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Thread: Lyme Disease

  1. #11
    Senior Member drmorris's Avatar
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    just a teeny word of caution - I am a GP, and have no axe to grind either way; it is extremely difficult to get a robust diagnosis of Lyme Disease unless you were seen early, in an acute infection, with the typical rash. Also good if you got some serology(blood tests for the bug)
    The wikipedia article is pretty good: http://en.wikipedia.org/wiki/Lyme_disease ; I would point out the section that starts 'Chronic Lyme Disease and post-Lyme syndrome' as a balanced discussion of the issues.

    Lyme disease is a disorder which creates divisions between scientists, let alone patients and doctors. There is a huge overlap with the Chronic Lyme Disease patients with other unknown-cause fatigue and medically unexplained syndromes, like ME, Fibromyalgia, Post Viral Fatigue, Systemic Candidosis and Chronic Fatigue Syndrome.

    Some of the 'patient groups' are ... unusually vociferous. Death threats against sceptical doctors are not unheard of. Even in the UK. The advice from their websites etc is very one-sided; the plural of 'anecdote' is not 'data'.
    In some of the chronic fatigue syndromes membership of a patient action group is associated with a worse prognosis; i.e. it takes longer to get better.

    On antibiotics: there is NO evidence that 'long term' antibiotics are of any benefit in Lyme Disease.
    Short term(2-4 weeks) can help in confirmed or suspected early cases, and in some cases of later diagnosis.

    If you did not have a tick, or a typical rash, or a short-lived flu-like illness at onset(even without the rash) you are already very unlikely to have Lyme Disease. It is also not especially prevalent in Wales.
    More likely if were out in n the heather + hills of Exmoor or Scottish Highlands AND remember the onset after a bite having been in that area.

    Your next problem is that the serology is not 100% accurate; a proportion of the healthy population will have antibodies to Lyme; some people with Lyme don't.

    Sorry to be seemingly negative; I am just counselling against looking for a 'hard' diagnosis when it may not be forthcoming. A progmatic approach may be more helpful.
    Discuss with your GP whether a referral to a local Rheumatologist, or Infectious Disease Consultant may be of benefit.

    Good luck
    Best Wishes

    David
    Cheshire Hash House Harriers http://www.cheshirehash.co.uk/cheshire/

  2. #12
    Master
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    Quote Originally Posted by drmorris View Post
    just a teeny word of caution - I am a GP, and have no axe to grind either way; it is extremely difficult to get a robust diagnosis of Lyme Disease unless you were seen early, in an acute infection, with the typical rash. Also good if you got some serology(blood tests for the bug)
    The wikipedia article is pretty good: http://en.wikipedia.org/wiki/Lyme_disease ; I would point out the section that starts 'Chronic Lyme Disease and post-Lyme syndrome' as a balanced discussion of the issues.

    Lyme disease is a disorder which creates divisions between scientists, let alone patients and doctors. There is a huge overlap with the Chronic Lyme Disease patients with other unknown-cause fatigue and medically unexplained syndromes, like ME, Fibromyalgia, Post Viral Fatigue, Systemic Candidosis and Chronic Fatigue Syndrome.

    Some of the 'patient groups' are ... unusually vociferous. Death threats against sceptical doctors are not unheard of. Even in the UK. The advice from their websites etc is very one-sided; the plural of 'anecdote' is not 'data'.
    In some of the chronic fatigue syndromes membership of a patient action group is associated with a worse prognosis; i.e. it takes longer to get better.

    On antibiotics: there is NO evidence that 'long term' antibiotics are of any benefit in Lyme Disease.
    Short term(2-4 weeks) can help in confirmed or suspected early cases, and in some cases of later diagnosis.

    If you did not have a tick, or a typical rash, or a short-lived flu-like illness at onset(even without the rash) you are already very unlikely to have Lyme Disease. It is also not especially prevalent in Wales.
    More likely if were out in n the heather + hills of Exmoor or Scottish Highlands AND remember the onset after a bite having been in that area.

    Your next problem is that the serology is not 100% accurate; a proportion of the healthy population will have antibodies to Lyme; some people with Lyme don't.

    Sorry to be seemingly negative; I am just counselling against looking for a 'hard' diagnosis when it may not be forthcoming. A progmatic approach may be more helpful.
    Discuss with your GP whether a referral to a local Rheumatologist, or Infectious Disease Consultant may be of benefit.

    Good luck
    In my opinion there is a lot of wisdom in this well thought out contribution.

  3. #13
    Orange Pony Hanneke's Avatar
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    Thank you David. Very informative.

    I'd like to add a few more things here. I didn't go into too much detail in my original post.

    I am not criticising my GP, I am just trying to get links, hints, tips to being better informed as to what action to take. It is my rapidly declining health we are talking about. Within the timespan of a year I have gone from a very fit and healthy person who won MTB races on a national and international level to a wreck who can barely walk!

    I have been seeing my GP so much, I have practically moved in and he has been doing his job. We have differentially diagnosed till the cows came home until we got to the likelyhood of Lyme's Disease. Hell, I display 95% of the symptoms on the GP checklist so I am hardly imagining things. No, I did not see a tick, but that doesn't mean there never was one. No I didn't see a rash, again, that doesn't mean there never was one. It could have been under my hair, or on my back. Yes I did have flu like symptoms, but they were put down as just that, flu like symptoms. Not everyone sees a tick when they are bittem. The nymphs are very small and the tick could have come off unnoticed within a layer of mud scraped off my legs after a 12 or even 24 hour race... Not everyone with Lyme's gets a rash either.

    I am aware the serology isn't accurate. A positive test doesn't mean active Lyme's as one tests for antibodies, depending on the test protocol used. A negative test doesn't necessarily mean I don't or can't have it either, but it is the step my GP decided to take first and I respect that and am grateful for it. Once the test comes back, he said he'd refer me to a specialist in infectious diseases, as he is out of his depth. In the meantime, as test results take 4-6 weeks to come back, I want to gather as much information as I can to be as best informed as I can be. Frankly, I could cope with the pain and lack of sleep and other symptoms, however the recent neurological symptoms scare the shit out of me and my GP!

    I am not a member of patient groups. I prefer to do my own independent research and am not easily lead.I have avoided looking at forumes etc because I prefer a nuanced, informed opinion. Reason why I asked for experiences on here, as I was hoping to get some good advice from those with personal experience of the condition and its progress/treatment. I was right, I have had some very useful private messages.

    I know from facts there is Lyme's here in the Black Mountains, where I live. I would also like to point out that I have ridden and raced my bike all over the country and abroad, including the whole of Wales, Scotland, the Lake District, Exmoor, Dartmoor,Hampshire, Peak District, Yorkshire, Shropshire and the Isle of Man. Chances are I picked up a tick at least once. I rode on average 15 hours a week, racing and training...

    I am also aware Lyme's is largely undiagnosed or mis-diagnosed, so statistics aren't realistic and it is much more prevalent than most people, including healt care professionals, think.

    I don't think you are being negative, you are realistic and painting the picture of what the health care system has to offer. Which, sadly, doesn't seem to be an awful lot
    Last edited by Hanneke; 14-11-2013 at 09:47 PM.
    “the cause of my pain, was the cause of my cure” Rumi

  4. #14
    Senior Member drmorris's Avatar
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    Good to know you are getting some further advice. As I said, it can be a particularly difficult diagnosis to make.
    I mention the patient groups only so that you are not 'led astray' by some of the ideas circulated which are very scant on biological plausibility, even if superficially enticing as a 'fit' to a symptom complex. It is a common problem across many of the 'Medical Unexplained Physical Symptom', or 'MUPS' conditions.

    Getting as much concrete info as possible, then consulting someone who knows how to interpret it, is definitely the way to go.
    I was merely suggesting that after all this you may still ask: "Is this Lyme?" and the answer will be 'Maybe.' ... and that may be unsatisfying, so you need to be prepared for that eventuality.

    Good luck, my sincere best wishes
    Best Wishes

    David
    Cheshire Hash House Harriers http://www.cheshirehash.co.uk/cheshire/

  5. #15
    I'm so sorry to hear about your health problems. It must be agonisingly frustrating given that you have gone from a position of being super-fit to where you are now.

    I'm sorry I can't offer you anything more than the seemingly great advice given by the others above.

    I would just like to wish you all the best, and I hope you get a full diagnosis and a speedy recovery.

    GS

  6. #16
    So what was the outcome of this Hanneke has there been any health improvement since you last posted.

  7. #17
    Orange Pony Hanneke's Avatar
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    Yes, I have been clinically diagnosed with Lyme Disease and have been receiving treatment for 7 weeks now. I seem to be slowly getting better! Fingers crossed...

    I have also been referred to an infectious and tropical diseases consultant. I doubt he will be able to ad any more, as the treatment seems to be having an effect, which surely means it is right

    Quote Originally Posted by The-Big-Gray-Man View Post
    So what was the outcome of this Hanneke has there been any health improvement since you last posted.
    “the cause of my pain, was the cause of my cure” Rumi

  8. #18
    Master shaunaneto's Avatar
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    Not sure whether this is at having Lymes or for having treatment that's seems to be working.

    Either way, best wishes with all this Hann. That's definitely a
    pies

  9. #19
    Orange Pony Hanneke's Avatar
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    Thanks Shaunetto I think it is a as the previous diagnosis was MS. You never get better from that and I was rapidly declining to being hardly able to get out of bed or walk, let alone work, drive a car, look aftrer myself. I am still only halfway there I reckon, but the worst neuro symptoms have improved and I am functional again to a point, so I can at least make a living and look after myself!
    “the cause of my pain, was the cause of my cure” Rumi

  10. #20
    I have just skimmed this thread, so apologies for any repetition. 2 of my club mates suffered seriously with LD, and it has taken years for them to start to get through it, including extensive treatment in Germany. They wrote an article for the fellrunner a few years ago.
    I can find out more details if you want me to.

    Good luck with any treatment

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