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/

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/

Tick Prevention Week 2013

This week is BADA-UK (Borreliosis and Associated Diseases Association)'s Tick Prevention Week 2013.  BADA does a lot of great work spreading awareness of ticks and the diseases they carry - including Lyme disease.

Ticks carry many other diseases too and I'm going to talk more about them later in the week.  I was also recently at a talk about the current reliability and specificity of testing for Lyme disease (it's not good!) so I'd like to get some information from that really interesting talk on here too.

For my first post today, which is actually Tuesday - I meant to post on Monday (but I fell asleep this afternoon), here is BADA's video about ticks.  In the video, Dr James Logan, an entomologist, explains how ticks can infect you; how you can prevent getting a tick bite when outdoors; and how to remove a tick safely and reduce the risk of disease transmission if you are bitten.

Lyme disease is on the increase around the world.  Ticks can live on deer, birds, squirrels, chipmunks and these wild animals carry them around the country.  They are now found not just in the countryside, but also in urban parks and in your own garden.  They get on domestic pets, who can also become infected; and they can quite adeptly attach to a human for a blood meal as well.  Knowing about ticks, how to avoid them, and what to do if you do find a tick is becoming more important as Lyme increases.  This illness can be treated much more efficiently if it is caught early.  In its disseminated stages when it is capable of affecting every organ and tissue in the body, it becomes much more difficult to treat.

Increasing awareness will help keep you safe and will hopefully prevent you every becoming severely ill with Lyme.  Please watch the video and share and help spread awareness of Tick-borne diseases.

Just to emphasise the point, here are some pretty horrible photos of infestations of ticks on various wild animals - as long as ticks have something to feed on, they can survive:

http://www.tickbitepreventionweek.org/