Showing posts with label lyme and doctors. Show all posts
Showing posts with label lyme and doctors. Show all posts
Tuesday, 27 May 2014
"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
Sunday, 11 May 2014
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.
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
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