Tuesday, 30 October 2012

Lidl legs and Lymey Links

Roll up, roll up ladies and Gentlemen! Come and ride the rollercoaster of Lyme. Shoot along a spirochete, blast through a neuron (but watch out for falling debris, it's Myelin sheath is falling apart), whizz round an arthritic knee and end up in a brain punctuated by mysterious lesions. Maximum ride duration is 30 days, after which you don't officially exist, so you will be jettisoned into a giant skip.

I can see it in Blackpool now.. except no-one would go because they'd all be to tired to get out of bed.

So yeah, I was on the slowly ratcheting up-slope and have been on more downward trajectory just recently.

Had a bit of a funny turn in Lidl. I'd been feeling a bit wobbly and rough anyway, but especially nauseous that morning. I perhaps had low blood sugar. I'd had had my fruit, yogurt and oats for brekkie, but the porridge that I'd made to eat before we went was as appetising as a bowl of warm pedigree chum sprinkled with cat sick- so it went uneaten. I'm trundling along trying to ignore the aisle of forbidden pleasures (Christmas sweet treats in already and it's still October). The mannie is testing the new bread ovens and they are sending out stinky fumes all over the shop. The trolley was being particularly un-cooperative and trying to mow down dawdling grannies. I start to get nasty stomach pains, then get really hot and have to strip off to my unflattering base layer. I feel a bit woozy and then feel the legs going. Grabbing onto the trolley for support, I make it to the checkout. The checkout guy is looking at me as if to say "tut, another middle-aged harassed mother on the gin". I'm lobbing the groceries into the trolley with one hand, holding onto the checkout with the other, trying not to keel over. I sit on the packing shelf wondering what am I to do? I can't walk unaided, let alone lift the shopping and my (now whining) toddler out of the trolley and into the car. Driving home would be a touch dangerous methinks. We both eat a cookie and have some juice to see if that helps. It doesn't, but it pacifies my daughter somewhat. In tears, I ring my wonderful partner, John, who arrives on his bike 20 mins later to rescue us. My knight in shining Lycra. I felt really rubbish having to pull him out of work. He looks after us for the rest of the day as I am just a torso attached to a useless pair of legs.

I am a bit wobbly and feel crappy for a week or so after that. Don't really know what that was about. Looking at my diary, it could have been my monthly flare up a few days later than expected. It's not normally that sudden and dramatic though. I guess I should just force myself to eat before attempting the weekly shop. It wasn't like I was particularly stressed, it's very physically demanding at times, but I like food shopping- all that yummy food!!! Ach well, at least I got my bargain pomegranates and avocados...

Lidl legs

So, I thought I'd put up some links to sites I've found particularly informative and helpful. (I would like to do this in a side bar so they are always visible on the blog, but can't figure out how- if you are less of a numpty than me, can you let me know how to do this). Anyway...

Very recently, a Really good, short, intro article was written on Lyme - by a safety union! Really, officials should take note of this writer, its very well researched (I might be a bit biased as it does mention this blog;-)).

For all aspects of Lyme in the UK, the most authoritative place to go is the Lyme Disease Action website. They are a reliable source of information- they have certification from the Information Standard, which is an independant certification scheme for health and social care information which was developed and supported by the Department of Health. They have an excellent range of leaflets, you can print these off and give to GP's or whoever. You can also contact them to request leaflets which you can distribute to doctors surgeries, vets, wildlife visitor centres etc. If I want to fact-check something to do with Lyme, I often use the LDA website. They are also incredibly helpful if you need help with a specific query.

Another good UK website is BADA-UK. They cover more of the preventative side than LDA and have particularly good sections on co-infections and tick removal. Tick removal tools can be bought from BADA and LDA. BADA also sell a DVD called One Tick Away that is worth watching, and they have a children's book- good for schools/youth groups perhaps?

A hidden gem of a website is Brighton Lyme disease support group. The diagnosis and treatment section is particularly good and gives a really good, balanced picture of the situation with Lyme in the UK.

Another site is Tick Talk Ireland. They - rather brilliantly, organised a conference on Lyme in Ireland recently, and they have a particularly good section on testing.

Talking of testing,  these guys at Lyme Research UK are doing a lot of good work on public health policy and Lyme, investigating the failures of testing, and have done a survey on Lyme in the UK and Ireland.

If forums are your thing, I recommend Eurolyme. Like all forums, there is a diverse range of opinion on there, but I find most people to be helpful and reasonably sane and knowledgeable. Unlike some forums, there is no flaming. It is moderated and you should check out the rules before posting. I have found it invaluable over the years, but you sometimes need to ration your time on it as it can be a bit depressing- you should remember it's mostly the sicker individuals who are on Lyme forums, those who have recovered are usually busy living life again.

Blogs can be a bit hit and miss, but there are some I've found to be really informative and helpful and they are all intelligently written- we are not all hypochondriac nutters!

An encyclopedic site is that of  Joanne Drayson. She is a chronic Lyme sufferer  and is always putting up links to lots of Lyme articles. She's amassed a lot of knowledge over the years and is very helpful to newbies on Eurolyme. There might be the occasional thing I think 'whoah, that's a bit far out' but mostly, she talks a lot of sense.

A new blog that I have found hilarious is http://decimawho.wordpress.com/This very funny lady is being treated for chronic Lyme in the UK. A very honest account.

I also like this from another Scottish Lymey Near Horizon. Well written, useful.

Further afield, this blog from a US Lyme doctor. is super-informative and gives a real insight into how a good Lyme doc in the US diagnoses and treats patients.

For a distillation of technical Lyme info into easily readable layman's terms 'Lyme guides', see these articles by sufferer-scientist  Tom Grier. They are really useful.

You will find links to various guidelines within all of those links, but I will be talking about guidelines and what I think of them in a later post.

That's all for now folks, hope you are all ratcheting up that rollercoaster.



  1. Thanks for linking to my blog!

    I think I'm on the carriage behind you on the same rollercoaster, never boring eh?

    I've bookmarked some of the links you gave for future reference... I didn't know you could get leaflets from LDA so I might get some and see if I can start handing them out. One of the articles you linked to (that mentioned your blog as well) also stated the myth that 90% of patients get the EM rash. I think this is singularly the worst mis-information out there. It's what made everyone around me, including the various GPs I saw, say I didn't have lyme - as I didn't have the rash or even remember a bite.

    I've been pleased to see the LDA are doing fantastic work with raising awareness amongst GPs. If more people can be diagnosed, there'll be far more pressure on the NHS to provide adequate treatment, at the moment so few people get a diagnosis there isn't the volume of people putting pressure on the NHS and their MPs to instigate change.

    Moving on slightly, did you see the programme the other day on Channel 4 'the town that caught tourettes'? I was *screaming* at the TV. They may not have all had lyme but I think most of them had some kind of tick borne infection. They all lived in upstate New York as well which just rings massive alarm bells in my head for lyme! I ranted about it on the Channel 4 website, hopefully someone somewhere would've read it and thought, hey that's a lot like my symptoms, I'll research this 'lyme disease'.


  2. HI Decima,

    oooh, which article was it that said 90% patients get EM rash? Obviously I didn't notice that... bad bad.
    Yeah, the LDA are doing great work, GP's are the way forward at the mo, they tend to be more open minded than ID consultants and they are the ones to see patients time and time again and put the pieces of the jigsaw together. Difficult for them mind you, with unreliable testing that they think is good, and misinformation from the HPA.
    Yes, saw that prog, interesting. It does seem that at least some of them had Lyme or similar, and maybe some were conversion disorder, we weren't really given enough info in the programme I think. The adult who had had a traumatic life seemed to think hers was conversion disorder. Wierd that their primary symptom was ticks- that is seen in Lyme, but not so uniformly in a population like that I think. I wanted to know how many of them had other symptoms that weren't metioned- like that girl from the other town who got IV treatment in the end. As you say, hopefully it will raise awareness somewhat, but ticks are a fairly rare Lyme symptom, so not sure how useful it will be.
    Anyway, glad you like my blog- I've been enjoying yours- keep at it and glad you are slowly getting better.