#takeabiteoutoflyme - my final post, pics and facts

The Lyme Disease Challenge continues throughout March......... Maybe beyond.....

March has been about the Lyme disease challenge: #takeabiteoutoflyme.  I had a few 'issues' with my shoulder/ scapula last week so I didn't manage to do the editing and writing for the sequence I'd planned - but here they are, better late than never!  I'm wrapping things up - for myself - in terms of the challenge because I am having wrist surgery on Friday.  I plan to write a quick post about that before then, right now it's back to Lyme awareness

Here are my final two photos and facts:

I don't often crossover between the Lyme FB page I set up and my personal stuff, but it seems appropriate here.  This was written for GoLymeGreen - the facebook page I will use to bombard everyone with more information come May, while also trying to talk you into changing your cover picture or profile picture green for Lyme awareness (if you could like the page, that would be great! :-D

Obviously this blog was set up to share my journey recovering from Lyme disease - and what a journey that has been.  It is definitely known for being tough and challenging, but flying 5000+ miles and then driving 650 miles for shoulder surgery isn't usually part of the package - never mind multiple shoulder surgeries, and now wrist surgery...........  But back to Lyme.  

A very quick version of my story is: 

2005: I went from being totally healthy, bounced everywhere, was doing my MSc with plans (& a scholarship) to do my PhD and absolutely loving my life to barely able to walk within weeks.  My mum moved back across the pond to help me - and by help me, I mean literally walk me up the stairs and in the door to university meetings; to cook for me, to wash my hair while I lay on the worktop with my head in the sink.  I went from bouncy to zero in record time.

2005-2008:  I applied for a visa that let me live with my parents in the US for an *intended short time* so I could 'recuperate' and then return to my PhD.  I continued to get sicker and sicker. I lost my scholarship. I could not walk.  I needed to use a wheelchair when we went out.  I had days where I was completely bedbound.  I had a 'diagnosis' of 'CFS'  - here's a look at that: "But you don't look sick...."

2009: By sheer luck my Dad got a job in Pennsylvania. I discovered Lyme Disease. I had my blood cultured and found out I had spirochetes in my blood - a type of bacterium that can 'screwdriver' its way through every cell in the body with its spiral-shaped 'tail'.  This infection had been taking over my body for at least 4 years  - it was systemic, making it much harder to treat.  I found a wonderful Lyme doctor.  I discovered Lyme disease had caused my 'CFS' symptoms; and I discovered that EVERYONE here actually knows what Lyme Disease is - even if they are also a bit sketchy on details; but let's face it, so are the 'experts''.  There is simply not enough known about Lyme disease although it is the most complex bacterial DNA that has ever been sequenced, and it is emerging as the number one growing infectious disease in the world.  That means it's important to pay attention - and, PLEASE, bite that lime!

2009 - now: I continue to work towards better health.  My health has improved exponentially.  I have had some complications and some set-backs, but I am determined to get healthy again - and determined to do all I can to increase awareness of this disease - which can cause permanent disability and death, if it is not treated.  

From GoLymeGreen:

(https://www.facebook.com/golymegreen2014)

I'll be honest, I didn't know how the challenge was going to go - were people going to ignore it because they'd never heard of Lyme disease, or because they simply can't do every 'challenge' for every charity that they come across online?  Would it be confined to the 'Lyme community' - patients and those who are very close to us and see, firsthand through our own suffering, how destructive Lyme can be?  How much life it steals from us? And would that really raise much money - those people (us!) are so busy trying to pay for expensive treatments, as much as we wish we could donate so much more to ILADS, we need to get better - and that's expensive.  Would this challenge really raise awareness?  If it was simply circulating within 'our' community, would we really be reaching others?  Would we really be increasing awareness?  Would it actually work?

My personal view was to give it a go anyway, to try to swamp every social media account I have with photos and nominations, to share others' photos and messages on here, and to do my bit to try to make it work, because the wonderful organisers of The LymeDisease Challenge  have worked so very hard in putting this together.  And they have done it! 

The number of people from around the world who have posted photos of them biting a lime shows just how MASSIVE a problem this is.  It shows how much this challenge - and even moreso, awareness - is needed. It shows that #LymeISeverywhere - it IS in Australia; is IS in the UK (everywhere, not just the hills of Scotland); according to various sources, I have even learned this month that the bacterium that causes Lyme has been found in Antarctic penguins!

I am touched, personally, by my friends and family who have taken part, who have shared a fact, dressed up in funny clothes (sorry, 'normal' lime green clothes - you know who you are!) and who have not just bitten into a lime; nor have they 'just' spread awareness - they have helped to create *HOPE*. 

(And they will be featured in a collage very soon - watch this space!)

*HOPE*, that even this crazy, strange disease that can take years to diagnose; is inexplicably ignored; is too often untreated for far too long, wreaking havoc on people's lives - destroying people's lives -  IS being talked about GLOBALLY.  Famous athletes and singers and celebrity personalities have all added their support to the campaign too - increasing awareness and spreading *HOPE* by reaching their fans across social media.  We have *HOPE*, that by increasing awareness and by raising funds, there will one day, be an effective treatment for Lyme - and ideally one that isn't as bad as the bloody disease itself!  *HOPE* for a test that can accurately diagnose Lyme. *HOPE* for a treatment that doesn't take YEARS to eliminate years of bacterial colonisation, damage, and destruction in the body.  *HOPE* that people will understand a little more about Lyme because they are learning facts about it.  *HOPE* that this will create more understanding - for those of us dealing with an illness that we struggle so much with in every way.  That *HOPE* is so important. *HOPE* is life saving; it is what we live for. *HOPE* is what keeps us going. Along with those who support us. Sometimes, *HOPE* is what keeps our loved ones going too.

So please, if you read this, consider yourself nominated. Go to lymdiseasechallenge.org and follow the directions - #takeabiteoutoflyme, post a funny picture with the hashtag: 

#takeabiteoutoflyme 

and make it public so everyone can see. Share it on twitter, instagram, personal blogs - anywhere! - and don't forget to nominate others to do the same! Help us spread awareness, and please consider donating if you can. Please help us continue to *HOPE*.

Please visit www.lymediseasechallenge.org to learn more and please help spread awareness of Lyme disease.  

Lyme disease has stolen the last decade of my life - you can help prevent it doing that to anyone else.

“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.”

  ~ Emily Dickinson

Lyme disease: an amazing article

Back to the original purpose of my blog for today: 

 to help increase awareness of Lyme disease, especially in the UK

Yesterday the Herald (a Scottish newspaper) featured this article:

"Scientists and doctors unite to beat tick-bite disease"

The article is pretty short and to someone who has not spent hours, days, weeks, and months of their life researching, reading, fighting for treatment and battling Lyme disease on their own, it probably doesn't seem like such a big deal.  Basically, the headline says it all - scientists and doctors are going to develop guidelines to treat a disease that is increasing in prevalence... doesn't sound like anything ground-breaking is going on there...


But it is!! Believe it or not, there are NO official guidelines on how to treat Lyme in the UK.  Many doctors don't really know about it (my own GP, when I first mentioned Lyme disease and antibiotics said "I don't know if you use antibiotics for Lyme" as he reached for a book).  I also know a friend at home who has had two positive blood tests for Lyme (in itself a rarity, as getting a positive blood test is dependent on timing and the body's immune response) and was referred to a homeopath and a psychologist.  That's right... that's like testing positive for MRSA, or TB and being sent to a homeopath and a psychologist.  Bacterial infections are treated with antibiotics (or anti-microbials) - something that kills the little buggers.  If you could talk them out your system, I'd have been cured long ago!


Not only is the announcement significant, but the details in this short article are reported as clear facts about Lyme.  Again - that's amazing.  Prior to reading this article, the only place many of these pieces of information were discussed was in the context of the 'Lyme debate' - the use of the word 'chronic' in reference to Lyme disease is extremely controversial, but the Herald states what Lyme researchers have known for a long time - catch it early and one course of antibiotics usually prevents the infection spreading throughout the body, and therefore prevents severe illness; but if it is not caught early, it can affect major organs, cause chronic health issues and has even been attributed as cause of death (many more times than the one example mentioned in the article).


The article also states that it can be passed from a pregnant woman to her unborn child.  Again, this has been controversial and is generally denied by mainstream media/ infectious disease specialists; but there are many documented cases.


It also states that Lyme can mimic chronic fatigue syndrome symptoms and those of MS - hopefully paving the way for earlier Lyme testing in anyone presenting with symptoms that fall under the CFS umbrella. I do not know if this is still the case, but NICE (National Institute of Clinical Excellence) did, in recent years, issue specific guidelines which recommended AGAINST testing for Lyme in patients with CFS - so, again, to have that information reported as facts by a mainstream UK broadsheet is a breakthrough for Lyme patients.

That's only some of the symptoms of Lyme.  For a more comprehensive list and great information, check out the two UK charities who have worked so hard to raise awareness and educate people about Lyme: LDA and BADA-UK.

I'm not naive enough to think this is going to create a magic response, present a cure and 'fix' everyone dealing with Lyme.  Nobody knows how to do that.  But simply having this information out there makes it clear to me how much progress has been made in the UK in the last 6 years - Lyme has gone from something virtually unheard of to something people are now aware of, and medical professionals and scientists are accepting they need to deal with it.  That on its own is a breakthrough.

What can really help is sharing the article - the more people who are aware of Lyme, the fewer will become severely ill, as time passes and allows the spirochetes to infect multiple areas of the body.  If you read the article, share it with one other person - if everyone does that, awareness spreads even faster.

And let's hope the guidelines formed by this committee - which will include Lyme patients too - will be forward thinking, educational, and beneficial in treating and preventing the spread of Lyme disease.

In order to demonstrate how Lyme can affect people, I'm going to post some pictures/ illustrations from Pinterest that really do explain how Lyme (and other 'invisible illnesses') can make people feel.  They're not my usual optimistic, inspirational favourites, but they are important in illustrating how serious Lyme disease is, and how people feel and cope with systemic disease.

http://www.pinterest.com/gmun22/outofthelymelight-blogspot-com/