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Janey’s Story

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I was bitten in 2004 while playing hide-and-seek in Beecraigs Country Park near Bathgate. I went to the GP a few weeks later with a persistent rash. The first thing he said was “Did you have any flu-like symptoms at the time you noticed the rash?”. I replied “Yes, I had a full day of horrific vomiting and chills. I didn’t know whether it was flu or food poisoning”. His next question was “Have you been anywhere in America where you could have got Lyme disease?”. He thought it was only possible to be infected in America, and so my opportunity for early treatment was missed.

I then had a further three years of misdiagnosis before I collapsed completely. During that time, the rash was frozen off by a dematologist but grew back and expanded. It was then excised by my GP and sent off for biopsy, but was not tested for Lyme disease. The rash grew back and kept expanding.

Three years after the bite, I had headaches so excruciating that I couldn’t move for six hours a night in fear of it causing even worse pain. I had a stiff neck,  pelvic and rib pain, and terrible fatigue. I needed help getting out of chairs, had difficulty rolling over in bed, couldn’t stay awake long enough to eat a meal, and developed a gluten intolerance. I then started getting worrying tremors. I had seen a dermatologist, a rheumatologist and a gynaecologist but nobody could work out what was wrong. Remembering my first GP’s questions, I asked for a test for Lyme disease but my request was refused.

Eventually I saw an infectious diseases consultant who told me I had Bannwarth’s Syndrome and diagnosed probable Lyme disease despite a negative test. I was given oral doxycycline and began to improve. However, the improvement did not continue. The antibiotics kept the illness at bay but I relapsed badly when I tried to stop them. As I had peripheral neuropathy, I asked if I could be treated with the intravenous antibiotics which were recommended at the time for neurological Lyme disease. My request was refused. I paid for a private consultation with a neurologist who told me he did not believe in the existence of chronic Lyme disease.

Eventually, after more than three years on oral doxycycline I saw a new infectious diseases consultant. Within five minutes of meeting him, his words were “There is no doubt you’ve had Lyme disease but there is nothing more we can do. You are discharged.” I was sent home, unable to stop antibiotics without relapsing badly and without further help. My GP asked him to reconsider, but he refused. My GP then asked another consultant for a second opinion. He refused to see me because my serology was negative. Because two consultants refused to help me, my GP refused to help also.

I was left with no option but to seek private treatment. I saw a consultant who believed that strong antibiotics were required.  I started on triple antibiotics and had a very strong die-off reaction initially. After a few months, I realised I was beginning to feel better. Gradually, little by little, I was able to get my life back. By 2013, I felt significantly better but was still unable to get off antibiotics without relapsing.

In 2014, two separate private tests from different accredited laboratories gave positive results for borrelia garinii, a bacteria which I later realised had not been included in my NHS tests. My illness developed into serious sinus infection. After over two years of trying to fight it, I am back on very strong antibiotics and doing well on them. I am still unable to stop antibiotics without relapsing but I find pulsing on and off antibiotics very beneficial.

This illness has had a huge impact on my life. I have not worked full-time since 2006. I am fortunate I have my own business so have been able to set my own hours. If I had been employed, I would have had to give up work completely. For about 7 years, I had virtually no social life at all and felt very isolated. Three years ago I started having more energy to do more. I have been able to make new friends and build up my social life again. Now I can swim or walk most days and can manage a fairly normal existence so long as I give myself plenty of time in the mornings before starting my day. I still get mild headaches, fatigue, and sinus issues, I often wake at night dripping in sweat, and I still have a severe intolerance to gluten, but many of the other symptoms have gone. I am one of the lucky ones as I can afford private treatment – I may not be recovered but at least I have a much better quality of life than I would have had without it. I’m still terrified of what happens if my body stops tolerating antibiotics or if the bacteria starts tolerating them even more than it already is.