Well my friends, it has been a very interesting three months so I thought I needed to bring you up to speed with my recovery! (Ooh, it sounds great to say that!)
Frustratingly after my last post I deteriorated again and had about a month or more of being very poorly indeed. Classic case of doing too much and a big bacterial die off reaction from my new medication is thought to have triggered it.
Despite taking all my pills and potions, green juicing, resting, meditating, praying and so on, it was day in/day out flu-like symptoms again. Desperate times called for desperate measures and I had heard from multiple sources that maybe I could help myself by changing my diet further. So I said goodbye to sugar, carbs in all their other forms and dairy - having already become gluten free and grain free earlier on in the summer.
Well. The improvement has been almost unbelievable. Within 10 days the horrific fatigue that left me laying down every day in August lifted by about 80% - it was honestly like a miracle. Since then my recovery has been steady and I continue to feel improvements daily. Prior to this I was having to measure slight improvements month by month otherwise it was all too disheartening.
By the end of October I was able to drive short distances most days, walk Matty three out of seven days (my friend walks him on the other days) and meet up with friends without having to plan days after to recover. Wonderful!
October was a busy month with hospital appointments that are dealing with the aftermath of having a persistent infection for so long. But I seemed to cope well with train journeys up to King's and many many tests.
It looks like the Lyme bacteria has damaged the way my heart conducts electricity, but the hope is that this will not cause me any major problems.
My kidneys are also struggling. Let's face it, they have coped so well for so long with many different drugs to treat the Lyme disease, it's understandable that they need a rest.
So I have to take a break from treatment....just as I was getting better...AAARRGH!
The USA doctor that is currently looking after me likes to treat you for several months after you experience no symptoms of infection. I still have pain, muscle twitches and moderate fatigue so not technically there yet, albeit improved. There is not much I can do about it however, I've only got two kidneys and there is no point beating Lyme to spend the rest of my life on dialysis.
More patience and faith is required.
I am still on the waiting list to see one of the top Lyme doctors in the USA. The waiting list has increased and while I was hoping to be out there at the end of the year, I have been told it'll be more like April. My hope is that this doctor will be able to iron out all the last bits of this disease so that it never comes back again!
Having this as an option, even though I will have waited a year for the appointment, is only possible due to all you wonderful people who contributed earlier in the year. Not only have you insured that there is enough money in the pot for that but also you have covered much of the treatment costs over the last three months. Everyday I am grateful and thankful. Where would I be without you all?!
So that's all for now folks, sending you all love and thanks xxx
Well it's mid July and scorchio outside so I thought it would be a good time to update you on the last few months of happenings.
After another Skype consult with my USA doc, medications were altered and by the first week of June there was a definite improvement. Couldn't put my finger on it but everything just felt different. I went on to have almost 2 weeks of feeling the best I had in over a year - fantastic!
During these couple of weeks I managed to do normal fun stuff- see Ben Howard (no wheelchair required, yippee), have my lovely friend Gill to visit, do another Lyme awareness TV interview (ITV this time- http://www.itv.com/news/meridian/update/2013-06-14/lyme-disease-threat/), and meet up with a couple of new friends AT A PUB (lime and soda's all round). Basically more than I'd done in months!
Add to that the continual donations from clients and friends from Toachim Vets, plus Emma McAnally from Merial adding to the pot - I am still overwhelmed and feel very privileged to have so much financial and emotional support.
Even though after all this I went on to have a pretty rough time, I bounced back after about 10 days - just in time to get married!!!
Nick had secretly proposed to me a little while ago and we decided to plan a surprise wedding while we were in Scotland with friends. We have obviously been through some rough times and saw no need to wait - life is there for living! So we shared our special day with our great friends who helped us with a last minute wildflower bouquet, photography and music. These wonderful friends did not mind that I was back in my pj's within two hours of getting married, needing a few hours sleep to recover from all the merriment. Our kind parents paid for our rings and our time away, my dress was £3.99 from eBay - note to anyone out there getting married - it can be special and unique without costing a fortune!
The week away was wonderful, my body coped well and we saw some amazing wildlife - perfect.
It does feel like I have turned a corner, I am having more time awake, less pain and less recovery time is needed if I do anything daring (eg do some housework, cook dinner or meet up with friends, so actually not that daring!!). Some recent blood tests are showing that despite the general improvement, my body is finding all the medications I am taking hard and I spent this morning having some scans and tests, but I hope this is just a blip.
This Sunday our family are joining us at Nick's church for our wedding to be blessed which will be wonderful.
Onwards and upwards my friends!
Love and thanks for all your support from the new Sarah Bignell-Howse
I am so overwhelmed with what has happened over the last two weeks, everyone has been AMAZING.
I never dreamed that we would be able to raise £7000 and I simply cannot believe that this has been achieved in two weeks!
Firstly I need to say how grateful and thankful I am. You are all wonderful examples of human beings and I am so proud to have you as my friends.
The sum of £7000 was based on several UK people who had gone abroad for treatment. It is so hard to estimate for medical problems (as I know all to well when doing estimates at work) but I calculated that this would cover an initial appointment, blood tests and maybe 6 months worth of medicine (although this is VERY difficult to guesstimate). Of course I am ever optimistic that I'd get away with just one appointment and do the rest via Skype! I will keep the fundrazr site open and use some of the extra funds to pay for the on going medications which Nick has been funding so far, so thank you once again - I never dreamed that this would be possible.
The doctor who is looking after me out there at the moment is a lovely, knowledgeable Lyme Literate MD. We have Skype consultations but as he has never seen me in the flesh, I then have to take his recommendations to my GP and work with her. She is as helpful as she can be, within NHS guidelines.
Pretty much since my faculties came back to me I have been researching treatment, doctors and options. I have been placed on a waiting list to see one of what I call the uber Doctors in the States. That waiting list is 10 months long ie unless something amazing happens, it will be early next year before I get to see her.
My plan was to do all the ground work with my lovely LLMD and GP ie take the pills, go gluten/wheat free, physio, meditate, acupuncture and get back to work. Then as soon as the appointment came around heading out to the States to ensure I have done everything in my power to get rid of the damn bug once and for all (my risk of relapse is high as I have been so ill for so long).
I also thought it would take many many months to raise the sort of money I needed.
Well, all of your generosity has opened up more options- there are other doctors I could consider, and I could go out and see my lovely LLMD in person.
I've been quite poorly this week - my medication changed last week so we don't know whether this is a die off of bacteria (yeay!) or me sliding back a bit. Once I recover some energy beans I will suss out these new options and get back to you all.
Any money raised that is not used in my treatment will be redistrubted to other Lyme sufferers, so that they can benefit from your generosity too, if that's ok!
Thank you, thank you, thank you for your support xxx
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!
