health Secretary but each time they defer to the 'expert' at HPA who has written research with 2006 IDSA guidelines panel members and refuses to open her mind to the research supporting ILADS guidelines.

Willy Burgdorfer the man who discovered the organism to be of bacteriological origin is quoted 'The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing Serology has to be started from scratch with people who don't know beforehand the results of their research.'

Research has found Borrelia (Lyme Disease) to be as complex as TB and Leprosy and therefore difficult to treat in it's later stages. It is a spyrochaetal organism similar but far more complex than syphilis and so like syphilis can affect every system and organ in the body, thus presenting with a multiple of symptoms, Arthritis, muscle weakness, neurological, heart block, meningitis, psychiatric the list is endless.

One video link I watched from some years ago said that 3 Lyme doctors in USA had between them treated 50000 patients. That number will be multiplied many times now. Dr Jones has treated 14000 children from every state in America and every country in Europe. I am in touch through Eurolyme with 2036 patients struggling with their health and treatment mainly from UK but also from every country in Europe.

At Lyme Disease Action conference last year I listened to Dr Bransfield a psychiatrist who has treated many patients with Lyme Disease, recently he and Dr Jones have been finding that some children with Autism have been found to have Lyme and with treatment their symptoms improve.
Dr Alan Macdonald a pathologist found borrelia in the umbilical chord and fetus and there is evidence to support that it can be passed like syphilis to the unborn child even when the mother may have a sub clinical infection.
Dr Macdonald also found DNA for borrelia in the Hypercampus of 7 out of 10 Alzheimer's brains.
Dr Judith Miklossy has done considerable research and has also found DNA in the Hypercampus of brains. She has found spirochetes in blood CNS and brains of every single one of 14 Alzheimer's patients on autopsy but not one of 16 control study. She believes that treatment by antibiotics can significantly relieve symptoms of Alzheimer's in many patients.
CDC have recently acknowledged that Lyme Disease is of epidemic proportions and has been meeting with many of the Lyme Charity Representatives. The actual figure is considered to be 10x those from confirmed serological tests. In UK HPA figures last year were c800 so multiply that by 10 and then realise many of us suffer ten, twenty years of illness before diagnosis and successful treatment, you quickly start to realise it is a far greater problem in UK than is acknowledged by our NHS.
Dr Jemsek a Lyme Doctor in USA, interviewed recently says that out of the top twenty illnesses only 2 have a known cause H.Pylori causing stomach ulcers ( how many people underwent unnecessary surgery before it was realised that it was a bacterial infection) and HIV. Dr Jemsek was at the forefront treating AIDS victims long before it was accepted world wide as an illness. He likens the denial of Lyme to the problems he faced in the early days of treating AIDS patients. Lyme is of far greater incidence than the case numbers of AIDS and West Nile virus added together according to CDC figures.

Much of the above can be substantiated through links on the top right of my blog but I would be more than happy to find further information if required.

Not only are people going undiagnosed and untreated but most importantly children are the most vulnerable. See on my blog role Lewis Jeynes sad decline into such terrible debilitating ill health from a healthy two year old toddling around. After three years of decline his family has finally had tests done in Germany that confirm he has Lyme Disease, now they have to struggle to get NHS treatment and may even have to go privately because of IDSA discredited guidelines which are being treated as mandatory still throughout the World.

The documentary film Under our Skin is amazing, what might to the uninitiated seem over dramatic, to those of us who have suffered the devastating effects of Lyme and in my case overcome them, I can assure you it is an accurate portrayal. The trailer and many other clips can be seen on their website. The Film is currently touring cinema's in the States and is very well worth watching, even if you never have connections to anyone with Lyme you should see what is happening to your fellow citizens and with your Health care system. One day I would like to see it aired on National television and cinemas in UK.

I have only read one Journalist's work who has in any way got into this controversy Pam Weintraube, again links on the right of my blog. Pam was a science journalist and herself husband and two boys suffered many years of debilitating illness before being diagnosed and treated. She used her skills as a science journalist to interview researchers and doctors as well as patients and patient advocacy groups. Her book Cure Unknown is mind blowing, her articles in Psychology today of which there are many, need to be aired in every National newspaper and not just in USA but especially in UK and also Canada.

One doctor whose young son had been seriously ill with Lyme Disease recently said to me 'It is a medical disgrace', other doctors believe that it will eventually have significant impact on the treatment of many illnesses.