The full back story for those who want to know!

 

 

As I sit and write this, it is eleven months since I have worked in my job as a Small Animal Vet.  I qualified from the Royal Vet College in London in the year 2000, and had been working hard and playing hard ever since.  I’d been blessed with good health and had many opportunities in and out of work – from setting up a charity abroad to travelling the globe.  I was rarely indoors other than at work. 

My life was toddling along just nicely thank you very much when after a fantastic summer trip around the UK in 2011, from Scotland down to the Scillys, I started to experience some problems with my hands.  I had numbness, tingling, some swollen joints and shooting pain.  To be honest, I thought I had developed some sort of repetitive strain injury after all that driving but the pain was severe and odd so I thought I’d better make an appointment with my GP.  By the time I saw her a week or so later, the same type of pain had hit one of my shoulders and it was presumed that I was just unlucky, damaging my shoulder due to over compensating for my weak hands.  Operating was put on hold, with my colleagues bearing the additional work like troopers, my boss being a star.  I dictated notes which were written up by my lovely nurses, the pain so bad I couldn’t press the keyboard without wanting to vomit in the sink – not an attractive trait for the clients. 

As I was waiting to see a hand specialist, the pain spread.  Always running linearly, sharp, shooting, burning pain which migrated, running along tendons behind my knees, my elbows, along my Achilles.  Driving to and from work was excruciating.  The pain would come and go, I had never experienced anything like it – it just did not make sense.

It made sense to one of my great friends and work colleagues however, who kept prompting me “Are you sure you haven’t got Lyme disease?”.  I had not had a known tick bite or the “classic” bulls eye rash which as it turns out is the situation of 50% of Lyme disease patients.

Well, nurses are ALWAYS right – this much I have learnt from my 11 years as a Vet and indeed she was right on this occasion.  After a few months of hanging out with every flavour of medic, a clinical diagnosis of Lyme disease was made.  This makes it sound easier than it was – once MS, brain tumours and motor neurone disease were ruled out, I was on my own.  Luckily I was armed with great training from the RVC which allowed me to ask for the right tests and seek one of the few people in the UK who have an interest in tick borne diseases.

High dose doxycycline was prescribed and I was like a new woman within weeks.  I took the pills every day and got on with my job and my life.  A new respect for ticks and their associated diseases was born and educating clients about tick prevention took on a whole new meaning.  I thought that was the end of it.

Unfortunately this was only a preview to the real horror of this disease.  In June 2012 I relapsed badly.  This time the pain was constant, still jumping around my body and always severe.  I struggled through work days for another week until I could no longer work, drive, sit or walk.  I was trapped in the upstairs of my house as the stairs were impossible to negotiate on my own.  Even opiods could not dull the pain.  My boyfriend – of only three months – had to wash me, help me to the bathroom, change my clothes and prepare food for me.  I was 36 years old.

My cognitive function deteriorated, I would phase out mid conversation and be unable to follow a train of thought.  If more than one person was talking it was like white noise and I spent many hours not knowing whether time was passing or not.  By this time I was experiencing nasty muscle tremors and erratic violent twitches.  I would lie in bed and weigh up how bad an itch was as to whether it was worth moving to scratch it.  I could not sit myself up or lay myself down.  It was like a nightmare.

A PCR sent to the states confirmed the clinical diagnosis of Lyme disease but I was advised just to continue the doxycycline and all would be well.  This proved incorrect in my case.  As the days and agony went on, friends would taxi me to have acupuncture in a desperate hope that this was where the answer lay.

My cognitive function began to improve and with it an ability to use the computer for short periods of time.  It was time to research how I could get my health back.

As it turns out, persistent Lyme disease is a massively controversial subject.  Too much to go into detail here, but the important points to know are these.

1-    ELISAs used are approx. 50% accurate – you essentially may as well toss a coin, they are no longer used by Lyme Literate Doctors

2-    Even if you test positive on an ELISA, your Dr may put it down to previous exposure and not do any further testing

3-    Once you get a positive result – usually and as in my case by sending your bloods to one of the biggest labs in the States- most of our GPs, Infectious Disease Consultants and Neurologists do not have the experience or knowledge to treat you.

4-    There is no one size fits all treatment, as up to 60% of people have co-infections such as Bartonella, Babesia and Ehlichia.  Ticks essentially inject bacterial soup into you when they bite.

Or-

1-    Tests are inaccurate

2-    UK knowledge within the NHS and private sector is sketchy at best

3-    There is no one treatment fits all

Thanks to the internet I discovered how I would be treated if I was in America and was able to present information to my GP which she thankfully acted upon.

Within three days of starting a combination of antibiotics, the horrendous pain I had been living with for 6 months lessened by 70%.  I was euphoric.  Six months away from the job that I loved, house bound and in financial difficulty, it seemed that finally the end was in sight.

Well it is and it isn’t.  A profound fatigue has hit and although I am no longer in so much pain everyday, it is like someone has taken my batteries out.  My heart has been damaged by the bacteria and although not as frequent, muscle tremors and twitches are still a daily occurrence.  I need to limit my activities.  If I want a bath, it can take me a day to recover.  Want to see friends – only possible with good friends as there is a good chance I won’t be well enough to make it.  The good days are difficult to predict, the bad days come too frequently.  I am still unable to drive the car regularly, I can go out with my dog for a walk once or twice a week. 

And sometimes the pain is back and so severe that I think I cannot bear another second of it. 

It is a good job I love my house, but to be honest, I’m a tad sick of my four walls – although grateful I still have them! 

Instead of fundraising for our charity in Spain, I now find myself in the embarrassing situation of fundraising for myself to get treatment abroad.  My brother has created an amazing video for the fundrazr site, see below and everyone is behind me so I'm going for it!

 

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Sarahs fundraising page – https://fundrazr.com/campaigns/eVfHb or search Fundrazr for the “Help cure Sarah” appeal.