Not sure what to do???

Posted , 3 users are following.

I had lyme diesease for 3 years..I was going back and fourth with the doctor they didn't know what it was until I almost died of a really bad headache and couldn't walk either.. No I lost a lot of my hearing some of my eye sight....but the worse is that I get didn't stuffs all the time I just turn 29 and had 6 surgeries so I don't know who to go to that is not scare to prescribe me pain killers...and its because I suffer so much of muscle pain...and headaches they think is migranies but I know is not I been taking toplomax for 3 years and the headheachs still the same...the pain is in my back and it goes all the way down to my leg...I have to beautiful kids that I feel that am not giving my 100% percent because am in constant pain..please help me I don't know what to do...or where to go....I had suffer from major depression because of that also...

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4 Replies

  • Posted

    Hello Claudia,

    I'm sorry to hear how poorly you are. I had Lyme Disease two years ago and, like you, felt frustrated by the constant pain and lack of knowledge of my GP. What turned the corner for me was finding Lyme Disease Action, who helped me get informed and advised me on how to get treatment and how to approach my GP firmly but in a non-confrontational way. No easy thing when you're in pain. I suggest you look them on on the internet and contact them, they will always respond.

    Good luck and I hope you feel better soon. x

  • Posted

    Hello Claudia,

    sorry to hear you are having such a bad time.

    If your GP believes you have got Lyme disease, then you need to ask for a referral to someone who can treat you specifically.

    You've have Lyme for 3 years? Then a 2-4 week course of antibiotics won't be enough. Unfortunately Primary Care GPs are not allowed to prescribe more of this type of antibiotic without the guidance of a consultant, so you need to be referred to someone who can take responsibility for your care at the correct level.

    Your GP should be able to locate a specialist local to you who can help. If there is no one available in the NHS, don't give up. There are funds available for referrals to some private clinics but you would have to ask your GP how it works in your area.

    In the meantime, do what you can to boost your immune system by means of your diet... you know, fresh fruit and veg, keep off sugary and processed foods etc. 

    I can't advise regarding painkillers. I've also had Lyme for 2-3 years and I've had a few of those headaches. I try to keep hydrated but I don't take any painkillers as they have no effect on me so I'd prefer to not add more stuff to my already stressed system. I just go to bed and wait for it to pass, but I know not everyone is able to do that.

    Have you contacted Lyme Disease Action? You can find their web site on google. (If I put the link here, my reply will be moderated or deleted.)

    They have a contact us section where they will get back to you with advice for you and your GP.

    Try not to become overwhelmed by all this. I know its not easy, but there will be a way forward for you.

    Take care,


  • Posted


    My wife is a long-term Lyme sufferer and has latched onto a phenomenal physcian.

    Where do you live?

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