Clare R – Surrey

I was a very fit, active 41 year old when I fell ill with bad flu like symptoms, my glands swelled up, high temperature, terrible fatigue (I struggled to get upstairs), aches and pains all over but no cold symptoms.  After 3 weeks I went to my GP who told me it was a virus and nothing he could do.  A week later I went to see him again as I was no better.  He did a blood test which showed I had a high white cell count but he still refused further tests or investigation as I was “young & healthy” and should be able to fight it off on my own.

After 4 months of these symptoms and repeated visits to him he said that I had ME but that he believed all ME was hypochondria (even though I also had enlarged glands and a high temperature that came and went) and wouldn’t refer me for any help. I was left to try and cope alone. 1 1/2 years later I got a kidney infection and was prescribed antibiotics and strangely felt a bit better. I mentioned it to my family and friends that I seemed to have a bit more energy and that I wasn’t getting a temperature or swollen glands as badly.  My Husband was chatting with one of his friends about my illness and his friend said it sounded very similar to the symptoms of his friend who had been diagnosed with Lyme disease. I changed surgery and went to see my new GP with this new information. They refused to give me the Lyme disease test as they said it was impossible for me to have caught this disease, as there were no known cases in Surrey and that the ticks in Surrey do not carry it, but that they would give me the antibiotics (Doxycycline) just in case. So after 2 years I finally got treatment.

Since the antibiotics (2 courses) I do not suffer with the terrible fatigue, temperature, swollen glands or whole body aching but I have been left with worsening pain in my joints and less energy than I used to have. I have also struggled to get my fitness levels back because of the joint pain. I tried seeing the GP again about this but they just want to label it Fibromyalgia.  My experience was appalling and the treatment and help I received was sub-standard and lack lustre.  I cannot find one good thing to say about my whole experience of treatment through the NHS, it was a constant battle to get any help at a time when I felt so ill I couldn’t battle. I lost 2 years of my life to something that could have been treated quickly and if my Husband’s friend had not told us about Lyme disease I might never have received any treatment.

Current Location: Horley, Surrey
Infected in: Horley, Surrey