Monday 8 February 2010

LYME DISEASE IN THE TIMES

At last we have an article in The Times Newspaper on Lyme Disease. It is quite a good article written by a journalist about his experience with Cervical Myelopathy and Lyme Disease.

I am pleased to see he talks about Under Our Skin Documentary film it is time our UK media paid attention to this very important documentary and of course the controversy over the diagnosis of Lyme disease which is leaving so many thousands of patients the World over without diagnosis and without treatment that can help them.

I spent years with Arthritis and muscle weakness and was diagnosed with Fibromyalgia, ME/CFS, Poly Myalgia Rheumatica only to find that it was Lyme Disease and on long term antibiotics have my health and my life back.

I wish Alex well with his treatment, he had an EM rash for 7 months! and still several doctors failed to diagnose and he found his own diagnosis through the internet, clearly his case has been complicated by his spinal surgery, but then whose Chronic Lyme Disease case is not complex.

I do hope all you Lyme patients leave a comment on this article as I understand from Alex that he may well do a follow up once he has time to do some research and the more reaction he gets on line to the article the greater his chances of a follow up article.

I started this blog because of my frustrations with the media in the UK failing to cover the controversy about Lyme Disease. I posted about this Lyme Disease in the UK

However I would like to say a thank you to Alex and despite what I say in my article above on Lyme Disease in the UK, I am truly sorry for what he is going through. Those of us who have experienced Chronic Lyme Disease would not wish this illness on another person. That is why we try so hard to spread awareness, when we could just move on and get on with our lives, leaving innocent people and children to suffer because of ignorance.

5 comments:

  1. Joanne

    It was great to see such a decent article in the national press. It is incredibly difficult to get this beastly illness recognised and I am sure that this will help.

    Like you I too feel great sympathy for Alex finding himself in this predicament.

    EM rashes are funny things. Alex has had one for months on end. My daughter never had one, but nine years after becoming ill and whilst she was being treated with IV antibiotics she produced a textbook EM rash on her leg.

    I think your Lyme blog is fantastic. I can't get over the fact that you are getting such a lot of hits. If this was really such a minority subject there wouldn't be so many people wanting to read your fascinating blog.

    Keep up your amazing work.

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  2. Great to see more coverage on Lyme Disease. An EM rash is such a classic sign of active Lyme infections, yet so many doctors don't seem to recognise this or understand how complex it is to treat Lyme once the window of the first few post-bite weeks has been missed. My Lyme Disease wasn't recognised at all by the health service and, like Alex, I began to research my wide range of peculiar and debilitating symptoms myself. It's devastating to lose your health and strength to an infection that could have been cured quite easily if it had been picked up straight away and treated vigorously enough. This is an excellent blog Joanne - many thanks for the effort you're putting in to spread the word.

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  3. Thanks Joanne, lets hope someone finally sits up and takes notice. Lyme does seem to get occasional coverage in the press now but then no-one ever seems to pick it up and run with it. I hope this is the one that does it!

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  4. Dear Joanne, I applaud your devotion to getting the truth out there concerning the misdiagnosis and therefore mistreatment of this devastating disease. As more awareness is raised, perhaps doctors and the medical establishment will take the blinders off and actually help people suffering from it. Keep up the effort, we are behind you 100%.
    Frances

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  5. Thank you all for your comments especially Fairegarden it is nice to have support from my garden blogger friends and several have encouraged me.

    For any Lyme patients who follow this blog and are in need of a bit of chearing up do pop over to Francis blog by clicking on her name. The photos she posts are such a visual treat and the posts she writes so interesting to read.

    Visiting such lovely garden blogs help to counteract my frustration with the medical world for not taking Lyme Disease more seriously.

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