It was around my 60th birthday – unforgettable really because the family had booked a hotel and tickets for Les Miserable in London. Every morning I take my two dogs, as it was then, for a walk. There is a nice area of heath land less than 200 meters from the house. It has well defined pathways and the dogs can roam as they will. I must have been bitten though don’t remember exactly; there was no evidence and no EM rash. The first I knew that something was wrong perhaps a couple of days later when I had pretty severe coughing bouts and felt as though I was coming down with the flu. The flu like symptoms passed and I felt well enough to travel, although I still had the irritating cough and I was bringing up blood clots.
When we got home I made an appointment to see the GP. He sounded my chest and was a bit concerned and prescribed Erythromycin for what he though was a chest infection. He was also concerned that my voice was hoarse, glands were swollen and my throat at the front had the appearance of goiter, so I was referred to ENT Later I had a CT scan which came back negative. I soon began to experience other symptoms too especially neuropsychiatric events, such as an inability to control my emotions, delusions, paranoia, anger and irrational thoughts on suicide. It got so bad that I asked to be admitted for psychiatric assessment and was admitted for a week in the Ailsa Hospital for a week. Months passed and I was now experiencing permanent tinnitus and hearing loss.
It took many months and a lot of persuasion to have a serology test for Lyme Disease. I typed my symptoms into a search engine and Lyme Disease was one of a few answers that came back. I then researched the disease and it became more and more obvious that the circumstances and symptoms fitted well with the disease. Reluctantly my GP took a sample of blood and sent it away for testing. It came back negative. Having done extensive research, I found that this should and would have been expected given that I was prescribed antibiotics in the early stages of infection, therefore my body would not have produced the antibodies. This was all treated with skepticism and even contempt and it was not until I developed a bad bacterial nasal infection and was prescribed Doxycycline that I was able to insist that I be given more radical courses of Doxycycline to eradicate the suspected Lyme Borreliosis.
Eight days into the course I had what I later knew to be a Jarisch-Herxheimer reaction. I wrote to my GP practice informing them of the reaction. Since then it has been an impossible struggle to get them to acknowledge the presence of Lyme Borreliosis. I am not asking for treatment because I knew the futility in continuing Doxycycline treatment once I no longer showed the reaction to treatment and the symptoms remained or returned.
I have been lucky compared to many others, I do not have the inflammation that others suffer from. I do get pains in the joints and muscles. I also get pains in the chest which used to be worrying because I have a pre-existing heart condition. Almost everyday I have parasthesia, numbness tingling sensations. I would not go to the extreme of saying Bells Palsy because it does not last long, but the left side of my face tingles and goes numb. I have permanent tinnitus and hearing loss, my balance is pretty iffy. My emotions can go all over the place. My biggest fear is that I may at some point start getting inflammation. Once that happens I fear my end will not be long afterwards. I have no GP to turn to to allay or monitor those suspicions and would have to rely on the emergency service at A&E for treatment when that time came.