Thursday, 11 February 2010


The Dutch Lyme disease association has submitted a petition of 65,000 names to parliament, enough to make sure the issue gets debated under citizen's initiative legislation.

The above was in the Dutch

The association estimates up to 500,000 people may have the illness in one form or another.
Following on from my post yesterday I see that Radio Netherlands also announces the news.

Details can also be found on the CALDA news.

I wish the Dutch every success.

Here in the UK there have been E petitions to Government and lobbying details can be found on Lyme Disease Action website however an interesting point made by Oliver Letwin can be read on his website. Oliver Letwin is very supportive of charity Lyme Disease Action but he goes on to say '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.'

However by no means let that put you off the lobbying process because for now we still need to be heard.

I read a very interesting post by Lyme MD recently in which he talks about the numbers of patients with Lyme disease who then go on to suffer a variety of symptoms many chronic symptoms and yet these patients are turned away by doctor after doctor sometimes rudely and often refused any treatment.

He raises the very valid question as to why even if those doctors prefer to follow IDSA guidelines rather than ILADS guidelines, do they turn them away, why not at the least treat them with the usual medicines that are standard for reducing the symptoms complained about. Of course Lyme MD says it so much better than I can and so follow the link to his comments here.

My symptoms of Arthritis, Muscle Weakness, Fibromyalgia, ME/CFS and some Neurological symptoms, Neuralga, tingling and muscle twitching, swallowing difficulties being the scarriest, were all resolved on long term antibiotic treatment once my GP suspected Lyme Disease and the evidence of tick bites, Bulls eye rashes, summer flu' and migrating arthralgias were all documented on her computer from the 5 doctors and 3 Rheumatologists I had previously seen. How fortunate I was in having such a thinking doctor who was able to work things out, but then had the first locum doctor I saw with EM rashes figured things out I could have had a simple course of antibiotics and may have avoided 6 1/2 years ill health.

Raising awareness is the key to protect people and yet when my MP asked the Health Secretary about raising awareness the response was that the HPA had updated their website! How does that help so many people who like me didn't know you could get Lyme here in the UK or the consequences of being infected? How does that help doctors who are taught that it is so rare that many never even consider it as a differential diagnosis and some even say you can't get Lyme in the UK? (When clearly HPA records show that Lyme can be caught throughout the UK).

Whether you support IDSA view or ILADS view why are our Health Authorities not helping raise awareness so that we can a. protect ourselves and b. seek medical advice at the time of the bite and/or rash?

What is all this denial really about when both parties agree Lyme Disease can lead to ongoing chronic symptoms avoidable by a simple course of antibiotics in the early weeks of infection?

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