As many of you now know I am currently beginning treatment to fight off a number of viruses that are attacking my body.
What I have been through in the last 10 years and especially nearly the last 3 have been a living nightmare. I am not being dramatic or over-playing how I have felt. Yes you think I am normal and seem fine but I kept a lot of my symptoms to myself. Not fully understanding them and thinking to myself that I was crazy let alone everyone else thinking I was.
However, I visited dozens of doctors, consultants and health professionals, all dismissing me and making out that it was me going crazy, all the pain is in your head.
After doing more researching I am learning how dangerous not having access to treatment quickly can be.
A friend said to me 'oh it's bacterial it will be sorted soon.' Yes! My main ( gosh it's like it's my pet ! ) and most seriously virus Borelia which I have two strains of is the leading virus to Lymes. If treated within the first 30 days of becoming infected - stage one of Lymes, will simply be antibiotics and nearly all paitents recover with no lasting problems. As the virus has not managed to get too imbedded in the paintent's tissues and major organs.
Stage 2 after being infected for a few months will begin getting more painful symptoms - aches and pains in the joints & tissues, headaches, fatigue and more. Paitents at this stage can normally face a treatment package of antibiotics and a stretch in hospital on an IV and taking herbs.
Stage 3, known as chronic Lymes is when the paitent has been infected for years. The virus is deeply imbedded in their organs and tissues. Nerve pain, joint pain, heart palpitations, headaches, thyroid problems, fatigue, muscle weakness, throats problems, digestive issues, intolerances & more. This is one of the problems with this disease the symptoms mimic a lot of other diseases and problems. Allowing people to easily be mis-diagnoised. This stage antibiotics are rarely used as they can backfire causing the virus to go back into the tissues, wrap themselves up in a protective cover and reproduce. There seems to be a lot of treatments that people are trying around the world. Herbs are the main form of treatment but people have been in oxygen chambers and all sorts to try and heal themselves. Unfortunately at this point not all paitents reach full recovery, the virus has set up home in your body for many years and has done a lot of damage to your major organs, tissues, cells and changed DNA which can't be repaired or healed. Some suffer memory loss, loss of use of their legs, heart problems, arthritis, nerve pain and chronic illnesses to name just a few.
I have experienced this first hand - my insurance won't pay for my treatment because it does not recognise the viruses which are being treated.
I watched a documentary Under The Skin, where in America due to lack of Lymes knowledge and education across the world, this consultant Dr Jones was researching and looking into why paitents weren't able to reach full recovery. Stating that due to the damage caused from the viruses being within the body so long people then suffered from chronic Lymes Disease. This meant that the paitent would need ongoing treatment for life! Of course insurance companies hated this claim. They weren't prepared to pay out for a life time of treatment for people. A month of antibiotics and maybe a hospital stay was enough in their eyes! So they took Dr Jones to court. Leading Dr Jones to have his license suspended for 1 year, he was sued by the insurance companies for 1 million dollars resulting in him losing his clinic. He felt awful. He has lost everything and on top of that he felt worthless and awful on his paitents as he could no longer help them. This led him to commit suicide.
And due to this fight being lost millions of affected people have been forced to sell their homes, jewellery or simply pay out thousands and thousands of pounds to keep receiving treatment so they can still live and live comfortably.
This is an upsetting and scary reality.
The insurance companies want to be ignorant towards these killers & the health professionals want to as well.
A husband of a sufferer who had, had the virus for 8 years explained how his wife was having a fit right infront of a doctor at the hospital and the doctor turned to him and said it isn't Lymes, it's in her head. Her husband was horrified. She was literally suffering right infront of him. She also died. As again she was dismissed and not treated correctly!
It isn't a silly quick fix virus. Lymes that comes from tick bites, the tick having being exposed to an ever growing polluted world hosts a number of parasites within their bodies which they ultimately pass on to you. This causing people to be infected by a number of viruses and causes the symptoms to be slightly different. ( Which too makes diagnosis even harder).
Another alarming fact is only 50% of people get that bullet point rash that signals a tick bite. Again adding to the problems of it being missed and not diagnosed.
I know in China, we had been to the zoo and seen the pandas ! A fab experience! But then in the coach after I was sweating like crazy, high temperature and fever like symptoms. I was forced to stay in bed for a day or so but antibiotics seem to treat me and I was fine. ( or so I thought!!)
Never did I know it would all equal this.
We also have to realise that it is worth paying the extra money to get the more intense tests done as the normal tests will always come back negative from these viruses and therefore doctors will tell you, you are fine. The doctumenty said the 90% of 'normal' bloods of a Lymes' sufferer come back negative causing you to be dismissed! Despite being attacked by a large number of parasites. As they don't test specifically for these deadly bacteria it is just an over all check!
I have also found out that there was a major coxsackie break out ( another virus I have attacking my major organs ) in China the year before my visit and 22 people actually died! It is a worrying virus as it attacks the heart, joints and pancreas. Again this shows how easy it is for the tick to pick up different viruses and parasites.
I think at first I thought and hoped treatment would be months to a year. However after listening to people's stories people who have suffered for more than 4 years seem to be years into their treatment and have good and bad days. Of course everyone's damage is different and due to such lack of knowledge of Lymes treatment varies a lot. So it will just depend on how my body reactions and deals with treatment. It may mean having a lot of treatment for a year, being fine for a year but then re-introducing treatment just to keep the viruses at bay. Some paitents seem to have to do this ( on going treatment which is what the insurance companies refuse to pay for.)
Yes, having to have on-going treatment is a scary and upset thought but if it means you get a life then it's worth it!
People may say why do you worry yourself researching? I research because I fight my own battles. I am here and where I am at ( yes it is FAR from ideal) but I am here because of my fight and my flame wanting to heal!! I didn't wait around, give up or accept being dismissed and neither did my Mama who is my rock of course. I could so easily have done.
I want the knowledge not only to educate and help myself heal & cope but to raise awareness and prevent others suffering as I have and many others!!
Getting the right treatment is essential I can't stress it enough. It is a little bit like a Russian roulette game and this is why more research needs to be done, doctors and consultants need to be educated, paitents need to be listened too and taken seriously and tests need to be more in depth!
Here are the symptoms:
If you can remember being unwell abroad or have these symptoms PLEASE, please get tested!!
Intolerances and allergies
Changes in body temp
Inflammation in the body
Not everyone will have all these symptoms and they will differ from paitent to paitent due to the wide range & different parasites that have invaded your body.
I have coloured my lovely little bug 'tick' with bright colours. Why, colour something that has caused you so much pain & agony so colourful?
Make negatives to positives. Without that one tick I wouldn't have the strength I have today, have felt and learnt to deal with pain like I have, learnt to smile when you want to cry, made me the person I am today and have achieved what I have today. For that I have to be grateful.
I am learning to be grateful for more things I would normally have taken for granted.
Like today - I am so grateful to my Mum taking me to Barton Grange and just walking around for an hour. Seeing people live, just being out. Yes making conversation, walking, carrying - simple tasks are so difficult for me. Though I have lost many of passions due these disease, I do reconigse & am grateful for the ones I have also gained through them but life has become hard work, things don't give me pleasure like these used to due to pain and difficulties so simply walking and being out for a while is me fighting back, not just sitting in letting the pain take over keeping me in bed and not living life at all. I need to keep motivated and remind myself life is life and there is a purpose to it. I am thankful to my family and close friends for helping me with this. Taking me for coffee, letting me go round for an hour, taking me on a wander, watching a film with me. Such a massive help! Thank you.
I am having to accept these troubles affecting my life and myself physically. Though it kills me knowing they affect my loved ones. I don't want their lives stopping because I can only ( what I feel ) live half a life. I want them to keep living life to the fullest whilst they can and have the opportunities knocking at their doors. We never know what is around the corner or what life will throw at us. So cherish everything & be grateful for every little thing! Whether it is a cup of tea or a trip to America.
It is Lymes Disease Awareness Month throughout the month of May. Starting tomorrow. I really want to do anything I can to raise awareness, do more research & stop as much suffering as I can, whilst healing myself.
Thank you for reading and I hope you are all in the fight with me.
Thank you for your ongoing support, it means the absolute world to me.
If you have been affected by Lymes or any other deadly virus let me know. How did you manage? How were you treated?
Keep fighting on warriors!
We are our own hero's.
Love and peace
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.