Friday, 11 April 2014

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 ;-)


logo





Thursday, 6 March 2014

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!!!


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).

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.

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? 

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.

Friday, 22 November 2013

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!!!!





Wednesday, 13 November 2013

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.

Wednesday, 30 October 2013

Up, up and away!!!

Roll up, roll up for this weeks issue of 'Good News Extra'.

After the pericarditis and feeling so consistently crappy on the biofilm/protomyxzoa protocol, I was starting to doubt my LLMD and was getting quite disheartened about the lack of progress - seeing Dr X whilst using a wheelchair did not feel like progress from my last trip to Washington 9 months ago. I was fully expecting the pericarditis to set me back by many months and for the new Xylitol/Lactoferrin protocol to be hell on earth. I have been pleasantly surprised on both fronts. Like one of those insanely bouncy little rubber balls, I have rebounded with amazing speed from the manky heart episode (with the aid of Allicin Max, my new favourite viral treatment). The dreaded 'ultra herx' with the new 'chewing gum, iron sucker' protocol never materialised- herx yes, but I wasn't bed bound or reduced to a quivering wreck by it.

It feel like the hideous Protomyxzoa treatment has finally paid off. In the last few weeks/months, I have done a ton of things which would have been impossible before. I've been camping, done an 8 mile bike ride and 10 mile bike ride (mountain bike, off road, some little hills), managed the weekly grocery shop fine- usually not even needing to rest before unpacking. Started to finally decorate the hallway- I bought the paint when we moved in just before I relapsed. Started to get ontop of the domestic chores- although there is still a backlog of clutter (that pile of doom in the kitchen keeps glaring at me). I've not needed a nap every single day (which is just as well, as kiddo has dropped her afternoon nap). Today I am going to drive to my friends house 40 minutes away and I'm not thinking 'bugger, I'm going to be struggling to not mow down pensioners and hurl us down a hillside'. Yesterday I walked round town quite a long way- not at a snails pace, not needing to sit down all the time, with a normal gait. Yes, I did need to spend the evening on the sofa as a result but I'm not paying the price today.

Excited to be back on the bike- and looking like I'm on day release.

I'm not out of the woods yet- I'm still struggling with sleep. I got all over confident and tried to do without my sleep aids a few nights ago- a failed experiment. I normally take 400-600mg GABA, 10 mg Amitryptiline, 300 mg Gabapentin and on bad nights 3mg Melatonin to sleep. I still need it.

I still need daytime naps on some days. I still have fairly weak muscles - my painting arm is weaker than it should be but much better than it was- I can blow dry my hair now without struggling. My heart is still damaged, but that's probably permanent.  We decided against the angiogram (invasive, some risks, wouldn't change my treatment), the cardiac MRI showed a fair few issues, the main cause of the poor movement of the front of my heart is probably atherosclerosis (from Lyme- I have a pretty good diet). Gag reflex is still gone. I still have word finding difficulties. I get eyelid ptosis from time to time. I still have to have my gallbladder out - I have an NHS appointment coming up to discuss that.

However, there is a long list of symptoms which I am just not having anymore- dizziness, tippy feeling, headaches, severe fatigue, plexitis and alterered gait/not being able to walk, ataxia, brain fog, migratory joint pain and shooting pains in muscles, bladder spasms, memory problems, concentration and cognitive problems, nausea, nearly fainting a lot, erratic blood pressure, twitching muscles, skin is no longer blotchy, nail beds are less white, constipation is gone, v light periods back to normal, hip pain gone, random days of crying a lot - all these have gone in the last couple of months/6 weeks.

Of course, I could still slide back into the Lymey abyss - if I get a bug or perhaps after my gallbladder surgery. Our daughter is not having the live attenuated flu vaccine as she has to stay away from immunocompromised patients for 2 weeks afterwards and if I can get pericarditis from hand foot and mouth disease and if a cold puts me in a wheelchair, I think I'm probably 'mrs shitty immune system' still. I'm also not having the flu vaccine - I think I'll take my chances and just obsessively hand wash after being out in public.

So to anyone out there who is wondering if it's possible to ever recover- I hope this gives you hope. Yes, I have access to a top LLMD,  I have money to pay for it. Yes, I can tolerate the antibiotics and don't have gut problems.  Yes, I wasn't infected for a long time before starting treatment. I know I'm really really lucky and for some (probably most), it's just not so easy. Hang in there, I am hearing horrendous stories every day, and doing what I can to help these people.  Keep searching for answers, keep questioning things, keep talking to other sufferers- I recommend the facebook group UK Lyme disease discussion group and Eurolyme as being helpful places to get support. Never give up- there's always something that can be done.