Hi! This is just a very short update to fill you in on the last few months. I have nearly completed a 6 month neuroplasticity course where I have essentially been rehabilitating my brain. It has been life changing!
Lyme disease directly affects the brain and I am so pleased that doing the brain physio has improved the quality of my life.
Returning to work feels closer than it has in the last few years - happy days!
A few days ago my wonderful friend Tracy dropped me an email to let me know she was running another 10K race to raise awareness and money for my ongoing medical bills this year. I am so touched by her thoughtfulness and courage in taking on another race.
A very important part of healing my neurological system is not thinking about symptoms - whether it be pain, sensitisation to noise or fatigue- and not discussing them which is why I have had to leave my blog for a while and why I opted not to actively fundraise myself so far this year.
However I absolutely have to post to say thank you to Tracy and all her supporters, without you I would not be here now, dog on my lap, looking ahead into the future. I will be forever grateful.
Hello! Wow, those two months went by so fast :-) All good here at AnyWhichWay HQ. My trip out to see my Dr last month went very well, she continues to be pleased with my recovery - as are we!
At about the same time as we were flying across the Atlantic, my fabulous friend - Dr Dave Tittle - was pedalling his heart out, putting the miles in for the Any Which Way Challenge.
Dave spent October 18th at his Veterinary Hospital astride an indoor bike and pedalled for over 10 hours. This challenge was called The Sufferfest and involved 10 gruelling cycling video challenges.
We were never in any doubt that he would complete the task!
He also knocked another 146 miles off of our target - amazing!
So many people helped Dave on the day, especially Andy U, Louise and Ben, Nina, Jon, Ellis, Geraldine, Andrew B, Phil, Lisa Marie, Kate, Claire, Gina and Rob. To all of them and everyone who else who supported and donated - thank you! You are wonderful people!
Sir Dr Dave - as we now have to refer to him ;-) - raised over £1000 as his epic challenge even went Stateside and when we arrived Dean, Caroline and Amy made a really generous donation to his fund. As did the Doskis family! We were so overwhelmed by such generosity and it was really lovely to meet them too. Thank you never seems to convey how grateful we are to each and everyone of you xxxx
Dena, Greg, Margot and Phee also must get a mention as for the second year in a row they let us hang out with them while we visited my Dr. This saved us a fortune in hotel bills but most importantly gave us the chance to spend some quality time in their family. Love you all.
Huge thanks also need to be sent out to Pam and Terry, Angela and Tom, Kath, both my family and Nic's family for all their love and support - financial and practical!
To every single one of you who has helped me over the last 4 years - I am so incredibly thankful.
I am loving the improvements I am making and really excited about the future. Watch this space xxx
Friday, 18 September 2015
An Autumn Update
It's been a very hectic six weeks filled with lots of incredible triumphs from the Any Which Way fundraisers.
Firstly the Legend that is Andy Cairns raised over £1100 by running 92miles in less than 24hours. It was such an amazing achievement and we are all so proud of him!
Next up came Paul who completed his third marathon triathlon this year, bringing his total of miles up to around 90 and raising over £650 in the process. Paul, I owe you a large scotch!
It was then my husband Nic's turn to take part in the challenge. He opted for a sprint triathlon at Bodiam Castle, the swimming part of which was around the moat :-) My step daughter Lilly, super friend Em and I had a great morning watching Nic and Andy compete. He managed to raise £690 and take 16.5miles off our challenge total. Epic.
So, my fantastic friends have covered over 1000 miles and raised over £3940!
To Matt, Tracy, Laura, Emma, Andy, Paul and Nic and all of their supporters - THANK YOU!
This has taken a huge worry off of our shoulders as my next appointment in the USA is in 3 weeks time. This should cover the majority of the tests and appointments that I need.
Our next challenger is Dr Dave who is going to take part in an event called The Sufferfest! This is going to be as intimidating as it sounds, with Dave spending October 18th, cycling on an indoor bike for over 11 hours continually. He is a big part of his local community (being the Super vet that he is) and is already generating a lot of support. Read more about the challenge here - http://www.thesufferfest.com/sufferlandrian-community/knights-of-sufferlandria/
All the miles he notches up will count towards the Any Which Way challenge - we still have 2547 miles to go - no pressure Dr Dave ;-)
In other news I managed to take part in an awareness piece on Lyme in Woman magazine a few weeks ago and will be speaking about Lyme at an evening event sponsored by Merial. I still have days when I am very symptomatic and doing these sort of things can result in a week flat on my back however, if my story can prevent others from treading this path then it is totally worth it!
Thank you once again to everyone who has supported my quest to return to full health, you are all superstars!
Warning! This may be a more serious post than folks are used too...
First things first, I am continuing to do well. I'm on some pretty heavy duty medicine at the moment which has taken a bit of the shine off my good days but it is necessary and not forever, so I can take it! Every moment that I'm well enough, I am squeezing in as much time with friends and family as possible. It is so lovely to be able to do so many fun things and I am forever grateful. Sometimes the horror of the last few years comes back to me and I just cannot believe I am here, mostly pain free and mobile. It is a huge blessing and unlikely to have happened without everyone supporting me as you all have, so again THANK YOU!
Paul and Laura are still undertaking The Any Which Way Challenge and they have been joined by Andy Cairns who is running in a 100mile race next Saturday. Just for an extra challenge, he is aiming to do it in under 24 hours......total madness! He has set up his own fundraising website - http://www.youcaring.com/sarah-bignell-howse-381076 and is doing an amazing job, with £338 raised so far.
Meanwhile my husband is planning on taking on his first triathlon in September, with Andy, so more on that another time.
My next appointment with my Lyme specialist has been set for October and with it, the necessity of finding the £4000 we still need to fund it. I have spent many hours in the last few weeks investigating grants and loans that are available to individuals. So far I keep arriving at the same brick wall.
Everything that we don't need is on ebay and a wonderful friend of ours donated lots of about to be skipped goods which are also on ebay.
We still have several friends helping us by undertaking the Any Which Way Challenge later in the year and my parents have fundraised, with their friends donating too.
I am struggling to work out what else I can do to find £4000 and hoping that someone, somewhere may read this and have a bright idea they'd like to share. If you do, please don't hesitate to get in touch. There MUST be a way to make this happen.
Meanwhile Lyme is popping up in the news more frequently and hopefully bringing with it awareness and better chances of you or your loved ones being able to prevent ending up in this situation.
Another 95 miles completed in our transatlantic challenge! Slowly but surely, we are getting there!
This time it is thanks to Paul, Laura and new warrior Emma.
Paul took on the Windsor triathlon, the second of three he is taking part in. There was a 10km run, a 42km cycle and a1500m swim in the River Thames - not for the faint hearted and pleased to say he survived! Thank you Paul xxx
Laura is made of steel as she battles multiple injuries in her quest to climb all the mountains over 3000 feet in Wales. Her latest conquest took her over the Llanberis path on Snowdon, amassing another 17 miles and 4 peaks in 12 hours. You are a super woman Laura, thank you!
Emma embarked almost a month ago on a pilgrimage across Spain. Yet another friend dating back to our time at the Royal Veterinary College and who now lives back in Canada. She has very kindly donated her last 100km (62miles) towards our Any Which Way Challenge. Her updates have been filled with beautiful photos and sheer grit! As I write this she has only 20km left - and has lost more than a few toe nails.... Emma, you are hard case - thank you for continuing the multinational theme of the AWWC!
To everyone who keeps supporting all my wonderful Challengers, thank you. I have had two really good months health wise and am on the next layer of my treatment. So far, no nasty side effects! Sending you all love, Sarah xxx
I'd like to introduce you to next victors in The Any Which Way Challenge - Tracy and Amelie!
In the middle of May Tracy braved her first ever race which she ran as part of the AWWC to fundraise and raise awareness for Lyme disease. Her supporters raised over £900 in an amazing show of generosity. Again, I thank you all so much. Amelie took part in the mini mile too, bless her little legs!
For me the best part was that I was well enough to travel and cheer them on! This would have been unthinkable three months ago and really shows how far I've come.
The isolation that Lyme brings is something that you have no choice but get used to. Part of it is the extreme fatigue (I don't mean tired, I mean, do I have enough energy to put a wash on or have a shower?). The pain and immobility means that driving is difficult for me. I was reliant on others to ferry me around if I was up to it which wasn't very often. Throw in the noise sensitivity and confusion that it brings and you can see why Tracy and I have not seen much of each other in the last 3 years!
It was a very emotional day and I loved it being part of it. Thank you Tracy xxx
In other news...
Paul Smith was also busy starting his part in the AWWC. He is doing not one, not two but three triathlons! The first one has been successfully completed. It was the Snowdonia Slateman which involved 1000metre swim across a very cold lake, a 51km swim and a 10km run. Crikey! Of course, he totally nailed it and warmed up in the hot tub afterwards :-) More photos to come and next challenge is 14th June and involves swimming in the River Thames. Rather him than me.
Sadly Andy is injured so the Ultra marathon planned in June is off. He's discussing a kayak challenge with my husband so watch this space.
A new addition to the team is Laura Klimaszewski. In June she is going to tackle the Welsh 3000's which involves climbing 15 mountains in Wales, usually within 24hours!!! This challenge is only suitable if you are an experienced and very fit mountain walker, which luckily Laura is! She is fundraising for me and also for her local search and rescue team. I'm so excited for her and very jealous, this sort of challenge would have been totally my thing a few years ago. It is now on my list of things to do to celebrate my recovery.
Well, that is all the Any Which Way Challenge fundraising news for now! If you are feeling inspired and what to get involved, please let me know!
As you may have read, our transatlantic challenge began in earnest last month with the legend that is Matt Hogg undertaking a dirt bike adventure in the Himalayan mountains with some of his buddies.
The news of the devastating earthquake arrived to me by Matt himself and never have I been so grateful for facebook. Matt had just returned to Kathmandu after successfully completing part one of his trip and his girlfriend Kim was due to arrive that evening. The day before he and his friends had travelled directly through what would be the epicentre of the next days earthquake. Really scary stuff. We were so thankful that all the team were unhurt especially when so many others had lost their lives, our hearts go out to everyone in Nepal.
Kim and Matt were due to hike in the foothills of Everest for the next 3 weeks but wisely followed advice to leave Nepal so this adventure remains on their to do list.
Matt covered 745 miles over ten days travelling through the villages and national parks. He took in the massive scenery, friendly wheelie encouraging locals (Matt fell off and needed xrays!) and gruelling, rocky terrain. I think one of his posts on facebook speaks for itself "This is the best motorbiking I have ever done by far, I'll be back!".
Matts friends and family raised over £500 towards my Lyme treatment funds and I would like to give a big squeezy hug to them all for supporting me. Below are some of Matts photos from the trip which he very kindly allowed me to share, plus a link to an interview they both gave just after the earthquake.
Next blog will be concentrating on the amazing woman that is Tracy Griffiths. She is running a 10k and her two children are also taking part in a mini mile. Her friends and family have raised over £600 already. I'm also very excited as at the moment it's looking likely that I'll be well enough to go and cheer them on...more to follow xxx
Hello lovely friends, Spring has sprung and it is now time to launch our new fundraising idea!
Back in 2013 I fully intended and expected to be back at work by now, financing any on going treatment that was required myself. Frustratingly this is not yet the case. Our fear is that without continuing the treatment I could relapse back to where I was and the thought of that is terrifying.
After receiving a few nudges from friends who were aware of our overdrafts and our worries, we decided to launch the Any Which Way Transatlantic Challenge!
I have to travel 3588 miles
across the Atlantic to see the Specialist who is helping me heal. My friends suggested that theymatch this journey
mile for mile on foot, boat, bike, horse, kayak, 4x4 to name but a few and
raise much needed funds.
The idea, as always with this kind of thing, is that if we get enough people to donate a few quid then no-one is out of pocket but a huge amount of money is raised.My treatment costs £600 a month and I have to head back to the States during 2015 for repeated tests not available in the UK.
The first few events have already begun!
Meet some of the team –
Matt Hogg-our Aussie friend- is donating his miles from a Nepalese dirt bike challenge in April, and fundraising has already started! (BREAKING NEWS- OVER £400 RAISED SO FAR!) Pictures and updates imminent :-)
Dr Dave – hot off the press, Dr Dave is intending on taking on the huge Sufferfest at the end of the Summer (and may become a Knight of Sufferlandria in doing so!)
Andy Cairns has already run an Ultra marathon in Devon last month, starting our mile countdown off. 40miles down, 3548 to go!In June he is running a second one – cos that’s just the kind of hero that he is.
Del Barker- our Welsh pioneer- planning on running the Brecon Beacon Ultra Marathon in November, followed by a possible Arctic jaunt (watch this space).
Sarah’s Mum and Dad are holding a coffee and cake morning, trust me, Mum’s cakes are delicious, they are in for a treat.
Egerton Running Club are holding a 24 hour Spin-a-thon.They are hoping to chew through the miles and raise plenty of cash whilst doing so.
Paul Smith is taking part in two (yes, two!) triathlons this year, knocking off a further 60miles towards our goal.
WE NEED YOU!
The more the merrier for this challenge – 3588miles is a huge target but we know between us it is totally achievable. Anything goes for the Any Which Way!All ideas welcome, you don’t need to be sport mad to join in, just a tad creative eg have a coffee and cake morning – for every £1 you raise, 1mile is achieved – easy!
There is a fundraising page all set up https://www.youcaring.com/medical-fundraiser/sarah-s-lyme-recovery-/300766 so all people need to do is donate straight onto the page.If you are having a coffee morning/car boot/Tango party (the dance or the drink, your call) then it’ll be a case of you paying the money raised onto the page.
Please join us or sponsor one of our heroes!
Those of you who know me understand how determined I am to get back to the job I love.Long term illness is very isolating especially when you are an active member of the community and more than anything, I want to embrace the life I can see waiting just around the corner.
Please get in touch with me via Facebook or email – sjbkent@hotmail.com if you are able to take part in this challenge or if you want any further details.
Our trip out to the States seems quite a long time ago now so thought I would touch base with how things are going.
The results from the many many lab tests came back about the middle of December and I had a 2 hour Skype call with my Doctor to discuss them. Although she had warned me about the multitude of problems we were dealing with, I had been a tad on the Pollyanna side - hoping that the situation was not as complicated as she suspected.
Her many years experience and thoroughness examining me meant in this case she was bang on and I needed a bit of British stiff upper lip after seeing the results in black and white (and some reassuring hugs from my lovely husband!).
In many ways it is reassuring to know that it was not just bad luck which resulted me being so seriously unwell. We now know that it is a combination of three tick borne diseases, a zoonotic disease, biotoxin illness, autoimmune disease and some pretty interesting genetics. Layers of an onion indeed!
Treatment can trigger worsening for a while so the usual rollercoaster of good days, bad days, good hours, bad hours looks set to continue for the time being. This can be very confusing to people "But you were ok half an hour ago?!" and the unpredictability of it is still right up there on my list of what frustrates me the most :-(
Still, it is best to know what you are dealing with, especially when you finally have someone experienced on board who can look at the whole picture and who has a plan. I do love a plan.
I have been forewarned that the road ahead is still long, I will need to continue to work as hard as I can to recover but continued improvement and ultimately a full recovery is expected - yippee!
So that's me for the time being, I'll touch base again in a month or two all being well.
In the mean time, as ever, thank you for your love and support. You are all awesome :-)
Well it was a long time coming but our time in the USA flew by so quickly, it seems almost unbelievable that I'm back home writing this update!
We were delivered safely to the airport by some wonderful friends and got lucky with an almost empty flight so I was able to lie down - fabulous :-) Even though the flight really wasn't that long it was quite a strain and made me realise how much harder this journey would have been physically even 6 months ago.
After a great night sleep we hit the road and my wonderful husband drove us out of the city via Manhattan as the New York marathon was on. It was a bit bonkers looking out of the window at the Statue of Liberty!!
Thanks to recommendations from friends who had also made this pilgrimmage, we settled quickly into our new home. The view from our window was across a nature reserve and the trees were wearing their beautiful Fall colours while birds of prey flew overhead - doesn't get any better than that!
The appointment with the doctor was the next day and crikey, it was thorough. I had to take some breaks to lie down before, during and after as no avenue was left unasked about or examined, the initial appointment taking 3.5hours! Over the next few days there were more blood and lab tests but I was in good form so we were able to squeeze in some lovely walks too.
The doctor was very optimistic about my continued recovery and felt that my long term prognosis is good - it was like music to our ears and we both felt quite emotional to now have an expert looking after me.
While we were waiting for various medications to arrive we were lucky enough to catch up with some friends of ours who we haven't seen in over a decade. It was just brilliant to hang out, chat and be looked after -forever grateful to them.
As a very special treat another of our wonderful friends had arranged a night in the Big Apple for us before we headed back home. This was so kind and generous and we had a great time checking out Times Square and Central Park. The photo at the top of this blog is from the staircase where we were staying :-) Thank you again Fairy Godfather!
So, here I sit, Matty by my side on the sofa. The journey has knocked me around a bit so I am taking it very gently. I started all the new medications a few days ago and am awaiting all my test results. It seems like the pieces in the jigsaw puzzle are finally fitting into place and although I have to continue being patient, I am excited to be on my way back to full health.
Every day I count my blessings for all your help and support. Thank you just doesn't even cover it!
I'll keep you posted and in the meantime, consider each and everyone of you hugged xxx
A very quick update to let you all know that I have finally got the appointment with the specialist in America!!!
I almost couldn't believe it when I got the call, it seemed like it was never going to happen.
It's a bit of a team effort with my lovely husband, family and friends to get everything organised so it will be a busy few weeks.
We have so much hope that this will be a real turning point for me and once again I want to thank you all for making this trip possible. Your support and encouragement has really lifted me during some very dark days, honestly, you've no idea how much it has helped.
We go in November so I'll let you know how it goes! Sending much love to all xxx
Just a little update for all of you kind friends, I know it is somewhat overdue!
I had hoped that by this time I would have had my long awaited appointment in the States and would be writing to let you all know how it went. Unfortunately, due to a combination of the doctor changing premises, illness and even the very bad weather over winter, my wait continues. No date in the foreseeable future and I have been on the waiting list for 13 months.
Despite this set back my wellness team (now consisting of an endocrinologist, nephrologist, cardiologist, nutritionist, acupuncturist, GP and USA Lyme Doc - via Skype) continues to help me make improvements.
I'm much more mobile and have less days flat on my back in pain. The good days way outweigh the bad days. Good days can involve 4-5 hours in the morning when I can feel pretty good, walk Matty, do light household chores and catch up with friends/family. I still need to rest for several hours in the afternoons but tend to rally for a few hours in the evening too. Bad days, well, you can probably imagine :-( To give you an idea having a shower requires the rest of the day in bed to recover. Gives a whole new meaning to patience!!!
I have been so much improved that Nic and I even risked a week away together - our first one ever on our own. Luckily Nic is very used to carrying everything and looking after me so not only did I manage, but I felt pretty good for 5 out of the 7 days - fantastic!
Most of the money you helped raise (about £8000) remains safely tucked away for our appointment in the States when it happens. The rest has paid for my on going medications and appointments so far, without which I wouldn't be sat here writing this! So I send you all my thanks again, and gratitude. I'll keep you posted.....
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!
