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."

(From: Worldwide Lyme Borreliosis Association)


Share your red shoe photos on the Red Shoe Facebook page


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.”

  ~ Emily Dickinson

"Let's get talking about Lyme disease"

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

You can find it here: Rico Franchi Music Facebook Page

Lyme: Donating Blood

An interesting point here.....

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. 

(From http://chapters.redcross.org/br/northernohio/INFO/eligibility.html )

These appear to vary from state-to-state.

 
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   

 (From: http://www.cdc.gov/lyme/transmission/ )

Lyme Humour

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.

From YouTube

Dr Oz talks Lyme Disease

 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).   


 

Shared experiences

A good clip on Lyme awareness from BBC South East today:



http://www.bbc.co.uk/iplayer/episode/b041svy2/South_East_Today_03_05_2014/


(Starts about 40 seconds in; only available within the UK - if a YouTube clip becomes available I will post an additional link)

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(From Pinterest)

A huge thank you to Sarah for speaking out and sharing her story and helping increase awareness.  And to the BBC for taking note and giving air time to this important issue.

 

Some people don't realise how hard it is, to look over your life, think of the person you once were to the outside world - to feel that person still battling inside you, just waiting to get out again - and to speak to the world about the hardest thing you have ever had to deal with.  

Imagine exposing your most personal feelings to strangers - it's not an easy thing to do, but without ALL of those sharing their stories and doing just that, we cannot increase awareness which means we can't help others.

Share your story: www.facebook.com/golymegreen2014

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(From Pinterest)

Lyme: bite-sized facts

You can read more in depth information about Lyme disease by clicking on 'Lyme in Depth' above, but here are some bite-sized Lyme facts:



1. Not everyone with Lyme Disease gets the 'bullseye' rash.  Already, some articles in the media are suggesting the bullseye rash (or Erythema Migrans) is the most common symptom/ among the most common symptoms for Lyme - this is not the case; in fact studies vary greatly in their estimates - from as little as 4%.



2. Lyme Disease is not easily treated.  The attempts by the media not to 'scaremonger' are easily understood - but there is a big difference between presenting information sensibly and presenting entirely false information.  In many cases, Lyme that is treated early IS treated effectively, but the media fails to discuss the difficulty in getting an early diagnosis.  Public awareness and access to good, reliable information is essential for both doctors and patients to ensure Lyme is recognised early, giving treatment a greater chance to be effective



3. Ticks are everywhere! Again, there is a lot of misinformation regarding where Lyme Disease exists and where ticks can be found.  It is difficult to verify this with one specific reference, but searching and reading around different articles, websites and blogs, as well as academic journal articles shows there is only contradictory information.  Basically, it's another big 'we don't know' about Lyme.


4. Ticks don't just carry Lyme disease.  As if it's not horrifying enough to envision a tiny little bloodsucker, literally sucking the life out of you (really, yes, that's what it feels like later), these lovely little buggers often transmit coinfections such as Babesia, Bartonella, various viral infections, parasites and other microbes.  See the links below for further details.  


In an article published in the US edition of the Huffington Post last year: The Global Search for Education: the 300,000 - Ticks  Dr Richard Horowitz is quoted as saying: "I call this syndrome Lyme-MSIDS. MSIDS stands for Multiple Systemic Infectious Disease Syndrome..."


Many people with Lyme disease don't 'just' have Lyme, their bodies are battling many infections at once - another reason for the difficulty in diagnosis and the disparate symptoms seen between patients.



5. Ticks do not have to be attached for a specific time period to transmit infections.  It is generally held (but more evidence is required) that the longer a tick is attached, the greater the chance of it transmitting infections.  However, removing the tick, squashing the tick, breaking the tick (by attempting to brush it off, for example) may all increase the risk of transmission as any of these scenarios can cause the tick to regurgitate its stomach contents and transmit infections quickly (yes, that really does mean the tick vomits into your bloodstream).  



On that happy, cheery, stomach-turning thought, we'll leave the info there for today.  

Just remember - the more you know, the less you are at risk!  Be proactive - learn about Lyme disease now.

Help promote Lyme disease awareness and help others too!


Some good resources for further info:

http://www.lymediseaseaction.org.uk/about-lyme/faq/

http://www.bada-uk.org/diseases

http://worldwide-lyme-protest.org.uk/lyme-faq/



 References for the above facts can also be found on the links

May: Lyme Disease Awareness Month

MAY is LYME DISEASE awareness month

(This first post will remain on the "Go Lyme Green" page)

On May 16, 17 & 18 protests are planned around the world in support of people battling this devastating illness

AIMS

(Further info: Worldwide Lyme Protest UK site)

Increase awareness of Lyme disease and other tick-borne diseases

Replace outdated treatment guidelines with new guidelines which reflect current scientific understanding of Lyme disease & associated infections

Demand better treatment, increased recognition, and support for patients & doctors

Help spread awareness of Lyme disease 

& support global protests online

 'Go Lyme Green'

Promote Lyme awareness through social media by making your profile pictures green

Wear something green - and tell everyone why!

Share your story, your photos & why this campaign is important to you

When?

'Go Lyme Green' will coincide with protests around the world on May 16, 17 & 18

Learn more about Lyme disease & why awareness is important for everyone

Follow us on twitter: GoLymeGreen2014

Like and share our Facebook page
(coming very soon!)

Watch this space for daily updates, personal stories & important facts about Lyme

When caught early, Lyme can be treated easily

Know the facts, don't let Lyme ruin your life