Wendy Fox

The following was taken from Wendy's website in 2004.

"My name is Wendy and I am 37 years old. I have been married for 16 years and have a 14 year old son.

I had an exciting life as a Zoo Keeper, up until a few years ago when I became sick.

While working in my dream job, I was bitten by a tick. In fact, I was regularly bitten but being a country girl and working with animals, it was just part of the things that happen when you are around animals every day of your life.

What I didn't know, at that time, is that many ticks carry a cocktail of parasitic bacteria and when they bite, the bacteria enter the blood stream and start to take over their new home. This disease is called “Neuro-Borreliosis" or " Chronic Lyme disease".

From working in a demanding and physical job, I am now reduced to life in a wheelchair, as I am paralysed from the waist down. I have a full time care assistant to look after me while my husband has to work.

My son cannot remember a time when I was well. This disease slowly takes your quality of life away by infecting the brain and central nervous system, slowly but surely destroying nerves. It depresses the immune system leaving an open door to many other conditions and infections. It damages the joints so that movement becomes limited and painful. It takes away memory functions making it impossible to perform many tasks and affects relationships because it changes the personality. The list of what this devastating disease does is endless!

My life has been irretrievably altered. My dignity often hangs by a thread. Being paralysed also means the loss of personal functions. I now have a catheter through my abdomen which makes me feel mutilated. Nurses come and go to change the catheter and perform other necessary tasks. The physiotherapist comes to loosen my spasmed muscles so that my upper body can move. Having a care assistant is like sharing your whole life with a total stranger. Yes, you get to know each other but on day one, they walk in and have to share your most personal care and, when they are off work sick or on holiday, another total stranger comes to take their place. Not many people can say they would happily have a total stranger come into their home to wash and dress them!

In England, the treatment follows the methods that were set out when this disease was first discovered in Connecticut, USA in the 1970's. These methods are very out of date. In depth research has been taking place in the U.S and Lyme experts have revised their treatments to be more successful.

The drug treatments that I have now are so inadequate. From the moment I wake, I am in pain. The pain control that I have to take makes me so sleepy that I sometimes feel that I sleep half my life away. I have to have antibiotics every day to fight the continuous infections that can take hold because my immune system is so weak.

Without correct treatment, my outlook is bleak. The last stages of Lyme are not too far away for me and this includes heart failure, renal failure, respiratory failure and many more life threatening complications. My life is already difficult and I have lost so much. I often lie in bed struggling to breathe, with my chest clamped tight in muscle spasm, wondering if I will wake the next morning. I do not want to leave my son without his mother and my husband without his wife. I struggle on day in and day out, fighting my condition, hoping that something is around the next corner that will ease my situation.

With treatment by an expert, I may stabilize. I cannot regain what I have already lost but I can look forward to a more comfortable life without the pain that I suffer now. To find a specialist, who is willing to follow the guidelines set out by the world`s best Lyme experts, is very hard. Luckily I have finally found a specialist who knows how to treat this disease correctly but money is still a huge issue.

Even though my doctors have expressed the total necessity for me to have this treatment, the health authority considers the medication too expensive. This scenario is told over and over. Patients are often given inferior drugs for too short a duration and they are often forced to supplement their treatment with private care and many have resorted to travelling to the US to get expert treatment.

I no longer have the funds to do this!

I feel blessed that I have such friends that would want to set up a website to help me, but in order for them to do this; I have had to open the door to my personal life. People I don’t know are reading my private problems. Newspapers have interviewed me and I see headlines that remind me that my life is on the line. My dearest friends are driven to ask complete strangers for money so that I can have treatment that should be available to me without question.

It seems that this half-life that I have been leading is not even worth the cost of the medication from my health authority. My only chance of some relief is to raise the money to pay for my treatment.

I dream of having more in my life. I enjoy spending time with my four cats.  My parrot that I have had for 22 years also gives me company and enjoyment. I have a love of gardening, but I am physically unable to do this so have to be content with watching the seasonal changes and my husband doing the things that I would like to do.

This disease has become much more prevalent in the UK and Europe. It is spreading fast. The need for adequate treatment for so many people is of great importance to me and I am desperate to get well enough to join the campaign to achieve this. 

Wendy Fox"

2009 update: Wendy was thankfully awarded more treatment for her Lyme disease on the NHS in 2004. After 18 months of a combination of intravenous and then oral antibiotics, she found a great improvement in her general health. She says that both her NHS and private doctors have been marvellous, giving her back a quality of life, and she can't thank them enough for their dedication. Although permanently disabled, Wendy now has enough energy and stamina to be Chair of BADA-UK.

Wendy is a founder member of BADA-UK, (Borreliosis and Associated Diseases Awareness UK)