Looking for people who have experienced Lyme disease

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Dear all,

I work at the BBC, and we are looking at producing a short film exploring the dangers of tick bites, and the need for a rapid diagnosis of Lyme disease. However, we would love to get in contact with someone who has now been positively diagnosed, but has been a chronic sufferer for some time and origionally may have struggled to put a name to the symptoms that they were experiencing. Your help and discussion with us of your experiences would aid us in bringing this disease to public attention, which i'm sure you agree would be a worthy cause.

If you think that you could help us in this, then please reply,

Elizabeth Ford

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5 Replies

  • Posted

    Hi Elizabeth

    Please could you register with the forum so that anyone interested in taking part are able to provide you with their details by Private Message (PM) or e-mail.

    Patient Admin Team

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  • Posted

    I am delighted to hear you are doing something to bring this into the media. There is so much information.

    I have been sick 5 1/2 years the first two arthritis symptoms that varied. The last 3 1/2 years I have sufferred debilitating arthritis and muscle weakness. Seen several Doctors 3 rheumatologists had a variety of diagnosis strained hips, Poly Myalgia Rheumatica, ME/CFS. GP considered Lyme Disease after improvement in symptoms when put on antibiotics for chest infection. Several patients had presented with EM rash some with positive NHS tests. Blood test are unreliable and my NHS tests came back negative as to be expected after a year of steroids and some months of antibiotics. GP continued to treat me on antibiotics inspite of HPA advise and eventually I saw a specialist privately. I am at last getting my health back no pain or debility in fact life is a joy. 5 1/2 years of pain and sufferring could have been avoided with a simple course of antibiotics taken at the time of the bite or rash.

    HPA follow IDSA guidelines these are being reviewed following legal action against several of the authors for financial interests in Insurance, Vaccine production and research. I found my private Dr through charity website lymediseaseaction he may even be happy to give you an interview. Look at trailer of Under our Skin try U Tube. I have DVD and it is amazing the controversay going on. Read Pam Weintraube's book Cure Unknown as a science journalist she really gets to the route of the controversay.

    My MP Shadow Health Secretary and several other MP's are very interested in what is going on. I have made contact with several other people in Guildford area who have been diagnosed all with differring symptoms. Like Syphillis it can affect every system in the body and so present similar to many other illnesses no wonder our doctors following HPA advise have difficulty diagnosing and treating patients. I am lucky but lots of patients I talk with on Eurolyme have more serious problems than me. My biggest concern is for children who will contract it more easily playing in the grass.

    Good luck looking forward to seeing your program see if you can get an extract from DVD played.

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  • Posted

    I have just found this site and realise that Elizabeth Ford wrote in July and my reply may be too late.

    However, is it possible to get in touch with Elizabeth of the BBC regarding Lyme disease.

    I have had Lyme for 13 years but was not diagnosed until 2006. So from 1995 (recorded tick bite) to 2006 I had been told I had MS which was diagnosed in 2001

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  • Posted

    well i am a lyme suffere who has been misdiagnosed for 20+years .

    i can now say that i have personal proof of lymes from the 50 odd photos of the ,outward results of the condition taken with my own microscope camera .

    if you want i will suppy you with copies of all the stages of ticks within my body .

    my doctors still refuse to aknowledge lyme.

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  • Posted

    i have already sent e/mails direct to you with photos taken at 2-500x of the rash and red spot sites on my body ,

    if your really interested then contact me direct .

    mr rs hughes

    ****

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