In June this year I found myself emerging from our local GP’s surgery with 6 vials of my daughter’s blood, still warm, in a box under my arm. Such is the cruel nature of our Lyme Disease journey.
Experiences of testing in the UK
Let’s rewind almost a year to that day in July 2014 when my daughter Sophia’s Immunoblot blood test results came back from RIPL (rare and imported pathogens laboratory) in Porton Down Wiltshire, courtesy of the glorious NHS. This test is standard procedure if a patient with suspected Lyme has previously had a positive ELISA test and continues to show clinical symptoms, as was the case for Sophia.
The decision to undertake the ELISA test came after over a year of trying to find out what was causing her new symptoms of debilitating fatigue, muscle aches, headaches, dizziness, raised temperature, tinnitus, sound sensitivity, motion sickness, to name but a few. She was visibly incredibly poorly. Sophia has had chronic neuropathic pain from the waist down for several years, which she copes very well with, but this was different. This was new and unknown and I worried about it – a lot. Thankfully, her very patient and switched-on pain consultant suggested Lyme but I must admit, due to it being largely unknown and quite ‘left field’, we were very sceptical.
The ELISA test came back positive for IgM which was a shock. We had thought ‘let’s just do this test to cross it off the list and move on’. Understandably, there was a period of contemplation, adjustment and acceptance after which Sophia was given a 2 week course of doxycycline – the recommended antibiotic for Lyme disease, according to NHS guidelines. Having read a bit about the disease, I realised that this would not be sufficient and persuaded her consultant to extend the course to 4 weeks.
There was little improvement afterwards so it was decided to run the Immunoblot test, again at Porton Down, having waited a minimum of 6 weeks from the end of the antibiotics (we waited 8) which was the recommended delay between testing.
Having accepted the previously positive diagnosis, it was both confusing and devastating to receive the news that the 2nd test was negative (“Lyme disease appears unlikely” was the comment attached to the report). So she didn’t have Lyme after all. Or did she?
By this time I had read more about Lyme and read various posts on the Lyme Disease Discussion Group on Facebook (thanks to Louise Dean, Natasha Metcalf and many other contributors) about how inaccurate the UK testing system is. Time and time again, people with Lyme symptoms were receiving negative or inconclusive results and going on to be tested successfully in Germany and America. This had to be the way to go to find out once and for all.
The POTS diagnosis
Unfortunately, at this point in time Sophia’s health was deteriorating further and she was both physically and mentally exhausted by all the appointments, tests, and consultant visits. It was at this time that she was also diagnosed, after a tilt table test, with POTS (postural orthostatic tachycardia syndrome) which she felt was enough to deal with for the time being. Plus, her new POTS consultant dismissed the idea of the condition being caused by Lyme: “It can be caused by any number of things. Best not to dwell on why you have it but focus on getting the medication right to make you feel significantly better”, he suggested. (Incidentally, it was Sophia’s idea to get tested for POTS, having read about the symptoms on the internet. Nobody else suggested it!)
And so the rest of 2014 and early 2015 passed and Sophia concentrated on adjusting to the various meds prescribed for her new condition, but achieving only a small improvement in her many symptoms – notably a reduced heart rate – and sadly no noticeable improvement in her quality of life.
Getting tested in Germany – Armin Labs
We started talking about testing for Lyme again recently and, understandably, Sophia was hesitant. Being chronically ill with very little energy for everyday life let alone medical intervention, and with a history of several years of no-through roads encountered along our journey to find answers to her health problems, I could see where she was coming from. Plus, the nature of her illness means that dealing with stress and emotional situations are difficult.
In my own mind I knew it was a box that hadn’t been properly ticked and that there would never be a perfect time to do it, but equally I didn’t want to waste any more precious time without knowing for sure whether she has or hasn’t got it. So I gently persuaded my daughter to go ahead with just one more test.
And so I found myself waiting by the front door for the DHL man on that Tuesday morning in June to hand over my daughter’s precious blood to be flown all the way to Germany for some unknown lab technician to analyse. (see paragraph below on the mechanics of sending bloods off to Germany)
The wait for the results was agonising. Sophia had travelled down to her home in Falmouth to be with her boyfriend and messaged me regularly asking whether they were back. After just over a week they were. And what a shock that was.
The pdf attachment to the email from Armin Labs contained 4 pages. The first page covered Borrelia burgdorferi seraSpot IgM results and showed 22 negatives, 0 positives. So she doesn’t have Lyme then?
Pages 2-4 contained various blood count results, CD57 Flow Cytometry and Borellia Burgdorferi Elispot results. It was all very confusing and I needed help to analyse it, but one comment, translated from German into English, read “the results for the EliSpot tests are an indication for an actual cellular activity against Borrelia burgdorferi”.
My daughter has Lyme disease – fact.
Let battle commence
And so the battle begins. Not just the battle against this vile disease but against the medical system that doesn’t understand it. I will read everything there is to know about this evasive and incapacitating disease in my quest to gain back the health and happiness that it stole from my daughter – forewarned is forearmed!
Sending bloods off to Germany – how it all works
- Email Armin Labs (firstname.lastname@example.org) to ask for a blood testing kit to be posted out to you. It normally takes about a week to arrive. The kit contains several vials, packed in a polystyrene container, together with shipping paperwork.
- You will need to ask your GP or medical consultant to arrange for blood to be taken at your local surgery or hospital. They need to understand that the blood will be taken away by you for shipment to Germany. The blood needs to remain at room temperature and not be centrifuged.
- Once the pack arrives and the appointment is booked, call your local DHL office and make arrangements for collection (either from the surgery if you want to wait there or from your home). Armin Labs have an account number which you can quote and the shipment is paid for by them – you include this shipment cost on your order form.
- Fill in the airwaybill that comes with the pack (all instructions are enclosed). You will need to add the dimension of the box, the weight, your details etc – again, there is an explanation in the box with diagrams.
- Fill in the order form. Tick the boxes of the testsyou would like. You can email them if you are not sure.
- Fill in the payment form. You can either pay by credit card (there are charges) or by bank transfer.
- When the courier arrives, hand over the bloods and wait for the results by email (normally 1-2 weeks).
Update 7 August 2015 – All blood tests for Arminlabs are now being coordinated by their UK representative, AONM – the Academy for Nutritional Medicine in Harley Street, London.