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/

Antibiotics: The Controversy

This post could take me into some pretty dangerous territory in the fight against Lyme - how to treat?

It really should be simple bacterial infection = antibiotics (abx).  For some reason, researchers have persisted in claiming that 30 days of abx will cure Lyme, and if you're still ill after that, then you don't have Lyme.  EVEN IF YOU STILL HAVE A POSITIVE BLOOD TEST.

Keeping it short and sweet: this causes lots of problems for people with late diagnoses.

What I don't really understand is why the chief medical examiner for England,  Professor  Dame Sally Davies can say: "Bacteria are adapting and finding ways to survive the effects of antibiotics, ultimately becoming resistant so they no longer work." 

And in this article: "There is a broken market model for making new antibiotics, so it's an empty pipeline, so as they become resistant, these bugs, which they would naturally but we're breeding them in because of the way antibiotics are used, there will not be new antibiotics to come."

And just this month, the BBC chose to publish what I think was supposed to be a post-apocalyptic vision of a world without antibiotics where the author painted a 'terrifying' picture of dying from a cut finger, simply because it got infected.

It seems the powers that be are worried about antibiotics losing their effectiveness.  And bacteria adapting.  Yet if this idea is connected with Lyme it becomes laughable - crazy patient.... reading too much on the internet.... from microbiology journals.... umm.....

The argument against using long term antibiotics is that there is no proof that the risks outweigh the benefits.  Well, a personal point to those policy makers:

I have been on antibiotics for 3 and a half years now.

I have continued to make a steady improvement in this time.

I have suffered some side effects, such as diarrhea, which is usually the worst 'risk' mentioned during these debates.

I have had some nausea and sickness caused by doxycycline (this is also experienced frequently by those given doxy as a prophylactic against malaria).  At this point I took a break, and switched to erythromycin.  Eventually I had some niggling stomach issues, took a break and switched to azithromycin.

I have followed a careful diet and taken probiotics throughout.

A few years ago I broke my thumb.  I was given Vioxx (later withdrawn for causing heart attacks); the Vioxx hurt my stomach; I developed a stomach ulcer; the drugs I was given for that made me vomit; I developed IBS - all connected; I had an endoscopy; food sensitivity testing; eventually diagnosed with Leaky Gut; followed a diet, took some supplements and my stomach healed.  This took about two years.

I have never had any side effects or consequences like this from taking long term antibiotics.

My improvements: Lyme-related:

(just ignoring the shoulder issues for a moment)

I can concentrate enough to drive again 

I have the strength to drive again

I can walk again, without any support

I can stand up in the shower to wash my own hair and shave my legs - all in one shower

I can lift a hairdryer and straighteners, and style my own hair

I can enjoy reading again

I can go places on my own without being afraid I'm going to pass out, get dizzy and need help

I went back to university to continue my PhD studies

I could live on my own again

I could lift a kettle, a glass of water - things that were too heavy before

Cook for myself again

Shop for myself again

Carry my own handbag

I put on weight and went from wearing a child's age 14 trousers (in my twenties), or double zeroes to being, at almost 20 pounds heavier than I was at my sickest, a size 2

My acne began to clear up

My headaches were much reduced

My migraines much less frequent

My nausea disappeared and my appetite returned

My leg pain was much less and my joint pain minimal

I did yoga again

And many, many more

There is not a single thing on that list that I would say, oh, it's not worth the risk of long term antibiotics.  Every single one of those freedoms is hard fought for by me and I should be the one who decides what risks are worth it in my life, to make my life better - the life I want to live.  Not some doctor, who can decide to give antibiotics long term for acne (not life threatening) but not for Lyme disease.  There is something seriously wrong with that logic.

Please help spread awareness of Lyme disease

http://www.tickbitepreventionweek.org/