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Thread: Lyme Disease

  1. #1
    Orange Pony Hanneke's Avatar
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    Lyme Disease

    I am expecting at least one or two of you on here to have suffered with this?

    I have been in a steady decline with ill health and varying symptoms since October 2012. I have seen the GP so many times now, I almost live at the surgery. My blood has been tested for everything under the sun, I have even had an MRI and lumbar puncture as after a lengthy differential diagnosis that lasted a year the GP thought I had MS.

    I have mentioned the possibility of Lyme's to him before but he doesn't seem to want to hear it. I have now forced his hand and he has reluctantly agreed to send some bloods of for testing. However, he is saying I developed symptoms 6 months ago, not a year ago and is also not convinced of putting my whole symptoms package together into one 'disease'

    The blood testing takes 4-6 weeks to come back with a result. I am gradually getting worse and am now starting to fear damage being done is irreversible.

    Does anyone else on here have experience with Lyme's and it being diagnosed about a year after initial infection? What was the treatment and outcome? My GP says that even if I have Lyme's, he can't do anything about it as you can't treat it at this stage. This seems too defeatist to me, especially as in the Netherlands, where I come from, and in the US, where it is much more prevalent, they use long term (1-2 years) antibiotic treatment with success?

    Practically, I am looking for a precedent so I can get the NHS to pull their finger out and get me the treatment I need rather than slowly dying
    “the cause of my pain, was the cause of my cure” Rumi

  2. #2
    Master shaunaneto's Avatar
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    I can't help Han, but good luck and I hope you get through this.
    pies

  3. #3
    Master Feet in the Cowclaps's Avatar
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    I hope you get this sorted as soon as possible.
    There are some examples of people who have had the disease in this thread (e.g. posts #73 and 89).
    Last edited by Feet in the Cowclaps; 13-11-2013 at 10:11 AM.

  4. #4
    Orange Pony Hanneke's Avatar
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    Thanks FITC... I looked at those, not very promising

    I also keep being told: we have no Lyme's here... however, we do and I have ridden my bike for long amounts of time off road all over the country last year, as well as abroad. It is infuriating!
    “the cause of my pain, was the cause of my cure” Rumi

  5. #5
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    I have no direct experience of Lyme's, but if anyone tries to tell you we don't have it here, this is from the NHS website (http://www.nhs.uk/Conditions/lyme-di...roduction.aspx)

    'Public Health England estimates there are 2,000 to 3,000 cases of Lyme disease
    in England and Wales each year, and that about 15%-20% of cases occur while
    people are abroad.'

  6. #6
    Senior Member Mr1470's Avatar
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    I can't speak for the Black Mountains area, but come up to the highlands and you won't have to go far to hear tales of people having had this. I suspect large numbers have nipped it in the bud with antibiotics, but, even in this sparsely populated area, I know of 3 people who have had full-blown Lyme Disease and it's varied from fairly debilitating to severely debilitating.

    I think doctors and hospitals up here are geared up to test for it now. Persevere with your doc. Many years ago, I had a reaction after a hol in Scotland and the doc sent me down to the Tropical Diseases unit in Shropshire, where I lived at the time. Good job - they pumped me full of antibiotics and no further problems.

    Good luck with getting it diagnosed.
    Loving life in the Highlands

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  7. #7
    Orange Pony Hanneke's Avatar
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    Hmmmm, Shropshire, not a million miles away. Maybe I should suggest being referred there by the GP. Thanks Mr1470!
    “the cause of my pain, was the cause of my cure” Rumi

  8. #8
    Master shaunaneto's Avatar
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    I think doctors and hospitals up here are geared up to test for it now. Persevere with your doc. Many years ago, I had a reaction after a hol in Scotland and the doc sent me down to the Tropical Diseases unit in Shropshire, where I lived at the time. Good job - they pumped me full of antibiotics and no further problems.
    I think your right, NHS Tayside at least seem to take it quite seriously.
    pies

  9. #9
    I joined this forum just to reply to your post. Don't mess around with Lyme disease. Your Dr is completely out of touch with how to deal with this. Search 'under our skin' on you tube, watch the film posted by 'Gravitas VOD' . Lyme is a shocking epidemic, whose victims have been sidelined by the war between 2 medical positions. I was a very active runner and bike rider until I was struck by a mystery illness in 2007. 4 years to diagnose means Ive little hope of recovery under the UK system. I can't afford realistic treatment in Germany or the US so I'm just taking drugs to keep it at bay. Tests are unreliable. Read Lyme disease Actions website and the very best of luck. I personally know 2 other runners with it :-(

  10. #10
    Orange Pony Hanneke's Avatar
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    Thank you Modernist, you have mail...

    I found Lyme Disease Action and found it very useful.
    “the cause of my pain, was the cause of my cure” Rumi

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