Hitting Government & Lyme On The World Stage
I know that one person can’t change the world 🌍 , but hell I’ll give it a go.
I’m extremely lucky to have an amazing, supportive local MP Ben Wallace. Who has taken the time to really research further about Lyme disease and reached out to the minister Lord O’Shaughnessy asking him for a report on what Government are and planning on doing with this health issue.
He also did some more digging to find the All-party group that is run by the Government which hold regular meetings to discuss about Lyme disease.
I am pleased to say Michelle Donelan - who is accompanying to me conference next week is chair of this all-party group.
So Michelle will be a fabulous ambassador next week.
I know Lyme isn’t a subject our business of park homes resolves around but it is our opportunity to get ahead of other businesses and lead the way.
We spend a lot of our time promoting outdoor activities and country living, yet we put our residents and customers at great risk of getting bitten.
We have the opportunity to really make a difference and change.
It won’t directly affect our business but we have to look outside the box. It’s not just about our business, on the scale that is a tiny spot - we are going bigger and making waves country wise.
We can begin setting up posters, educating ourselves, other park owners, staff, residents and customers.
Lyme is a hidden epidemic - let’s start getting to grips with the facts.
With a matter so close to my & my family’s heart I am over joyed to have the support and bringing in this opportunity for awareness to reach new heights and grow the business as a whole.
Hopefully Ben himself will be able to join us, but with his hectic schedule he is forever being called to Parliament. We will pray and really hope that on the day he can make it.
I have also contact Lord O’Shaunghnessy directly to share my story personally and again explain my goals.
On the world stage - many hate Donald Trump. His latest bill to make vaccines a choice in America rather than compulsory is in my eyes a very good move. Why? You may ask.
Why, why, why! Vaccines save lives.
They do, yes.
They also cause people who’s immune systems aren’t healthy extremely serious problems.
Bombarding a low, suppressed immune system with more viruses of course only leads to damaging issues.
They now advise in the NHS that if you have a suppressed immune system not to have the flu vaccine.
For years I told my Mum I didn’t want it because everytime I had the jab I was really poorly with flu.
I didn’t have it this year and despite my immune system being extremely low, compared to everyone else’s, flu hasn’t been a issue ( touch wood). I’ve had sore throat and weakness but that is normal for me these days.
I strongly believe though vaccines DO save lives and can be a great aid, some people can’t have vaccines because their body’s don’t have the material or are strong enough to fight the virus.
With this new law coming into America - I feel that now people can do their own research, listen to their own bodies and do what feels right for them!
If I’d of had to follow NHS guidelines I would have had to have the flu jab and most probably be extreme sick now.
More world updates:
$80,000 has been award for the University of Los Angeles for research on Lyme disease.
There was a Lyme disease vaccine available but it was pulled for the market back in 2002! Now researchers in Boston are working hard to create a vaccine that people can take every Spring at the price of £140 approx, to protect people over the Spring-Summer season.
The only vaccine made for Lyme was by GlaxoSmithKline who designed a vaccine to fight the protein that surround the bacteria’s cell walls. Lyme is clever though and can change & alter not only your DNA but their’s. Meaning these extra proteins would only work in the fight for a short period. Not offering full protection.
This vaccine was called LYMErix- it went through 3 clinical trials and was passed by the FDA in 1998 before being pulled from the market in 2002.
There was a law suit claim that over 100 patients had suffered adverse affects from the vaccine and so the vaccine had to be pulled.
Erol Fikrig then tried to work with LYMErix but target the Lyme’s salvia to find a vaccine. This concept was to try and block Lyme transmission. Fikrig published his finding in 2009 - Cell Host & Microbe.
In 2013 a clinical trial in Germany and Austria took place. 300 patients were vaccationed. There was no real adverse affects.
In 2015 researchers at the University of Massachusetts, Boston medical school began running their own research trials. They presented their research - pre-exposure propylaxis.
Their work has created a vaccine that would protect the patient for six months. Which would get them through the high tick season. They are currently doing more human clinical trials.
Dr Robert Smith has now replaced Dr Wormser on the Federal Lyme panel. This is fabolous news and Wormser was blocking cases to prove that chronic Lyme does exist and seemed to be putting hurdles in place for better treatments and more research to be done. His practises were being questioned and he seemed to be in it for the money, not the health of his patients.
New! Scientists had published new research that 700 species including ticks create a cement to our skin on contact so it makes them harder to remove or drop off. Meaning the disease is even easier to pass on.
This glue is made up of the bacteria’s cell protein in their saliva.
Lyme cases in Maine hit an all time high in 2017 - 1,787 new cases were reported last year.
A 22 per cent increase on the already high 1,464 in 2016! ( and they say Lyme isn’t a a problem and doesn’t exist).
The Tick Borne Diseases working group will be meeting on the East Coast Of America on the 12th Feb.
The tick seeks you out! You all know in this game the disease is one step ahead of you! Well it really is. The tick uses scent to seek its host’s out. Using its legs and the Haller’s organ. It helps the tick sense carbon dioxide and infrared heat which of course us humans give off because we a full of heated blood, blood they crave.
Lyme disease stats in America were published a month earlier than the previous year and higher. Leaving people to question how bad this epdemic really becoming and why are stats not being clear cut and fairly recorded.
Talking to your Anesthetist! This is a serious problem, I never even considered. You must tell them you have Lyme disease and the anaesthesia can further suppress the immune system and can leave you open to catching further infections! Patients with a number of infections can have viruses re-actived when the immune system is slowed. And because anaesthesia affects you nervous system that is where many nasty diseases target and hide themselves. Since 2005, 20,000-30,000 infections were recorded that were passed on due to having anaesthesia. By US law the required diseases that must be reported to Government officials, the fifth is Lyme disease!!
You must always explain your condition and allergies to ensure you are kept in the safest hands possible!
On the 13th December many Lyme sufferers travelled to the US Health Department and vented their anger over the dismissal of their disease.
The Bay Lyme Foundation a leading sponsor of Lyme diease carried out research back in December that showed that Lyme bacteria can easily survive 28 days worth of antibiotics!
It showed how the immune response to Borrellia changed dramatically after antibiotics. It no longer attacked the pathogen like it had on first being infected.
Sneaky bacteria - shape shifting and altering our immune system.
After 8,000 new cases being recorded in New York last year, SEO’s and chair’s of park’s throughout the city are putting in place more advice, awareness and precautions and education for their people to protect & their State. New laws were passed to carry out further research on children and sufferer’s after death.
Lyme disease isn’t seen as a terminal illness, despite having NO cure or direct effective treatment!!!
The fight goes on. There is no rest.
The passed few days have been so hard.. pain radiates.
But my letter from Ben Wallace really inspired me. Inspired me to kick my bum in gear. I revamped my website, researched and contacted more people, and tried to get my head around a few concepts.
Life isn’t fair nor is it easy. No way.
It’s trying to make a difference but also taking time to feel life too.
My disease does consume my life - how could it not.
It never gives me rest bite, or grants me a holiday.
I can’t just sleep and feel better. I may not have the best life but I live as much as I can. I don’t want to look back and have regrets that the time I do have on Earth was wasted not making a different for the following generations or not being productive.
No matter what the pain.. I get up! The easiest task for many- but for me it may as well be doing a four hour hike.
I will keep fighting - not just for me, for everyone!