In, out, shake the gallbladder about.

Oooh, what a hokey cokey time it's been. Two hospital admissions in the last ten days. Both for this rancid, gravel filled, cess pit of bacteria and bile that is nestling under my ribs.  My gallbladder and I have officially fallen out. It has a strop every time I eat and it threw a completely psycho wobbler at me eating pineapple the other day. PINEAPPLE!!! Oh ffs, I knew it had a problem with fat- so have been super low fat (which is more difficult that I anticipated) but the pineapple wasn't battered or anything! grrrr. so yeah, twenty minutes after eating it, I was reaching for the tramadol, which was about as effective as Boris Johnson. 

John arrives home (phew!). Pain continues, chuck down some paracetamol and codeine for good measure (Opiate- tastic). Pain level escalates from a 7 to a 10, cue me writhing about on the floor trying not to upset kiddo (who fortunately is watching the ipad and ignoring mummy squeeling and swearing). NHS 24 say they can't send anyone out - John rings them with me screaming "I just want morphine!!" in the background!

So we ring the childminder who is an absolute star and comes over to look after kiddo whilst we race off to A and E, jumping red lights and tooting people. I'm in absolute agony, unable to keep still, a nurse opens a door, looks at me and I plead to her for morphine. The lovely doctor is pretty quick with the drugs, but despite the full dose, I can still feel the pain. Good stuff though that smack, I can see why junkies find it a bit moreish (sorry, bad taste humour...  I am NOT advocating drug abuse!).

Doing a Zammo

I get carted off to the general incompetancy ward (I think it was actually general surgery). All night they are slamming doors, shouting, wheeling spectacularly noisy trolleys and ignoring me. The doctor eventually shows up 4 hours after I get admitted and I get my long overdue morphine top up.  They decide to take my gallbladder out but not until it gets less inflammed. Then they change their minds. They decide to do a repeat ultrasound (the last one was about 10 months ago) and then change their minds. The surgeon is trying to find every excuse he can not to put me on his waiting list. "but I doubt removing your gallbladder will address the pain" he says. Why? "because this started with a bike ride"- no it didn't! It happens after eating, I had told them about the bike ride because I was trying to explain how variable my Lyme can be. "well, you have a history of backache". yeah, years ago, because I was hunched over a microscope at work- nothing to do with this!. "well, you have generalised pain problems" he says. Actually, I reply, pain has always been a minor feature of my Lyme disease, I'm quite lucky that way. For goodness sake!

Apparently it has to go to a multidisciplinary panel to decide my fate because I am complex (I have Lyme). So when it suits them I have Lyme, when it suits them to say I don't, I don't! ach!!!. Also, he wants a report off the cardiologist. This is fair enough but he could have asked for this weeks ago when I saw him in clinic and told him of my heart problems. He says they can't use Lyme as part of the decision as to whether to operate, for medico-legal reasons. Well, it sounds like they are using it as a reason NOT to operate, but can't use it as a reason to operate- despite the letter explaning why it's an issue for Lyme patients from my LLMD. 

So, what's the evidence for a connection between gallbladder problems and Lyme? Nothing concrete as far as I can ascertain from pubmed and google scholar.  There is an association between ceftriaxone use and biliary sludging (sludge in the gallbladder) but I've not had ceftriaxone since 2008 and I had no gallbladder type pain then. A well respected Lyme doctor in the states, writes in  his excellent blog :

"This an area of Lyme medicine which deserves more attention. Many Lyme patients end up with removal of the gallbladder. Lyme can infect the wall of the gallbladder and cause chronic inflammation. This appears to happen with increased frequency when there is also evidence of Salmonella infection. In the past most gallbladder disease was related to gall stones. There has been a change. Most patients with gallbladder disease no longer have stones; they have chronic inflammation of the gallbladder. Patients with gallbladder disease have recurrent bouts of abdominal pain which starts out mild but gradually builds up to severe pain. The pain may be located in the right upper abdomen or be generalized to the entire abdomen. Nausea and vomiting may occur. In the past doctors have ordered a sonogram to evaluated the gallbladder. When the problem is related to infection this test will be normal. The diagnosis is made with a nuclear medicine scan called a HIDA scan, with the administration of a hormone called CCK. The hormone injection will likely cause the symptoms to recur and the test will showed a low ejection fraction, indicating abnormal functioning of the gallbladder. Generally, successful treatment requires removal of the gallbladder which can be done with a minimally invasive laparoscope. The fact that intravenous Rocephin is known to cause gallbladder attacks may suggest that this is a sort of Herxheimer reaction involving a gallbladder which is already infected with Lyme bacteria."

I don't know if I have salmonella infection or not, I've never been tested. I have written to the main UK NHS testing laboratories asking if they would test my removed gallbladder- these are the Rare and Imported Pathogens lab at Porton Down and  the Scottish Lab at Raigmore, Inverness- which, sadly, is called the national Lyme's testing service on their website. (spot the mistake!).  Both have not replied to my very polite emails.

I am absolutely convinced that these episodes of pain are related to my gallbladder, They are typical of biliary colic - they happen after eating (apart from pineapple, previous episodes have been associated with eating some fat). They are localised in the right upper quadrant- i.e. just under my ribs on the right hand side. The pain radiates around to my back and often I get pain in my right shoulderblade. I always get intense nausea with it and sometimes vomitting. The attacks last for a number of hours- several to around 8hrs, but recently I've been constantly mildly sore in that area. 

They could be just gallstones- there is a medical mneumonic,  'fat, fair, female, fecund and forty'. well, I'm definately female, thin if anything, had one child, nearly forty and fair, so half right. I'm not one for munching on chips and pizza everynight, we have a fairly low fat, fibre rich diet as a rule, so I don't think it's diet induced. The ultrasound 10 months ago showed lots of 'gravel' in my gallbladder (which the sonographer said can cause a lot of pain).  I have to trust the experience of my Lyme doctor who says that his patients benefit from having the chronically inflammed  gallbladder removed, he has seen thousands of Lyme patients and I think he knows his stuff.. All I know is I want this vile little organ out - NOW!!!!

One for the Newbies

The ace people at Lyme disease UK asked me to write a guest blog post for their website, so I thought I'd also put it on my blog, here it is:

So, I’m, a guest blog! How exciting, do I get fluffy towels and a mini hand soap? Cool.

I was asked to write about my experiences of the NHS and Lyme, and working within the system. My experiences- ‘mostly pants’ just about sums it up. Working within the system – accept they will know as much about Lyme as I know about football and get from them what you can.

Firstly, I should emphasise that I am one of the fortunate ones. I got diagnosed quickly and could afford to ditch the NHS numpties and get help promptly, many (most) aren’t as fortunate, so my story represents the ‘not too bad’ end of the spectrum, believe it or not....

One day, 5.5 yrs ago, a teeny tiny tick on the west coast of Scotland changed my life irreversibly. As an ecologist/entomologist, I had heard of Lyme, so my first doctor was Dr Google, who suggested that the severe flu-like illness, sore knees, stomach ache and headache, 11 days after a tick bite ‘could’ have been Lyme. Then followed Dr “yeah, it’s not flu” (GP), Dr “you are drenched in sweat” (Infection registrar), Dr “mmm...scratchy head at negative NHS ELISA”, and Dr “here’s some low dose doxycycline, take your meningitis symptoms and inability to walk properly home with you” (Infection registrar).

I negotiated for an increased dose of doxy from Dr scratchy head and after 4 weeks of that, I was a bit better but still walking like an arthritic antelope and feeling grim, so back into hospital I went under the ‘care’ of Dr Scratchy head and his sidekick Dr Klutz. Dr Klutz earned his title by leaving a dinner plate sized bruise on my arm from taking blood - eliciting a ‘wow!’ from Dr “well, there’s clearly something wrong with you” (Junior). Dr Klutz then got his gold star in cack-handedness by cocking up my lumbar puncture, leaving me with the mother of all postural headaches for 6 days. Spinal fluid leaking, head in a vice, throwing up from the pain, I stagger down the corridor, crying, looking for a nurse to give me painkillers. They had put me on the top floor alone so they could forget about me and ignore my buzzer. Passing Dr Klutz, with tears streaming down my face, he ignores me and then refuses to come speak to me about why I have a hole in my dura. That was a fun week.

An MRI of my brain showed some hyperintensities but these were glossed over by Dr “you have a software problem” (Neurologist). Software boy referred me to Dr “you’re not nuts”- a  consultant psychiatrist. Meanwhile, Dr Scratchy head had gotten back another negative NHS ELISA and had morphed into Dr “you’ve had enough antibiotics, away with you”. His pal, Dr “post viral fatigue, dismissive wave of hand” concurred.

My private specialist experiences were somewhat better- Dr “ you’ve got Lyme. Me- but, ergh,...but.. I’m telling you, you’ve got Lyme...hard stare”. OK then. She brought in Dr “ooh, lets video your funny walk” and I also saw Dr “let’s not stop the antibiotics yet, I don’t want to see you in a wheelchair”. With their help, I got well, eventually with the ingestion of a ton of antibiotics (3 months IV Ceftriaxone, followed by 16 months combination orals). No symptoms at all for 2.5 years, then I relapsed, possibly due to a combination of stress from a house move, a miscarriage and a minor bug.

This time, I was what they call a ‘patient expert’. I’d given talks on Lyme, had a filing cabinet full of Lyme papers and kept up with the latest research. I wasn’t taking any shit but at the same time, I knew fighting the NHS was probably going to be fruitless. So I’d try to get out of them what I could. For actual Lyme treatment I knew I would probably have to pay privately. Knowing this made the whole thing a lot less stressful- my life wasn’t depending on these people. I knew that I knew much much more than them so their ill informed opinions didn’t really matter to me. They still came out with some corkers though. Dr scratchy head became Dr “it’s a rhinovirus”. This is what causes the common cold- some cold!. I was referred to Dr “you’re like a world war 2 solider who’s legs wouldn’t carry them out of the trenches” (consultant neurologist). She was also known as Dr “pants on fire” as she had ignored the findings of the electrophysiologist – Dr “absence of proof is not proof of absence”, who found some evidence of nerve root problems. He was actually interested and open minded and thought for himself. Of course Dr “pants on fire” didn’t want to hear his opinions or believe the results of her own tests, so she stamped “nutsoid” on my file. So I stamped “official complaint” on hers....

Fortunately, my GP, was an intelligent woman who seemed to believe me. I found her by asking another doctor at the practice who the best person was to deal with Lyme. I was completely honest with her, gave her some recent key papers (but not too many). I drip fed her info and kept in fairly regular contact, seeing her when I thought she could help me with something. She couldn’t do anything re treatment as she was she was out trumped by the hospital doctors. She did agree to give me monthly liver function, kidney, thyroid and blood counts though. She also wrote to various NHS departments asking for heart scans and tests (that were done- my heart is officially poorly), thyroid scan (refused), and gallbladder scan and removal (scan done, removal pending). She asks “what can I do for you?” when I go in and though I know I can’t ask “give me free and competent NHS treatment”, I can at least get painkillers, omeprazole, ECG’s and a sympathetic ear from her. She doesn’t pour scorn on my American Lyme doctors opinions and she agrees that stealth infections are ‘scary’.

So what have I learned from all of this? You probably have to be your own doctor. Yes, I know this is probably like asking Kerry Katona to perform brain surgery, but that’s the way it is. You need to take ownership of you. Read, read, and read some more. If your symptoms don’t fit your diagnosis, don’t just accept it. Use all the resources available to you - UK Lyme disease discussion group on facebook is a great place to find out more and get support. Lyme Disease Action,(including their two email addresses for patients and medics ),  Eurolyme, Dr Burrascanos Guidelines (which are a bit old and not referenced but are still very useful, especially for people new to Lyme). I also quite like the german guidelines  which are well referenced, acknowledge the areas of uncertainty and are reasonably detailed. Tick talk Ireland have a fantastic blog, I particularly like their articles on  Mythbusting and Guide for Newcomers.  BADA UK have good info on tick removal, prevention and other tick borne diseases.  Lyme books such as Cure Unknown and Dr Horowitz’s new book would be worth reading.  Watch “Under our skin” (available on you tube, bit cheesy but helps beginners understand the controversy.) Probably best steer clear of other you tube videos unless you want to become massively depressed about it all.  You can also watch my overview talk on Lyme which I gave to medics at my local hospital in 2012 (join the facebook group and it’s in the files).

Getting a diagnosis is just the first hurdle. There are a ton of treatment options, some pricier than others. Choose carefully, seeing a Lyme doctor privately can be very expensive – especially the start up costs and you don’t want to make an expensive mistake. I have a collection of patient reports on various Lyme doctors and clinics, if you would like a copy or would like to contribute with a short review of your own, please email me at nseal@yahoo.com. Most of all- do not give up the fight and trust your instincts.