I live in Scotland, and Lyme Disease is deemed 'very rare' here. From what I gather this is due to poor testing and lack of understanding in our national health service than any other reason.
I have felt unwell on and off for a few years. It started with general fatigue, which I put down to stress. Then I had a few weeks where my shoulder and arm were sore. I work outdoors, have had a couple of tick bites in the past (no rash) and therefore am aware of Lymes so I asked about this. My doctor placated me with a week of (the wrong) antibiotics. The problem went away over time and I forgot all about it.
I then started getting lots of general coughs and 'colds', the odd dizzy spell and migrane-like headache, tiredness, irregular periods and pelvic pain. My immune tests came back normal, as did hormone tests and a pelvic scan. I was told I just had stress and IBS.
A few months ago I started noticing I always had a 'cold', with difficulty sleeping, runny nose, trouble breathing at night, mood swings and reduced exercise capacity. Then in Nov I suddenly got severe shortness of breath and chest pain. I went to my (new) doc assuming I had lung problems. Lung tests were ok, as were the following heart tests. I was given steroids which didn't work.
Due to my outdoor work, my doc thought to test for Lyme just in case. In the meantime he gave me a week of antibiotics for my chest which didn't help either. Instead, I started getting night sweats, numbness in right leg and arm, periods of confusion, dizziness, shaking, low body temp (down to 34oC at times) and severe fatigue amongst other symptoms. My lowest point was when I started losing sensitivity to my bladder and, and a 28 year old woman, started leaking urine. I couldn't even walk up the stairs.
The Lyme test took weeks. As nothing else had worked, my doc decided to try me on 2 weeks of 200mg Doxycycline while waiting. This started working after 3 days, and I noticed a slow but steady improvement. After 2 weeks I went back, was told my test (ELISA only) was negative so i was 'unlikely to have Lyme Disease'. I told doc about false negative % and he didn't entirely believe me. But at the same time he also couldn't think of anything else that could have responded to Doxy but not been cured (most other infections are treated by just 100mg for a week). He gave me another 2 weeks worth which is now finished, but had made it clear that I couldn't get more since it's 'unlikely' I have Lymes.
I am waiting to see one of the only 3 Lyme experts in the UK (2 weeks time), which has had to be privately.
Sorry for such a long scrawl, but I was wondering if this sounds like Lymes? If so, will I have to get a positive test to be treated further? And, how long would I have to be off the antibiotics for to get a positive result?
I would be very grateful for any advice you could give me.