IVE HAD A POSSITIVE RESULT ON EXTENDED LYMES PANEL

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I finaly got my results from porton down (bloods 1st sent to lab 26/1/16) after several mistakes ( going no further than local lab,then lost in post on route to porton down) lymes disease action have emailed me to let me know my extended lymes panel showed a possitive result which shows the basic ELISA test is not enough to give a correct result as ive had 2x negative results. hopefuly now i will see a specialist and get the correct treatment -vicky

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9 Replies

  • Posted

    Vicky,

    Well done for your persitence. Now you have a formal positive result, you cannot be denied treatment by your GP. I wish you well in your recovery.

    Caroline x

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    • Posted

      thanks for your reply and continued support, its not going to be easy with my GP even though it was possitive ( co infection) i did come out of the surgery questioning if it is lymes after discusing the results with her. I suppose after so long being told theres nothing wrong you end up douting yourself in the end-vicky
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  • Posted

    Hi ,

    Vicky this is great news ! Not that you have Lyme because it's awful but that you have an answer now ,hopefully now I will hear about your road to recovery hun , this is a step in the right direction and it's about bloody time , surely your GP can't ignore you now !!

    All the best

    Kelly

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    • Posted

      hi kelly, it is good news although like you say an awful illness thats hard to treat. my GP is waiting for the letter from lymes action and asked ME to find a infectious diseases specialist who has an interest in lymes in the north of england. still dont think this is going to be straightforward with my surgery-vicky
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  • Posted

    Is it hard for you in the UK to see a doctor, explain that you think you have lymes and get him to write you out a script for doxy just to be on the safe side?
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  • Posted

    Hey Vicky. Congratulations on getting a positive result. Truly a rare thing on the NHS. Can I ask how long you've been unwell? I have lyme and coudn't get IV antibiotics through my GP so ended up going to a private clinic in London.
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    • Posted

      hi it took alot of pushing to get the extended lymes panel tested by NHS but finaly paid off. I think ive had this since 2012. Lymes was mentioned 2014 but because i had negative ELISIA test GPs wouldnt consider the possibility it could be lymes and thought it would have somehow shown up on other test? when i think of all the money the NHS have spent on testing me under 14 different specialist not to mention 100s of trips to my GP with every symptom of lymes the NHS really do need to change there approach to this
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  • Posted

    So glad for you Vicky. I've been following your thread. It's 2 months on now and how are things ? Did the specialist/ antibiotics help at all. Has anything changed?

    I wish you all the very best. This is a truly dredaful disease.

    Good Luck!

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  • Posted

    Hello. Did you get a private blood test if so how did you find where to go? My husband has a lot of the symptom and has had negative blood test results but he isn't happy about it. His always sick everyday. he is also a keen fisherman on lakes and canals. So he is likely to get bitten by a tic. We live in Kent but I can't seem to find a private clinic for blood testing.

    How long did you have to wait to get the test? The last one he had was NHS not good Dr didn't seem to take it seriously. 

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