#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

Spirochetes: Complex and Clever

Lyme disease can be complex to diagnose, and I'll focus on that in more detail later in the week, false negatives are common and biopsies and cultures can be difficult because borrelia burgdorferi spirochetes - the bacterium that causes Lyme disease - can infect and survive in any cell in the body.  Finding them can be difficult.  They can be in the heart, the brain, the muscles, the joints, other major organs; and any soft tissue.


Lyme literate medical doctors (LLMDs) generally view Lyme as a clinical diagnosis.  Getting a positive blood test is lucky (believe it or not) and associated with certain symptoms makes diagnosis much easier; but combinations of symptoms, the presentation of the disease, remembering a tick bite, or finding a tick on your body, developing a rash, or being/ have been in a Lyme-endemic area can also point to a diagnosis of Lyme.


Treating Lyme is even harder.  In its early stages - for example in someone who finds a tick, develops the tell-tale bull's eye rash (indicative of Lyme, but not present in every case) and sees an LLMD early enough - Lyme can be treated effectively with 3-4 weeks of antibiotics.  That's why awareness is so important.


In some unlucky people, a tick bite might not be noticed, or the rash might not develop, or might be on an area of the body where it is hidden (e.g. the scalp).  Sometimes initial symptoms might seem like a cold or flu-type infection and nothing more.  Spirochetes can lie dormant in the body for a long time, waiting on an opportunistic moment to launch an attack.  It has been shown that bacteria in the body can communicate with each other and can 'tell' when there are enough to launch an attack.  Sounds like a scary science fiction story?  Absolutely!  I was at a talk on Lyme last week and when the clinical immunologist giving the talk shared this piece of information people in the room gasped, horrified.  I had actually recently read a news article that  discussed research that claimed infections to be 'multilingual' i.e. different species can communicate with each other too. The science is here.


Borrelia is what is known as a stealth pathogen and is thought to be able to evade detection by the immune system in various ways - one way is by mutating into a different form (usually called L-form) ; this also makes it immune to most antibiotics.


Spirochetes can lie dormant and then attack when the body is weakened, perhaps by another infection (like the common cold) or by stress.  When it gets to this stage, borrelia spirochetes have usually managed to 'escape' from the immune system by burrowing through tissue and moving from the blood vessels into different areas of the body.  Microbiology research has captured this on video using powerful microscopes:

Another little horrifying piece of evidence regarding the adaptive ability of spirochetes.  The voiceover in the video refers to no research being available on how spirochetes reproduce.  I haven't heard or read anything about that anywhere, but the point of drawing attention to it here is really just to underline how little is known about borrelia.



The spirochete's DNA has been sequenced and it is the most complex bacterium currently known to man.  Its DNA is 25% the size of human DNA which, apparently, is pretty significant.


Some researchers believe that many chronic, degenerative illnesses have borrelia as a factor - cause, or later opportunistic infection is not known.  The more research that emerges, the more complex, and common, the bacterium is found to be.


Rather than going into all the science here (and where to start and where to stop....?!) I'll link to the Wikipedia page on the Microbiology of Lyme Disease for anyone who wants to read further.  Most of the actual microbiology explains more than I ever could, and links to journal articles.  The controversial issues, such as the Lyme vaccine are not discussed fully on that page.  However, as a starting point for basic information, it's a good starting point.


I don't want to put too much information in one post, so I'll just leave it at that - the horrifying little buggers that give you Lyme disease, transmitted by the horrid little bugs that suck your blood.  Isn't this a wonderful topic.....?!

http://www.tickbitepreventionweek.org/