The calm before the storm

For the last 6 days, I have not been Lymeywifey, I have been normalwifey, and it's great! Apologies in advance to those who are still stuck in the depths of Lymeville, I know it can be hard to hear about people doing stuff you can only dream of doing.

So after a period of a few months where I've not really felt normal at all, just constant crappiness and wibbliness, it is a welcome change. I've been making the most of it by going a bit crazy doing stuff- I know it won't last and grimness is on the horizon when my new drugs arrive and I can start my slime blob (Protomyxzoa rheumatica) regime.

In a fit of athletic prowess, I decided to walk up our local wee hill with kiddo in the backpack. I was sort of anticipating leg meltdown halfway and having to turn back, but I just kept going and we made it to the top (and back again). Fantastic. While I was in remission I was doing that and the neighbouring hill about once or twice a week, carrying kiddo and stomping up no bother. Since I've relapsed a year ago, I've been up once, and that was with my partner to carry kiddo and using crutches on the way down. This time I took walking sticks and used them and kiddo ran all the way down, which was a help since downhill is much worse for my legs. I wasn't even broken afterwards! Yeah, I did require a 2 hr nap straight after and was a bit elvisy that night, but basically fine. Fandabbydozy!

Very very chuffed.

The following day we went to a vintage steam fair with friends. I could walk fine, no symptoms at all. was nawty and ate a donut and vension burger- compulsory really, but no nasty effects bar a bit of bloating.  Then that evening we had a rare evening out- brother in law was playing a gig, so we went along. I was super nawty and had a pint of ale, which gave me a hangover, but at least I felt normal for a while. The following day I didn't do a  great deal, but the day after I was raking dead moss from the lawn and hoovering. Granted, I only did a tiny bit of  moss raking and had to collapse on the sofa after the hoovering, but not bad at all. 

Last night the shooting pains were back and I couldn't carry kiddo up the stairs this morning, so I suspect I'm heading for flare-o-clock. I've totally lost track of my 4 week cycle since I stopped doing a diary and was just quite sick most of the time. I'll have to get back to diary-keeping actually.

Dreading the new regime - a completely new set of drugs, most of which I've never tried before. Should be interesting. At least if I herx badly, I know there's still a fair bit of work to do in the war on my various bugs.

Protomyxzoa rheumatica and my new protocol

I'm so excited! And also really rather pooping my pants (not literally, incontinence is one Lyme symptoms I've fortunately not got). I had a lovely wee chat with my LLMD (well, Physicians Assistant) and they have decided to try me out on a new protocol, one rather evocatively named the 'release and sweep' protocol! Bring it on, lets bring out the big guns and get those bad boys blasted.....

Excited and terrified to the point of incontinence, whilst wearing a fleece in really quite warm weather, thus illustrating my reptilian nature.

So, the background to this is I wasn't really recovering from my 'doing too much (Lyme protest), not resting, not sleeping, not eating properly, catching two colds, conjunctivitis and a stomach bug' phase. I hadn't had what I think of as the typically Lymey symptoms back of dizziness/tippy feeling, headache, nausea and night sweats, they had all mostly gone. The nausea and headaches were only there a bit when Herxing. I've still got the muscle twitching (mostly thighs) and some shooting pains through muscles and joints (which had actually increased lately). It's the Elvis legs which had really regressed in the last month or two. I'd gone from being able to walk normally for the majority of the time to only being able to walk normally for a week or so out of the 4 weeks. The rest of the time, I was weak - sometimes too weak to lift a teapot or open a pack of nappies (The nappies weren't for me BTW). I'd been quite fatigued and the legs had reached a point where I was struggling to get up the stairs or walk to the shops (normally a 10 min walk). I'd had to return to daytime naps every day (Thank GOODNESS our two year old is still daytime napping- I NEED that nap). I'd had my thryoid checked recently and that seems stable and not underactive according to NHS reference ranges, and I'd started proper iron tablets to bring my ferritin up, so that just left the Lyme to blame. So I discussed it with my PA.

Luckily she had a plan B. It was a telephone consultation, so I didn't have to travel for it. They had mentioned in my first consultation that they thought I had an issue with biofilms. Dr X thought my plexitis was caused by the Lyme bacteria living in biofilm around the nerve roots in the lumbrosacral plexus. Thus it could come out of the biofilm and start to irritate and inflame the nerves and also pop back in again - an explanation for why my leg weakness came and went so bafflingly quickly. So my legs, fatigue and stamina had got worse whilst most other things hadn't. We had aggresively treated the babesia and had been treating the Lyme at the same time. I think this is why she thought that maybe I had infection with the intriguingly named FL1953. Whilst I'm thinking "what's that? it sounds like a part number for a hoover or a flight number?" she's rabbiting on about anti-protozoal medicines. I only realise afterwards that she was talking about the newly discovered, exciting and mysterious Protomyxzoa rheumatica. 

Highly accurate scientific illustration of slime blob as rendered by our 2 yr old.

Now, I only knew about the existence of this weird and wonderful co-infection because I had a Lyme friend who had it. She was taking Ivermectin for it (amongst other things), which I knew from my dung-pat stalking days (don't ask) as an worming treatment for cows! In case you want to know, Protomyxzoa rheumatica or 'slime blob' as I shall nickname it is a Protozoan- like Babesia or malaria. It produces a very sticky, thick slime or biofilm which can harbour other nasties such as the Lyme bacteria. There is virtually nothing written on slime blob as Dr Fry  who discovered it is still in the process of writing up and publishing his discoveries.  If you want to look it up, I like this Very good talk by Dr Ann Corson on slime blob. These are some of the interesting things that she has said in this talk (the blue text is her, the black text is my comments):

 

This is a prodigious biofilm former that is

incredibly difficult to eradicate

(Wonderful)

Creates a hypercoagulable state

 

When attacked it creates massive Herxheimer

reactions with a tremendous increase in

inflammatory cytokines and a worsening of

hypercoagulability 

(sounds fun!)

 

Found in my patients from western Canada,

England, France and all over US 

(note, Including England which probably means Scotland too)

 

Signs and Symptoms

 Cold hands and feet, often clammy

(Yep, I have this)

 

Poor to “pathetic” capillary refill, skin color changes –

pale, dusky, hyperemic (red), purple, mottled

(I have pale, mottled skin and my capillary refill time is difficult to assess since my nail beds are mostly white anyway, which I guess indicates poor peripheral perfusion)

 

HA, pain behind/in eyes

(not much, only when herxing)

 

Scalp sores

(No)

 

Sinus congestion, PND, teeth pain

(I have had dental pain, still have it now and again, but I felt this was cranial nerve pain from Lyme, often have blocked nose)

 

Palpitations

(Yes, fairly frequently)

 

SOB, air hunger, dry cough, episodic and periodic

(I do get coughs for no apparent reason quite a lot, not always associated with colds)

 

Abdominal pain, nausea, IBS 

(yes, but I thought was due to gluten/gallbladder)

 

Bladder pain/dysfunction, interstitial cystitis

(no)

 

Joint and muscle pain, weakness, twitches

(yes, again I had thought this was Lyme)

 

Profound fatigue, complete loss of aerobic exercise

tolerance

(yes, especially lately, out of breath walking through house, formerly a fit hillwaker)

 

Sweats (night/day), chills, flushes, dizziness

(these have now gone- Babesia related I think for me)

 

Insomnia, profound brain fog, poor balance

(Yes, still struggle to sleep, bit of brain fog recently, still have poor balance, currently failing Rhombergs test)

 

Anxiety, panic, OCD, irritability, agitation, impulsivity,

ADD, emotionality

(no, not really though my other half might say otherwise, I do get bad PMT recently)

 

Hypercoagulability

(hard to say, they always seem to manage to get blood from me, I don't seem to have noticed any blood clots but I am cold all the time)

 

So, I guess I could have the lovely slime blob after all, it's a tricky one since lots of these symptoms overlap with Lyme/Babesia. It's worth a shot though I reckon. They have drawn up a new treatment plan for me which is so incredibly complicated, my brain will implode if I attempt to fully describe it. Basically, it consists of a four week cycle.

 

Week 1 I take antibiotics, anti protozoals and Diflucan. The antibiotics include Ceftin, Septra, Rifabutin and Tinidazole. I am going to give liposomal artemisinin a whirl as well. This is a more potent form of artemisinin which is apparently good at getting through biofilms and is readily absorbed by the gut. According to people who have tried it, it might result in my legs actually falling off, my head disintegrating and an alien erupting forth from my intestines. Something like that anyway.

 

The anti protozoal they have me on is Daraprim (sounds like an X-factor contestant to me). Also 'neutraceuticals' (which include the biofilm busting nattokinase and the blood thinning resveratrol). I don't take all of these things all week, different things on different days. I've not been prescribed Diflucan (fluconazole) routinely before, I'm not that bad with Candida usually. Clearly this new protocol is likely to turn me into 'Mrs Yeasty'. Niiiicee....

Week 2 is Ceftin, Ciprofloxacin and Folinic acid (to stop me getting anaemia from one of the drugs in week 1). Also my jazzy supplements.

 

Week 3 is Coartem and supplements

 

Week 4 is schluplements only (phew!).

 

So yeah, I am expecting to feel like total crap, perhaps be unable to walk at all and have to spend a lot of time in bed. I'm going to look into mobility scooter hire so that I can at least rampage through the shopping centre, scattering terrified grannies and traumatised small children in my wake.....

 

I have no idea how they have decided on this particular combination and sequence of drugs, it's not the stuff I see Dr Fry recommending and I've not been told to go on a no-fat diet (though I am fairly low fat anyway). Perhaps they know things I don't - quite probably since they are actually the highly experienced specialist Lyme doctors and I, erm.. am not.

 

I've finally managed to finish ordering all of these drugs from the various Canadian and US pharmacies, what a Kerfuffle that was - I'm glad I've got my spreadsheet-tastic John who's brain is actually working at the mo (unlike my turgid spongiform grey matter). The good news is that this new schedule is much cheaper than the old one (no more Mepron- wheyyyy!), the drug bill is about £900 for the next four months supply, maybe I'll need a few supplements as well.

I've got to go back in person in September to see Dr X this time (The PA likes to have all her patients periodically reviewed by Dr X). That's extra expense, but this time hopefully I'll be well enough to go on my own (one less flight to pay for) and I can thank them in person for their expertise with a big hug :-).

 

Protest success!

What a fantabulous few weeks it's been! We had the  Worldwide Lyme Protests on the 10th and 11th May - 30 countries, all saying the same thing- Lyme disease is not being recognised, diagnosed or treated properly, and we need change to happen NOW! This was a grass-roots effort, entirely led by patients themselves, not organisations, just facebook, a few websites (UK, USA and Australia) and word of mouth. It was hard work, but boy was it worth it.

The main UK protest, photo courtesy of Ruth Black.

The protest itself was very well attended - massive respect to all those who battled illness and public transport to get there and my thoughts are with those who were too ill to attend, I hope we represented you well. I should also thank my family who really helped out - dad, my sister and brother in law who gave up their day to be there and set up/pack up, my partner for driving me up and down the country at a moments notice and putting up with the months of preparation, my other sister and mum for looking after our daughter. You are all ace. Also thanks to David of viz biz design who did us some fab banners, stickers and printing for free. Our website person also did a fine job, thanks.

Not sure of numbers, maybe around 70 at any one time, people came and went, so it may have been more like 100 overall attendees. The atmosphere was upbeat and convivial, Lyme is such an isolating illness, it's nice to just talk to people in the same position - and actually meet folk I'd only ever had digital contact with. I heard some absolutely appalling stories, another whole family with Lyme, a lovely young woman in a wheelchair who is incredibly sick and having seizures, another wheelchair bound woman who has been massively impacted and ignored by the NHS, some people who came along because they has seen the Breakfast show slot and realised there were people in the same position as them. These were people who weren't being reached by social media and forums, so it was great for them to connect with us. Leaflets were handed out to the public and staff coming and going from the Dept of Health and one plucky lady even went to the nearest hospital to hand out leaflets to staff there. There was even a mini protest held in Beccles, Suffolk where the protesters met three random members of the public who had Lyme -ooh such a rare, rare disease, eh? ;-) Here's a link to some more photos of the UK protest.


In the UK we got an absolutely unprecedented amount of media coverage for Lyme. The media coverage in the UK before has been fairly low level - local radio, local papers featuring local sufferers and the odd national magazine or newspaper article, but all quite infrequent. The protest saw a huge rash of articles (see list below), interviews and even me on BBC Breakfast telly , which was brilliant- it had a big reach and I think has meant that the protest has had a real lasting effect - big awareness raising and people have been coming forward saying they saw the TV or heard the radio programmes and are now re-examining their (non-lyme but lyme-like) diagnoses in a new light. A HUGE thanks has to go out to the super helpful journalist and Lyme sufferer Angela Howard who used all her contacts and worked very hard to get the BBC and others on board. You are a star. It also really helped that the BBC reporter/researcher who spoke to me had had Lyme and also that the 'expert' who sat next to me on the sofa on the Breakfast show has a brother with Lyme, so was sympathetic - what a co-incidence eh, incredibly rare disease isn't it? ;-).

Me absolutely cacking my pants after no sleep all night, outside the BBC studios in Salford.

Journalist Sonia Poulton came along and gave us her support, she chatted to lots of us so I hope she got a better idea of the issues involved. We submitted our Petition  (thanks to Denise Longman for co-ordinating this) how has over 10,000 signatures thanks to the publicity and the help of a very popular young lady on you tube . I hope the 30 odd patient stories and all our 40 or so photo messages will add impact. Whatever the authorities say, it is clear from those messages that something is seriously wrong with the way tick-borne disease is dealt with.

Whether it actually achieves anything in terms of changing attitudes in the Dept of Health or Public Health England remains to be seen. I have hope that with continued work, it might, and I certainly think some open minded doctors may have had their interest piqued. We will be asking for a response to our petition from the Dept of Health, but I haven't done this yet since it requires brain power and other peoples suggestions as to what to say. I got a reply from my letter to the Health Secretary, but since the reply to this also requires brain power and my grey matter appears to be comprised of pureed cabbage at the present time, I will post it in a later blog entry.

As a follow-up to the protest, UK Lyme sufferers have asked 38 degrees to run a campaign on our behalf. 38 Degrees is a British not-for-profit political-activism organisation that campaigns on a diverse range of issues, it has a good record for effecting change and putting pressure on the politicians. Please vote for this campaign, it's easy to sign in and vote. You get given three votes, it would help us if you used all three to vote for this campaign. Thanks so much! 38 degrees campaign suggestion

So what's been happening with me and my Lyme? The protest work has taken it's toll. It was months of preparation then insane last minute dashes to the TV studios. I couldn't sleep a wink for fear that I'd say something stupid on national telly. I've had two colds in as many weeks and then our house was turned into a hermetically sealed vomitarium (stomach bug for all of us). I've had a return of the Elvis legs, had to use a wheelchair (but not much), been weak (at times too feeble to pick up toddler or lift a teapot), sleepy, a bit brain fogged and massively fatigued. I think this has happened to loads of us since the protest- just the effort of doing it has made us sick. 

Had a surprise gallbladder attack on the way home from the protest - there we were driving up the M1 when Bam! a masked gallbladder starts banging on the window in a threatening manner.. eh, no actually I can't blame it on a phantom intruder, but on Burger King. BURGER KING!! (I hear a collective sharp intake of breath and some shaking of heads). Yes, I ate a Burger King. yes, it was disgusting, yes it made me really quite ill for about 5 hrs. Writhing around in the car and at my folks with gallbladder pain, referred shoulder blade pain and intense nausea. Ever since then then my pesky little bile storage unit has been twitching after every meal. In my defense, it was the only place open at the motorway services and I don't normally eat that kind of thing. I've been strictly low-fat and gluten free since. The bonus of being so utterly saintly (ahem) in my eating habits is I am now 59 kilos (just over 9st, or  130lbs), so I've lost 4.5 kgs in the last 5 months- Yey! I can fit into that gorgeous black dress again... boo that I'll never have the occasion to wear it...

I also got my cardiac holter monitor fitted two days before the protest- cue robomum for two days, toddler was most amused at all the wires. I don't think it recorded anything exciting though, annoyingly. I have started having palpitations when I lie on my right side in bed though, which is annoying and makes me breathless. I had my routine bloods done (thank you nice GP for arranging this) and all is fine apart from low ferretin (iron stores) and low eosinophils (which are often low for me - immunosuppression?). Obviously the over the counter iron tablets I've been on are too weedy so my GP kindly prescribed me some proper ones. Hopefully in a few weeks I won't be feeling like such a malnourished kitten all the time and will be able to get up the stairs without my legs buckling.

So, thanks again to everyone who made the Worldwide Lyme protests such a success, it truly was a worldwide effort for a worldwide problem. It's not going to change things overnight, but baby steps, baby steps...

Links to the UK media coverage:

BBC website article (was top story): http://www.bbc.co.uk/news/health-22468181

BBC breakfast TV: http://www.youtube.com/watch?v=8YIj4CpBTVI

Web MD: http://www.webmd.boots.com/travel/news/20130510/lyme-disease-treatment-protest

BBC radio Scotland (Nicola Seal), start listening at 1hr 46 mins: http://www.bbc.co.uk/programmes/b01s4q32

Elliot on Radio Solent, start listening at 1hr 42: http://www.bbc.co.uk/programmes/p017rv0n

Tony Bent on five live Breakfast http://www.youtube.com/watch?v=F3XlxWv6ZcY&feature=youtu.be

Denise Longman on Radio Suffolk, start listening at 1 min 53: http://www.bbc.co.uk/programmes/p017tkm2#programme-broadcasts

Adelle Huckins on the radio, BBC Newcastle: http://www.youtube.com/watch?v=PKgGk-bd4OU&feature=youtu.be and on Tyne tees radio with Stella Huyshe-Shires, 2hrs 6 mins into the prog: http://www.bbc.co.uk/programmes/p01862yf

The Herald, Nicola Seal: http://www.heraldscotland.com/news/home-news/scottish-sufferer-in-lyme-disease-whitehall-protest.21037966

Caroline Lucas, MP for Brighton Pavillion http://www.carolinelucas.com/blog/tackling-lyme-disease-and-tick-borne-diseases-in-sussex.html

Natasha Metcalf in This is Dorset: http://www.thisisdorset.co.uk/Gillingham-woman-Natasha-Metcalf-joins-London/story-18881185-detail/story.html#axzz2SDqmsTr6

Louise Dean in the local paper (she isn’t actually from Orpington): http://www.bromleytimes.co.uk//news/orpington_woman_fundraising_for_specialist_treatment_after_catching_lyme_disease_1_2175690

Appeal for petition signatures on you tube: http://www.youtube.com/watch?v=_1roQwZXI-s&list=PLGk8maTXO6B3BloqomNCqwEKN9QEAfxw9

Photographs from a journalist/ photographer at the protest: http://www.demotix.com/news/2039853/worldwide-lyme-disease-protests-takes-place-30-different-countries/all-media

Angela Howard on radio Wiltshire Fri 10^th May

http://www.youtube.com/watch?v=62pOV9pBg1U

Joanne Drayson’s you tube videos of the protest (the first three, there are more): http://www.youtube.com/watch?v=QdpXsM74hMU&list=FLCSU_aV6wfTxEfVj7WztkQQ

http://www.youtube.com/watch?v=swlJevM2uKw&list=FLCSU_aV6wfTxEfVj7WztkQQ

http://www.youtube.com/watch?v=IjlGVpFmHWU&list=FLCSU_aV6wfTxEfVj7WztkQQ

Worldwide and weary

It's been a while since I blogged, I've been super busy with the worldwide Lyme protest, which has snowballed into something far better but also far more work than I anticipated. I see it as a job now, unpaid, but very rewarding. More on that later.

After Spain I had a completely rubbish three weeks, I really struggled to recover from the trip. I even had to use crutches a bit, which I haven't done since oct last year. The random pains came back - sudden brief intense toothache, head being 'stabbed', shooting pains in muscles and twitching returned. I had no energy and the house was a complete mess. So I was a bit worried. Emailed my LLMD and she said detox, take the neurontin for sleep, and keep going. Discovered hot lemon water is lovely and makes me feel good, epsom salts baths are a great excuse to watch an hour of telly on Iplayer and I caved in and took the neurontin at the lowest dose. Bounced back, had brilliant flare up last cycle (as much as not being able to walk properly and being knackered and headachey and twitchy can be brilliant, you know what I mean!). I was gardening two days after it started, pretty amazing.

Had a good encounter with a cardiologist. He was actually human, not some twattish droid. He didn't dismiss the possibility of chronic Lyme. He said the ECHO showed the front wall of my heart wasn't quite working as it should, which could be due to atherosclerosis, or it might not be. I still had bundle block on their ECG so I'm guessing that might be permanent. He's put me on the list for a holter monitor and cardiac MRI which is good. The cardiac symptoms haven't totally gone I still have some palpitations, feeling faint when I get up and falling to the floor, BP falling on standing, weird breathlessness when lying down at night and now some mild chest pains. So I'm still thinking the Lyme has caused heart damage.

I made a formal complaint about the lying neurologist, her reply was suitably evasive and fob-ofish. It really read as if she had already made her mind up about me being a psychiatric case, and therefore didn't want to believe nerve conduction test results and her own neurological exam. That's  what I was complaining about! I can't be arsed taking it further, at least she had to explain herself to the chief executive so she didn't get off completely scott free.

I'm writing this after a busy day doing worldwide protest work, looking after a manic 2 yr old and I'm pretty pooped and deflated. Slightly worrying chest pains, dizziness and light headedness today. This will be the 11th day off the antibiotics. I'm on a new schedule now, which is two weeks on the pulsed antibiotics, then a week where I just take supplements and Coartem (for Babesia) for three days, then a week with just supplements. I can feel the absence of the antibiotics. I just spent 10 minutes lying on the kitchen floor, feeling too faint and weak to get up. Eventually, my daughter came and lay next to me and pretended to be a dog, bless her :-)

As tired as I feel, I keep being reminded how well off I am compared to lots of other Lymies. A side effect of doing the Lyme protest is that I've been in touch with absolutely tons more Lyme sufferers. Bloody hell, I'm so lucky. Some of these people are so sick, some seem to be dying, some have actually died. My thoughts are with the family of this man, Scott Beattie who recently died, apparently of Lyme in hospital in  Inverness. Sounded to me like he had a fatal herxheimer reaction to the second lot of antibiotics they gave him. I doubt they will put Lyme on the death certificate though, it'll be organ failure or something similar I bet. Hugh Pennington in one report says "he would be "very surprised" if the disease itself had caused Mr Beattie's death"  Prof. Hugh Pennington is not a practising clinician with expertise in chronic Lyme - he is a retired microbiology professor- so shut the hell up with your uninformed opinions, grrrr...

I've heard so many terrible stories. Children losing their parents to sickness, other kids losing their childhoods. Mothers losing their babies, other mothers fighting through barrier after barrier for their kids. Young people, in the prime of their lives, fit, enthusiastic outdoor people- reduced to shadows of their former selves.  I'm incredibly saddened at the waste of lives and immense suffering. Needless suffering. The injustice is appalling, how can the doctors who turn these people away, denying them treatment, sleep at night? I'm intensely fucking angry, but in order to effect change, to even function and heal, I need to temper that anger with a layer of positivity.

I can do my little bit to help attempt to try to get justice for the ignored. I really hope this protest helps. It's already brought people together and invigorated people's efforts to write letters to MP's (see mine, below). we've had new people sign the petition. Lots of people have sent in messages for the Dept of Health to our protest facebook page, and UK protest website. Someone has  Set up a Lyme register for UK Lyme sufferers and two other folk have started up a UK support group.

We must have already done a fair bit of awareness raising- our weekly reach on the Facebook page is around 4,500 people - that's a lot of folk! Thanks to everyone who is helping with this work, I won't name you, you know who you are, you know you're all stars :-)

So keep up the good work everyone. If more of us could write to the Health Secretary, that would be good, below is the letter I sent him:

16^th April 2013

Rt .Hon. Jeremy Hunt, M.P.

Dept of Health

Richmond House,

79 Whitehall

London

SW1A 2NS

Dear Mr Hunt,

I am writing to you to make you aware of why Lyme disease patients will be protesting outside the Department of Health on May 10^th. I am organising the protest because I have Lyme disease and like many thousands of others in the UK and worldwide, I am being ignored by my government, the National Health Service and the Health Protection Agency (Public Health England). Chronic Lyme disease is a treatable infection, yet we are being denied treatment and we are abandoned by the NHS. We suffer crippling illness, often unable to work, thousands are losing their livelihoods, health and happiness.  There are no NHS doctors who really understand this complex disease, most have no training in it and the Health Protection Agency has done little to educate them.  There is wealth of scientific evidence showing that the guidelines on which the NHS and HPA base their diagnosis and treatment are fundamentally flawed. These (IDSA) guidelines were written by a small group of self-selected doctors in the USA who have multiple conflicts of interest and who stood to benefit financially from portraying Lyme disease as rare and easily treatable. They deny that chronic Lyme is due to ongoing persistent infection. This is a gross misrepresentation of the literature.  In fact, Lyme disease is much more common than official statistics suggest (misdiagnosis is rife and testing is very insensitive). Lyme Disease Action estimate around 15,000 cases each year in the UK.  The Lyme bacteria is sometimes very difficult to eradicate, short courses of antibiotics such as those recommended by the IDSA and HPA have high failure rates.  There are several papers which show much longer courses may be beneficial. There is overwhelming evidence (more than 100 research papers) showing that the Lyme bacteria can persist and remain viable in the body, despite short antibiotic therapy.  Patients (including myself)) are often infected with more than one bug, which makes treatment and diagnosis more difficult. However when patients do manage to get long-term treatment (by paying for it themselves, privately), they usually report great improvement and sometimes a full return to health.

I was infected in 2008 on the west coast of Scotland. With a single tick bite, my life changed forever.  I was an Ecologist and was aware of Lyme disease. So when I got the first symptoms 11 days later, I mentioned the tick bite and possibility of Lyme to the GP. By the time I got to hospital 2 days later, I had meningitis symptoms and had lost the ability to walk. I was feverish, drenched in sweat, had palpitations,  twitching, muscle pain, joint pain, stomach pain and swollen glands. They discharged me a few days later with a short course of low dose oral antibiotic. I should have been given intensive intravenous antibiotics as it was likely that the bacteria was in my brain and nervous system.  It was too early to test accurately for an antibody response, but they tested anyway, and the results were negative for Lyme.  Despite continued symptoms, I was initially undertreated and as a consequence, I am still infected and suffering 5 years later.

Despite a tick bite in a known area of high incidence, symptoms consistent with Lyme, two positive private blood tests,  5 private Lyme specialist doctors diagnosing me with Lyme disease and a good response to (private) long-term antibiotics, the NHS to refuses to acknowledge my diagnosis and  I get no NHS treatment. I have measurable heart problems and nerve damage as a result of my Lyme. There are days when I can hardly walk.  I often struggle to look after my 2 year old daughter.  I worry I may have passed the disease onto her and/or my partner (there is evidence for in-utero transmission and my Lyme doctor thinks it is sexually transmitted). The infectious diseases doctors that I have spoken to are completely unaware of these routes of transmission. We have used all our savings, my parents money and have spent many thousands of pounds  by being forced to pay for private treatment.  I am now being treated by an American Lyme specialist doctor. The treatment is working but it may take a number of years.  Lyme may have cost me the ability to complete our family and have another child - the risks of miscarriage are increased, and I could not inflict this disease on an unborn child. I am 39, so time is running out.

My story is not unique, in fact it is typical in the UK. What is not typical, is that I was diagnosed quite soon after infection (it was clear to me it could have been Lyme so I sought out a private specialist promptly). Lyme is difficult to diagnose and the HPA has given doctors a falsely reassuring impression of the reliability of its tests for Lyme. An independent study which examined the same types of screening tests as those used by the NHS found that they missed between 66 and 41% of Lyme cases- an incredibly poor test! In addition, the HPA give doctors misleading information on the symptoms of Lyme, so complicating what is an already difficult diagnosis.  Lyme is misdiagnosed as Chronic Fatigue Syndrome,/M.E., psychological illness, Multiple Sclerosis, Alzheimer’s, Polymyalgia rheumatica, Arthritis, thyroid disorder, menopause, stress, Motor Neurone Disease and much more. 

The UK desperately needs a new approach. These are the demands of our petition that has around 3000 signatures. I hope to hand this petition into a Department of Health representative on the day of the protest.

The demands of our petition:

1: That Lyme borreliosis be made a notifiable disease, so that the true incidence becomes apparent.                                                                                                               
2: That better methods are actively explored, to test for and diagnose both acute and chronic infections.                                                                                                                              
3: That doctors are trained in the treatment of borreliosis and other tick-borne diseases. Given the number of patients who may now be infected, we ask that special clinics are established where the diverse range of the effects of the disease can be acknowledged and treated.
 4: That treatment is extended for as long as necessary, and to include the use of high dose, combination or long-term antibiotics, especially in those patients who have been ill for a long time. Even in those patients who appear to have recovered, a 5-year follow-up would be advisable to monitor the condition.

5: That medical schools and practising physicians are made aware of the research and latest knowledge in diagnosis and treatment of Lyme disease, as well as the other emerging infectious diseases carried by arthropods which may cause co-infections in patients with borreliosis.                                                                                                               
6. That all government agencies for the Environment, Health, Sport and Tourism use their resources to make the general public in the UK aware of the potential risks from tick bites.

Thousands of people are suffering miserable existences; people are dying of this disease. The science is there to support our case – we don’t yet know the optimal treatments, but we do know it can be successfully treated.  Please listen to us, listen to Lyme Disease Action, listen to the science, stop the wasted lives.

Yours sincerely,

Dr Nicola Seal

Co-ordinator of the Worldwide Lyme Protest - UK