In search of freedom – Kerrie

I was bitten by a tick in 2003 when I was 17 years old after hiking in the Dartmoor National Park, Devon, UK. I didn’t see the tick on my side for a week and without realising what it was I knocked it off. I became very ill with flu like symptoms such as fever/nauseous and a stiff/painful neck and knees. Luckily my doctor had suffered from Lyme disease and when I mentioned I’d seen something on me he thought it could have been a tick. This led to me being treated with short term antibiotics. I had a positive blood test for Lyme disease. I also was diagnosed with glandular fever. There was some nerve damage and I was treated by a neurologist to try and increase the nerve impulse signal.

I then went on to university and I was ill regularly with tonsillitis, kidney infections, sinusitis and super yeast infections. I had ongoing fatigue and I had severe pain in my lower back, knees and neck. My knees were painful after standing for more than 10 minutes or walking up hill. I attended the doctors regularly during this time for antibiotics to help with the infections. I went on to complete a Masters in 2008 but I was ill with severe joint pains, nerve pains, sinusitis and felt very depressed. I did go to the doctors and tried to get some help but the doctor was rude and not helpful or supportive by saying I just had depression reducing me to tears.

I then started a full-time job which made my illness more apparent. I would get home in the evenings and be exhausted and in severe pain with my joints and nerves. I decided that it was worth going to the NHS GP and push for proper help. I was given a variety of blood tests included a test for Lyme disease. The NHS test for Lyme disease was negative and all the other blood tests came back fine. The doctor thought I had sciatica and that this contributed to my nerve pains in my back. I was still feeling terrible and thought that this could not be the only reason I felt like this. All my symptoms had been the same since I’d had the Lyme disease and had never gone away and I had not felt well since before I’d had the Lyme disease.

The doctor did not support chronic Lyme disease and said my symptoms pointed to a variety of things that I could have. I waited for months and had no help apart from a transfer to a neurologist to look at my leg and back pain. He did not think I was suffering from Lyme disease symptoms either and thought I had a very over sensitive brain.

In desperation due to lack of treatment from the NHS, I visited The Breakspear Medical Group, which specializes in the treatment of allergy and environmental illnesses. As a last resort, I paid a large sum for a consultation and blood tests to determine if I still had Lyme disease. I was told all the symptoms I had were typical of Lyme disease and I did not display any symptoms of sciatica as the GP had suggested to me. I had a variety of blood tests which I paid for. The result of my Lyme IgM Western Blot test was a very strong positive result for Lyme disease. It is believed that combined with my medical history, clinical symptoms and strong positive result I had had this since I had been bitten and it indicated that the antibiotics I had did not cure the infection.

I wrote to my NHS GP explaining that I had taken this course of action and if I could get any help from the NHS now that I’d had positive Lyme disease results. My doctor at Breakspear wrote to my NHS GP and my request for help was refused. The NHS GP discussed my case with a specialist and they both agreed that tests were not evidence that I had chronic Lyme disease.

I now live and work in Edinburgh and I was on antibiotics for two years (Cefuroxime), which I paid for. I noticed a great improvement on the antibiotics but I stopped taking the antibiotics because I was getting reoccurring super yeast infections that I could not eradicate and had frequent absence from work. I was hoping there would have been progress in the two years I was on them but now I still have all the symptoms I had before I started the antibiotics such as: arthritis in joints, severe knee pain, severe nerve pain, fatigue, back pain, neck pain, brain fog, chills, conjunctivitis , dizziness, facial palsy, fever, flu-like symptoms , extreme sensitivity to touch, noise, sound, light, forgetfulness, shivering, sinusitis, tonsillitis, yeast infections, excessive Sweating, swollen glands and the symptom flare – approx 4 weekly.

I am wondering whether I should continue again with antibiotics or whether I should have IV antibiotic treatment or alternative options. At the moment I feel that Breakspear is the only option available for me treating Lyme disease as I have tried so hard to get help from the NHS, which has been unsuccessful. Now I am 27 years old and after 10 long years I am sick of all the pain and fatigue but protests like this give me hope that freedom might be on the horizon.

Current Location: Edinburgh, UK
Infected in: Dartmoor National Park, Devon, UK