Susan – Aberystwyth

About 5 years ago I started suffering various physical and cognitive symptoms, which I initially put down to the long term effects of working night shifts (and indeed when I finally saw a GP that is what he stated the cause to be.) However despite reducing my night shifts and the hours I worked my symptoms steadily got worse, so that, four years ago now, I had to give up work entirely.

Seeing a different GP, I suggested that one of the possible causes of my illness could be Lyme disease as I had earlier been bitten by a tick that I had been unable remove for days, and following that, had a ‘bullseye’ rash on my leg (at the time of the bite I was unaware of Lyme disease being present in the UK and thought nothing of it).

My GP agreed to have me tested for Lyme, but I was told afterwards that the results were negative (I was not told then that the result stated that a negative result did not actually rule out infection with Lyme; nor that I had not been given the Western Blot test I believed I was having; and I am still in the process trying to obtain the details of the test I did have, as the laboratory has refused to give me any information.)

Lyme having ruled out, I spent the next two years trying to obtain a diagnosis and treatment through the NHS. However all the NHS would do is test for conditions like thyroid problems, Multiple Sclerosis, etc, and when these came back negative they would just say “we don’t know what is wrong with you/can’t help you/go away…” No one was interested in investigating what could be causing my symptoms, or offering any treatment for them, despite the fact that they were getting worse and worse so that I could no longer go up stairs, use my arms properly, drive, or shop or cook or do almost anything; and my cardiac and neurological symptoms were even more terrifying.

Very luckily, at that point I took anti-inflammatory and antibiotic medication for a dental infection and noticed that I felt a lot better, symptom wise. I also saw an article in the news about Lyme disease, and researching it again, found that my symptoms fitted exactly (even than they had originally) with Lyme neuroborreliosis. The NHS still would not accept this, so I saw a private specialist who confirmed my diagnosis of Lyme disease and recommended that my GP prescribe me long term antibiotics; which she did.

This last year or so I have been on a phased mixture of antibiotics, and numerous supplements and minerals (largely when not on the antibiotics). I am not yet ‘cured’ but I am so much better than I was, that I can in many ways live an almost ‘normal’ life again – many of my worst symptoms have gone completely; others are still there either periodically, or in just the background, but not as disabling as they once were.

If only I had known more about Lyme in Britain and had requested treatment as soon as I was bitten; I might never have even had Lyme disease. If only I had been given treatment as soon as I did present myself to the NHS with my clinical history and symptoms, I might be cured by now. If I had not discovered the positive effects of that medication; further information about Lyme and been able finally to see a doctor who knew about Lyme, I could not have carried on – the severity of my symptoms after those 2 years of being ignored and rejected by the NHS was more I could have put up with any longer.

Now, these last 2 years of personal research and experimentation (and every possible thing I could do to improve my health and immune system) seem to have played off – but I still get no help at all from the NHS (except my GP); I still have to buy medications and supplements online (with no security as to their contents); I had to pay to see a private doctor (only once luckily and it actually cost less than all the money I have wasted travelling to see all these patronising, lazy and ignorant NHS consultants) – and it has taken so much effort, and time and energy that it would be hard for someone in perfect health to accomplish, nevermind someone so ill and disabled.

And as someone who used to work for the NHS, I feel shocked and disappointed and angry, and utterly betrayed by its response to the hundreds and thousands of people like me with Lyme and related conditions …

Current Location: Aberystwyth
Infected in: Aberystwyth