The invisible worm that flies in the night in the howling storm…

It has been many weeks since my last entry, and in that time much has changed: from the warmth of high summer there’s now a definite chill in the air, the smell of fallen leaves, and the rich colours of autumn. And much has been happening ‘off canvas’, so to speak. Though I usually try to keep this blog focused on the paint and the pencil, I think now is the right time to digress briefly into the story of my illness so far, to share with anyone who follows this blog the suffering of thousands of people in the UK who have Lyme Disease and are unable to get diagnosis or treatment.

I received a bite 4 years ago, while lying in the long grass of my university grounds. I had never heard of Lyme Disease and I had no idea that ticks could bite humans or that their bite could carry an infectious disease. Despite a large red rash of 8cm across, I didn’t think to go to the doctor. Even if I had, in the UK doctors will only recognise a ‘classic bull’s eye rash’, which actually only occurs in 30% of patients with Lyme Disease. I also didn’t associated a flu-like illness which I had a week or so later with my mysterious bite. The second stage of Lyme Disease is characterised by psychological problems, as well as fatigue and physical weakness. But during my second and third years of university, I had no idea that my deteriorating memory, strength and stamina was due to an underlying bacterial infection. Instead, these symptoms were taken as by-products of depression and anxiety, which were themselves the effects of second stage Lyme Disease and not primary illnesses.

By the time the third stage of the disease had started, with frequent flu-like episodes, disabling fatigue and muscle pain, I had a history of mental problems and so one doctor after another dismissed my symptoms as psychosomatic. We suspected thyroid problems, Addison’s disease, MS, diabetes and of course were repeatedly threatened with a diagnosis of ME, which I knew to be a little understood and debilitating condition for which, cruelly, there is currently no etiology. Finally, in May, due to an awareness campaign, my Mum came across Lyme Disease, which explained everything – even down to bizarre symptoms like a sudden intolerance to alcohol beginning shortly after the bite, weird muscle twitches and inflamed knees. This seemed to offer hope – after four years of infection, Lyme Disease might not be completely curable, but at least we could hope that antiobiotics might provide some alleviation of the disabling symptoms. Imagine our dismay, then, when the NHS tests came back negative.

photo (5)We have since learned that the NHS tests are indirect – they test for antibodies rather than for the bacteria themselves. Unfortunately, in a long-term infection, the bacteria disable the antibodies and even erase any record of the infection. So, in effect you are trying to analyse the smoke detectors to see if there has been a fire, when actually the fire has broken and even destroyed the detectors altogether. Although we knew these tests were unreliable, it was hard to have confidence in the face of doctors who were keen to tell me that my illness was due to personality problems and having pushed myself too hard. It was only when a German doctor suggested that I sent my blood for darkfield microscopy, that we finally had scientific evidence of an infection – pictures in fact! In the picture above (and many others the lab sent me) the ‘invisible worm’ is finally exposed, here circled in red.

The NHS do not accept results from abroad, and even if they did, their treatment would be only be adequate for treating a very recent infection. So, since that blood microscopy my parents have driven me to the Netherlands to be seen by a senior German doctor who is looking after those who cannot find treatment in their own country. I am just starting treatment, but the road to recovery is not painless or guaranteed. However, at least I know, even if I cannot make a full recovery, what my body has been fighting for 4 years, quite apart from the stigma and stereotyping of doctors and various others. I am sorry for anyone who has missed out on an arty update, but I felt it was important to share this, because of all the people out there who do not have the confidence to stand up against arrogant doctors, who do not have families to assure them that their symptoms aren’t psychosomatic and who don’t have the money to treat themselves if they are diagnosed with Lyme Disease. Please watch this video to learn more, and if you share my concern for those who are suffering without diagnosis or treatment, please sign this petition.

Next time – a return to all things painterly! I have only been able to produce one painting in the last two months – my first canine commission – which I will share in my next post. In the pipeline is another portrait and a commission to draw a very special cello.

 

4 comments

  1. Thank you for a well written description of what many thousands in the UK are suffering because of lack of awareness and knowledge about this dreadful disease. It took 4 years for my doctors to diagnose me with Lyme Disease even though I attended surgery with bites, Bulls eye rashes summer flu and migrating arthralgias before a full blown chronic debilitating disease set in – mis diagnosed with Fibromyalgia, ME/CFS, Musculoskeletal disease and Polymyalgia rheumatica which resulted in steroid treatment for 20 months a positive no no when struggling with a bacterial infection – I steadily recovered on long term antibiotics once diagnosed with Lyme disease but it was a marathon.
    Stay strong and firm in your belief and listen to your body, good luck.

  2. Rachel, I was directed to your post by your mum who had commented on a post that I wrote on my daughter’s blog about blood testing in the UK and Germany (www.spooniesophia.com). Your story and history certainly sounds familiar to that of my daughter. If you or your mum would like to get in touch at any time to share stories or knowledge, please email sophia@spooniesophia.com and I will pick it up – no obligation of course. I wish you every luck on your journey to getting your health back. Best wishes xx

  3. Hi Rachel. Your mum sent me the link to this article after speaking to her on the Lyme discussion group. Your story resonated with me, not least because I was recently studying to become an art teacher when my symptoms became so bad they stopped me from attending uni, hopefully I can pick up again when I get better.

    Right now I am in the relatively early stages of Lyme, after being bitten over a year ago and only finding out about the disease in January. I can identity with the symptoms and the difficulties you went through trying to get a diagnosis. In a world full of sceptics, speaking to your mum and people like her has been a great source of comfort.

    This journey feels a lot like a rollercoaster, a really bad rollercoaster. My symptoms are up and down as well as my spirits but I have to remain confident I will get a diagnosis and treatment. Giving up is just not an option I’m ever willing to consider.

    On a much brighter and lighter note, reading your blog led me to take a look at your artwork. Your work is exceptional and I love your subject matter, particularly the birds. I used to spend hours drawing birds. Unfortunately I’ve spent the past five years working as a graphic designer so I find little time to draw anymore but after seeing your work I feel inspired again.

    You should take a look at http://www.thequietrevolution.co.uk/ Her paintings of birds are fantastic.

    If you ever feel like chatting then feel free to drop me an email, I’m always happy to talk art.

    I hope you feel better and wish you all the best in your recovery. Sending you and your family my best wishes.

    John

  4. Rachel Alban says:

    Dear John,

    Thank you for your comment and apologies for my delay in replying – I’ve been very ill this week having gone back on treatment after a five week break. I’m sorry that Lyme has similarly got in the way of your artistic career but I would hope you have a very good prognosis having found the Lyme support group and on your way to a diagnosis after only a year ( I say ‘only’ – on the continent they would be horrified that you had been ill this long, and I’m sure you’ve suffered terribly in that time, but I hope you will find treatment to be really effective).

    Your comments about my work are very kind and I was interested in the link you sent – Claire Scully has very distinctive penmanship which manages to be both stylised, yet precise and realistic. I hope you feel able to get back to your art soon, but I understand that, although from the outside it looks like a very low-energy activity, you actually need a emotional and intellectual vigour for art work. I am only able to paint on my very best days.

    I wish you the very best in your journey – it really is a roller coaster and even on treatment improvement isn’t steady and smooth. But I hope you can keep going through the ups and downs knowing that you have lots of companions going through the same thing.

    Similarly, feel free to contact me at any time via my website. Best wishes and good luck for everything,

    Rachel

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