I was bitten by a tick aged 16 which was the start of my health problems. I had to drop out of school as I had terrible headaches and concentration problems and I was exhausted yet doctors always insisted that I was just depressed. Antidepressants failed to help me but I managed to recover myself after a few months in bed. I had my next relapse when I was 19 at university with a return of the same symptoms as well as swollen glands and feeling as though I was coming down with the flu. Again, I was forced to drop out of university and this time I spent 9 months in bed in order to bounce back without any medical intervention. A year later, the same thing happened but during this episode an autoimmune thyroid problem was discovered which was the first sign that something physiological was malfunctioning in my body. Thyroid hormone replacement enabled me to regain my strength enough to stay well for two more years and complete my degree before my final relapse in 2008, from which I have never recovered. At the start of the last relapse, I had severe swollen glands, widespread body pain, headaches, severe concentration problems, twitches and tremors. I consulted a wide variety of doctors from different specialities in 3 countries ranging from pain specialists to rheumatologist, to endocrinologists and psychiatrists. Absolutely none of these doctors were able to find a solution to my problem and I was often told it was all in my head despite the fact that psychiatric medication failed to help me. I was also told I had ME and fibromyalgia but I wasn’t willing to accept these scrap-heap diagnoses when the only recommended treatment was Cognitive Behavioural Therapy and Graded Exercise.
My neurological symptoms began escalating a couple of years ago and I began experiencing terrifying seizure-like episodes and so in desperation, my parents took me to see a doctor recommended to us by a friend in America. He went through my clinical history and symptoms very carefully and suspected that I had Lyme disease and as well as a host of co-infections. My Western Blot test came back positive and I am now being treated out there with long term intravenous antibiotics with my parents having to fund my very expensive medical bills as I am unable to work. I am gradually improving but I feel very disappointed in the way that the NHS has handled my case and denied me treatment in this country. I am one of the lucky ones who is in a position to be able to afford private treatment but if my case of Lyme disease had been picked up and treated in the earlier stages, I would never have had to suffer this long and lose the ability to work and be a productive member of society. There needs to be a huge change in the way this country diagnoses Lyme disease and the guidelines need to be adjusted so that doctors have the freedom to treat patients for long enough for the infections to actually be eradicated to prevent such widespread suffering.
Current Location: South West UK
Infected in: Hong Kong