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.
Red Shoe Day is an international day of remembrance for those who have lost their lives due to Lyme disease and other invisible illnesses. It is also intended to be a celebration of their lives - and perhaps just give us a moment to pause and appreciate ours. "Red Shoe Day was established in
memory of Australian Lyme (previously ME/CFS diagnosis) Patient, Theda
Myint who left this earth on the 25th July 2013. It is envisaged that
this day will become an annual remembrance day to remember not only
Theda, but all those lost to Lyme and other invisible illnesses
worldwide."
We hope that increasing awareness of Lyme borreliosis and associated diseases, including other invisible illnesses will help prevent deaths in the future.
“Hope is the thing with feathers, that perches
in the soul, and sings the tune without words, and never stops at all.”
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
If you don't have a sense of humour, survival is impossible....
Just a little video making fun of a typical appointment with a GP who knows nothing about Lyme disease. While this is a funny little clip, most Lyme patients actually can relate to it in some way and report having experienced some kind of similar treatment - having been doubted, dismissed, ridiculed or simply not taken seriously by a doctor; other medical professional; or by a friend/ family member. This little clip doesn't intend to 'get at' doctors - the intention is to create more awareness that there is genuinely a gap in medical knowledge - at every level - and more research and more information is needed to bridge that gap; to move away from outdated guidelines; and to truly TREAT the illness - a bacterial infection (or Lyme MSIDS - Lyme multi-systemic infectious disease syndrome) with appropriate drugs, taken for appropriate periods of time.
It's not really a big request....
In the meantime, we are very thankful for LLMDs (Lyme Literate Medical Doctors) who try very hard, often seeming to work against the system, to help their patients heal.
This week, Dr Mehmet Oz, who hosts a talkshow on US TV, with viewing rating far exceeding a million, brought his audience's attention to Lyme disease.
With Lyme there are so many unknowns which create controversies, so the information discussed was not especially 'deep' - he did not delve into the intricacies of the disease, testing methods, or treatment. What he did was bring Lyme to the attention of MANY people with a simple overview of the stages of Lyme, the symptoms at different stages, and the acknowledgement of a "chronic" version (also referred to as late-stage or disseminated Lyme disease). The clip also shows exactly how to remove a tick - with a giant tick and giant tweezers prop. These short clips from the show are definitely worth watching - take 6 minutes to watch something essential and please share to help someone else avoid chronic illness:
Lyme Disease: Dr Oz Show 5/5/14
PART 1
Lyme Disease: Dr Oz Show 5/5/14
PART 2
For those not familiar with the name, Dr Oz rose to fame with his appearances on the Oprah show and is a definite celebrity in the US (TV) medical world. His C.V. is definitely impressive - he earned a medical degree and an MBA, at an Ivy League University; and now hosts his own talk show while still working as a cardio-thoracic surgeon in NYC. To add a little twist to his conventional knowledge, his wife is known to favour holistic treatments and Eastern healing which he has incorporated into some of his own methods. Between them they have also published several books. For a little bio on Dr Oz, check out this New York Times article (from 2010).
