The Facebook page which publicised and organisedRed Shoe Day to remember people who have lost their lives to Lyme Disease and other invisible illnesses gained the support of nearly 1000 people. Many people from around the world posted photographs of themselves and their families wearing their red shoes (or slippers, socks, or even red toenails); evidence that awareness of Lyme Disease, related diseases, and the severity of them is growing around the world. Hopefully this will lead to greater awareness in the medical community too, and result in faster, more effective treatment in the early stages - most importantly, hopefully it will prevent further deaths in the future.
One
of the most poignant images posted on Red Shoe Day's facebook page is
the one I want to share below. I don't think the photograph needs any
explanation or description, I think this emotive image of empty shoes perfectly represents the
reason for Red Shoe Day.
Read Rico's story in the Evening Times article here: It took doctors two years to diagnose my Lyme disease I don't really know where to begin but I guess my story sort of starts at the end of August 2010 after an extremely busy year that saw me working crazy hours, going to the gym or practising martial arts almost every day and having some "personal issues" going on. I guess that's why every time a doctor or consultant told me it was stress that was making me feel like i was dying, I thought "maybe that makes sense?" I guess you know your own body better than anyone though and I knew in my heart that something wasn't right. I was in agony on a day to day basis, I was exhausted constantly and I had a headache for the first three months solid. For the first year and a half I had pains in my sternum and round my rib cage 24/7 that felt like someone was bear hugging me. I was also experiencing other strange symptoms that changed from week to week; pains in my right leg one week that would disappear and then I would have heart flutters. Then they would go away after a couple of weeks and dizziness would kick in for a few weeks. Then I'd feel really hot but had no temperature and then get terrible stomach acid issues when I was eating. This was coupled with the horrible realisation that nobody believed I was ill because I looked "healthy as a horse". That was probably the worst part; the feeling that people think you're exaggerating your symptoms when you really feel like you've been poisoned. Your friends invite you to play football and go to martial arts seminars and keep "forgetting" that you're ill. "How can they forget when I'm consumed by this every minute that I'm awake?" I probably made this worse by working through it all but when you're self employed you don't have a choice. I remember turning up to sing and play piano at weddings and putting a real show on with a big smile and then throwing up as soon as I came off stage. Nobody would have ever known that was going on and I couldn't let them find out because I felt that if I stopped, I wouldn't have been able to start again. I tried every supplement known to man and tried all sorts of crazy therapies and had to pay for them all myself. It was 2 and a half years before I got my diagnosis of Lyme disease and I cried so hard when I found out. Believe it or not it wasn't because I was scared! I was crying out of happiness because I was starting to believe I was losing my mind and I finally had a piece of paper with a blood result on it to prove to everyone that I wasn't exaggerating or crazy or anything else of that nature. I also didn't know enough about Lyme disease to realise that it's known as the hardest illness on earth to cure! The tears might well have been from fear had I known at that moment what the diagnosis really meant. That was over a year ago and I've tried quite a few therapies and treatments since I had my diagnosis. Unfortunately I'm not cured yet but at least I now know who my enemy is as opposed to fighting with a blindfold on. I'm still able to work and lead a fairly normal life, albeit a very sedentary one, which is a lot more than a lot of Lyme sufferers are able to do so I guess I should think myself lucky in a way. I know I will beat this but it will take patience and will be one day at a time. There's no "one cure fits all" for Lyme unfortunately or we'd all be on it instead of searching on support pages and trying to help each other with advice of what's worked for some and not worked for others. The health organisations of the world need to step in and do something about this. All I was offered by the NHS was a couple of weeks of Doxycycline antibiotics and a meditation course to help me deal with my diagnosis. Really? Is that really the best they can offer? Lyme is on the rise worldwide and we have to raise awareness about it so please, let's get people talking about this horrible illness and maybe we can avoid an epidemic.
Check out Rico's song he is currently working on about his journey with Lyme disease
This weekend will see awareness protests around the world with the aim of increasing awareness of Lyme disease and gaining proper treatment for patients and updated information, based on current research for doctors, other health professionals, and patients. Details, pictures, and media coverage from all the protests can be found on the Worldwide Lyme Protest facebook page.
In the UK, Friday saw a Lyme awareness protest in Manchester; Saturday will see a protest outside the Department of Health in London. See the Lyme Disease UK facebook page for coverage of both events.
If you're in London and looking for something to do tomorrow - join in the protest; take the place of someone who wishes to be there but is too ill to attend because treatment is not available....
If you can't do that, show your support by supporting the GoLymeGreen campaign - wear green, turn your profiles pictures green and share awareness about Lyme! Your help could save someone's life.
Donating blood in the UK: no screening for Lyme Disease
There are many restrictions on donating blood - all designed to prevent transmission of infection. Usually blood transfusions are needed when people are ill or in a serious accident, so of course they don't want to be giving blood which has the potential to spread another illness.
As the poster says, in the UK donated blood is screened for Syphilis, another spirochetal bacterial infection but is not screened for Lyme disease. Borrelia Burgdorferi is also a spirochete - a bacterium with the ability to invade any cell in the body due to their ability to burrow through tissue using their spiral-shaped 'tail'.
This video shows and explains how spirochetes move through tissue:
In the US, the guidelines from the American Red Cross for donating blood state:
Lyme
Disease
Accept persons with Lyme disease if they were treated, the disease
resolved and at least 1 year has passed.
Those with chronic Lyme disease are not eligible to donate blood.
Interestingly, the CDC (Center for Disease Control) refers the question to the Red Cross site, despite not acknowledging the existence of 'chronic' Lyme disease (also referred to as disseminated Lyme disease - where the spirochetes have travelled throughout the body and the infection is systemic; or late-stage Lyme disease).
Their advice states:
Although no cases of Lyme disease have been linked to blood transfusion,
scientists have found that the Lyme disease bacteria can live in blood
that is stored for donation. Individuals being treated for Lyme disease
with an antibiotic should not donate blood. Individuals who have
completed antibiotic treatment for Lyme disease may be considered as
potential blood donors. Information on the current criteria for blood
donation is available on the Red Cross website
