On receiving the email from LymeDisease.org early this morning - about getting managing to get Dr Gary Wormser off the IDSA panel. The IDSA is the Infectious Disease Society Of America. So it was beginning to feel like our voices are finally being heard.
Dr Wormser has many lawsuits currently to contend with and his practise has been questioned. He was using Lyme Disease for his own financial gain. Feeding the lies that Lyme is a fake disease and therefore would continue to be ignored by health professionals.
Having Wormser off the panel, allows the IDSA to now have a clear view of the issue with Lyme Disease and be able to research further into treatments and testing's without mal-practise.
Also what I feel is an important issue to raise - well actually one of two points, but firstly the case of MP Michelle Donelan. A conservative MP for Cippenham.
Michelle was bitten by a tick whilst away in Latvia and was diagnosed with Lyme Disease after a chance conversation with another constituent.
At the time ( July 2016) Michelle was 32 years of age, she noticed a rash on he upper arm after she appeared as a guest of honour at the Semingtion village fete in Wiltshire.
She thought nothing of the bite - of course, until a week later. When a man suffering from Lyme Disease came into her weekly constituency surgery to discuss care options.
Michelle admitted she knew she wasn't well she had, had the rash for a week and it was getting better. She thought nothing of it though.
She told the telegraph back in July - 'A chap came into the surgery to talk about the level of care and Lyme Disease. I did further research and saw the symptoms - that's how my rash looked.'
'I had a bullseye mark half the size of my arm and that's when I knew what it was. I WAS QUITE LUCKY, as if you DON'T get it really early, it can damage your nerve and eventually lead to death!'
Following Michelle's diagnosis she said she felt absolutely terrible! She was suffering with severe fatigue and feeling terribly sick.
After 5.5 hours waiting in hospital it was confirmed she had Lyme Disease and was prescribed 3 weeks of antibiotics.
Michelle went on to say, 'THANK GOD that man came in regarding the disease yesterday at my surgery. Thank you a thousand times to him. It appear MP surgeries can help MP's too!'
The rates of Lyme are not just rising in the UK but around the world.
John Caudwell the founder of Phone4U has accused the NHS of negligence in failing to fully investigate the increasing number of cases throughout the UK alone. He has called for more research after he claim that 11 of his family suffer with the disease.
The second point, is that the NHS have altered their Lyme Disease advice page on NHS CHOICES. They don't just talk about early symptoms and sizes, two week antibiotics and how to prevent getting bitten .
They go on into more detail about possible earl symptoms - not just the bullseye rash and fever..
but joint pain, heart complications and inflammation of the spinal cord. The more alarming symptoms that they used to dismiss that Lyme caused.
They THEN go on to state that that sufferer's can go on suffering with long-term symptoms and may caused the development of CHRONIC FATIGUE SYNDROME AND post-infectious Lyme Disease!!!
Which to many in the NHS DOES NOT EXIST.
Here it is CLEARLY STATED ON THEIR WEBSITE!!!!
AFTER, explaining about getting tests done by PUBLIC HEALTH ENGLAND and the ways to prevent getting Lyme Disease, brushing over the subject of post-infectious Lyme Disease they finish of this note:
"Chronic Lyme disease"
There has recently been a lot of focus on Lyme disease in the media, with much attention on people who've been diagnosed with "chronic Lyme disease".
This term has been used by some people to describe persistent symptoms such as tiredness, aches and pains, usually in the absence of a confirmed Lyme disease infection. It's different to "post-infectious Lyme disease" (see above), which is used to describe persistent symptoms after a confirmed and treated infection.
It's important to be aware that a diagnosis of chronic Lyme disease is controversial. Experts do not agree on whether the condition exists, or whether the symptoms are actually caused by a different, undiagnosed problem.
In either case, there's no evidence to suggest people diagnosed with chronic Lyme disease can pass the condition on to others, and there's little clear evidence about how best to treat it.
I don't see how changing the name changes the diagnosis of on-going 'chronic' Lyme.
I was refused my medication in hospital for my Lyme- due to them not believing my diagnosis - despite HIGH positive result for not only Lyme but other severe, deadly infections - Coxsackie being just one.
As you will know these diseases are DEADLY! They attack all your major organs, brain, heart, joints, liver, pancreas and nervous symptom. It took my blood pressure dropping to 78 over 66, my oxygen levels to 73 and beginning getting chest pain after two weeks of NO medication and them firstly starving me then feeding me everything my body can't tolerate to FINALLY call out a doctor to me. Who kindly allowed me to have ONE pain killer and told me to wait 72 hours until ward round to discuss with my doctor what to do.
I asked and asked for my daily blood results to ensure my white blood cells weren't dropping and my ATL liver levels weren't rising. I was refused and left coming out with a highly, dangerous ATL level and my immune system was once again below normal and in a vulnerable position.
Since coming out of hospital I have had the pleasure to meet my local MP Ben Wallace who is willing to help in any way possible to raise awareness about Lyme Disease.
He may be fully aware of Michelle's story and having one of his own suffer first hand with this disease may drive him to work harder to aid research, testing's and so on.
I will be meeting Ben Wallace in the New Year - to hopefully discuss further.
Everyday is a new, painful battle which we aren't always motivated for but do the best we can to NEVER lose the fight and give up.
I am not being dramatic when I say that some day's we do feel like this may be our last. Its a scary disease and illness.
I am thankful for all the love and support I receive EVERYDAY and that is why I keep fighting. My body may be weak but the mind is as crazy and strong as ever.
I hope that this new information and personal stories gives us ALL hope that we are finding our voices and they are FINALLY being considered and heard.
I am still in recovery from my hospital stay - my body still feels extremely exhausted and weak... but most worrying is my mind.
Never truly feeling like yourself or understanding what is going on as well the trauma of never knowing when your time may be up is FRIGHTENING but something we have to adapt to and just be grateful for all that we have.
I AM TRULY GRATEFUL TO YOU ALL, FAMILY, FRIENDS, LOVED ONES, READERS AND FOLLOWERS.
We are all warriors.
Feeling sluggish and rubbish when you have woken up? Get boosting up on bananas the more the better - they will help settle your stomach, boosting digestion, they are a mood enhancer, they will give you the energy you need and keep you full. Buy my book for banana receipe ideas.
Wake up every morning and ATLEAST have one glass of lemon water before doing anything else! Ideally try to drink a litre of water. The lemon wakes up your digestive system ready for the day and has great cleansing properties.
Check your dairy and meat intake - dairy can sit in your system for up to seven days unable to digest properly. Meaning other foods also get neglected and nurtients aren't absorbed properly and you feel extremely bloated. Go and smell your food bin, your stomach will be in that state. Rotting foods in your belly - hmm nice.
DO NOT FEAR CARBS - THEY ARE NOT THE ENEMY! CARB UP!!
Bananas, Rice, Potatoes, Leafy Greens, Corn, Beans, Lentils etc PACK THEM IN GO MAD.
NEVER COUNT CALORIES - NEVER RESTRICT!! These restriction 'starvation' diets who tell you to only eat 500 calories a day then have a treat day - where you binge out and eat WAY too much, is simply messing up your metabolism and on your binge days yours body stores all the fat meaning you gain weight because it knows it is going to go back into starvation mode and needs to hold onto every little thing it can. HELLO WEIGHT GAIN.
Life is too short not to live it to the full, making yourself happy.