1. Community
  2. Infections
  3. Lyme Disease

Do I have Lyme disease?

Posted , 3 users are following.

Pbe
Pbe

In october 2014 i suddenly started having really bad lower back pain. My GP said i have UTi and prescribed me some antibiotics. However the pain did not go away and i ended up in a&e a few times in November and was admitted ti hospital in December 2014.

They thought it could be my kidneys but CT and various tests showed my kidneys were ok.

My pain still stayed and i was in and out of a&e and hospital. Each time I felt like someone was squeezing the left side of my back ans I couldnt breathe. They would give me morphine but it wouldnt do anything.

Soon after i had colonoscopy which came back normal. I even had laparoscopy which also came back normal.

In September 2015 my pain spread to my left leg and i get pins and needles as well as burning sensetations.MRI and X ray came back normal.

Rheomatoligst said all my blood tests were ok ad they dont know why im in pain.

However I was still in pain and in and out of hospital.

As a result I lost 4 jobs and dont have a normal life anymore.

A few weeks back, being fed up of NHS not doing anything to figure out why i'm in pain and being treated like an experiment i went to a private clinic ib in leeds. I gave a blood sample where they found 2 bacterias associated with lyme disease.

I was just wondering if someone could advise me on how to properly check if i have it and what else could i do.

0 likes, 3 replies

3 Replies

  • vicky89033
    vicky89033 Pbe

    Posted

    hi, most scans and test do come back clear ive had what seems like my entire body scanned bit by bit over the last couple of years. what were the bacteria they found in your blood ? the best way to test for lymes is to get your GP to print off the blood sample form from the public health england site and send a sample to porton down labs ( NHS ) make sure they write on " forward to porton down" also "please test extended lymes panel for co infections" if these are not written on the form or its just a standard blood slip it will go no further than your local lab ( this happenened to me twice) there is also a very good infectious diseases specialist at sheffield hospital (NHS or private) good luck

    • Pbe
      Pbe vicky89033

      Posted

      One of the bacterias they found was Borelia. I got told that majority of NHS blood results come back negative so thats why no one thought i could have lyme disease.

      I feel like no one believes me when i go to see these so called specialists. They all came up with different diagnosis but they could never explain why I was still in pain.

      I will call my GP tomorrow and make an appointment to get my bloods sent to those labs.

      I just want to be ok again and not end up in hospital every month or so.

      Thanks for your advice. Really appreciate it.

    • vicky89033
      vicky89033 Pbe

      Posted

      how did you get on with having bloods sent to porton down ? have you had any results ? there is a very good ID specialist in liverpool (NHS) i saw him 2 weeks ago and he spent over an hour actualy listening to me and suggested a full body PET scan to look at inflamation. after seeing so many specialist who had no clue and didnt even want to consider anything other than the obvious and many who have no idea what lymes is i was at the point of giving up but glad i pushed on. good luck
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.