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

MAY is Lyme Disease awareness month

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...

All around us dangers wait,
Worse than any thriller:
Somewhere hidden in a field
There lurks a cereal killer.
~Simon Andrew

While this is an amusing little play on words about field mice - spotted in a local eatery, south of Edinburgh, of course my mind went to the hidden 'serial killer' - also hiding in fields... and in mice: TICKS! Mice make good hosts for ticks. They offer food, heat, and usually find themselves a cozy home for the winter - ticks are brought into our homes and gardens by pets and other small mammals or birds. 

Always remember to TICK CHECK yourself, kids, and pets when you have been outside - hiking, or simply playing in your own garden.

And while wordplay is fun under artistic licence, it IS important to know the name of the disease:

LYME disease

or

LYME BORRELIOSIS

Names are important: to be taken seriously, it is important that the medical community, and the general community do know the correct term.

Share what you know, you could save someone's life.

#LymeDiseaseAwareness

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

Lyme disease: one size doesn't fit all

Well, as planned today was 'A Day Out The House', mainly because I had physio - but we also stopped in at a couple of shops, then coffee and a bagel, and some time just wandering round the mall afterwards.  I did set multiple alarms on my two phones (one UK, one US) and put a 5-hour energy drink ON TOP of the first phone so I HAD to move to get it and pick up the drink to put the alarm off - it worked in waking me up anyway........ even followed by 30 minutes fighting the snooze button.

I actually felt better today than I have for a few weeks, generally (not shoulder-ly).  I'd run out of my antibiotics, probably about a week ago when I really thought about it - last week was one big blur of sleep.  I didn't really plan it, but I figured I'd see how I did without them and I guess the answer is still not good.  I did have a whole host of symptoms flare up - it's really hard to tell though, whether it is an active infection of borrelia bacteria, damage it has caused in my body in the past (which may or may not go away), reactions to chronic pain (which are complex and way more systemic that I ever could have understood before - especially when nerves are involved), or - at this time of year - a bug I might have picked up.  Or, more likely, a combination of any of the above.  

On the plus side, previous times I have stopped the abx, within days the Lyme headaches are back, and I feel like there is a pair of giant hands inside my skull, squeezing my brain - I didn't have those headaches this time, which I suppose is good, although instead I felt like I wanted to pull my left kneecap off, and the pain in my ankles, left hip and wrists has never been as painful as this week.  If just one day (two now - I guess if I still feel better tomorrow it might be a sign) of abx is enough to make me feel a bit better, that's also a big improvement. If it continues, it will be more telling.  Here's hoping!

I re-read this article on the Huffington Post's website today: "The search for global education: The 300,000 - Ticks" which was published last November, after the CDC in the US estimated there were an estimated 300,000 cases of Lyme a year - a significant jump from its previous estimate (which I can't remember right now, but it was far lower - perhaps a tenth of that).

It's an interesting interview and a good read for Lyme patients, or their family and friends as two Lyme Literate doctors discuss the complications of treating Lyme, and present their ideas on why it can be so difficult to treat.

One of the points in the article is that Western medicine has a strongly held belief - 'Pasteur's postulate'  that each disease has one cause and one cure (I have read of this being called 'germ theory' too - credited to Louis Pasteur) - not that every patient is different.  In the article, Dr Richard Horowitz, a well known name in Lyme circles, and an advocate for Lyme patients, discusses co-infections and other factors (e.g. a weakened immune system) which have to be addressed in order for patients to recover.  This is difficult to treat because each individual has different environmental factors, diets - lifestyles really; and treating each patient as an individual is far more appropriate than trying a one-size-fits-all approach.  

http://www.pinterest.com/gmun22/

It's a shame that something so obvious is such a revolutionary idea, but with increasing awareness about Lyme, within the general population, and the medical community, hopefully this will help create new treatment protocols, and more doctors will listen to those few doctors who are leading the way.... hopefully to a real breakthrough.

“We shall require a substantially new manner of thinking if mankind is to survive.”

   ~ Albert Einstein

Under Our Skin

Today I want to draw attention to the award winning documentary Under Our Skin which eloquently and sadly delves into the devastating effect Lyme disease can have on people's lives, and examines the controversies associated with the disease.

In the US, Under Our Skin can be viewed for free on Hulu and is also available on Netflix; and in the UK there are several sites that come up on a Google search for the film (see here) but I'm not sure what ones can be viewed from within the UK, some links work for me here but comments say they are geographically restricted.

The official website: http://www.underourskin.com/ has more information on the film and the DVD can be purchased there.

This 5 minute trailer available on YouTube highlights both the tragedy and controversy of the disease.  Please, take 5 minutes to watch it now; to share it with everyone you know; and help spread Lyme awareness.  Only by increasing awareness of ticks, Lyme, and the absolute urgent necessity of early treatment can we stop people from becoming so devastatingly ill.

Watching the film, for me, produces a highly charged emotional response.  I remember the years that I could not walk, or wash my own hair; the days I simply did not have the energy to chew food.  Looking back, that seems like it happened in a different lifetime.  In some ways it remains so vivid; and in others it seems like it just wasn't real.  These memories make me cry with empathy for those in the film and they make me realise that even although I have had a rollercoaster of a journey (and really, am still on the rollercoaster), I have been incredibly lucky to find my doctor and to get the treatment I have needed.  And even luckier that it is working.   I know there may be long-term, unknown, damage in my body and that some symptoms may never fully disappear, as there is the possibility of permanent cell damage by the infection being untreated for so long (as with any systemic infection allowed to spread throughout the entire body unchecked).  But I also know that my doctor does expect me to recover enough to live a normal life, something that seemed unimaginable several years ago.

The film's accurate representation of the difficulties faced by patients in receiving the treatment they need, and the medical community's seismic division on this matter is infuriating.  Frustrating. Unfathomable. Ignorant.  Arrogant... I could go on, but the longer I think about it, the more my blood begins to boil.  I hope that one day people will open their minds, trust other people and show some compassion.  

In the US, Lyme disease is a major health issue, often called the silent epidemic because it has been quietly spreading, doctors and patients ignored and marginalised for drawing attention to those with untreated early infections, which become disseminated, or systemic, Lyme disease.  In the UK the same pattern is beginning to unfold and sadly, at the moment, it is following the same path as the US, several years behind.  My initial goal in writing this blog - although a personal blog - was to use it to help increase Lyme awareness.  I am sure that if in 2005 when I first got ill, I knew what I know now, my life would never have been derailed in the same way.  I hope that this blog reaches someone and prevents the same thing happening to them.

Please help increase Lyme awareness

http://www.tickbitepreventionweek.org/