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Thread: Lyme Disease

  1. #131
    Master Stolly's Avatar
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    Quote Originally Posted by Hanneke View Post
    Hate to say this Hes, but my thoughts for both Stolly and you were a reaction to an infection with Lyme and/or one of its co-infectiosn.

    As you know it caused an aggressive reactive arthritis in my knees and neck. I also have a friend whose main symptom is Lyme carditis and the heart muscle is inflamed from it... very similar to Stolly's issues.

    Testing is very unreliable so negative lyme tests mean nothing. I have had two blood tests and my synovial fluid has been tested as well as a synovium biopsy. All negative. However, I had antibiotics between being bitten and being tested, which messes with the results as well, and after almost 2 years of infection, the body stops producing antibodies as the infection has become systemic.
    Hann, with me and my peri 'effing' carditis, I had the lyme test something like 2.5 months after my pericarditis attack. A Lyme disease blood test after such a time period is thought to be far more reliable (with most of the difficulties in diagnosis occuring with earlier tests) so, although my pericarditis is taking its time in clearing up, I'm as confident as I can be that its not lyme carditis. Although Hester had an early lyme test which showed no disease, she was also immediately put on antibiotics as a precaution so she should be okay either way. And although Hester's knee has been diagnosed as reactive arthritis, and not likely to be down to an injury, its extremely unlikely to be as a reaction to lyme disease. For sure ever since Hester had her steroid injection her knee has improved massively, and she is now out doing some light running

    I think the only thing that had us worried about lyme disease is that we both had reactive inflammations to different bits of our bodies within a relatively close time frame, having both been camping in the ticky bit of Scotland just a little while before.
    Last edited by Stolly; 24-11-2015 at 03:59 PM.

  2. #132
    I'm pleased to hear that you are both on the mend Hes and Stolly - and on the way you have become an official Lyme-ologist!you are right that tHe blood test isn't very accurate in the early stages - 25-40% of infections test negative when the infection is confined to the skin (i.e. just the rash) whereas 80-100% test positive in Lyme carditis.

  3. #133
    Master Hes's Avatar
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    I can totally understand your point of view Hanneke and really appreciate your concern. I did think that it could be Lyme disease but I had no other symptoms. I know you had very debilitating symptoms and so did my mum's partner, who has also had it. I didn't have anything other than the knee problem and the bladder infection immediately before it. Other than that, I was in pretty robust good health and I didn't feel unwell. I'm still waiting for my MRI results but have now got a follow up with the orthopaedic consultant so I'll find out if anything else is going on in my knee.

    It is four and a bit weeks since my steroid injection and my knee still feels settled. I'm running again but only short distances and will build up very slowly. I've almost got the flexibility back too. It feels a bit 'fragile' and I'm treating it with respect!
    'The birds are the keepers of our secrets'

  4. #134
    Master Hes's Avatar
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    That's reassuring about the Lyme test Ghost. I imagine that if the knee problem was to do with Lyme it would have been a later stage of the disease and hopefully I'd have been more likely to test positive if I had it. I never really believed that I had it as I didn't have any other symptoms but you just don't know and I have been bitten by ticks this year. Anyway, fingers crossed I'll continue to improve.

    Quote Originally Posted by ghost View Post
    I'm pleased to hear that you are both on the mend Hes and Stolly - and on the way you have become an official Lyme-ologist!you are right that tHe blood test isn't very accurate in the early stages - 25-40% of infections test negative when the infection is confined to the skin (i.e. just the rash) whereas 80-100% test positive in Lyme carditis.
    'The birds are the keepers of our secrets'

  5. #135
    Master Hes's Avatar
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    MRI results were fine...wooohoooo! The consultant was happy that I'm running again and said just to remember to build things up again gently.
    'The birds are the keepers of our secrets'

  6. #136
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    This all sounds very worrying to a newbie like me ! Has the FRA got a page dealing with how to prevent this ..also a bit concerned reading the post on hypothermia...seems you can catch it even in a suburban setting..
    Hope you get well soon ..sounds awefull.

  7. #137
    Thank you to everyone who has posted here. I have been feeling run down and had aching joints since the relays. Found a tick on Wednesday, resultant trip to doctors and I'm on antibiotics in case it is Lyme Disease. Better to be safe than sorry.

    Caroline P&B

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