Lyme disease - dazed and confused!

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Hi all,

First time post and just after a bit of advice from people who may have had a similar situation to myself or who can offer me any advice....

Ok, so basically about 3-4 weeks ago I found quite a large sore lump on my scalp. I couldn't see it in the mirror because of where it was, but my partner said it was a spot. I kept touching it and trying not to pick it but it seemed to get bigger and more sore, and it felt like it had a funny scab on it. Anyway, last Saturday I was fiddling with it again, and with my nails I pulled out (to my Horror), this white hard lump with blood on the end. I showed my partner who said straight away that's a tick. We have 3 dogs, so I guess getting a tick isn't so unusual. The time up until this, I hadn't been feeling too clever - I'd felt very fluey and had night sweats where I woke up my hair soaking wet. I'd also had bad headaches but put this down to flu.

Last Monday I came home from work and I was ridiculously hot then freezing the next minute, I just didn't feel right. I went to bed and when I woke up to go to work, I couldn't put any weight at all on my right leg, or bend my knee. I sat down and looked at my knee and it was really swollen with a hard lump above the kneecap. I tried walking a bit more but it was unbelievably painful. I rang 111 who advised me to go to a and e. They were useless. They dismissed my tick bite and told me to rest it and ice it and take painkillers. They didn't know what it was and quite frankly couldn't be bothered to find out what had caused this.

I saw my GP on the Wednesday as I wasn't happy and the pain and swelling was getting worse. He agreed that it was very much a coincidence this was happening alongside my bite and prescribed me antibiotics plus tramadol for pain. I've also had a blood test but waiting on the results. I have heard that the blood test can be quite innacurate? I certainly don't want Lyme disease but I'm worried it is but the test doesn't show it and then what do I do, or of it isn't what else could it be? I'm still in a lot of pain and in general just feel really crappy, but the swelling has gone down a little bit. Oh - I don't have a rash either. Can anyone help?! Please!!

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5 Replies

  • Posted

    Julia get onto a Lyme site Lyme UK is good place to start ,lyme Australia another as I've just seen OZ after your name . They will give you info on what to do . Good luck . Look up John Cauldwell site ,he's in UK 

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    • Posted

      Lyme site uk - great will look there. Oz is after my name as moving there in Feb next year! Just want to find out what's going on as don't feel right at all :-(

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  • Posted

     Hi,

    First of all not all ticks  carry Lyme bacteria.

    You were lucky in your GP giviing you antibiotic. Continue to have the antibiotic for a  a month and taht should fix thing   ]If you continue to get more symptoms note them down.

    A lyme test done now may well come back negative as antibodies/antigens don't show up in the blood for some time.

    Mine started with sore on top of head and went on to develop more sores, had fever/ pains in all joints and then a whole series of odd things happening including  swelling of knee joint nd hip. Now have very  severe arthritis in hip/knee and arm.

    The sores on head have been there  on and off and  have just develped  one the same as the initial one. I pick off scab but it just comes back. Itchy head and itching in other places nearly drove me  demented.

    Ask your GP for xray of knee if it doesn't improve.

    Lyme test done at GP's  came back negative though I do not know if they tested for co infections. It is the co infections that are the problem.

    You ask what else could it be?

    Tick bite/ fever/ aching joint/ night sweats etc- sounds very suspicious to me. Maybe just a virus but maybe not.

    What antibiotic did he.she give you.

    After taking this for a month and still things are not right then go back and get a Lyme test done. If that is negative, and you can afford it ,then get a test done by a German lab. They will tell you how it's done..

    Continue with antibiotic for three months if things don't improve and follow a Lyme diet.

    BUt whatever it is it may have been caught in time and no further illness developes. I really  hope so.

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    • Posted

      Hi

      Thanks for your reply. At the moment my GP was just surmising it's Lyme. I agree it'd be negligent of him not to give me the antibiotic if he suspected it and it did turn out to be Lyme!

      How long does it take to show up typically? I'm worried if it doesn't and then they just dismiss it. I'm not saying it definitely is Lyme, but for me to feel as bad as I do is unusual. My knee is so swollen and I'm in absolute agony when I move.

      I have read a lot around testing and I don't have the money to go abroad....I just hope that my GP will help me when it comes to getting a proper diagnosis for whatever this is. I can't drive anymore because it's so painful so can't get to work, plus all I want to do is sleep. I have hardly any appetite and all i want is fruit, everything else I'm forcing it down

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    • Posted

      I'm sure you will be fine as you are having the antibiotic soon after the tick bite. You may even have had the tell tale bulls eye ring on skin under your hair and not noticed it.

      You could perhaps  just be having a  bad reaction to the bite .

      But whatever it is you are lucky in having a GP who is taking care. Most/Many in UK will dismiss the possibility of it being Lyme as rubbish  unless they see the bulls eye rash and there is proof of the tick bite. In your case you saw the tick and your GP  is taking no risks

      The 4 weeks antibiotic should cure it . Is it Doxycycline you are having?

      Try not to worry as   .

      Your Doctor seems sensibleand will probably send your blood to Porton Down for testing later on

      .

      You don't go abroad for the testing . Your Gp can arrange for the blood to be taken and it is collected by FED EX  The laboraratory  send you all the details of what to do BUT  since your GP is already doing what is needed then  there is no need. for private testing  

      You cannot work while you are unwell so just rest and sleep  and get some sun.. be sure to take the antibiotics for the full four weeks at least. 

      As for appetite. Don't worry. drink plenty of water to which is added lemon juice. and not sugary juices.

      Have what you fancy and preferably low carbs and sugar.

      Don't force food down.  

      fasting is no bad thing.

      There are lots of Lyme websites but at this stage don't read anything negative. Just be positive. Eat only what is good for you.

      Boost your immune system and things will improve.

       

       

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