Thursday, 28 January 2010


It is sad to read in the news about Lynn Gilderdale's diary, but sadder still to know that so many people suffer oblivious to what has caused their suffering.

One of my aims with this blog is to get the message out that many patients like myself could have an underlying infectious cause to their ME/CFS . The news about XMRV retrovirus is amazing and of significance but in my case like many more my ME/CFS was found to be Lyme Disease and on long term antibiotics I have recovered 100%.

I am so disappointed that our Health Protection Agency does not do more to raise awareness of Lyme Disease in the UK. In a recent article written by Dr Sue O'Connell and published last year she says:- Prevention measures focus on tick and disease awareness, avoidance of tick-infested areas where possible, use of insect repellents, frequent skin inspections for attached ticks, particularly at the end of the day, as early removal minimizes the risk of infection transmission. Yet when my MP Anne Milton wrote to the Health Secretary asking about raising awareness, the reply was that the HPA had updated their website with information.

What we need is public awareness especially in areas where we walk but other than a very few areas there is hardly any public awareness.

If we do not know we can catch Lyme disease in the UK from a tick bite why in blazes would we even think to look at HPA website. Not even our doctors are properly aware, even when presented with tick bites, bulls eye rashes, summer flu' and migrating arthralgias.

I thought the following interesting it was quoted in the Sperling research article which I posted about recently but which also came up on the Calda blog http://www.lymedise lymepolicywonk/ 327.html

http://www.publiche althjrnl. com/article/ S0033-3506(03)00067-2/ abstractVolume 117, Issue 4, Pages 264-273 (July 2003)

Lyme disease—what is the cost for Scotland?A.W.L. Jossa, M.M. Davidsona, D.O. Ho-Yena, A. Ludbrookb Received 28 January 2002; received in revised form 29 August 2002; accepted 9 September 2002.

Abstract This paper analyses likely Lyme disease costs incurred by patients tested in the authors' laboratory over an 18 month period, based on patient histories and test results relating to 2110 samples submitted from laboratories serving 59% of the Scottish population. Cost analysis takes account of the direct costs of consultation, laboratory tests, antibiotic treatment and management of any sequelae, as well as indirect costs of the loss of healthy time through illness. Standard costs for each element are derived from published information, and the proportions applied to each patient category are estimated from studies described elsewhere in the literature. Of the sample, 295 patients had evidence of early Lyme disease and 31 had late Lyme disease symptoms. Based on these figures, the total annual cost for Lyme disease, when projected to the whole of Scotland, is estimated to be significant at £331,000 (range £47,000–615,000). The range is inevitably wide because it was not possible to document complete clinical and management histories on individual patients. In addition, some late Lyme disease sequelae will require management for more than 1 year, and costs are also identified that could justifiably be included for all the other patients who tested negative for Lyme disease. These data raise the question of whether there is sufficient focus on prevention and the best management of this disease.


  1. Hi there, really interested in your information-thank you. I have been very unwell with CFS/ME for four years and just had a lyme test-western blot- done which has come back equivocally positive and I am now very confused! Just wondering-and hoping you don't mind me asking-what tests did you have done for diagnosis, and do you know what tests the Southampton Lyme unit uses? Many thanks

  2. Hi I am sorry to hear of your health problems.
    I was negative with my tests NHS and IgeneX but then the 20 months of steroids and many months of antibiotics could have skewed the results.
    I was diagnosed clinically by a LLMD, Lyme literate medical doctor. I clearly responded to antibiotics and both GP and LLMD were happy to continue with my treatment, even though GP was advised by HPA to stop antibiotics.

    There is much to learn about Lyme Disease and the controversy and the best place for you to look in the UK is and join Eurolyme even if at present it is only a possibility. Links on the right of my blog.

    There are Lyme Doctors in USA who say that if a patient only has one or two bands on the Western blot ie negative by NHS/CDC standard they find patients respond to antibiotics.

    Trinity Biotech who make the test kits used by NHS say that even a negative result can not exclude lyme Disease see link on the right of my blog Makers of test kits--

    With Lyme it is very important to be proactive and get to know what is going on, good luck, but I would especially recommend you join Eurolyme and ask questions there as there are many people far more knowledgeable than I am about Lyme Disease and 75% of them were previously diagnosed with ME/CFS.

  3. Joanne

    It's great to see that this blog is being picked up by those with an ME/CFS diagnosis.

    Good luck to the person who commented in moving forward with her life.

    With a little good fortune she will get her life back, just as you did and my daughter.

    My biggest bit of advice to her is to do loads of research and as you say joining Eurolyme would be a good thing as there is such a lot of information that those who have been through something similar can share.

    Well done again!!