Lyme looks like...

Lyme disease awareness

One last thing I really want to draw attention to. I've written it before, it's known to be a fact by anyone who knows anyone with Lyme disease - an not usually before...

Lyme disease is an invisible illness

This does make it difficult to understand - trust me, it makes it difficult to LIVE, never mind understand. 

Do I want someone to say, 
"You look great today!"
... erm, well I thought I wanted it, but I feel like the room is spinning, my head is buzzing, a migraine is threatening, and I took double my anti-nausea meds.... GREAT you say? Really?

Ok, so I want someone to acknowledge how awful I feel.. [usually my mum...]
"You look awful today..."
...AWFUL... I know I feel awful, but do they really need to TELL ME... OUT LOUD?!

It's complicated...

These are all photographs of me taken in the past year:

A couple in bed: bad days, also I think I'm infusing meds in one.

In others I am ready to go out:

I will do something normal.

I will enjoy this.

I will not throw up in the car...

Make up: mask, concealer, eyes painted open

Cap: I've not washed my hair... But isn't my 'feminist' pin cute?

Braid: I've not washed my hair, but I'm still at the dry shampoo stage.

Sunglasses: either you're not seeing the bags under these eyes; or my eyes are not tolerating any bright lights today.

Lipstick: a secret I read in a magazine - bright lips distract attention from anything else! (Seriously... it works, no other makeup required... although maybe sunglasses... and a cap 😉)

Really, when it comes down to it, we don't want to be ill. We don't want to 'look sick'; but we also don't want to be doubted. And no, sorry, I don't know what you're actually supposed to say to a friend. Just be nice. Believe them. And take chocolate. Or herbal tea. 

Lyme awareness: Lyme is...

Lyme disease awareness

This year is proving to be a tough one. Treatment is working, but energy levels (& computer tolerance levels... eyes, concentration, headaches) are low.

A few awareness points for 2018:

Lyme symptoms can vary greatly from person to person. It depends on what areas of the body the infection attacks. Rather like when some people get a bad cold they end up with a sore throat, and others may end up with sore ears - we are all unique. This can make it especially difficult for doctors to diagnose, especially when lab tests are not reliable, and even moreso, when they are not done in the small window of time that *may* show an immune response to borrelia infection.

The list above is nowhere close to exhaustive - close to 200 individual symptoms have been linked to Lyme disease (see ILADS.org or lymediseaseuk.com for further details). 

However, imagine the list described, and imagine feeling all of that at once. Add on the worst hangover you can remember, and then imagine you ran a marathon too. You're close, but not quite there.

#LymeDiseaseAwareness

Ticks and dinosaurs

Lyme disease awareness

This year is proving to be a tough one. Treatment is working, but energy levels (& computer tolerance levels... eyes, concentration, headaches) are low.

A few awareness points for 2018.

Ticks have a few - million - years on us! That's a lot of time to adapt to environments, spread throughout the world - e.g. migratory bird patterns are thought to be responsible for carrying ticks across continents... although maybe they were there first too. 

Again - tick prevention is best! Use repellent when outdoors and make sure it says it specifically repels *TICKS* on the label.

Ticks carry, and transmit, borrelia burgdorferi, the bacteria that causes Lyme disease. The bacteria have a 'spiral shaped tail' which they use to bury themselves deep in the body where they set up colonies and excrete biofilms to 'hide' from the immune system (plaque is a biofilm - think old toothpaste adverts with the bacteria hiding under the plaque... imagine it deep inside the body, microscopic...).

The importance of immediate treatment for a tick bite cannot be overstated. The bacteria quickly try to get to 'safer' parts of the body, where it is difficult to reach them with medications. Treating an immediate infection - acute Lyme disease - should* kill the bacteria while they are in this acute phase, and when some bodies may launch an immune response (some people never produce antibodies; the reasons are unknown). If you can kill any bacteria before they travel throughout your body, the prognosis is generally good. 

(*There are documented cases of people who received treatment quickly, but still developed systemic Lyme disease; however the quicker the treatment, the lower the risk.

After the bacteria enter the disseminated stage and the illness becomes systemic Lyme borreliosis, it becomes much more difficult to reach, and impossible - with current medical testing - to know if the infection is, or can be, eradicated from the body. More Lyme experts, who have been working in Lyme endemic areas (mainly in the Eastern U.S.) for decades, are now using terms 'relapse' and 'remission' for patients who are battling systemic Lyme disease.

Please, use this information - don't wait, seek appropriate treatment immediately if you are bitten, or if you suspect you have been bitten.  One bite truly can change your life.

#LymeDiseaseAwareness

Tick Awareness

Lyme disease awareness

This year is proving to be a tough one. Treatment is working, but energy levels (& computer tolerance levels... eyes, concentration, headaches) are low.

A few awareness points for 2018...

The CDC actually released these images on social media. 

How many ticks can you find on the poppy seed muffin?

Clue: there are 5 (yes FIVE) ticks on this muffin. 


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Have you found them all?

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Scroll down for the 'reveal'.

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Look closely - can you see the legs? 

Would you find them on yourself...? Or on your child, or your pet? Ticks are tiny - they can be as tiny as this full stop ➡ .

Know how to remove ticks if you live in an area with ticks. (That's across the UK now - search 'The Big Tick Project' for updated tick maps produced by Bristol University. Remember mapped ticks are only from voluntary reporting by vets.)

Most hiking and outdoors stores sell tick removal tools - the easiest way to remove these tiny ticks. Importantly - never squash or smother a tick, always make sure you remove it by its mouthparts, and make sure no part is left in. See your GP if you are bitten and make a note of the new NICE guidelines (for England & Wales) in terms of how any tick bite should be treated.

Prevention is better than cure - wear repellent. 

Also, remember,  we don't actually have a cure, so speedy treatment is essential! 

#LymeDiseaseAwareness

Empty Red Shoes: Increasing Awareness of Lyme & Invisible Illnesses

In memory of Australian Lyme patient, Theda Myint, the Worldwide Lyme Borreliosis Association (more info can be read via the link) held the second international 'Red Shoe Day' on 25th July 2014 (spanning multiple dates to accommodate global time differences)*.  Their goal is to create an annual day of remembrance for people who have lost their lives to Lyme Disease and other invisible illnesses.  The Facebook page created for the event listed almost 1000 people as 'attending' and invited people from all around the world to post photographs of them wearing red shoes to the page - of which there are now hundreds.

*Edit: 2014 was not the second international red shoe day, but the second time red shoes were worn to commemorate Theda - her friends decided to wear red shoes to celebrate her life on the day they said goodbye to her.  This year is the first year it went global.  


Reading Theda's story - and all stories about those who have lost their battle with Lyme disease - evokes an overwhelming emotional reaction in me.  I don't think there is a single time I have read about a stranger, someone I never knew, who has suffered and died from Lyme Disease, or CFS/ME (Theda's original diagnosis, and also mine) and not cried.  There is never a time when I haven't thought: that could have been me.  Because it could have been. 


And: that should have been prevented.  Because it could have been.


This reaction is why most people with any kind of invisible illness want to increase awareness and foster understanding as much as we want (a) cure(s).  Many people are unaware that Lyme Disease, for example, can be fatal.  Raising awareness means more people can get early treatment, fewer people will die from an infection that CAN (in most cases) be easily treated in its early stages.  And stories like Theda's will disappear.


If it had been me, I would be very proud of my family and friends if they started a worldwide movement to support others.  Her friends chose red shoes (not 'Lyme' green ones) because they were her favourite colour of shoe.  They also feel red shoes can be all-encompassing, representing all invisible illnesses.

I wore my own red shoes on Friday and hopefully next year anyone reading this will wear red shoes too.

(Actually, lacking in red shoes, I got creative this year)

I want to share a beautifully poignant photograph posted to the Red Shoe Day Facebook page.  It perfectly illustrates exactly what Red Shoe Day is about.


I wrote about it here on the GoLymeGreen blog: Empty Red Shoes :

Photograph by Marianne Verheyen

While this is not a painting, it is most definitely a work of art, and I feel this quote is both sad and beautiful, like the photograph.  They seem to go perfectly together, as well as reflecting life lived with chronic illness.

I never paint dreams or nightmares, I paint my own reality

~ Frida Kahlo

The Problem

I am on various Lyme groups/ boards online, some I use more often than others, some I glance over every now and then; some offer lots of information, post links to new research or media articles, others are more focused on providing support to others.  All have their benefits and sometimes I wonder how I would ever possibly have coped if this had all happened to me before the internet existed.  

My research from the CFS 'diagnosis' to the microbiology theories which eventually guided me to my Lyme diagnosis was all done online.  I had access to a wealth of information at my fingertips.  A community of support without even leaving my bed (because I couldn't).  Now, the amount of information available online regarding Lyme & its associated diseases seems to increase exponentially every year.  And I'd like to say every single bit of information shared is valuable - from scientific studies published in journals, to personal stories shared on blogs  - they all add to a piece of the puzzle, share some insight into the 'Lyme experience'.

But I honestly have to draw the line and say this article 'Who What, Why? How dangerous are tick bites in the UK?, published on the BBC this week might be the WORST article I have read on anything Lyme-related that (apparently) aims to promote awareness.

The article is here: http://www.bbc.co.uk/news/blogs-magazine-monitor-27255853 

The ONLY good thing I can say is it is talking about ticks and Lyme - they say no PR is bad PR, so I suppose, at the very least, it is being talked about.

But..... The Problem is in the content. (Actually the grammar nerd inside me has other issues with the article too.)  The content, the structure, the lack of research, the fact it fails to answer the question posed as its headline - and reads like it has been written by a school pupil on work experience - all combine to create a terrible piece of generic blurb which is helpful to nobody.

Oh, but it's on the BBC.  Back to The Problem - people will read this.  It's a quick, easy article - look everyone, the BBC is doing its bit to raise awareness....... except it doesn't.

Going through the article, here are a few BIG issues:

"there's no definitive data on how many ticks are in the country. Some areas have none..."

That's a bit like trying to count poppy seeds.  Seriously.  I doubt it is possible to EVER even guesstimate how many ticks there are anywhere.  And as for some areas not having any - since there's no way of counting them, ticks move, ticks attach themselves to animals and people (both of which have the ability to move further), this statement is completely and totally unverifiable. 

"Lyme disease is treatable with antibiotics if it's diagnosed early. But neurological problems and joint pain can develop months or years later if it's left untreated. In the worst cases, it can be fatal."

What should possibly be the most important part of the article is reduced to 34 words.  Is this the answer to the article? The word 'symptoms' is mentioned several times, and 'flu-type' symptoms and 'fatigue' mentioned in passing, but apart from those very general references, the above paragraph is ALL it says about symptoms (apart from my next point).  So, you might get bitten by a tick, if you have (undivulged) 'symptoms' and don't get treatment quickly you could die.  Wow.  That's just super-helpful and informative.

Next.......

The most common symptom is a pink or red circular "bull's-eye" rash that develops around the area of the bite, but it doesn't appear in everyone. 

MYTH. This is NOT the most common symptom.  It's pretty much the only symptom that definitively confirms Lyme disease - and even still is not common knowledge among many GPs in this country - but studies and surveys quote statistics varying from 4% to 70% of people remembering/ developing a bullseye rash.  I could put a hundred references/ links here, so a quick Google search (or Google Scholar if you prefer to stick to the academic side) will produce hundreds - probably thousands - of different articles which cite different statistics on this one.

I think however, this paragraph has to be my favourite bit in the article. 

"For those worried about their gardens, keeping lawns short, raking up leaf litter and creating a buffer zone between habitats ticks tend to like and lawn-paving, wood chips and gravel can help."

As the grammar nerd inside me explodes, I'll just focus on the meaning of this sentence (or at least, what I think is the meaning of the sentence).

1. Ticks have habitats they like which appear a mystery to both the author and the reader

2. Short grass must deter poppy-sized ticks. Ever seen an insect crawling on a blade of grass?  A ladybird? A bee? A beetle? I have - doesn't seem to deter them, and they must be at least ten(?)/ a hundred(?) times larger than a tick.

3  "Raking up leaf litter".........................?................................. Even the sarcasm escapes me.

4.. Lawn paving, wood chips and gravel are magic.  They provide mystical deterrent properties that prevent bugs from travelling across them.  If only we knew.....

Just in case my sarcasm wasn't thick enough (come on now with this sarcasm font, I've seen enough people requesting one, can't we assign one, PLEASE?! I vote for comic sans, personally).....

1. Ticks attach to a host so they can feed on them.  A deer, bird, dog, rabbit, mouse, human - they don't really care.  They are blood-sucking arachnids (which it actually says in the article).  I don't think they have a 'habitat' they like to call home.

2. Short grass - yes, it is known that it is easier for a tick to attach itself to a host when it crawls up longer grass.  This is not really made clear.  It also usually refers to long wild grass encountered when hiking; not a lawn that needs to be an inch or so shorter.

3. "Raking up leaf litter".............. I have no words here.... except.... what??  There's not even an explanation!

4. See point 1. I haven't personally encountered any paving, woodchips or gravel that I have been unable to walk across, or that I have witnessed any animal being unable to walk across.  Attached tick - transported elsewhere.  It's really not rocket science.

Finally.........

"The most important thing is for those that think they might have symptoms of Lyme disease to go to the GP as prompt treatment will prevent complications. Symptoms usually take between three days to six weeks to appear after a tick bite."

Oh, if only they knew.  GP.  Prompt treatment.  Symptoms of Lyme disease.  I would like to say we are all laughing at the sheer naivety of using all those words in one sentence, but we're really not.  

We're not laughing because we are crying.

For accurate information on Lyme Disease see:

 Lyme Disease Action UK

May is Lyme Disease Awareness Month

May is Lyme disease awareness month and the weekend of 16th-18th May will see protests around the globe, all aiming to increase awareness of this debilitating illness and demanding better access to treatment and information for both patients and doctors.

This year, I am involved in some various other ways of raising awareness, but I aim to post on my blog too - since this was its original purpose.  My journey out of the 'Lymelight' is just taking a few twists and turns...... actually twists and turns doesn't really cover it - it's turned into a rollercoaster....... the absolute craziest, most terrifying rollercoaster you can imagine, with vertical drops and loop-the-loops at supersonic speed..... in the dark.  I think that about covers it.

However, stories of my life are best left for another day.  Today I want to link to this blog and begin to draw attention to the social media aspect of Lyme awareness - social media holds such power, unimaginable even a few years ago.  Sharing information, turning your profile picture(s) green, or your cover picture to one of the many that have been created, or adding an 'awareness ribbon' to your profile will help raise awareness and stop this disease making people so devastatingly ill.  When Lyme is caught early, it is much easier to treat - knowledge and awareness can make this possible.

So please follow: http://lymegreen2014.blogspot.co.uk/ during the month of May and help raise awareness for an illness which is so poorly understood.

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