Guy’s story

Guy was born in 2003, healthy and strong.  One year later I discovered a tick attached to his skin.  I, like the doctors we consulted, had no idea how this tiny spider-like creature could blind my son and cause so much suffering.

On discovering the tick attached to the back of my baby son’s neck, I telephoned my local doctors surgery for advice. The initial guidance offered was conflicting and lacked reassurance. Still concerned, I took my baby to see our GP.  He consulted with a microbiologist who told him we didn’t live in an area considered high risk for infected ticks. Rather than traumatise Guy with it’s removal, our GP left the tick attached and told us antibiotics were unnecessary as there was no current sign of infection.  What we then took as reassuring advice turned out to have devastating consequences. The tick was already transmitting the infection Lyme Disease, along with its co-infections Babesia and Bartonella, which later proved responsible for Guy’s Uveitis.

We lived, and continue to live, in a village in Kent.  We have no pets, which can sometimes be responsible for bringing ticks into homes.  We can only assume Guy was exposed to ticks from simply being outside or from the homes of others with pets.  Amongst the more informed, it is accepted that we have a tick problem throughout the British Isles. The majority of doctors, microbiologists and the general public remain however, unaware of the danger on our doorsteps.

Whilst I always felt uneasy about the tick bite, Guy didn’t display any obvious health concerns in the months following it. As time went on he did seem to develop into a sickly child, always suffering from one childhood complaint or another. This baffled us as we had always led healthy lifestyles. We later learned his immune system had been weakened by the disease.

A year or so later, following the birth of his sister, Guy had become a challenging and highly strung toddler, capable of some inexplicably impulsive behaviours. Whilst I would share my concerns, they were easily dismissed by others – after all there was a new baby in the house.  It took another three years before he became obviously ill.

After an impressive start at school, by May 2008, Guy’s class teacher asked to speak with me.  She had observed our previously very happy, enthusiastic, energetic and confident little boy had changed. (I knew he had changed too.  Concerned, I found myself saying more and more, “That’s not my boy”). Guy’s teacher asked if he was getting enough sleep as he was always exceptionally tired, particularly in the afternoons (He was getting tons of sleep, far more than most his age). From previously being the most eager to please boy, always first with his hand in the air to answer her questions, he now seemed to be struggling. She noticed his frequent sweats and new anxieties and how his uniform now made him uncomfortable. I shared with her that I was very worried about him myself and felt he was suffering and in many ways.  But, apart from common childhood complaints like ear and sinus infections, doctors could find little wrong with him.

Guy was actually very sick.  Left undiagnosed and untreated his Lyme infections had disseminated throughout his body, including his brain, damaging in particular his central nervous system. We didn’t realise it at the time but it was also damaging his eye sight.

Lyme Disease is a very complex condition that is difficult to diagnose, most doctors are unfamiliar with the countless and varied ways it can affect a patient.  Caught early and treated adequately it can be successfully treated.  But for many, like Guy, that initial window of opportunity is missed. Left untreated it is capable of causing extreme fatigue, fevers, intense pain, headaches, sleep and digestive problems, cognitive impairment, cardiac and neurological dysfunction, nerve and personality disturbances, paralysis and amongst many other symptoms, blindness.  It is a stealthy insidious condition, capable of affecting both body and mind, which is particularly cruel in children. Too young to articulate how they feel, or infected too long to know what “normal” is, children can only express themselves through their behaviours. In some children an apparent autistic-like regression can occur, leaving them intolerant to stress, changes to routine, unable to cope with loud noises, touch, busy locations or social situations. Children’s symptoms may include an ADHD-like syndrome, learning difficulties, phobias and defiant, aggressive and obsessive behaviours.  Misdiagnosis for children and adults happens too often.  M.E., Chronic Fatigue Syndrome, M.S., Arthritis, Anxiety, Depression, Bipolar, personality and behaviour disorders being inappropriately blamed.

Guy’s symptoms would come and go.  He was hyper active some days, profoundly fatigued on others.  Leaving the house became increasingly difficult as he became sensitive to loud noise and bright lights.  Even my simple touch could cause him pain. Some days he had a fever.  Every night he had sweats so severe his hair and bedclothes were soaked.  Our lucky diagnosis break came (if you could call it that) when we discovered he was now blinded in one eye.  I had noticed in a flash photograph Guy only had one red eye reaction, this led to the diagnosis of Uveitis. Doctors took that seriously.  Ophthalmologists and doctors all agreed Guy had Uveitis, so topical steroids were prescribed, but they were reluctant to accept Lyme Disease could be the cause – preferring to try and blame juvenile arthritis. But Guy didn’t have joint pain!  From the research I did Lyme Disease proved capable of causing all his symptoms and therefore was the far more likely underlying cause.  Proving it was our next huge battle.

There are no 100% reliable blood tests for excluding a case of Lyme Disease.  In fact, some doctors believe the testing methods used currently to detect Lyme Disease antibodies are less than 50% reliable! Guy’s first stage antibody screening test results came back negative….

Two sets of guidelines exist for diagnosing and treating Lyme Disease.  They differ greatly. In the UK one set of guidelines is more heavily promoted to doctors than the other. These guidelines recommend positive serology for diagnosis in late stages of Lyme Disease infection.  This seems unscientific when doctors are told to use an antibody blood test that is not 100% reliable.  Furthermore, you need a healthy immune system to produce a measurable antibody response – something the sickest patients don’t have!

We took control of the situation and funded a much more specific blood test to be carried out at a specialist laboratory that thankfully detected Lyme Disease DNA in Guy’s blood.  We had proof!  Guy had Lyme Disease, without doubt, and with co-infections also.

Our Paediatrician freely admitted he knew little about Lyme Disease. We then discovered there are no specialist Lyme Disease Paediatricians in the UK.  We clearly needed a doctor experienced in successfully treating children with long standing Lyme Disease infections.  We evidently weren’t going to find any here, so, after more research, we decided to head to the States.

Fortunately we didn’t have to travel so far to seek an appropriately experienced and effective ophthalmologist for treating Guy’s Uveitis. With a positive response to steroid eye drops for his eye inflammation and nightly dilating drops to detach the scar tissue preventing Guy’s iris from constricting and dilating, Guy’s vision was quickly restored.

Once on appropriate Lyme antibiotic treatment, recommended by his American Specialist, recovery took Guy down a long and rocky road before we saw obvious signs of improvement.  At one point, after a relapse of symptoms also effecting his eye, a Hickman line was fitted through his chest so he could receive 6 weeks of daily intravenous antibiotics.  Fortunately, Guy tolerated all his treatments incredibly well and he has benefitted immensely from the long term antibiotic treatment targeted to deal with all the infections transmitted by the tick bite.

Recorded cases of Lyme Disease have seen a fivefold increase in Britain in the past decade.  Untold numbers go undiagnosed or are misdiagnosed.  Given the lengths we had to go to in order to achieve a diagnosis and treatment for Guy, it begs the question just how many children and adults are being denied appropriate treatment as a result?

Lyme and it’s co-infections can be the underlying cause of so many conditions, including Uveitis. Guy’s doctors have found when his Lyme Disease treatment is stopped, some of his symptoms return and so does his eye inflammation.  To manage this threat and keep him in good health he remains, for the time being, on a combination of antibiotics and immune moderating methotrexate.  Guy’s ophthalmologist has restored his sight to “perfect” and considers Guy a success story that needs to be shared.

We do too!  We have our boy back!  He is a gorgeous, gorgeous boy, excelling amongst his peers at numerous sports and academic subjects, giving us so many reasons to be immensely proud of him.  We are all loving catching up on life with him.

We have a lot to be grateful for.  Particularly the expertise of the few open-minded doctors prepared to digest all the available evidence on the successful treatment of Uveitis and Lyme Disease.

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