Saturday, 4 January 2014

Gallbladder hurts but Lyme KILLS.

Well, December came and went in a blur of delicious festive goodies that I could only slaver over like some ravenous labrador. The list of stuff that I can't eat has slowly expanded and now my list of 'will trigger an attack and result in extreme pain and being drugged up to the eyeballs on opiates' includes:

Rice pudding made with rice milk, dry cream crackers and baby sweetcorn, coffee, satsumas, pineapple, all dairy except a very small amount of semi skimmed milk in tea, cheese, eggs, all foods containing more than a couple of grams of fat, bread, kale and probably broccolli, cauliflower, brussels, cabbage, soya yogurt, red meat and pork including liver, too many onions, nuts and seeds apart from v small quantities (I seem to be able to get away with three nuts- wooo!). I also have the appetite of an anorexic sloth and the opiates make me unable to sleep and turn my insides into concrete. 

Now had 5 or 6 emergency visits to A and E, the last one being particularly horrendous. Driving home for christmas Chris Rea stylee, car packed to the gunnels, rain lashing, busy dark motorway, on comes a mega-attack. Three hundred miles in, we decide we have to turn back as I was concerned about this one as it had been going on for 24 hrs and I was a bit worried about my liver. Heroic John whizzes me to Aberdeen A and E - on mad friday. For anyone not familiar with this particular tradtition, this is the friday before christmas where normally sensible, middle aged, suited oil executives and their minions take to the pubs and clubs with abandon, turn into teenagers and get absolutely wasted on overpriced cocktails and scary looking green and blue shots in test tubes. Many heads make contact with many hard surfaces and the end result is an impressive line up of battered, collared, bloodied bodies in A and E. Despite the tidal wave of human detritus that washed through their door, the staff in A and E were lovely, even if someone had absconded with the key to the morphine cabinet. 

They put me to the general surgery/general incompetancy ward where the next morning the socially inept and frankly rude and obnoxious surgeon comes round, waves his hand dismissively at me and declares 'you're fine'. He then shouts at me (whilst managing to avoid my gaze and also talking to his students as if I wasn't there) and tells me 'you are not an emergency!'. I cry, get my morphine and get out of there. I felt quite liberated, self-discharging and we manage to travel down south to see the relatives after all.

Fast forward to Christmas eve and the interior-clogging properties of opiates become horrifically apparent. I thought childbirth and gallbladder attacks were painful, but six days of no evacuations and a triple dose of stimulating laxatives results in the most horrendous pain I have ever experienced in my life. Screaming like a demented banshee, we take an early morning trip to another A and E where an angel with a tinsel halo shoves a nozzle up my bum and, well, it wasn't pretty. They had christmas tunes playing to try to drown out my screaming though, which was nice.....

Smutty breakfast

Christmas dinner- I couldn't eat much of it.

Sumptuous, decadent, extravaganza of a pudding. NOT.
So I'm still waiting for them to slice me open and remove my probably gangrenous gallbladder. I'm in limbo with my Lyme treatment as my LLMD says I have to go on a very skeleton schedule of antibiotics until my op as it's just too much inflammation going on. Meanwhile, I steadily shrink (55 kilos now) and am just generally hacked off with waiting and suffering.

However, all this moaning is put into perspective when I hear of the tragic death of another UK Lyme patient just before Christmas

Jason Banks was attending the BCA clinic in Germany and was apparently responding to treatment. I think he went home after some initial treatment but deteriorated after that. I think he had a family.  I don't have many details but this is what a BCA nurse had to say about him:

In Memorial of JASON BANKS, born 1972

All professional medical people has to work under these words:

THE HEALTH OF MY PATIENT will be my first consideration
I WILL PRACTISE my profession with conscience and dignity
I WILL NOT PERMIT considerations of age, disease or disability, creed, ethnic origin, gender, nationality, political affiliation, race, sexual orientation, social standing, money or any other factor to intervene between my duty and my patient

If a medical system is starting killing the patients, then is something going wrong,
And every doctor and every nurse all over the world is staying in responsibility! 

Jessica Richter, Nurse

Are you listening, Public Health England? Are you listening, all the ID consultants out there? Are you listening British Infection Association? 


Please, please, please, UK authorities, I'm begging you. Open your ears, open your minds and open your purses because this is life and death, not some academic exercise.

Postscript. An earlier version of this blog entry contained reference to an Irish Lyme death. It turns out that this was a hoax. How very annoying, that sort of behaviour makes the rest of us look like crazies. Apologies from myself for posting misinformation.