The Cardigan of Hope

Introducing you to the cardigan of hope...

Hello little cardigan! 

Let me explain. I bought this cardigan nearly three years ago. I was 10 weeks pregnant. I suddenly miscarried the following week. We were devastated. This was my third miscarriage and at 38, I wasn't getting any younger. I suspected Lyme may have been at least partly responsible for my pregnancy losses as it is associated with increased miscarriage risk.  Then two months afterwards, I relapsed with Lyme and co. My world fell apart and with it, my hopes of having a second child. Would I ever be free of this evil disease? If I did get remission again, would it prevent me from having another baby? I held onto that cardigan. It sat in the wardrobe where I glanced at it wistfully now and then. To me, it represented the hope that one day, I would be well again and we could complete our family. 

Well, the amazing news is, I'm pregnant! We are obviously over the moon. Just out of the first trimester and things are looking ok.  We have had three scans already, and the pup looks fine. I'm on azithromycin and amoxicillin to prevent transmission of Lyme to the baby and hopefully prevent miscarriage. 

Hello little pup! 

According to UK consultant obstetrician, Dr Sarah Chissell, the literature she reviewed suggested maternal Lyme infection is associated with an approximately 50% risk of intra uterine growth restriction, miscarriage or the baby being infected. That's in untreated mothers. In treated mothers, she estimates the risk to be 5%. I'm asymptomatic, and have been for several months, so I think that probably lowers the risk further still although there is no scientific evidence for that, it just seems common sense. 

Of course, we are not out of the woods. I'm on those two antibiotics throughout pregnancy but am aware I could relapse with any of the infections at any time. Babesia is a particular worry as that has been a very persistent bug for me and I suspect treatment options in pregnancy are limited. I've had some night sweats but that is seen in normal pregnancies and they've not been associated with frontal headaches or not come in clusters of 3-4 nights which was the Babesia red flag for me. 

So, we are keeping our fingers crossed and that cardigan is still hanging in the wardrobe. 

I realise that there are many Lyme friends of mine for whom this news will be bitter sweet. For many, Lyme has dealt the cruellest blow of all, it has robbed them of the chance to become a parent. My heart goes out to you. Don't give up hope would be my message. There's always adoption or fostering and remission IS possible. You can get there. I've been heartened lately by several Lyme success stories, it's not just me who has recovered their health. See this inspiring story of recovery on Lyme light radio: http://thedrpatshow.com/shows/mak-141217-moore.mp3

Hold onto that hope. Hold onto your cardigan of hope, your dusty mountain bike of hope, your textbooks, walking boots, rucksack, killer heels, driving licence, kayak, beautiful bridal shoes of hope, whatever it it may be. You can get back to you again. Life can be yours for the living rather than the enduring again. 

Success!!

WWOOOOHOOOO!!!! My appointment with Dr X went really really well. Better than I'd hoped. I am, apparently, 'way ahead of the curve' and 'doing very very well'. I knew the last bit- I FEEL well, but didn't realise I was such a star pupil! well chuffed. 

In Dr X's office after my consultation. 

He's tapering down my treatment to a skeletal antibiotic regimen, including minocycline, which I've not had before. the Mino is apparently for any Chlamydia pneumoniae or mycoplasma which might be lurking. he says it has good tissue and cellular penetration. After a couple of months, I go really skeletal (and I don't mean lose more weight, although with this low histamine, gluten free diet, that is a distinct possibility!) and go to just three days a month antibiotics- mino, rifampicin and septra ds for 10 months.  Woohooo!!! No more purse-busting mepron. he doesn't want to see me back in the office for another year! if anything changes, I am to call the office to discuss, and I know relapses can happen- they've happened to me before, so I'm not counting my chickens just yet.

He says that after 12 months of this skeletal treatment, my immune system should be tipped back into being fully back in charge and I should be 'bullet proof'. The best news is that he said that we could start trying for another baby this year, if we wanted. he said it would be ok, he would treat me throughout the pregnancy with azithromycin and amoxicillin. that reduces the risks to the baby to very small, especially since I am asymptomatic and have been treated for coinfections and biofilm (and I think much more throughly than last time). He supports breastfeeding, thinks it is a good thing, but does treat with azithro and amoxy whilst breastfeeding and recommends probiotic drops for the baby. I asked about risks to John, he says he thinks it is sexually transmitted. he would put john on the same three day a month abx schedule that I'd be on, but would have to see him in person to prescribe that. I will have to discuss with John what he wants to do. I got the feeling Dr X didn't think that in my case, the risks to john were significant, but I'd not want to put him at risk. Dr X says we don't know the size of the risk to partners, and putting the partner on a preventative antibiotic schedule isn't probably ideal, but it's probably better than doing nothing. I agree.

So I'm exceedingly pleased. I'm not out of the woods yet, but I'm close to the edge and I can see blue sky. Our daughter apparently asked John if Dr X had fixed mummy, and did that mean I could go to the woods and up mountains with her now? yes, baby, he has, and it does. Made me cry, she's a wonderful little girl.

I made Dr X a couple of thank-you cards, featuring a photo of kiddo and I up a hill, wearing green and Lyme ribbons, and a green monster that kiddo had made. She'd drawn inside a picture of "mummy's american doctor'. I also wanted to thank him for coming to the UK a couple of months ago to a one day seminar in London. I didn't go, but it was to try to educate our doctors, and apparently, his lecture was excellent. I really hope it has sparked a few of our doctors into being interested in learning more.   

So, what has made my treatment so successful? I think it's a combination of a few factors:
1) I have not gone untreated for a long time before diagnosis and treatment. little permanent damage has occurred. my last ECG was normal, after all of them showing conduction abnormalities, so I think even that has healed. 
2) I have been treated with pulsed, high dose, combination anti biotics and anti malarials/ anti protozoals. ALL of the common coinfections have been targetted.
3) pulsing has allowed for detox and allowed the infections to come out of hiding and cystic forms/tissues/biofilm.
4)supplements and herbals for detox have helped my liver to cope and made the treatment tolerable. I used to think detox was a load of shite, spouted by spa's to get money out of gullible folk. It is, but in the context of Lyme treatment, it's essential. if your liver and kidneys and biochemical pathways aren't functioning, neither can you.
5) sleep management. if you can't sleep, you can't heal. simple. my partner has been an absolute star and has allowed me to sleep in most mornings, which has really really helped. Dr X prescribes things to help you sleep.
6)Biofilm. this is not some half arsed theoretical thing, biofilms are ubiquitous, they are and established medical fact. there's lots of evidence that biofilms are extremely important in Lyme and co, and tackling them is essential to getting at most of the bugs. Dr X's has a very effective biofilm protocol.
7)Support from my family and partner. Financially and emotionally, this has been absolutely key.  If I'd been on my own with this, I'd not have been able to do it at all. I owe them the world and I love them to bits. It's incredibly hard, seeing a loved one go through all of this, and they've been there with me on this rather torturous journey.

My Dr isn't for everyone. I think really fragile patients would probably do better with a gentler approach. if you can't tolerate antibiotics, go elsewhere as he really doesn't use many herbals. if you have a lot of issues with mould, find another doctor. however, for me, he's been brilliant.

The journey isn't over yet, but the biggest bit is done and I feel like I can, at last, live a normal life.

Ssshh..Remission?

So y'know how in those loony tunes cartoons (of my imagination), they have a little devil on one shoulder and an angel on the other, egging them on? That's me that is. Devil says "ssshh.. don't tell anyone, but you're in remission". Angel says "look, daftie, you've been here before. don't get carried away, love. Remember that time you went to a Lyme conference wearing a badge saying 'lyme free thanks to Dr D' then relapsed a month later? yeah. Calm the F down.

Before

After

I haven't kept a symptom diary or blogged in a while because A) I've been busy with that thing called NORMAL LIFE ! and b), as the queen of melodramatic health crises, I developed severe asthma and eczema which has landed me in A+E the emergency asthma nurse and meant I've spent a lot of time familiar with the sofa and netflix.

So what's been gaan on? Prior to this asthma shite, I had been feeling pretty normal (insert big fat smiley face). Went camping, mountain biked 5 miles and 13 miles on consecutive days with no after effects (apart from blubbing in the car with the enormity/relief of it all), sorted some of the long overdue things around the house, even bought a new swimsuit in preparation for going swimming with kiddo.

Carried kiddo up our local hill on the day of the worldwide Lyme protests.

Then developed weeping disgusting eczema, an endless hacking asthmatic cough and went and had an asthma attack for the first time in 8 years in the car park of the supermarket.

Brilliant online friends (Lyme disease UK discussion group, you are fab), helped me figure out the asthma/eczema was probably due to an overload of histamine. The health detectives that are my pals and I deduced this was due to 1) Cefuroxime I'd been taking for Lyme which inhibits Diamine Oxidase, the enzyme which normally breaks down hsitamine 2) snaffling an entire large jar of chilli pickled gherkins- very high in histamine plus other histamine containing foods 3) those pesky pollen levels which have been sky high this year and 4) I'm probably one of those itchy wheezy souls prone to this type of thing (history of eczema/asthma/hayfever/dermatographism).

So, the upshot is, I'm in the USA to see my lovely Lyme doctor. I want him to agree with the devil on my shoulder and tell me I'm in remission. Does being tired in the evenings count as remission? (but what parent of a three year old isn't tired in the evenings?). I'm not so great at multitasking and sometimes struggle to find the right word if I'm tired. Maybe though,  this could be just 'me' or maybe permanent neurological damage? I might still have mild insomnia, I haven't tried stopping the bedtime GABA/Gabapentin/melatonin yet as histamine has caused worsening insomnia (who knew?!).

I feel well. I feel like if it weren't for this asthma, I could climb a (small) mountain/tackle the overstuffed cupboards/get on with living completely normally. In the meantime, I'm on a low histamine diet (duller than Melvyn Bragg), antihistamines, asthma meds and a ton of creams and greasy gubbins. I also stopped cefuroxime. Hoping, Dr X agrees and sometime soon, I can start saying the 'R' word out loud.

Tick tubes

Springtime is the season of cute fluffy lambs, ickle yellow chicks and tits in me box (nesting box, you filthy animals!). It's also the season of evil shitbag ticks roaming about waving their vile little legs, waiting for some poor creature to brush on past whilst doing the gardening or foraging for a tasty morsel.

Then I saw this cute little fella (wood mouse??) in our garden, I thought, mmm..adorable as you are, you're probably carrying ticks and you could well be infected with Borrelia burgdorferi (see this study in the netherlands). Wood mice can infect larval ticks with Borrelia burgdorferi s.l. according to this swedish study and  this german study.

There are some things you can do to stop these demon ticks embedding themselves in your flesh and sucking the life force out of you- see this excellent easter blog post by tick talk Ireland on preventative measures and this page by BADA-UK. My personal weapons of choice are pictured below. DEET is normally recommended as the most effective repellent but I don't like using it and it's not suitable for young children. BADA-UK say that Mosiguard natural (which contains the natural product citridiol) is as effective as DEET, and I know on midges it is very effective. I also like Autan (which contains Icaridin).I should add that it's important to put repellents on where ticks are likely to get access to your skin. I put it on hands, wrists, lower legs, waist and neck, plus my daughters hairline.

When I am well enough to start hillwalking again, I will impregnate some clothing with permethrin (the lifesystems product pictured), as permethrin impregnated clothing has been shown to be very effective in preventing tick bites.

I keep this arsenal handy from April-October and even use repellent on a warm winters day if I'm doing something tick-risky.

This year though, I have added a new and excitingly home-made tool to my 'nuke the buggers' toolbox. Tick tubes are cardboard tubes filled with permethrin-impregnated cotton wool or other natural nesting material. The idea is that mice take the cotton wool into their nests and in doing so, kill all their fleas and ticks and thus help to reduce the number of ticks milling about locally. There are commercially available tick tubes from a company called Damminix and these have been shown to be very effective in one recent study. A friend has used these in their garden and they say that after they started using them they saw no ticks at all in their garden whereas before they'd had quite a few and family members had been bitten in the garden. Damminix tick tubes are not available in the UK,  to my knowledge, and so I thought I'd make my own (plus I'm a skinflint!).

So here's how I did it:

Toilet roll inners, cotton wool balls, Lifesystems permethrin spray, some disposible gloves, a bit of cardboard to spray the balls on and acrylic paint to attempt to waterproof the tubes a bit. Sorry can't seem to rotate the photo!

I thought painting the tubes in acrylic paint first would help to stop the cotton going soggy and might stop the tubes disintegrating too fast. I wore disposible gloves when handling the permethrin or permethrin soaked balls. BTW I'm not paid by lifesystems or anything, I just bought that because it was in a handy spray, available from a UK seller, contained only permethrin (I didn't want to use other, potentially more toxic insecticides) and wasn't a huge volume of product that I'd have to later dispose of.

I used cardboard to spray the cotton balls on and dry them on as this can be binned rather than having to wipe down a surface with a cloth which would potentially allow permethrin to get into a water course if I rinsed out the cloth. Permethrin has very low toxicity to most mammals but it highly toxic to aquatic organisms so please take precautions to avoid swilling any of it down the sink. It is also highly toxic to cats, so if you have cats, perhaps best to not impregnate clothing with it. This is the reason I put only four balls per tube as I didn't want any cotton sticking out of the end where cats could get to it. I don't have cats but my neigbours do.

Stuffing me tubes

It took a whole day for the permethrin soaked balls to dry, you don't want to put them wet into the tubes- not very attractive as a mouse duvet!

Place the tubes where mice are likely to stumble upon them. Mice don't generally like being out in the open, so behind pots and containers, near walls with crevices, alongside fences and at the backs of borders. Also perhaps under a bird feeder as mice do love a bit of discarded bird seed.

Worth a shot I reckon, and pretty cheap. I haven't noticed ticks in my garden, but we do have deer and sheep just across the road, and I have plenty of birds which are competant hosts for Borrelia. We've even had a pheasant on our lawn before, also a competent host.

I has been pointed out to me that permethrin is listed here as banned in the European Union. However, I think it might have been banned just as a plant protection product due to it's affects on aquatic organisms should it get into water courses (see this bafflingly opaque EU directive). As far as I can make out, it's still allowed as a human and veterinary medicine (e.g. head lice treatment and tick and flea treatment for dogs), wood preservative, a spot treatment as an insecticide/acaricide and on some textiles (see this document). I reckon it's use in tick tubes would fall within these allowed applications. If someone else knows differently, let me know!

Just to reiterate, don't throw it in watercourses or down the sink as it will kill aquatic organisms and don't let cats come into contact with it.

A trio of fantabulous European Lyme conferences!

Well, it's all going on! April, May and June are busy busy busy- three fanastic European Lyme meetings are happening - one in good old blighty!

Very brilliantly, a private sponsor has arranged for a panel of seven US tick borne disease doctors and researchers to come on over to London to speak to our doctors for a day symposium on June 7th.

In the words of the sponsor/organiser (from the blog of Joanne Drayson, UK Lyme patient)

The Speakers will be seven USA TBD Specialists, all of whom have over 20 years experience in dealing with these insidious infections. The purpose of this meeting is to discuss, with interested UK Doctors, Vets and their Researchers, testing, diagnosis, treatment, and the consequences to patients and healthcare providers of missing or not recognising the symptoms early.

A situation that is fairly unique and very important, is that in most specialties, the treating doctor will have had no personal health experience of the illness he/she  is treating, whereas in the case of TBD infections  the visiting  American doctors have either had a personal brush with Lyme Disease etc or, have family members who have been afflicted. 

There is a lot of interest in this symposium from Senior Doctors etc, possibly due to the fact that many patients whose symptoms have been missed or misdiagnosed are encroaching on clinics for Neurology, Cardiology, Ophthalmology, Endocrinology, Rheumatology and Chronic Pain.

The warnings have been around for many years regarding long term damage to human and animal health with regards to Tick-Borne Diseases. Can our health authorities really afford to continue with the misconception that Ticks and the diseases they harbour are a 'rare and regional' problem, I think not. 

Education is the key to the most difficult of situations, and it certainly is to this one.

It will not be open for patients to attend, as the aim is to get doctors talking to each other.The exciting news is, Dr Matthew Dryden and Dr Tim Brooks are going to be attending the symposium and the NORVECT conference (see below). In case you weren't aware of who these people are, Dr Dryden is in charge of the newly opened (and sadly soon to be closed) national Lyme referral 'clinic' at Royal Hampshire County Hospital in Winchester. Dr Tim Brooks is head of the Rare and Imported Pathogens Laboratory (RIPL), Porton Down, which does the NHS Lyme disease testing for England and Wales.  

Thier attendance at the London Symposium was facilitated by the wonderful Lady Mar.

WOW!! Thank-you so so much to the person who sponsoring this and absolutely great that Drs Dryden and Brooks are attending. If you have any names of genuinely Lyme-interested NHS doctors who would like to attend, please do email them to Joanne Drayson for her to pass onto the organiser. Joanne's email is j.drayson@hotmail.co.uk. Please include a bit of info about that doctor. We don't want valuable spaces taken up by die-hard IDSA ers, so they sould be open minded and interested in learning. Consultants would be great!

I'm feeling happy!

 
There is also the ILADS (International Lyme and Associated Diseases Society) conference in Augsberg, Germany on April 25th and 26th. Click here for the programme. Dr Armin Schwarzbach, of Infectolab/BCA, is talking on laboratory testing and Dr Daniel J. Cameron, is speaking on building an evidence-based laboratory practice, which should be interesting.




Then there is a star-studded line-up for the NORVECT conference on 26th-27th May, in Oslo, Norway. "Who are NORVECT?" I hear you ask- this is what they say:

About NorVect – The Nordic Network for Vector-borne Diseases

NorVect is a Nordic interest group, dedicated to building and sharing vital knowledge about vector-borne diseases – particularly in the fields of diagnostics and treatment – across our countries.
In cooperation with authorities and other interest groups, we arrange knowledge-leading seminars, conferences, and events covering leading international research and insights on vector-borne diseases.
In doing so, we strive to create a platform for continuous improvement, and for an open and constructive dialogue between patients, their families, health practitioners, authorities, and politicians alike.
NorVect is founded and run solely by patients with the desire to make a difference.
Focus on research, focus on dialogue, and focus on the patients are the cornerstones of our organization.

Think that sounds good? You wait till you see the speakers they have arranged, they are:


Joseph J. Burrascano Jr., MD
Richard I. Horowitz, MD
Edward B. Breitschwerdt, DVM
Alan MacDonald, MD
Eva Sapi Ph.D.
Christian Perronne, Ph.D, MD
Jyotsna Shah, Ph.D, CCLD, MBA
Judith Miklossy, Ph.D, MD, DSc
Carl-Morten Motzfeld Laane, Ph.D
Randi Eikeland, Ph.D, MD
Bela Bozsik, MD

Fantastic work, guys!! This is the programme. What an amazingly exciting event this is going to be. Before you start rushing to book your flights and get your skis out of the loft, please take note that this conference is primarily aimed at Medical professionals. They say :

Due to limited space, we will not be able to open up for patient registration before one month prior to the conference. They also say: The Norwegian Medical Association (NMA) is currently reviewing our application for doctors’ specialization credits. Information will follow within the next few weeks.

I think that's the equivalent of continuing professional development (CPD) credits, so doctors should be able to attend and claim back expenses and add it to their CV as training (if the NMA approve it).

I am very encouraged that Dr's Brooks and Dryden are willing to attend and hear what these highly experienced Lyme doctors and researchers have to say. I hope they listen and learn, for there is soooooo much to learn. I think, (I hope) it will open their minds as to the complexity of it all. I also hope the speakers provide citations or other scientific evidence for their claims. This is difficult to do in a talk, I know, but it will really help the IDSA supporters see that what we as patients have been saying is not just plucked out of thin air. Fingers crossed that the coffee time chat will be fruitful and not antagonistic.

Why not write to your doctors to tell them about it? I have! I've not had a reply and don't expect them to actually go, but if they don't know about it they don't have the opportunity of going, and I hear Oslo is a lovely place for a weekend city break ;-)

Turning a corner

In the words of James Brown, "I feeeel good, I knew that I would now... I feeel goood, I knew that I would now, so good, so good, I got you (you - you bastard Lyme!).

That just about sums it up. I had an inckling that this gallbladder hoo-hah was all that was holding me back from feeling almost normal. Well, this week, I'm smuggedy smug wifey, I was right!

Last month, three days after my rancid little ball of pus was exorcised, I turned 40. I had told myself that I'd wanted to be symptom free by the time I was the big four-O but y'know, shit happens, and I'm not far off. So I have a few weeks of being sore from the op and then decide to throw a PAAAAARTTYYYY!!. For a start I can eat fun food again and I feel that 40 is a bit of a milestone. You can either hide in a corner with a bottle of Scotch, some industrial strength wrinkle cream and blub about your advancing years, or you can go, 'screw it, I want pizza and cake and friends to share it with'. Guess which option I chose?

The downside to this is that it did involve unusual levels of spoon expenditure (see spoon theory, here). I'm pretty well off for spoons these days, so I wasn't too worried. The couple of weeks before the party, I started 'operation anti- entropy'. The months of being an anorexic smackhead (slight exaggeration for comedic effect there), had taken their toll and the house was something of a pigsty. So the piles of doom got sorted, some cupboards of dissarray got sorted, some photo frames got painted and hung, bathrooms got cleaned, and the house was again habitable.

The week of the party involved having a stinking cold (two days on the sofa), baking of two lots of cakes, an ultra-shop at two supermarkets (on my own with a toddler, in one day), baking of lots of bread and even, duh-du-duh- tidying the dreaded playroom. My two lovely sisters were coming to stay, which meant washing of bedsheets, towels and removal of the laundry Himalayas (not merely a laundry mountain but a whole mountain range) from the spare room.

Day before the party, the other playgroup mums had organised a fundraising cheese and wine do. Now, of course I had the option of being sensible and not going in order to conserve my energy. Instead, I took the not so sensible option of attending, drinking unknown quantities of wine (they kept topping up my glass!), talking nonsense, munching delicious cheese, then eventually staggering home at midnight, absolutely haddocked/mullered/wasted/battered/other made up adjective. MAN, I was hungover the next day!

Still, the party went with a swing, I made pizza for 14 adults and didn't maim myself in the process. We had a great time and I got to spend some fab quality time with my sisters and nephew. We even went for a woodland walk the next day. Surely, there must have been payback for this ridiculous level of spoon expenditure, you're thinking? Well, yeah, some post exertional malaise, but not as much as I'd feared. Three days of being unusually tired and needing daytime naps and early bedtimes. Bit of increased insomnia (adrenal fatigue?) and a wee bit of C3PO-style stotting with my legs. Seems I just about got away with it. And no, the cakes and pizzas weren't gluten free or low sugar- don't be daft! ;-)

Nigel Slater's pistachio cake - very yummy.

Overall, I am doing brilliantly well. My remaining symptoms are insomnia - difficulty falling asleep, staying asleep and need to nap during the day. I have a slightly altered gait sometimes (the plexitis) and occasional weak legs. Inability to multi-task (can't have TV or radio on and speak to someone, can't drive and talk, complex meals are difficult to cook). Poor memory, I have to write everything down and even then, I forget appointments or what I'm mean to be doing that day. I have poor word recall-  I substitute words without realising and can't remember the right word or it takes a long time to remember it, making my sentences a bit stop start. Some fatigue, haven't got the energy in the evenings to do much, if anything. If I get childcare, I nap as I know sleep makes me feel so much better and lack of sleep makes me really sick.

Really though, that is a loooong loooogn way from where I was. I'd say I've gone from 40-50% normal functioning to about 80-85%. Pretty darn good progress! My new goal is to be symptom-free by the end of the summer (apart from maybe the memory/word recall/multitasking- brain damage?). I resume the hardcore schedule in two weeks, so I expect to herx then.

In the meantime, I shall lay off the pizzas and booze, resume healthy eating, get back on my bike, have fun with tiddler, continue my Lyme activism (including a talk to 70 forestry workers- eek!) and LIVE LIFE!!!

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).

Orgasmic

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.

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? 

PEOPLE ARE DYING BECAUSE YOU ARE NOT LISTENING!!!! 

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.