Tuesday, 11 February 2014

Cheese, smack, broken specs and the Game of Lyme.

IT'S OUT!!!!!! IT'S OUT!!!! The evil rancid little bag of gravel and bacteria that was making my life a misery has finally been sliced out and has probably been cremated and sent to gallbladder hell. Sooooo mega chuffed. It's just one week after the operation but I can already eat lots of food I couldn't touch before. I must admit, I have gone a bit too crazy eating the 'previously forbidden' foods- pizza, posh cheese, pork chops with a cream sauce, yogurt, chips, bread - all taste absolutely amazing now. I promise I will get back to my normal healthy diet once the novelty wears off....;-) Still in some post operative pain, so intermittent tramadol needed and can't lift kiddo, drive or do too much due to my sieve-like abdomen (4 little holes).


The actual op was fine. Our NHS health board has a tiny budget compared to Glasgow so they sent me down there to have the op. Luckily for me, it was a flagship hospital, built originally by wealthy private consortium then taken over later by the NHS. So it has a posh hotel attached where we stayed and we even got a swim in the pool! What was supposed to be a day case turned into a three night stay though as I didn't recover quite as well as most folk. 

They pump you full of gas to inflate you so they can see what they are doing during the op (it's keyhole). This gas then is supposed to slowly diffuse out of you within a couple of days. It was absolute agony! The gas just didn't want to shift and after the op. They didn't believe me that I'd built up an opiate tolerance and so didn't give me enough pain relief and I was screaming the place down. Eventually, 2 hours later a senior nurse came and got fed up of me freaking the other patients out with my banshee-like howling so she relented and gave me more morphine. I was throwing up green bile and every time I moved a millimeter, I threw up more and the gas moved and caused massive pain. They kept telling me to move about to make the gas go - I don't think so, love!!

The surgeon told me that the gallbladder wasn't necrotic or even inflammed! I'm not sure I believed him, it was constantly very painful for months before the op, I could feel it under my ribs on the right, always sore and mega sore during an attack. How it can't have been inflammed, I do not know. He said he was sending it to bacteriology to see if they could culture anything from it, which was fine. I told him they won't be able to culture Borrelia and it's difficult to culture. It was apparently too logistically complex to preserve part of it in alcohol or freezer to send for PCR testing at the national testing lab. Bah....I guess I will never have a definitive laboratory answer for what co-infections I'm actually harbouring.

The Scottish national testing lab told me they did not have not an accredited test for testing tissue for Borrelia burgdoferi s.l., so I guess that means it's impossible to get tissue tested on the NHS in Scotland. The English lab didn't reply to my email. Pretty poor when we know that Borrelia is found more readily in tissues than in blood.

The morning after the night before. I might look happy, and I sort of was but I actually felt like total shite. The more observant amoung you may notice my broken specs- they ran over them with a trolley!!! Which was handy....  

Smack, kinda. I used a lot pre-operatively as the attacks were every other day and were really really bad. Of course this drew incredulity from the medical staff- "morphine?, for biliary colic?? really??". "I had cholecystitis for five months and it was fine" said one nurse. Well bully for you!!!!!

They let me home when I stopped using the oramorph a couple of days later. Poor toots was quite disturbed by all the upheaval- she wasn't sleeping in the hotel and John had to start his new job so my folks came to take me home. It wasn't great timing as John was pretty broken from some displaced discs in his neck. He's been in a lot of pain and not able to sleep lying down, so it's been a pretty tough time for us all.

So anyway, a week after the op I'm not too bad. Can't drive or lift a 12 Kg toddler but getting better. In a week I will be resuming my super duper biofilm busting lactoferrin/xylitol/cefuroxime/rifabutin/septra ds/ciprofloxacin/tinidazole/diflucan/daraprim protocol. (nice cocktail, not all of those at once of course, and pulsed and rotated over a four week cycle). Not really looking forward to it, but needs must. Gotta nuke those slime-encased bugs once and for all. This protocol seems fairly unique to my Lyme doctor. He developed it himself from seeing what wound specialists were doing with the biofilm problem in wound healing. See this paper for a description of that.

Whilst I was off my face on opiates pre-op, I was trying to think of a fun way to describe the whole Lyme journey that we as patients make. One sleepless night, I came up with this little cartoon and it proved quite popular on facebook:

Not sure Hasbro will take this one up.


  1. Wonder whether the bacteria lab would be familiar with silver staining? Might be helpful for bugs that can't be cultivated easily but do show up in stains :) http://jmm.sgmjournals.org/content/23/3/261.full.pdf?origin=publication_detail

  2. So pleased for you that it is finally out. Pity they didn't want to culture it, though the results might have been one answer too many for the medics.