Unfortunately, the treatment that is needed is not available through our health service. Our daughter is deteriorating and desperately needs treatment.
Here is how it all began.....
In 2011, an unusual rash appeared on my arm. I ignored it, not knowing what it was.
Over the following months, I developed a flu like illness, severe neck pain, sudden fatigue and many more unusual all over body symptoms and pain. I had good and bad days. Dr’s didn’t know what was wrong. Irritable bowel syndrome? Irritable bladder syndrome? Chronic Fatigue Syndrome? and so on.
But I knew something wasn’t right. Ten months later, my husband and I came across Lyme Disease and as soon as we saw a photo of the typical rash, we immediately knew what was wrong.
Little did we know how difficult it was going to be to get diagnosed and treated.
Fast forward to the end of 2012 and my blood tests via the USA and Germany showed I was positive for Lyme Disease. After 3 months of private treatment and other antibiotics for myself, our daughter started complaining of various symptoms.
It was then discovered that our daughter had growth problems too & it was suggested that it would be a good idea to have our daughter tested for Lyme Disease. Sure enough, Isabella tested positive for Lyme. 3 months of treatment including antibiotics and supplements and all was well. She started to grow again and put on weight.
In February 2014, we moved to The Cotswolds to be near to family. After putting the heating on, the house sadly was infested with fleas when we moved in. Isabella was badly bitten.
Symptoms returned, legs hurt and Isabella started bum shuffling around the house. After 3 months more treatment, all was well again.
Isabella went on to have chicken pox which then turned into Chronic Fatigue Syndrome and eventually went.
Approx. two years ago
In April 2016, Isabella unfortunately kept catching head lice which we found were biting her neck and ear. We were constantly treating, but as soon as she was clear she would catch them again.
She started to develop migraines and had two weeks of heel/soles of feet pain.
In June 2016, after what seemed like a minor cold, Isabella complained of burning sensation in her right thigh, felt unwell and went back to bed. She then complained her legs felt heavy.
Later, when getting up to go to the bathroom, she had intense pain behind both knees. Isabella couldn’t stand or walk.
Back and forth to the Dr’s/hospital and over a week stay in hospital, but no one knew what was wrong. We were told to ignore our daughter and let her walk on her knees and that we didn’t need OT or physio.
Isabella had to get about on her knees at school. We were as you can imagine heartbroken for her.
We were told it was psychological but nothing was found.
We couldn’t let Isabella do nothing, so we did our own physio and eventually used an anti-gravity treadmill. She was making progress with this.
In April 2017, Isabella was issued with a wheelchair for school. Thankfully no more on her knees. We continued doing our own physio.
In June, Isabella finally saw a physio and we were then able to use a walking frame in clinic.
In July, Isabella attended a pain clinic and came out using a walking frame.
We were really hopeful that Isabella was on her way to recovery and started to make the most of the summer holidays.
But something still wasn’t right……
Isabella started to get lower back pain which became worse during August 2017.
In September, she started High School, but the pain was now in her neck. She struggled for the next three weeks and by October she became bed bound with pain.
We took her to a private clinic in the UK and she was re-tested for Lyme Disease and other blood tests were taken. She was equivocal and showed some positive bands, but overall not enough to be positive for Lyme. She showed positive for Epstein Barr Virus and HHV6 viruses.
She started to show some improvements with the viral treatment, but then by mid February, she had a setback and we had another recommended Lyme blood test done. This time via Germany…….This came back showing an ongoing Lyme disease infection.
We thought this was it, the answer and we would be getting our girl back, pain free, well again. Something still wasn’t right. Isabella didn’t seem to be getting better, but started deteriorating. Some of her current symptoms are migraines, jaw pain, constant painful hair/scalp making it extremely difficult to brush hair, constant burning palms of hands, unable to read or type as words/letters look muddled and back to front, unable to feed herself, lift arms and legs independently, whole body pain, unable to walk.
It was time to take our daughter to a specialised clinic in Germany. A recommended clinic who specialise in infectious diseases.
We hired a motorhome and drove to Germany. We came home with hope in our hearts.
Blood tests confirmed our daughter has Chronic Multiple Infectious Diseases Syndrome which include Lyme disease, Bartonella, Babesia, Mycoplasma and a couple of other co-infections too which are transmitted by ticks and other vectors. No wonder she is deteriorating. She desperately needs treatment.
Treatment will be for approximately 6 months, might be longer. This all depends on how the individual responds to treatment with control checks (regular blood tests and ECG’s/scans). Unfortunately at the moment there is no treatment of this kind via our health service.
If there is insufficient response to treatment, then IV treatment will be offered in Germany. For now the best place for our daughter to be treated is at home.
Treatment costs will be approx £1000.00 per month. We would like to start by trying to fundraise for the 6 months and then look at fundraising for the IV treatment at a later date only if needed. IV treatment is approx £1500.00 per week plus travel and hotel costs.
As well as treatment, we would like to fundraise for a stair lift, which if it was possible would then like to donate on to someone else who would benefit from this when we would no longer require one. We don’t know how long we would need one for, but it is becoming increasingly difficult to carry our daughter up and downstairs. We have been trying to manage for the last year. A temporary stair lift would make life a bit easier. Same goes if we raised more than we need, then we would donate onto another family.
What is Lyme Disease?
Lyme Disease is a bacterial infection which affects the whole body which is transmitted by ticks. Not everyone who has the disease develops the classic bulls eye rash. Unfortunately, Lyme Disease can mimic so many other illnesses which can make diagnosis and treatment very difficult. Also, sadly our testing in the UK is not reliable , with patients often getting a negative result, even though they have the disease and symptoms. It is much easier to treat if caught in the early stages. Hopefully, in the future things will change for the UK with John Caudwell (co-founder of Phones 4 u) trying to offer a substantial amount of money to the government to help fund Lyme Disease research.
What are Co-infections?
Co-infections - Ticks and other vectors can also transmit other bacterial infections too, such as Bartonella, Babesia, Mycoplasma and so on. For more information please visit http://lymediseaseuk.com/co-infections/
As soon as its possible, I would like to do some 5k’s to raise awareness by running/walking for our daughter and others affected. Hopefully, I will be able to find a part time job too to help, but at the moment life is pretty much full on.
If anyone is able to hold or partake in an event for Isabella, we would be eternally grateful. Maybe wear green for the day at work or school? Or if you are unable to, if you can share this, that would be awesome too.
We have spent £0000’s already, but as parents you have to keep going and as hard as it is never give up.
Over two years ago, some of our friends suggested setting up a Go Fund Page, but we didn't like asking for help. Doing something like this is completely out of our comfort zone.
Our lives are literally on hold and ultimately all we want is to see Isabella enjoying life again with her friends and family. Sadly she has lost some friends a long the way. Isabella says "Its not nice for a girl to be bedbound, in pain and lonely." However, throughout this she still remains to have an amazing sense of humour.
Please take a look at the attached video which sums up life from June 2016. (Music by Whitesand. Melody of My Dreams)
Thank you for taking the time to read this. Mark, Karen and Isabella. xxx
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