Friday, March 29, 2013

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: 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

Thursday, March 28, 2013

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

Wednesday, March 27, 2013

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.....?!

Tuesday, March 26, 2013

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:

Sunday, March 24, 2013

Spot the Difference

It has been a couple of weeks since I blogged.  It feels like March has just disappeared this year.  I have probably spent half of it asleep and the rest of my awake time split between physio and lying on my bed with my ice machine anyway.  I really did have a rotten bug, coughed far too much for anyone, never mind the current state of my shoulder - I still don't feel like I'm completely over the bug yet, the cough is kind of lingering, but not too bad anymore and my glands still feel a bit swollen, my throat's still not quite right - not enough to really make me say it's making me ill, but definitely enough to say it's still hanging around. And I know any extra stress on my body just makes me exhausted just now, so not much more I can do about that... apart from the sleeping!

Friday was my birthday.  It definitely led to a lot of reflection, thinking about this past year and how much I really have improved, but also realising how far I still have to go and this time last year, as I've said before, I really thought I'd be back to normal by now.  It was, however, a big improvement on last year's birthday - not that that would have been hard!

I was comparing photos, so I did this:

On the left, last year's birthday.  Turning 30 with my super-sling on was definitely not a high point of the year.... Note the arrows: 

 - My SLING!! Permanently attached at this point

- You can almost see my socks and leggings - I couldn't put my own socks or shoes on at this point, and even the leggings were awkward and a bit of an effort to get on - but I could only wear those, or sweatpants, because I could not fasten buttons or ties; also my leggings were pretty much the only thing that fit me properly because I had lost so much weight in the time between injury and surgery because the pain made me feel so sick all the time.  This year I am about a stone (14 pounds) heavier - I am a size 2 now; no more double zeroes! - and I am delighted about that, so I am announcing it here.  In public!!

- Top: a vest/ tank top that I could actually step into and then put my arms through the straps - with help - getting anything over my head on my own was impossible, and even a baggy T-shirt required help... so I lived in the tank tops and cardigans (which I also needed help getting on)

- My hair:  washed in the kitchen sink by my Mum the day before so I would have clean hair for my birthday, and obviously just left to dry on its own since I couldn't style it; also spotty face from the stress, no make up because it was almost impossible... and also, I really didn't have the energy to care!


On the right, turning 31, one year and 3 weeks after my surgery... These arrows:

- NO sling!! In fact, my right arm is 'holding' the cake box (actually it's not really taking any weight yet, but it can reach it...)

- Boots! With laces! Tied by me! (I do still have to sit on the floor to tie my laces/ put my shoes on, but it's still progress.)

- Tights! Try to put on tights one-handed and then you will appreciate this achievement!

- The arrow on my shoulder is actually pointing to my dress - which goes on over my head, no zips or buttons (that might still be a good thing), and which I can get on and off on my own.  I actually bought this dress last summer and I tried it on in the shop and had to call my mum to come and help me take it off - again, marked improvement.  The little things add up!

- Also, given that my entire health details are available for all to see anyway, why not point this out too.... I am wearing a BRA under that dress!  Still soft and wireless and carefully selected so the straps don't press against my sore bones, but this is also progress!! 

- Styled hair, pink hair (dyed with my own left hand), the ability to wash my hair on my own, style my hair on my own, and put on make-up.  To be fair, these are all currently done left-handed (totally ambidextrous) but last year even that was painful - actually, I wasn't even supposed to use my left hand for much at this point last year according to the Dr's instructions as it could still pull against the surgical area across my back.


Plus, we went out for dinner.  I still had one pillow with me, and I do still have to make sure I am adequately drugged to survive any trip out, but again, it is all baby steps and they add up.

It can be quite frustrating for me trying to examine my progress day-to-day, as it is slow.  I don't see big differences, because it's not happening like that.  Having a visual comparison really helps me to look back over the past year and realise that I have made huge steps forward in what I can do now - all because the baby steps add up.

And, yes, I wish it was faster, I wish I could just work harder and see results quicker, but I think it has been pretty much established that isn't going to happen; this surgery doesn't work like that. So being able to play 'spot the difference' between the photos was a pretty positive mental exercise for me.  And I hope that next year's birthday photo will just be a normal photo of a normal me ... actually, being upside down or hanging from a flying trapeze or something similar would be even better...! Watch this space!

A day to look forward to:

“When you realize how perfect everything is you will tilt your head back and laugh at the sky”

  ~ Buddha

Monday, March 11, 2013

Sleeping Beauty...

This is how I feel! Well, take away the beauty part right now given I have not showered, washed my hair or been out my PJs for close to a week.  But I do feel like I have been totally out of it for most of March, especially for the past week and suddenly I am waking up and beginning to feel a little more human again.

My poor Mum got a sinus infection, doctor gave her abx, but she just gradually got worse and clearly the abx were not working.  She developed a bad cough and seemed to be getting a chest infection, she did spent a few days in bed, which is very unlike her, she drank hot tea and slept.  She is doing much better now, and today, although still a little bit tired, has managed to have a 'normal' day - shower, grocery shopping, errands etc. and is still standing at the end of the day!

I spend the first few days trying not to get too close, especially when she started coughing (sorry mum!), and dosing up on all my vitamins I could find.  But we are in such close quarters - especially in the car, and it was inevitable... I caught the bug.

So... so far March has pretty much been spent in bed, sleeping as much as possible and trying my hardest not to cough too much as I swear I could have cracked a rib coughing with the intensity of my coughing fits :-(  My throat is killing me, and is swollen along with my glands - I have been unable to swallow anything, even hot tea or cough medicine made me gag, so I've basically survived on ice chips for 5 days. I've lost 6 pounds!! I'm most upset about this.  I bought new clothes and gave all my size zeros away after I put on weight post surgery (I really wasn't very upset to be a size 2... I'm big enough to shop in grown up shops now!).  Today was my first day with 'solid' (if you can call it that!) food: a pretty gooey scrambled egg, so it just slid down! I also managed 2 cups of tea today which is another improvement.

Basically I've just had a really bad cold that has totally floored me, as it did my mum; but add in horrible coughing fits with my shoulder and rib pain, and the residual Lyme symptoms and low energy and I really feel even more exhausted and sore than if I'd been 'normal' with the same thing.

So... not really writing this to complain, just to explain my blogger absence at the moment.  Concentration seems harder than usual and there is nothing to fix this but time... and sleep.

So it's back to being Sleeping Beauty for the moment....

“That which does not kill us makes us stronger.”
   ~ Friedrich Nietzsche