4 years since tick bite

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I was bitten by a tick in 2010. It wasnt until this week I learnt about Lymes disease. I got the bullseye rash, and as the months progressed I had the worst flu of my life, incredibly painful episodes of back pain and neck stiffness so much so that I was given physio  and literally couldn't move my neck when i was having a flair up. I got severe headaches which made me almost pass out and so dizzy  I was sick. I had tests for labarynthitis and saw a ear nose and throat specialist but found nothing. The right Side of my face I got facial numbness and neuralgia, and my eye would twitch and go blurry. Saw an eye clinic and found nothing. Al

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  • Posted

    Oops pressed post by mistake!!! All of these symptoms are still on going, and I have been referred to a rheumatologist for 22nd. I have a doctor's appointment today and I am going to mention lymes disease. Is it possible to diagnose this far on  and what is the process? I live in the UK.
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    • Posted

      I live near Herts so that's good. The pain comes and goes, and having a toddler I have learnt to live with it. The most consuming symptoms I have now are chronic fatigue and lower back pain which is taking over my life. I have to nap during the day and after a 8-10 hours sleep at night I wake up feeling stiff and exhausted. I can't grip my hands for up to 2 hours after waking.
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  • Posted

    Hi Josie.  were you bitten by a tic?   For past 17 months I have been treated for RA, no better now than I was when I first went. 

    It was only a few months ago when I remembered the tic on my living room carpet which I thought had fell from me, at the time we were walking in areas where tics are reported, I had lots of marks and rashes on my legs (this happened 6 months before the RA treatment started but because they couldnt figure out what was wrong with me they sent me to rheumatology)

    I have mentioned Lyme Disease to my rheumatologist and my g.p. but I was made to feel like a silly girl suggesting this.  I did manage to get test done by g.p.'s but like lots of others the test came back negative.  So I am still no further on.   Get all details you can together why you think you have Lyme as your amunition,  you can buy a private test, cant remember how much it is but this is far more accurate than the NHs test, even the manufacturers say its not very reliable, but because mine was negative doctor wouldnt go any further.

    Today I am in imense pain and have been for past 2 months, every day I have pain but it varies how bad it is.  The symptoms of RA can imitate lots of diseases and Lyme is one off them but getting NHS to listen is impossible, unless you have a good g.p. that is.  My life ended 2 years ago and I wish I could go back in time, yes I can still see and talk but my joints hurt so much and my knees are huge with water.   I am going to go onto Minocycline for my RA which I thought would have been early this week after waiting 12 weeks for appointment, when I went she just said exactly the same as before and said I would have another appointment in 12 weeks to see about going onto Minocycline - an utter bloody farce again I am so weak I couldnt argue but the day will come.

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    • Posted

      Hi Julie. Yes I was bitten by a tick on the inside of my left foot in 2010, I had the bullseye rash/bite mark and within weeks my symptoms as above started.
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    • Posted

      I really hope you get help Josie it must be terrible with a toddler, at least I am 60 (used to be a young 60!!) and I can rest whenever I want but children dont let you rest do they.  The symptoms you said are what they will say are typical RA symptoms but dont give up, my symptoms started in 2011, once never at g.p surgery but 2011 I was never away.  It is a very frustrating waiting time.  I think the longer you have it the harder it is to treat it.  At least you have a hospital in your area which understands Lyme Disease, I have to use Hull royal Infirmary - I will say no more - I have always  said if I am ill dont let them take me in there and now look at me.  Take care Josie and keep us informed of how you go.   All I can suggest for you is painkillers and ibuprofen it might ease things a bit. Warm water in a morning for your hands helps.  So does Volterol cream but dont use together with ibuprofen you will overdose.
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    • Posted

      Thank you. I'm quite anxious about my Dr's appointment today, It's at 5. I hope I'm taken seriously. I'll let you know how I get on!
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    • Posted

      hi Julie

      just wondering how you getting on did you ever test positive for lymes? my symptoms are so similar to yours positive rf and ccp horrible bakers cysts and now terrible shoulders arms and flaring fingers really ot convinced is ra.

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  • Posted

    hi

    i am in a similar situation having been bitten and becoming ill in 2002.

    it was only recently i found out that lyme is an issue affecting the uk and i feel that all my kids and wife may well be affected as we live in the lake district surrounded by sheep the main source of the ticks which carry lyme in the uk.

    ofcourse all the tests are negative and no one wants to know.i recently saw a infectious disease specialist and they sent blood to the main specialist lyme lab run by public health england which is apparently also negative.all i know is that i had classic lyme symptoms after being bitten by a tick in a lyme endemic part of the uk.i think many people carry lyme but dont get ill or at least not at first.possibly only minor ailments that are easy to shrug off,then one day it starts affecting the heart and nerves.by this time its probably nearly impossible to diagnose with tests and treatment may well not irradicate the infection completely.

    however there is still a good chance the lyme can be cured with  a good long corse of antibiotics but like everything lyme there is a lot of disagreement on the necessary treatment and long term strong antibiotics are not without many possible health implications.

    from what you describe is sounds like you have lyme and its now up to you to live with it as best you can by keeping as healthy as possible and getting as much rest as you need.maybe the next step would be to see the hospital or some similar place where they send samples to german and american labs which are more liberal.

    good luck

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  • Posted

    Yes the Brakespear is private.  I have just booked my initial appointment for December - I live in the Middle East at the moment and won't be back until the Christmas holidays.  They say the initial consultation is £210.  I don't know if I have Lyme or not as I am waiting for test results from USA.  I paid for complete Lyme and co-infections panels around £750 - should get the results next week.  I dont remember a lyme rash but my husband and daughter say I did have a bite like it.  I rescue many cats and dogs over here and most have ticks when found.  I have been bitten and scratched by all the cats I have rescued when playing with them especially as kittens.  I sufferred from intermittant episodes of vertigo for years and then 6 years  ago, I suddenly developed allergies to various medicines so I saw an allergist who decided to inject me with a corticosteroid.  Within 15 mins my body went mad and never recoverred.  I am hyperthyroid with adrenal maladaption and have been on thyroid medication for 3 years.  My symptoms go away for a few days then hit me badly.  Tremor, palpitations, faintness, nausea, feeling hot, feeling cold, numb face (left side), extreme joint and muscular pain, numb hands and feet, stomach cramps, blurred vision, anxiety, headaches, itching etc.  Doctors haven't been able to work out why. Hundreds of tests later and the only things that are abnormal is very low Vit D, low Iron, low ferritin, low transferrin saturation, high Coproporphyrins, borderline vasculitis, white patches on brain MRI but in keeping with age, multi nodular thyroid with thyroiditis, hyperthyroidism, adrenal maladaption, low DHEA, supraglottic mucosal thickening with narrowing of laryngeal vestibule, and cervical spondylosis C6-C7 and a mold test was positive fro trichothecene mycotoxins.  A lyme serum test a few months back was negative as only considered positive if IGM under 1 and mine was 0.6.  All these tests and doctors don't know why I'm ill although my new endocrinologist beleives it may be a parasite infection.  At least if the lyme test comes back positive I can get treatment and hopefully be able to get a cure.  Living like this without an explanation is hell.
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