Irish man convinced 'tens of thousands' of people have controversial Lyme disease
Published 13/10/2015 | 12:04
It is emerging as one of the most controversial illnesses of our time and now, with one of the country's most influential businessmen in their corner, thousands of people with Lyme disease are hoping that the beginning of what could be the end to their struggle could finally be in sight.
Self-made billionaire John Caudwell is challenging the NHS on the most contentious issue of poor diagnosis and treatment and has pledged many of his millions to get a research programme set up in the UK.
Caudwell has done much to raise awareness of the complex issues facing sufferers here in the past two weeks since he and his entire family were diagnosed with the disease.
The man behind Phones4U says he, his ex-wife Kathryn McFarlane, (58), daughters Rebekah (35) and Libby (27) and son Rufus (20) have recently been diagnosed with Lyme disease - a bacterial infection that can cross into the nervous system and brain.
Until now it was thought that the disease could be contracted through a tick bite carrying Borrelia burgdorferi bacterium.
But Caudwell (63) strongly believes that the disease is endemic and that hundreds of thousands of people could be suffering undiagnosed.
He says the fact that he and his entire family have it is indicative of the fact that the disease must be both sexually transmitted and passed from mother to child in utero.
Lyme disease can cause chronic fatigue, facial paralysis and, in the worst-case scenario, heart failure. If diagnosed, treatment is available, but there is great controversy about the way tests are carried out on the NHS, with many sufferers having to go abroad to get their diagnosis confirmed so that they can begin treatment.
Caudwell also believes it could be the cause of multiple other illnesses, including ME, Alzheimer's and multiple sclerosis.
His theory goes against current medical thinking, but Caudwell is so convinced that he has pledged millions for research.
He has a Facebook page which has been inundated with people messaging him with what he says are "hundreds of cases of medical neglect and misdiagnosis of Lyme disease".
In this special report we talk to three people in Northern Ireland who have Lyme Disease - all of whom tested negative on the health service and had to pay huge sums for treatment and diagnosis overseas.
Jason McCullough (45) is a company director from Mullusk who has spent his own money seeking diagnosis and treatments overseas for Lyme disease, after what he describes as a disastrous experience in the Northern Ireland health service.
He is 45-years-old and married to Donna (47), a public relations consultant, and they have two children - James (9) and Sarah (11).
His story is all the more startling because of the extremes he has had to go to just to get a diagnosis and treatment.
Although he feels fortunate to have been in a position to pay for treatments privately, it has been a huge drain on his personal finances.
Jason has been experiencing symptoms since 2009, with stomach problems and extreme redness in his eyes - symptoms which are typical of Lyme disease.
Initially, he was diagnosed and treated for paralysis of the stomach and eye inflammation. When his symptoms persisted, he went privately to an ophthalmologist, who suspected Lyme disease.
His GP referred him for testing, but the test proved negative. Like billionaire John Caudwell, he has done his research and is convinced that the NHS tests are unreliable and often return a false negative result - which they did in his case.
Caudwell had his family's tests carried out in Germany, where many people from here have tested positive after receiving negative tests on the health service. Jason paid for tests in a clinic in London, which were sent to California and Germany - both came back positive for Lyme disease.
He says it is all part of the battle which people with Lyme disease face, because of a faulty testing procedure and lack of understanding in the medical world here. Jason has lobbied MPs about the issues of the tests and spent five years educating himself on Lyme disease and its prevalence.
He says: "I have researched it back to front for five years and I am convinced that there could be tens of thousands of people misdiagnosed. "I have now seen four doctors privately who have confirmed I have Lyme disease, yet I can't get any treatment in Northern Ireland. "I have a medical file as thick as a phone book with all other medical conditions ruled out, and with no health issues before, which in itself indicates that something is wrong.
"I actually believe there should be a public inquiry into how the disease is dealt with here, as late stage Lyme disease can be fatal.
"How many people have been left paralysed, blinded or dead because they weren't diagnosed? It is like a cancer, if it is left untreated it will spread. To live with it is a torment.
"I think it is a situation that will eventually blow up as very few people understand the facts - and that includes people in the medical world."
Jason found a fully engorged tick on his bathroom floor in 2005, which led him to eventually suspect Lyme disease four years later.
He has paid to see specialists privately in Dublin and England, as well as Washington DC.
His first consultation with a world specialist in infectious diseases in Washington two years ago has transformed the quality of his life.
He says: "I've been to Washington four times and the treatment they have given me has made an unbelievable difference.
"I am much more active now and can go sea kayaking. I am still getting a lot of nerve pain and I still have insomnia.
"I get days when I have flare-ups and would be in a lot more pain; it is a relapsing, remitting disease.
"It affects your whole family and I am fortunate that I have a wee bit of money, but it has bled me dry having to go privately to get a diagnosis and treatment.
"It is difficult mentally, too, because of the way you are treated here; it is like a trauma and I do worry about the future, especially having two young children.
"I'm still on treatment. I have two weeks on and two weeks off, and I can see flare-ups during the two weeks I am on it.
"It isn't something that is going away, but to know that you have specialists to turn to here would make all the difference."
Suzanne Keenan's battle to be diagnosed and treated for Lyme disease over the past few years is both shocking and shameful. The 33-year-old environmental scientist from Co Down was a newly-wed and a fit netball player at competitive Northern Ireland league level with everything going for her, when out of the blue she was struck by her first symptoms.
She suspected that her symptoms may have been caused by Lyme disease as a result of tick bites in Northern Ireland. She has been stunned at the speed and extent to which they have developed to a chronic stage.
After two years trying to seek help through the health service, she eventually sought diagnosis and treatment outside Northern Ireland at personal cost - all this, with the additional stress of coping with debilitating symptoms that severely impact on the quality of her life.
It is clear talking to her today that the trauma is far from over as she describes the horror of her medical journey in the past three years.
Fighting tears, she says: "I've had to be my own advocate, my own doctor, and educate myself about the disease through books and scientific literature. This has been the reality for every person I've met who has Lyme disease and I've met quite a few.
Thousands across the UK and Ireland have joined support groups. Lyme is a persistent disease and is difficult to treat in the later stages.
"From what I have learned, many people's lives have changed forever, with Lyme disease affecting their jobs and family life, and with significant financial pressures in having to pay for treatment. Some have been too ill to look after their children.
"It is heartbreaking and I count myself lucky that, because of my scientific background, I was able to understand much of the science behind the disease, the problems with testing and the options I needed to pursue.
"People suffering from Lyme disease need to take on so much to get answers in the first instance, and then struggle to get treatment.
"Getting well is the third stage of this journey and overcoming the emotional trauma involved in making it that far is something they aim to address at a much later stage.
"Hope exists for sufferers with appropriate treatment to secure remission and life after Lyme can be normal - as much as normal can then be."
Suzanne suffered increasingly debilitating symptoms such as regular fainting episodes; dizziness; frequent heart palpitations; blood pressure drops; fatigue; arthritic pain; gastrointestinal problems; and neuropathic pain, including electric shock sensations, persistent pins and needles, and searing pain in the legs.
With little or no support from the health service, she sought diagnosis through a private clinic in the UK, with tests for Lyme carried out through specialist labs in America and Germany returning a positive result.
"I was suffering symptoms for two years before I had a diagnosis and the stress was mounting" she says.
"I was referred to a health service clinic based on my private diagnosis and waited three months for an appointment.
"In January of this year, I attended the appointment, presented my Lyme diagnosis and implored the doctor to help me - I desperately wanted to halt the disease.
"I explained that I had been fit and healthy all my life and that I knew I had Lyme disease, due to tick exposure and clinical symptoms, which had reached an advanced stage with predominant neurological involvement.
"I requested IV treatment for the best chance of a good recovery. There was some sympathy, but resolve that I most likely did not have Lyme disease. I was prescribed a low dose of oral antibiotics as a precautionary measure and told that my case would be reviewed in a few months.
"I was distraught and felt I had achieved nothing."
At this point, believing that IV treatment was the best approach for neurological involvement of the disease, Suzanne paid for five weeks of treatment in England to get the neurological symptoms under control.
She then had to pay for six months of intramuscular injections at a private hospital in Belfast.
Her health started to improve with treatment, but the infection persists and she now requires more aggressive treatment, which is not readily available in the UK.
This has driven Suzanne to seek specialist help in the United States at a clinic with experience in complicated Lyme cases.
After much soul-searching, Suzanne decided to launch an online appeal amongst family and friends, to help fund her treatment in the USA.
"I live each day with chronic pain and gastrointestinal problems and experience difficulty sleeping.
"I was never a pill person, but I have had to accept that I need to take a concoction of drugs and manage a very restricted diet to give myself any fighting chance of recovery."
Suzanne would love nothing more than to get to back to health and fitness, and start a family. She accepts, however, that without the appropriate treatment, this may not be possible.
If you would like to support Suzanne on this difficult journey, see: gofundme.com/suzannelymejourney
‘To actually get a proper diagnosis was fortunate’
Olive Wilson (79), a retired theatre nurse from Boardmills, developed Lyme disease 10 years ago after being bitten by a tick while visiting her son in New Zealand.
Olive, who is married to Ben, had enjoyed an active life with good health, but suddenly found herself bedridden and in terrible pain.
On her return from New Zealand she collapsed and was taken to the hospital where she spent four weeks.
She told doctors she had been bitten and even though she saw a number of specialists during her time in the hospital, she was never diagnosed.
For the next four years she was virtually bedridden with terrible pain in her face and feet.
A friend who had been a nursing colleague was so concerned about her that she urged her to attend a conference in London in which world specialists in disease would be gathered.
The conference offered the opportunity for bloods to be tested in America and Germany. Olive had the tests done — and both came back positive for Lyme disease.
“I was very, very lucky because I went to a specialist in London who is now retired and he was able to prescribe me a course of treatment which he sent to my GP,” says Olive.
“I had been bedridden before that and wasn’t fit to do anything and was in a lot of pain.
“I was lucky because I had a great GP who was Lyme literate and who was aware of the treatment I needed. He had all the information from the specialist and that was a big bonus for me which I really appreciated.”
The treatment, which includes antibiotics, greatly improved Olive’s symptoms and a couple of years later when a similar conference was being held in Dublin, she again attended and had the chance to have her bloods tested for a second time in America and Germany.
These tests also confirmed that there were still traces of the Borrelia disease in her body.
Olive has spent a considerable amount of money trying to secure a diagnosis and treatment.
She saw four consultants privately in Northern Ireland and none of them diagnosed Lyme disease.
She feels very fortunate that she was able to go to London and dreads to think what the outcome would have been if she had not been treated there.
“It has taken me some time to get to the state I am in now. I’m not perfect and I can have flare ups, but when I do I go back on my antibiotics and that controls it,” she says.
“If I hadn’t been fortunate enough to be able to see those people in London and get a proper diagnosis, I don’t know where I would be now.
“I’ve always been an active person and was never sick in my life and being bedridden was very difficult.
“With Lyme disease you need to be given adequate treatment to have a chance of fighting it.
“I hope in the future patients will be diagnosed quickly and get the help they need.”
Vital signs that point to bacterial infection
Lyme disease is caused by a bacterial infection carried by a tick. It has rapidly become one of the most common diseases in Europe and the tick is second to the mosquito for carrying diseases.
If diagnosed early, treatment with antibiotics is generally successful (30 days of high dose of doxycycline antibiotic immediately - at least 200mg twice daily but GPs could recommend higher).
There are three clinical stages of Lyme disease which are set out below:
Stage 1 - 'bulls-eye' rash in about 50% of cases, flu-like illness such as lymph node swelling, neck stiffness, general fatigue and headaches. Patients may miss stage one altogether and develop the disease months or even years after the initial bite.
Stage 2 - migratory joint pain, head and neck pain, or muscle pain. Bell's palsy (facial paralysis) and severe fatigue. Cardiac problems, bladder irritation - you can have some or all of these symptoms.
Stage 3 - neurological changes including tingling, numbness and tremors, nerve pain, poor control, brain fog, sleep disturbance, with complications including optic neuritis, depression, panic attacks, muscle weakness, tissue damage, meningitis and chronic arthritis.