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  • Lyme Disease – give me some facts.
  • Hi
    I have been off work now for 4 weeks with suspected Lyme Disease. I’ve been whistled to hospital with heart attack symptoms an ECG Reading that panicked the doctors, I’ve been treated for pnenomia and now settled for Lyme.
    I’m a week into the medication and slowly (very slowly) getting better. I get a couple of ok days then whallop I’m in bed for the day.
    Who has had it? What can I expect? I’d now like it to get better as it’s becoming annoying (and apparently so am I)
    I did do a lot of running this year in the lakes so I did get a couple of ticks.
    Thanks for any info

    Premier Icon scotroutes
    Subscriber

    I’ve had it (at least) twice. Both times diagnosed early. The antibiotics certainly made me feel crap. As far as I can tell, I’ve suffered no long term effects.

    GWS

    Wear Smidge.

    And it’s Lyme (no s) 😉

    I’ve some experience of supporting patients through recovery from Lyme.
    Chronic Lymes disease is unpleasant, Borelia is a pretty beligerant bug to have had nesting in your system for a few weeks or months untreated.
    You are going to have to wind in your expectations a bit I’m afraid; you might need to have a moderate to considerable recovery period. Realistically, you’ll need to plan for a very careful and gradual recovery, which will extend well after your first extended course of anti-biotics. You are properly ill and you’re going to be pretty wiped for a while; try not to fight it, you’ll come off worse in the long run. Please take the recovery time that it needs and be very careful about returning to exercise.

    Premier Icon cinnamon_girl
    Subscriber

    That’s rubbish for you. Briefly there’s a few threads on here about Lyme disease or search my posts and threads started. Will send you a PM later, currently out of spoons.

    Premier Icon tjagain
    Subscriber

    There is a lot of misinformation around and poor quality advice. The science on lyme is moving forward rapidly and NICE advice is behind the times and slow to react. Testing for Lyme is often inaccurate and it is difficult to have a solid diagnosis on occasion.

    Try to find someone who is clued up on Lyme and look at info from a range of sources and be skeptical about that info. I haven’t looked recently so do not know the latest

    Get well soon and all that

    paul0
    Member

    There is a lot of misinformation around and poor quality advice

    I would agree, but also add that this cuts both ways. Some of the advice offered on Lyme forums, websites and facebook groups should definitely be treated with caution in my opinion.

    As you’re being treated on NHS for Lyme I assume you must have a positive test (or a rash prior to getting ill)? If so that takes part of the uncertainty out of the equation, as the NHS testing method seem unlikely to yield false positives.

    So then it’s a case of making sure you get the right / enough treatment. The NICE guidelines might not be ideal, but at least they’re a starting point for the minimum you should expect to receive on the NHS. The flowchart if useful, also see Table 1 for their suggested antibiotic treatment length and dose.

    https://www.nice.org.uk/guidance/ng95

    benv
    Member

    I’ve had it (at least) twice. Both times diagnosed early. The antibiotics certainly made me feel crap. As far as I can tell, I’ve suffered no long term effects.

    Same here.

    muddyjames
    Member

    For those that were diagnosed early how was it detected? Did you get the erythema migrans or other severe symptoms?

    I was bitten a while ago and the gp wasn’t interested.

    benv
    Member

    First time I took a photo of bullseye rash on back of leg taken as a ‘just in case’ precaution then later developed a run down feeling like heavy cold/flu minus the sniffing and mucus and a couldn’t be bothered feeling. Doctor diagnosed based on both symptoms and photo. Rash lasted about a week and symptoms came on about 3-4 weeks later, it was about 2 weeks of feeling crap before going to doctor. Had a safety bulletin come in at work on the subject the previous year that stuck in my memory as this was before it was more well known. Doctor was great, took no convincing to prescribe antibiotics. Was fine after the 8 week course.

    2nd time was few years after the first and I just presented the rash to doctor straight away and was put onto antibiotics. No further symptoms developed.

    Premier Icon slowoldman
    Subscriber

    Son of a friend had it last year. Knocked him flat for several months and he’s a fit lad. Fully recovered now and knocking off Munroes again.

    Premier Icon tjagain
    Subscriber

    paul0 – I quite agree. Some of the fringe stuff is delusional.

    Premier Icon Yak
    Subscriber

    Same as above – had early treatment following early symptoms. My son too + lots of other kids. In high season the local drs see people everyday with Lyme symptoms. Seems crazy that our consumption of antibiotics is preferable to the use of a vaccine.

    Premier Icon scotroutes
    Subscriber

    I believe that vaccine trials are currently underway.

    Just to re-iterate, prevention is better than cure. Wear Smidge (or another Picaridin/Saltidin based insect repellent).

    Thanks for all the facts and help.

    Do other people have good days and bad, so i feel almost better one day or 2 days in a row then i feel awful. Is this to be expected?

    After 3 weeks of antibiotics how long does recovery generally take?

    Premier Icon Yak
    Subscriber

    +1 for smidge.
    Good news that a vaccine is underway.

    Premier Icon scotroutes
    Subscriber

    After 3 weeks of antibiotics how long does recovery generally take?

    Too individual to call, but 6-9 weeks or so I guess. Just had to take it easy for a while and build up slowly. It’ll depend how bad it hits you and what level you are trying to get back to.

    Premier Icon Greybeard
    Subscriber

    Didn’t know about the possibility of a vaccine, looked it up and found two interesting articles:

    https://www.healthline.com/health-news/lyme-disease-vaccine-update

    https://www.theatlantic.com/health/archive/2019/10/why-there-no-lyme-vaccine-humans/599503/

    The other threat from ticks is Tick Borne Encephalitis – not currently a problem in the UK, but as big as Lyme in Scandinavia. It’s not treatable but fortunately there is a vaccine, which I will be getting before I go to Finland again.

    The other threat from ticks is Tick Borne Encephalitis – not currently a problem in the UK, but as big as Lyme in Scandinavia

    Germany too, I remember my sister in law getting a vaccine before going to Bavaria.

    Sound comment from Scotroutes.
    The answer to ‘How long?’ is not easy; your immune system has been and continues to be subject to a significant insult. How long you need to recover from that is not an exact science. Think of it as ‘damage’ and you might get a better understanding of why it can take time; just because the cause, the active bug, has been removed, doesn’t mean that all of its effects are cleared away yet. You will gradually have more better days than bad days but mustn’t return to strenuous exercise early. No-one can tell you how you feel or how long this will take. Best wishes and take care.

    Premier Icon cinnamon_girl
    Subscriber

    Some verified links for you from the CaudwellLyme website, their former CEO was on the NICE guideline committee. You can be given a further 3 weeks of a different antibiotic if there’s no improvement. Make sure you’re taking the correct dosage from here:

    What does the NICE guideline for Lyme disease say?

    Tips on taking antibiotics:

    Tips on taking doxycycline

    You don’t state when you were infected but if it’s recent then this is your window of opportunity. Do bear in mind that there are no Lyme disease experts in the NHS. Take it easy and protect your gut.

    Good luck.

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