Stella Huyshe-Shires
In the UK we have a situation that is probably very similar to that in Norway.
• patients with negative blood tests are told they cannot have Lyme disease
• patients with Lyme disease are told that 28 days antibiotics is adequate
• doctors are told that patients read misinformation on the internet
• doctors do not have the time to do their own research and they believe the nationally responsible organisation – in our case the Health Protection Agency (HPA)
• the HPA believes the IDSA
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The final report of the IDSA Lyme disease review panel was a huge disappointment to all of us, but there are shafts of light in the gloom. The IDSA press release says «Guidelines Upheld» – well, they would, wouldn’t they! But the real truth is that the panel recommended some changes. However, for reasons known only to themselves, they recommended that these changes be made only when the guidelines are next updated – not now. How the panel members squared this with their own consciences, I do not know.
The important points to note are:
1. A recommendation to drop the insistence on a positive laboratory test when a patient has clear Lyme disease symptoms in an endemic area.
2. An acknowledgement that there is some evidence for continuing infection after standard treatment.
The review panel also mentioned «the well established microbiological and clinical distinctions in Lyme borreliosis» between Europe and North America. So far, our UK doctors are not being told any of this.
In order to reduce visible dependence on IDSA, our HPA now has on its website links to other European guidelines (Denmark, France, Germany, Netherlands, Slovenia, Switzerland) (see http://tinyurl.com/32fvx6f). The facts that several European societies support IDSA guidelines, does not make them right: once upon a time peer reviewed journals across Europe refused to publish evidence that the earth went round the sun!
Our task in the UK is to convince doctors and members of parliament that patients do sometimes have sense and knowledge and that scientific evidence is on our side. It is an uphill struggle to make the authorities believe us but we believe that we may be getting there. I hope that over-optimism is not an unrecognised symptom of Lyme disease!
To read our short review of the final report see our website www.LymeDiseaseAction.org.uk/releases/lda_40.htm
Stella Huyshe-Shires
Chairman Lyme Disease Action
NLBF does not necessarily endorse the opinions expressed in this article; and the author of this article does not necessarily endorse NBLF’s points of view.{jcomments on}
