What makes it ironic is that I’d read an article about the Spaulding centre in Boston who set up a centre to focus on the residual symptoms of Lyme disease using various professionals to treat all of the symptoms eg physical therapists, cognitive training etc. I’d taken this on board and was seeking out ways of dealing with my various symptoms as they very closely matched the Lyme disease patients. I STILL didn’t get tested.
When I finally decided to be tested I thought it’d be as simple as going to my GP and asking for a test or a referral.
I looked into it a bit and soon found that the tests in the UK are notoriously unreliable. Perhaps around 50% accurate plus have a risk of false positives. I didn’t want to risk this so I looked into private testing options. There are various private labs in the UK which offer the same tests as the NHS, but I didn’t see the point in paying for something that was so inaccurate.
It seemed that most of the expertise was in Germany or the US.
At first I found this a little daunting as
– 2 would I need to go there in person?
Before taking the plunge I filled in Dr Horrowitz’s checklist which is supposed to give you an indication as to whether you should get tested. My score was very high so I decide I needed to at least discount it. As an aside his book, Why I Can’t Get Better, gives an excellent overview.
I finally decided upon a German lab called Armin labs. It was far more accurate (around 94% specificity) and also didn’t have the same risk of false positives. In fact Dr Amin, who set up the lab was recently invited to the UK to advise the lab that the NHS use. There were also a number of scientific studies explaining why using this different method of testing was more accurate.
As it turns out the process was fairly simple. I was able to arrange everything via a UK office. A test pack was sent to me. My GP agreed to draw the bloods at my normal surgery and FedEx collected them.
It wasn’t as expensive as if feared.
The basic Lyme disease test was around £150 and based on my symptoms I also decided to be tested for a few other things at the same time, which I paid for in addition.
I did hear a doctor say that said ‘all foreign tests come back positive so they can’t be correct’. I am aware of some people who have had negative results so I know this isn’t true, however even if the doctor had been correct in saying he’d only seen positive results this doesn’t surprise me as 1) people are more likely to share results with a doctor if they are positive 2) before making the decision to pay for a test most people are likely to have a reasonable belief they do have Lyme disease.
As someone living in the UK I’m not used to paying directly for my medical care so this was a big decision. I am glad that I took my health into my own hands and arranged for the test. After all I only have one of me!
If you have a chronic illness and are concerned about Lyme disease you can read about the testing options here.