The ups and downs of blood testing for Lyme disease – our personal battle | Guest Post by Karen Galpin (my Mum)

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.

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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

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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 results

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

  1. Email Armin Labs (info@arminlabs.com) 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.
  2. 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.
  3. 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.
  4. 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.
  5. Fill in the order form. Tick the boxes of the testsyou would like. You can email them if you are not sure.
  6. Fill in the payment form. You can either pay by credit card (there are charges) or by bank transfer.
  7. 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.

29 Comments

  1. Donna // Fibro Geek August 7, 2015 / 12:39 pm

    Sophia if you don’t mind sending it to me could you please email me your address? I would very much like to gift you a book- it is called “Suffered Long Enough” by Dr Bill Rawls, who is an American physician who suffered from Lyme and Fibromyalgia for many years. I appreciate that herbal therapies are not something that everyone wants to explore but the book has an all-encompassing approach and it a very interesting read that I hope you will find helpful.

    • Sophia August 11, 2015 / 1:20 pm

      Awww Donna that’s so kind of you thank you!! I’ll send you my address via twitter :) I am very interested in herbal healing, I’m about to start a herbal protocol for lyme actually! xxx

      • Donna // Fibro Geek August 16, 2015 / 5:17 pm

        I’ll happily send it to you. I have seen such improvement through the herbal protocol and I hope it does wonderful things for you. I’m not quite where I want to be yet but I have to remind myself to look back and see how far I’ve come. There are lots of positives :) The thing I need to remember is patient persistence

  2. Louise August 7, 2015 / 1:39 pm

    Hello Karen (via Sophia), I just wanted to register fellow feelings. I have been on a similar journey to you with a 25 year old daughter who received negative Porton Down tests in the summer of last year. We chose to pursue and my daughter started treatment with a German doctor in October, made strides until January, relapsed during the Spring, despite continuing treatment, and is now booked to visit a clinic in Washington DC later this month. It’s gruelling and destroys your faith in our medical system. My daughter also blogs but mainly in connection with her art rather than Lyme. You and Sophia might be interested to visit her post on her disease from November last year, when we thought things were improving… http://www.rkalbanart.co.uk/invisible-worm-flies-night-howling-storm/
    I think it’s Joe Burrascano who says that the testing is the most unreliable in those who are the most ill. Good luck to you both.

    • Karen Galpin August 8, 2015 / 11:36 am

      Thank you Louise. It’s comforting but also sad to know that others are in a similar situation. If you feel like getting in touch directly to share notes/stories please email sophia@spooniesophia.com and I will pick it up. The very best wishes for you in your search for good health for your daughter.

  3. Emma August 7, 2015 / 6:30 pm

    Hello Karen and Sophia,

    I’m so glad you now have answers and know for sure what is making Sophia ill. I hope you can get some helpful treatment now.

    Thank you so much for the step by step of how the test works. I was tested by the nhs back in 2010 and just accepted the results. It wasn’t until this year that we have found out about how unreliable the nhs tests are and although I can’t remember a bite, we do live in one of the highest tick populated areas and I was always an outdoors person, walking in woods etc. So we want to do the tests to find out for sure if I do or don’t have it. – this post is so helpful, I’m so grateful that you posted it. Thank you both for sharing.

    Emma Xx
    http://www.emmaslookingglass.com

    • Karen Galpin August 8, 2015 / 11:38 am

      Hi Emma. Please note the addition at the end of the post about blood tests for Armin labs now being coordinated by AONM. Best of luck with your search for answers and treatment x

  4. Natasha August 11, 2015 / 3:02 pm

    Excellent blog post outlining what we have to go through during the very confusing testing process and thank you SO much for mentioning Lyme Disease UK – much appreciated xxx

    • Sophia August 17, 2015 / 2:21 pm

      Thank you Natasha and no problem at all! My Mum is the best at explaining things :) Hope you’re doing well? xxx

  5. Suzanne August 31, 2015 / 1:42 pm

    Hi. Do you think there are ever any false positives from Armin Labs ?
    Im just about to get mine done to look for chronic Lyme
    Been seriously lll for 4 years? X

    • Pauline October 14, 2015 / 12:08 pm

      I would also like to know this as i am being tested as soon as they send me the kit out! I have had 2 negative tests through the NHS but i have been very ill now for 3 years and have been diagnosed with fibromyalgia which i don’t believe is the correct diagnosis. Have you had your results back yet Suzanne?

  6. Suzanne August 31, 2015 / 1:46 pm

    May I ask what kind of lyme treatnent you are currently on now? X

  7. Linda Geary February 9, 2016 / 3:06 pm

    Hi Sophia and Karen

    I hope Sophia is feeling well at the moment. My 23 year old daughter (Sophie)has recently receive positive Lyme results from Armin, thank you bringing the service to our attention through your blog. Sophie has been a follower of you for sometime. She was diagnosed with ME around 3 years ago but is slowly getting worse. We are planning on trying Hello Healing but would also like to ask what other treatment you are currently having and which doctor you are seeing. We are currently considering going to Brussels to see KDM. Please reply by email if necessary I know its difficult to post publically regarding Lymes treatment.
    Many Thanks
    Linda x

  8. Will February 22, 2016 / 4:39 pm

    I was recently informed that Armin Labs is not recognised as an accredited body and so test results from there will not influence NHS treatment.

    Would you be be able to comment?

  9. Chris February 22, 2016 / 9:07 pm

    Interesting read guys. My wife has been suffering symptoms for 16 years and coming close to the end of our tether. She has received negative results from NHS testing. I am about to order testing via Armin. Am I right to assume that if we get positive results for Lyme that the treatment will also have to be carried out by Armin??? Thanks

    • Sophia March 7, 2016 / 2:59 pm

      Hi Chris,

      I am really sorry to hear about your wife’s struggles. 16 years is such a long time, she must be an incredibly strong woman. No Armin doesn’t administer treatment – he only does lyme testing. Good luck for the tests, I hope you get the answers you are looking for! x

  10. Betty March 17, 2016 / 2:42 pm

    Hi Karen and Sophia
    Thanks so much for this extremely useful blog/blog post. I am about to order my test kit from Armin and wondered if you could help me with some questions about the conditions the samples need to be kept in. I read that the samples need to stand for 30 mins…..does this mean that you need to let them stand at the doctor’s surgery (or wherever you get your samples taken)? And regarding the room temperature aspect, how are the samples kept at room temp when they’re in transit (on their way to Germany)? I haven’t had much luck with getting timely responses from the AONM, so wondered if it was something you’d come across.
    Best of luck with everything…..I think you’re both brilliant!! Xx

    • Sophia March 17, 2016 / 2:51 pm

      Hello Betty,

      No problem at all! I am so happy to hear that you found it useful. I had the samples taken at home – we used a polystyrene test tube holder my boyfriend got from his work. But if you put the tubes into your polystyrene holder you get in the test kit and close the cardboard box and keep them upright that way that’s fine. And yes we did that for 30 minutes.
      Unfortunately you have no control over the temperature but it should be fine in transit.
      Good luck, I hope you get the results you want <3
      Let me know if you need anything else. Sophia xx

      • Betty March 24, 2016 / 11:33 am

        Thanks sooo much for this info, Sophia….. Really useful and reassuring. I’ll report back with results!
        Love Betty xx

        • Sophia March 24, 2016 / 11:53 am

          No problem Betty! Yes please do :) good luck xx

  11. Caroline June 18, 2016 / 4:16 am

    Hi, I got tested by the Armin lab a few months ago and got a positive result through the Elispot test. i’m from Canada and this lab was recommended by a Naturopathic doctor. Of course regular doctors don’t accept this result because they don’t know the test. They’re only familiar with Elisa and Western Blot, which are negative in my case. How legitimate is Armin testing? Do any doctors anywhere accept this testing?!! I am so lost…
    The Elispot showed +6 But it doesn’t do me any good if this test isn’t a proof for Lyme for doctors here. I do have family in Europe and I willbe travelling there in a couple months for treatment (hopefully) and to get more answers.

  12. Michelle Morris August 19, 2016 / 12:24 pm

    Hi Karen and Sophia, I have just come across your blog having gotten my test results from Armin today. However, now I am panicking a bit as I didn’t stand the tubes in a vertical postition after the blood was taken. I knew that it wasn’t to be centrifuged but I Googled this and thought it meant the tubes weren’t to be shaken. Now, I’m wondering if this may have hampered my results? I read nowhere that the tubes had to be stood! Sending good wishes to you both, Michelle :-)

  13. Jenna September 29, 2016 / 5:56 pm

    Hello! Thank you for sharing all this info with us. Are you able to share what specific tests you had and also whether you had to have your blood tests done at a certain time I.e before 10am so that they can be shipped and received in Germany by the end of the day? Many thanks and hope today has been a better one for you X

  14. Valerie Brock November 19, 2016 / 4:30 pm

    Hi Karen and Sophia,
    I just came across your blog over at Donna Grant’s February Stars on the post she did about Lyme. It is always a comfort and encouragement to read about the journey of others with Lyme. It took almost nineteen years for me to reach the diagnosis of Lyme disease. Thank you so much for sharing your story. Best wishes, Valerie

  15. Harminder January 22, 2017 / 8:39 pm

    Dear All,
    My son aged 27 has been ill for 6months. Through a lengthy consultation with a nutritionist who uses Armin labs he tested positive for Lyme.
    NHS GP doesn’t accept this as valid testing but have agreed to doing the NHS Lyme test (gets sent off to Cambridge). We await results which we won’t get until the end of January!
    My gut feeling is to start my son on doxycycline rather than delay treatment.
    I’d be grateful for any views.
    Thankful for all the sharing – it can be a distressing and lonely time for those having to watch loved ones suffering – I can’t begin to imagine how my son or anyone with Lyme (suspected or otherwise) must be feeling. Heartbreaking :(

  16. Marlene-Nancy June 3, 2017 / 9:44 pm

    Would be interested to know how you are Now.
    Am awaiting results from Portion Down via Tropical Diseases Hospital in London. Am retired SRN with tick bite January 2015. Bite and my concern not acknowledge d by
    Medical profession. Now, after 2 MI. Tinnitus. Peripheral Neuropathy, kidney disease stage 3. Kidney cyst. Loss of vision for two hours, profound deafness that comes and goes, have an absolute need to know what caused and what possible treatment although think it is probably too late to have much of a positive mpact on quality of life.
    “First, do no harm”……..

  17. Gavin June 26, 2017 / 10:47 am

    My sister is just about to have her blood taken privately tomorrow morning and Fedex are picking it up tomorrow afternoon for transportation to Armin Labs .

    She has been very ill for the last 9 months and has been diagnosed with Ms ( I dont agree with that diagnosis tbh )
    She has kept horses for the last 5 years and has various bites , horse flies , ticks etc . When i asked the doctor if they tested for lymes he said they did and it was negative , when i asked to look at the test result he couldn’t show me it .
    In my eyes she has definately caught something stealthy and progressive…9 months ago she was happy , horse riding every day , now she can barely walk due to chronic arthritis and that was after some months of eye problems and vertigo.She has had various Mri’s which show lesions on her brain and in her spine . ( lesions consistent with Lymes i might add too )

    She has been taking tablets for her Ms which lower her immune system and it makes me think that this is why the Lymes is progressing so quickly as she barely has any immune system to fight it off and it has now invaded her joints .

    I could be wrong but i have a hunch that im not and hopefully by the end of next week we will have an answer regarding the blood tests and maybe a definitive answer of why she is ill..

    Fingers x

    Gavin

    • Gavin July 3, 2017 / 3:24 pm

      Just had the results back today , the Elispot is level 3 on 2 of the tests and level 2 on the other which shows positive antibodies for Lyme Borrelia Burgdorferi . The Serospot comes back at negative for antibodies tho so am confused now…
      I know the Elispot is a newer unrecognised test but if it has come back positive on all 3 sections of it then is this a positive result…??

      Anyone out there shed some light pls

      Gavin

  18. Gavin July 19, 2017 / 8:51 am

    Just going to post a follow on in case someone needs a route to follow if they are doing the same thing….

    We visited a private clinic in Yorkshire last week where my sister was assessed and prescribed anti-biotics and other treatment. She has started to wean off the Ms drugs and feels preety good .

    Tuesday 18/7/17 visited rheumatoid nurse and showed her test results , also letter from doctor in private clinic confirming Lymes and after looking at all the evidence finally she has made a request through the Nhs for an appointment with the tropical disease clinic in Cardiff . It’s been along road swimming against the tide for so long at last we are making headway .

    Sister feels good almost weaned off the Ms drugs , slight stiffness from the arthritis ( taking a small steroid dose for this even tho it’s not advisable it’s quality of life and movement for now while we move forward )

    Will update in a few months …we’re all off on a well deserved holiday !!

    Gavin

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