….we’ve all had it!
Regular followers of my blog may recall I made a brief post concerning Lyme disease several weeks ago but I have decided to put together something a bit more substantial and push it out to a wider audience. Let’s be clear, there’s a lot of information already out there by people with proper stethoscopes and letters after their names so I’m not trying to create another source of reference. What I am trying to do is raise awareness, like many have before me, and maybe save some people a whole host of nasty business in later years – people who wouldn’t normally chance upon info about Lyme. Plus, I am starting to feel like I’m obsessed with Lyme and may one day end up sat at the kitchen table crafting a giant tick out of mashed potato unless I get this out of my system…so to speak
Tits
Prior to 2007 I’d never even heard of it. We were on our annual flyfishing holiday and had ventured further north than ever before to spend a week in Sutherland during an unexpected Caledonian heatwave. Consequently the 3 of us pranced around like tits in the Scottish Highlands wearing shorts and t-shirts pursuing wild brown trout in remote hill lochs and jolly good fun it was too. It was only upon chatting to a local that we discovered our attire was wholly unsuitable as it left us wide open to deer ticks which carried something called Lyme disease, and that we should also carry out in-depth self checking tout bloody suite. Back at our cottage, Phil was the first to disappear into the bathroom with a mirror, a tick removal tool and a grimace. We wished him luck but on his re-appearance he confirmed that he’d had several ticks embedded in a very special place discovered using a delightful squatting technique. The tool was passed along and myself and Stu took turns to slink off into the bathroom where we too discovered ticks in allsorts of nooks and crannies.
Bastards
Since then we’ve considered ourselves ‘tick-savvy’ and our missions to Scotland are always punctuated with daily self-examination and prompt removal of the horrible little bastards. We also knew that if we got what was called a bullseye rash after a tick bite then a visit to the GP was required. I believe that few people are aware of even this information, so in that respect I was lucky. You can see where this is going.
Cow muck
Summer 2012. After a spot of mountain biking around North Leeds I discovered blood trickling off the back of my ankle and the wound turned into a dirty great big lump. I assumed I’d got a cut then got cow muck in it or something but was puzzled as to why I hadn’t felt anything. As the days went on a red rash spread out from the lump and progressed along my foot and up my leg. To make matters worse I also came down with a real nasty summer cold and my glands were up. The little white ball was spinning round the roulette wheel! It was only when I saw that the red rash was beginning to clear around the central ‘eye’ that it finally stopped spinning and dropped into place. Shit! Lyme disease! In Leeds!!!
The rash
Pills
I could only get an appointment to see the practice nurse but they quickly dragged the GP in to have a look. We all looked at the reference pictures, at my leg, then back at the pictures. A few minutes later I was armed with a prescription for Doxycyclin and my bloods were on their way to a lab. I felt pretty down if I’m honest…why me? I began to develop an obsession with Lyme disease and read everything I could find on the web and in a way this helped. Well, that and the fact that the antibiotics kicked in after a couple of days and I started feeling loads better. After 2 weeks the pills were gone and so was the rash – time to move on. Not quite. Over the next couple of months 2 people I knew came down with Lyme disease and another couple got tick bites – all in Leeds – and in a way it was fortuitous that I’d had my brush with Borrelosis because I was able to point them in the right direction pronto! Lyme disease is clearly a much bigger problem than most people realise and even the NHS seems to be very inconsistent in its attitude towards it. Turn up at a GP in North West Scotland with a circular rash and flu-like symptoms and Lyme disease will be at the top of his/her list of suspects but in England you could be told Lyme disease can only be caught in Eastern Europe! This worries me greatly, enough to write this ‘article’ and push it out for wider consumption, because if left untreated Lyme disease can really ruin your quality of life.
What do ticks look like
When they’ve just jumped onto you and haven’t got much blood they are small, real small. They have 8 legs and look like tiny little crabs. If they’re starting to feed they’ll have their head buried in your skin and won’t brush off.
If left to merrily chug away on your blood they’ll get as big as a baked bean, sometimes larger!
How do I know I’ve got it?
Tricky one. From what I can ascertain, pretty much all obvious bullseye rashes are Lyme disease but not everyone with Lyme disease gets a bullseye rash! My symptoms were a nasty, angry bullseye rash, feeling ‘rough’, achey, with lurid phlegm! But wait, it gets worse! It seems that the standard blood test for Lyme is notoriously unreliable throwing out false positives/false negatives, especially if taken less than 6 weeks after the bite ( although a spinal fluid test sounds more accurate. That sounds nice).
What can it do to you?
If untreated you could get hit by anything from mild flu like symptoms all the way through to facial paralysis, chronic fatigue, crippling joint pain, altered moods and meningitis.
Can it be cured?
Errr…sort of. All the stuff I’ve read seems to suggest most people catch it in time, take the antibiotics and get better. Others (especially those whose initial symptoms are severe) seem to have a rough time getting rid of it and require prolonged treatment. The worst cases seem to be those who go years without knowing they have it and are riddled with the Borrelosis by the time it’s diagnosed but even then aggressive and extensive antibiotics courses seem to undo most of the bad stuff. Also, there are increasing numbers of people suggesting a link between Lyme and M.E (Myalgic Encephalopathy or Chronic Fatigue Syndrome).
How can I prevent getting tick bites?
Not as easy as you think. If you venture outside you’re at risk! Okay, that’s a little alarmist, but the ticks that carry it can be found on foxes, deer, sheep and Lord knows what else. Keep away from long grass, tuck your trousers into your socks and wear gaiters (let’s face it, if you’ve got your trousers tucked in your socks you’ll want to hide that fashion faux pas anyway). If you’re entering a high risk area go the extra mile and in addition to the above get some Lifesystems EX4
Lifesystems Ex4 Permethrin Treatment – Size 350Ml
and spray the bottom of your trousers, socks and gaiters. This stuff kills the little bastards when they crawl onto the fabric whereas normal DEET based stuff merely repels them but make sure you read the label carefully. Wear a light coloured long sleeved top and tuck it in (the light colour helps you spot them). I’ve found ticks on my ‘love handles’ on several occasions! At the end of any day out in possible tick infested land do a full and vigorous body inspection…don’t forget behind the knees, behind your ears, perineum, backs of legs etc.
What if I do get bitten?
Don’t panic! Don’t rip the thing off, don’t smear it in vaseline, don’t burn it, don’t even use harsh language or long hard Paddington stares. Use a dedicated removal tool like this
O’Tom Tick Twister For People or Animal (2 Pack in Resealable bag)
otherwise you’ll distress the tick and force it to spew up its stomach contents into you thereby accelerating the process of passing the nasty bacteria into you. Buy a couple of packs now and have one at home and one out and about with you on your travels. Follow the instructions. If you do get a tick bit and develop any of the symptoms mentioned earlier get straight to the GP and discuss your concerns. If your GP gets all uppity and says you can’t get Lyme disease get a second opinion, this is not a disease to be taken lightly. Perhaps more importantly, don’t just rely on a half-assed article from a whisky soaked Internet blogger. If you’ve read this far I’ve managed to pique your interest …which was my intention…so now you should visit websites put together by those who really do know their stuff about Lyme
http://www.nhs.uk/conditions/Lyme-disease/Pages/Introduction.aspx
http://www.lymediseaseaction.org.uk/
http://www.bada-uk.org/wordpress/?p=284
Very informative article there. Best advice to anyone who is fishing is to cover up. Make sure you wear thick clothing at all times when fishing.
Could you send me a private message giving the name of the GP who treated you? My daughter was bitten by a tick whilst living in Bavaria. She wasn’t aware of the danger of leaving this untreated but after experiencing the classic bull’s eye reaction and then prolonged flu like symptoms and extreme fatigue, visited her GP there. She was diagnosed with Lyme Disease and given 9 weeks antibiotic treatment. The initial symptoms subsided although she was told that it was difficult to test whether the bacteria was still in her system. After returning to Leeds she visited her GP here and notified him of her diagnosis and treatment. He dismissed her, not really taking her seriously. A year on and she is now experiencing serious neurological symptoms. Her GP has referred her on to see a Neurological Specialist convinced that she has MS. We need a GP who will give her more antibiotics to treat the Lyme Disease but don’t know how to find a GP who knows anything about it. We have a written diagnosis from her German doctor but no-one seems to care about this. Please help if you can,
Hi
This is a great article as it is so difficult to get Lyme taken seriously in the UK! Could you send me details of who you saw please? I am also from Leeds
Hope you have recovered!
Hi Bob,
I’d love to get in touch with you about your experience with Lyme Disease, I’m doing a news article on it and would really appreciate your expertise.
Many thanks
Rosie
Hi I was bitten by a tick on Blackamoor in 2011. I did not develop a bulls eyes rash. As I found it in the middle on the night under fatty part of my upper arm I left the head in. Went to emergency next night but no one knew if we had got it out or not. I began to feel little nipping sensation and crawling sensations on my skin about 5 weeks later. I did not connect these to the tick bite. Neither did any Doctor or dermatologist. It is now four years later. I am sat here in great pain to my upper arms and forearms. This has gone on 2 months. I am pretty much disabled. My Doctors tried to tell me it was Fibromyalgia till I check the symptoms against Lyme disease. They are the same. Try as I might I have not been able to get a blood test for Lyme on the NHS. My Doctors say it is hospitals job. Public Health say it is the Doctors job. I am awaiting to go to infectious diseases on Monday. I am pretty certain I will be given the run around. Here is what you need to know: Lyme disease leaves the blood after a while and settles elsewhere. It is very difficult to test for at this stage. The tests are not that accurate anyway. The testing should be done through Porton Down. You may have to pay for them.Doctors do not want to know. On treatment I will let you know if I get any. This is the most frightening experience of my life,
Hi Val
Sorry to hear you’re having a bad time of it. It is difficult to get this disease taken seriously and yet I think it’s becoming ever more widespread. I had a blood test for Lyme at my local GP but I think I had it way too early and besides, the standard test is (from what I read) hopelessly unreliable anyway. Please do keep me posted on how you’re getting on. Keep spreading the word as well!
Bob
It’s also worth noting that if you’ve ever had a cold sore, the tests for Lymes can be affected – my doc (who admittedly is a private doctor) gave me the antibiotics – I didn’t have the rash either, but had a tick in the fold in the middle of my arm… After suffering from terrible flu like symptoms for three months, I mentioned the tick to him, he immediately gave me the course, and I felt significantly better within 48 hours. It’s worth taking the course even if you aren’t able to get a full diagnosis, but know you’ve had a tick, and have the symptoms.
Brilliant advice for tick bites. Also need to remember that horseflies pass on Lyme too as that’s how my son got it.
Hi Maxine
Thanks for posting. I really had no idea that horse flies can pass it on – has this been proven? Another reason to dislike the little blighters!
Very well written article I just think that you simplified the severity and chronic nature of this illness. I had been 16 years extremely ill and a diagnosis of ME .I returned from the states after my tick encounter (no rash) pregnant and very ill. Everything was put down to pregnancy symptoms and I ended up in heart failure nearly killing myself and my baby. What followed was 16 years of the quality of life of an 80 year old (I was 23 at the time) severe pain neurological issues paralysis confusion and memory loss only to be told by doctors there was nothing wrong with me. Flash forward 16 years and through my own persistence have had my positive lyme test my son is also positive with the same American strain and co infections and I am mostly bedbound. I have been on antibiotics for a year and had minor improvement but my immune system has been so damaged I have autoimmunity and severe immune dysregulation that no amount of antibiotics will clear and I’m now caved with the enormous task of raising 23k for stem cell treatment for a second chance at having a life. I’m so glad you had a lucky experience and that your doctor and yourself were lyme savy which no doubt saved you but there are so many stories like mine where it has literally robbed lives.
Hi Nicola
Thanks for posting! Sorry to hear about your struggle with Lyme, I hope you manage to raise the funds you need, have you gone down the route of crowd funding yet? Might be worth a try. Are you in the UK?
Bob
Hi,
Last night, after a hospital visit (who missed it completely and thought it was a spider bite) and then an emergency GP visit where the wonderful doctor recognised the huge, big ass bullseye rash and the fact that I said I was bitten by something whilst out walking my dog in a grassy meadow full of cows seven days ago, I was given a preliminary diagnosis of Lyme. My dog picked up two ticks also. I have a horribly infected bite site and the tell-tale red ring around it. I started the antibiotic treatment last night but have done some research and the information reads like a horror movie. I have since had two more GP visits due to symptoms including excruciatingly painful headache, neck ache, joint and muscle pains. Have been prescribed heavy duty painkillers and am signed off work sick. At work, they were very nice about it but looked at me blankly when I told them what the diagnosis was. I think the health and safety officer was the only one who bothered to look it up because he kept looking at me with those sympathetic eyes when someone knows you have cancer :-(. Having had two previous ticks in the last couple of years, I thought I had taken the right precautions. Long trousers tucked in to socks, shirt tucked in to belt etc. Somehow the evil little creature still managed to get in and latch on to my shoulder where I couldn’t see it when I did my regular all over tick checks after a country walk. From now on, I think I’ll have to spray myself with Deet as well. My husband thinks I should get a tick collar from the vet and wear it. ‘My Lyme Story’ for anyone who is interested. Sylvia
Thank you for taking the time to post this Sylvia. How are you doing now?
Bob
Hi Bob,
Thanks for your concern. It is seven months later and all I can only say that Lyme Disease has been a complete shitshow for me. I had to have major shoulder surgery to deal with a huge infection. It must have been a filthy little creature. I had to have an emergency admission to hospital with acute sepsis which went systemic so I was really unwell. The wound required daily packing for three months. Even though I caught it early, I have had long term and severe health effects. In 2017, there were 3 Lyme diagnoses at my doctor’s surgery in Cheddar, Somerset. In 2018 due to increasing temperatures and rainfall, there had been 38. They called in the health department and did a tick study and found that 2 in 5 ticks tested positive whereas before, it had been 1 in 10. Here in the UK, Lyme knowledge among medical professionals seems to be backfooted. My serological test came back negative but I have been diagnosed with ‘Lyme type symptoms’ with no further explanations or investigations. My heart has been damaged. I am waiting for a decision on whether or not I need a pacemaker due to a left-bundle-branch-block and dyskinaesia i.e. an electrical and muscular failure. I have chronic and severe pain radiating from my shoulder and down my right side and arm. I also have right side weakness. When the pain is really bad, it is incapacitating and causes breathing difficulties because it affects my chest muscles. I am working but it is difficult. I am hoping that I will feel better soon.
Sylvia
Hi Sylvia
That sounds like a terrible combination of symptoms, it’s just not fair. Not fair that it’s happened and nor fair that’s there’s no easy fix – it does seem clear that the NHS does not have a handle on Lyme at all. I did notice that they’ve changed their guidelines on how much doxy you should take and upped it from 2 weeks to 3 which is interesting.
Hi Bob
I am being treated for Lyme Disease although I think the Dr was just appeasing me. I live in North Leeds and was taking my dog for a walk in Clayton Woods where there are deer and foxes.
I was bitten by something in the middle of my right calf, don’t know what, but it came up in large lump and was quite itchy. Didn’t think much of it after the initial itch, that only lasted a day. But 2 weeks after came a rash about 6cm with a white circle around the bite and a red rash surrounding that. I also started getting heart palpitations and a mild sore neck. Thinking what on earth has taken a bite out of me and made me feel a bit rubbish, I googled insect bite pics. Now, as you know Bulls Eye Rashes come in all shapes and sizes and I saw a few pics that looked like my rash. I luckily got a next day appointment at my gp surgery and saw a prescribing nurse. Her response to my rash was inconclusive. I got comments like, ‘you’d know if you were bitten by a tick’ and ‘I doubt you get Lyme Disease in Leeds’. Anyway, she gave me 1 weeks worth of Amoxicillin, when she realised that I wasn’t going to give up. This in itself made me feel a bit silly really. There’s been all this thing over the last few years about handing out antibiotics Willy nilly and then there’s me practically demanding them based on an inconclusive pic on google. She also booked me in for an ECG, which was clear. After my appointment I found out that you should have at least 3 weeks antibiotics, so rang my gp the next day and was given a further 2 weeks.
Anyway, fast forward nearly two weeks (one more week of antibiotics to go) and I’m still having heart palpitations, although not nearly as bad, the rash is fading but the leg that I was bitten on, I’m having a mixture of stabbing pains in the back of me knee, numbness lower front shin and pins and needles in my ankle and my leg feels really heavy.
Wether or not I have Lyme Disease, i guess remains to be seen. But, I am so glad I read this as you have proven that you can in fact, contract Lyme Disease in Leeds and if I do need to see my gp again, regarding this, I will be showing them this article.