Lyme Awareness;
Lyme warriors are becoming known as the walking dead - these 10 points have been raised by the US Lyme Disease social media network. It helps give you an idea of how serous this disease is & how our fight for more research, better treatments and actually be listened to is more important than ever.
10. Anyone, any age can be affected.
9. If you don't fight it will most likely get the better of you and you will die.
8. There is no cure.
7. It happens with just one bite.
6. Our brains get effected.
5. We have all lost someone.
4. The number of us affected grows daily.
3. The hope is to stay alive.
2. Some are surviving day to day.
1. And some days living with Lyme makes us feel like the walking dead.
Lyme makes you jealous of a normal life, jealous of people having control over their bodies, able to go with the flow, feel zero pain and live the life they choose.
More research is desperately- needed! People are travelling to America to have antibiotics pumped through their hearts, Europe to spend everyday for weeks in oxygen tanks and are spending thousands on supplements, in house saunas, endless hospital and doctor visits to do anything to improve their pain and help them improve a step closer to life and away from the threat of death. However, there is so little solid knowledge and proof on the treatments available to us within the medical community that we have no idea what will help us and what could be fatal and backfire on us! This is also made far more difficult because everyone is infected with number of co-infections which are different from person to person. This means everyone needs different treatment to help them improve and everyone suffers similar but slightly different symptoms which is why a diagnosis is difficult to come by.
So why, why aren't Government's seeing this massive threat and wanting to help?
Lyme is becoming an epidemic! How many have to die through misdiagnosis, the wrong treatment or simply being dismissed as crazy before they listen and take action?!
Someone new is diagnosed with Lyme every 14.5 hours. If caught within the first month of becoming infected you will make a full recovery. Once the Borellia enter your organs and tissues after being in your bloodstream for a month then it becomes chronic Lyme which at current has no cure.
American doctors have been struck off and sued fighting the arguement that chronic Lyme does exist and a lifetime of treatment is required to keep the paitent - well, functioning. This is due to insurers not willing to pay out for a life time of treatments, medications and hospital visits. This is so wrong. Yet again, us as human being and the people are put at risk and suffer so that these companies and Governments can make and save money.
It leaves a bitter taste in your month.
This is why we must, must, must do our own research and push for treatment!
We are the only ones that can save ourselves.
Before I was diagnosed, around 5 weeks ago now, I was guilty of being totally ignorant to the dangers and understanding of Lyme disease. Now after hours of research, talking to Lyme warriors I have learnt so much, had my eyes opened and realised as my Mum has how this disease needs serious help, funding and awareness being raised to prevent more people suffering the pain we do.
It's living hell.
At first, I thought ok - yes I have been told it will be a long road but I thought that meant a few months of med's and a few stays in hospital. However, now after reading and talking it seems that it takes years, and years for people to get stable and go through hell to get there. Relapses and herx reactions from all the different treatments they have to try and go through to achieve a little normality. This is scary and so overwhelming. And when you are already so exhausted a long journey is daunting to say the least!!
I know I feel like I am dying most days but knowing that one wrong move could be fatal, and that I may never feel like the girl I was 10 years ago is truly upsetting. I am only 23! This is supposed to be the time for living and yet my Mum and I just this morning were joking that I had the scooter to help me get around if and when I need it. After seeing an 80year old driving around on his. We can laugh but it is heart breaking!!
It is a lot to come to terms with and it's an unknown world..
I am grateful to the amazing warriors I have spoken to/ continue to meet and talk to. The support I have received and the research I have come across so far.
Whether you have Lyme, know someone with Lyme or help a loved one who is suffering with Lyme disease we must all work together, raise funds, our voices and spread awareness in any way possible.
As in the U.K. we no longer test for Lyme. When it's rapidly on the raise throughout the whole world and with thousands every year being diagnosed in this country we have a right to have access to testing, treatment and the correct care. At present we have to rely on sending our bloods to European countries - Norway, Germany and Finland being the main options to have them tested. This is pricey and not always straight forward with blood packs having to be sent out for you to take to clinic to have your blood drawn, to then Fed Ex it back to the labs. However, we have to do these tests! On top of the expense, treatments are so expensive because it's a less known disease to treat so the medication to treat it is less common, there is less supply and they are less accessible. People pay thousands for IV drips, herbal med's, antibiotics and trips abroad to access the treatment they have been advised to use.
People have sold their homes, moved back in with their parents, sold cars, done endless fund raising, given up holidays and missed bills to pay for the treatment they need to keep living.
I hope this makes you all a little more aware of Lyme disease and the fact it isn't a joke, it's not just a little bacterial virus - its life threatening and is deadly serious. We aren't attention seekers, being dramatic or crazy!
I wouldn't wish it upon my worst enemy. People suffering with this disease don't want pity and we don't expect you to fully understand. Nobody can unless you suffer with it yourself. But please, be more understanding and want to help.
Please read all the quote pictures and please reach out to me if you have any advice / want advice, tell your story, treatments & experiences you have had or just to simply talk!
It gets lonely I totally understand. I will always take the time to reply to all who comment and reach out.
I hope you have a blessed weekend.
Love and peace
S
Xoxo