A 19 year old student from Hampshire who has suffered from a crippling and painful illness for more than 5 years has finally discovered the source of her illness, which went undiagnosed by numerous NHS doctors, despite what are now very obvious symptoms.
Annabel Christian, 20, had to give up her education at the London School of Fashion, turn down a modelling contract and quit two retail fashion jobs due to crippling fatigue and pain.
She has now been told she is suffering from Late Stage Lyme disease, a bacterial infection which she picked up from a tick bite while at a boarding school in the New Forest, Hampshire in 2009. The numerous deer that surrounded her school carry the ticks that bit her.
While at school, following a sports lesson outside, she began feeling unwell and soon noticed a red round rash on her arm that resembled a Bull’s eye target similar to ring worm. Her GP admitted he had no idea what caused her arm to swell up to twice the normal size.
She then began suffering from over 56 symptoms, and after 1 year was diagnosed with Chronic Fatigue Syndrome (CFS), a diagnosis often used when doctors are unable to find the true cause of an illness.
Her NHS GP lacked the training required to diagnose Lyme Disease. He relied upon tests used by the NHS lab at Porton Down, Wiltshire, which he was not aware was less that 50% accurate. The GP’s lack of training prevented her from getting an early diagnosis which is crucial in this condition because patients only have a chance of full recovery if treated within the first six months. Even with early treatment, it is estimated that 20% of patients do not make a full recovery and progress to the chronic form known as Late Stage Lyme Disease.
The Deer Ticks that spread Lyme Disease.
Annabel, from Fordingbridge, Hampshire, said: “I have been chronically ill for over 5 years. I had to give up college, a modelling career and can no longer work in fashion as I’m too weak and sick, I sleep all day and night and can hardly walk up and down the stairs at home.
“I’m one of the lucky ones as my father refused to believe the NHS diagnosis of CFS/ME. On the advice of a friend in Malta, he arranged to have my blood samples sent to a specialist Lab in Germany for testing. After my blood test results came back positive, we visited a Professor in Brussels who confirmed that I have Lyme Disease.
“I had over 20 phials of blood taken and an extensive array of tests in Germany and Brussels to diagnose this illness, which the NHS doctors advised by PHE lab at Porton Down say we do not have as their less accurate says otherwise.
“I have fevers all the time, constant pain, neurological problems, cognitive issues, co-ordination problems, spasms, tremors, Facial Palsy (which causes my face to freeze) and many other nasty debilitating symptoms, too many to list.
“I have to wear a mouth brace as the bacteria has damaged by Jaw causing a painful misalignment condition known as TMJ, which makes it very difficult to eat.
“In December 2013 I lost consciousness at a friend’s party in Ringwood and ended up in casualty on New Year’s Eve. Luckily my friend’s mother is a GP and she ended up spending the night in hospital looking after me, ordering one test after another, trying to establish why I was so ill (Once again, but no surprise, none of their tests showed what was wrong with me).
“My friends have been very supportive considering I never have the energy to go out. I am determined to get rid of this disease and the battle to regain my health starts now – I won’t give up hope.”
New Forest – A High risk location for Lyme Disease
In January 2014, Annabel read Dr Richard Horowitz’s book, “Why Can’t I Get Better?” which contained a questionnaire score sheet to help diagnose tick born infections. She was surprised to learn that she scored 120 points when any score above 46 indicates a high risk of Lyme Disease. This provided a strong “Differential Diagnosis” and confirmation that the Bull’s eye rash that came up immediately should have be taken as clinical proof of Lyme disease removing the the need for a test.
Armed with the proof she needed, Annabel had a consultation with an Emeritus Professor based in Brussels who confirmed by looking at her symptoms and the results of a sensitive €170 Euro test (not available in the UK) that she had Late State Lyme disease and Auto-immune Thyroiditis.
Treatment Abroad – Why do the NHS refuse to Treat Patients
Annabel’s latest NHS GP, Dr Toby Wallis from Fordingbridge in Hampshire, refused to treat her or refer her despite the diagnosis of an Emeritus Professor, two positive blood tests from Germany and a clinical history (rash) that confirms the disease. In early 2014 he tried to obtain a referral to a Specialist NHS Lyme Clinic in Winchester, but this was shut down due to lack of funding, so she never received an appointment let alone treatment. Her GP infomed her that he was unable to treat Lyme Disease and that a referral to a specialist would be required. She has been waiting for almost a year to see a specialist on the NHS. After complaining to his MP Patrick Swayne, who wrote to the Secretary of State for health on his behalf, Annabel finally thought she would receive an appointment with the Southampton Hospital infectious disease team. After a week, her GP came back saying that they had refused to treat her as they aware her father had complained about the NHS to their MP, whose wife Moira is being treated privately for Lyme Disease (They too live in the New Forest so are exposed to Lyme constantly).
Foreign Treatment – The Only Option ?
Annabel’s father realised that it was impossible to get treatment on the NHS and decided to take her and her brother (Who also has Lyme disease) to Brussels to start a 12 week treatment with Intravenous Antibiotics.
Hundreds of patients are forced to spend their life-time savings on foreign tests and treatments as the NHS is unwilling to diagnose or treat the disease. Many more, who cannot afford the expensive private tests and treatment are suffering and many will eventually die from complications caused by the illness, although it’s unlikely to be written on their death certificate (as tests will invariably be negative).
Neither Insurance companies or the NHS want to pay for the expensive treatments required to treat the disease. Even people a positive NHS test result are not being treated appropriately.
The NHS are refusing to treat them based upon a negative NHS which is known to use an outdated low accuracy method. As this treatment needs prior approval in the UK, the NHS will not agree to pay for foreign treatment.
Annabel’s father, Mark, 51, who has been researching Lyme Disease for over a year to help his daughter fight the disease says “In the US its well-known that 30-50% of (serology based) Lyme disease tests are “False Negatives”.
“In the majority of cases, anyone who has been ill for over a year will have no immune response to the Lyme disease bacteria in their body, so the insensitive indirect serology test used by the NHS will just come back negative. This test only looks for an immune response and does not directly detect the Lyme disease bacteria known as Borrelia. There are more accurate tests available,but it’s almost impossible to obtain them in the UK on the NHS. The manufacturer of the NHS test kit says negative tests are known to be unreliable and should never be used to rule out Lyme Disease. This information is not communicated to UK patients who are (as we were) blissfully ignorant of this fact. In the US there is a law that forces doctors to disclose this fact. The same should be introduced in the UK.
“We learned from the experts that the diagnosis should always be based upon symptoms and clinical history.
High Cost of treating the disease
“The leading Lyme Disease Doctors recommend treating Late Stage Lyme Disease with long-term IV antibiotics which is almost impossible to get in the UK. The NHS prevents thousands of patients receiving treatment by relying upon inaccurate testing methods to justify their reluctance to treat patients for Late Stage (Chronic) Lyme Disease. They go out of their way to prevent doctors issuing the antibiotics required by Patients to get better. Doctors soon find out that they will lose their medical license if they follow the guidance provided on the NHS website. There are only two private clinics in the UK who can treat for Lyme disease and both of these are constantly harassed by the GMC.
“We have spent more than £100,000 on tests and treatments, at least £20,000 of this could have been avoided had the NHS been able to diagnose the illness. Annable and her brother now have Eight positive test results for Lyme from Four separate Labs, in Germany, Brussels and one reference Lab in the US.
Porton Down PHE – They need to be replaced and FAST
“Our GP was informed by a “specialist” at Porton Down to ignore all private tests without providing a valid justification. This unscientific interference prevented her GP from being able to treat her.
“Words fail me how these secretive shadowy unnamed individuals are prepared to sentence people to a slow death without even meeting them. We need to replace Porton Down as the definitive source of knowledge on this disease in the UK.
“After a few years, it’s known that the immune system attacks the Thyroid gland, confusing it with Lyme Disease bacteria. Due to the lack of treatment for Lyme Disease Annabel now has an auto-immune disease.
Has a growing Epidemic been deliberately “covered up” ?
Annabels father stated “Yes I have no doubt in my mind although it not clear why this is – Its either financial, government incompetence or a military secret that’s not in the national interest to admit as the truth could cause panic, riots and government instability. The NHS has a growing public health crisis on their hands which is far more serious than Ebola.
Recall of Tests – Inform the Public
In the same way as car manufacturers are forced to recall unsafe vehicles, the NHS has a duty of care to inform everyone who has had a Lyme disease test in the last 20 years that the results are not accurate. If I was suffering from an unexplained chronic illness, I would arrange for a test in Germany until such time as the NHS has obtained a more accurate testing facility. In the mean time, the NHS should accept the results from US & European testing labs.
Possibility of Bribery and Corruption at Porton Down ?
Annabel’s father discovered after talking to a Senior Official at Porton Down (acting as a Medical Product supplier) that the PHE have an Intellectual Property sharing commercial agreement with their current Test Kit supplier and were unable to use other tests kits (that might be more reliable) as a result of this agreement. This is a clear conflict of interest that must break every commercial procurement rule book, so needs to be looked into further as it may indicate bribery of Government officials my a foreign medical products company.
“The NHS lab at Porton Down has more advanced direct testing techniques available (PCR & Culture) however they are not sensitive so can easily give false negatives. Most GP’s are not aware of the shortcomings of the existing 2-Tier test and why they should insist on the more accurate testing, which is not available in the UK. The Porton Down Lab has never (to my knowledge) published an independent audit of their test results. They are cloaked in secrecy and refuse to talk to patients, probably a hang-over from their former existence as the UK Biological Weapons research establishment, a top secret UK Government organisation that developed biological weapons during the cold war and tested live bacteria on military personnel and the general population.
“I hope that this incompetent organisation that has failed to safeguard the nations health will soon be replaced with an independent modern facility that patients and doctors can rely upon. Porton Down has been thoroughly discredited by their refusal to acquire modern testing methods and a lack of independent audits. They should be at the forefront of developments, yet a 16 year old with a 200x £150 microscope can easily detect Lyme Disease.
“At least the US CDC (who monitor outbreaks of disease in America) admitted last year that they had underestimated the true scale of Lyme Disease in the US. In 2014, they upped the number of reported cases from 30,000 to 300,000 a year. Many scientists have stated even this figure vastly understates the true incidence of this disease. In recent tests on Alzheimer’s patients, over 90% were found to have Lyme disease bacteria Borrelia in brain lesions. In Germany, a recent study found over 20% of 70-80 year old’s tested positive for Lyme disease, although not all had symptoms. Even the Chinese government have admitted that 3% of their population are infected with Lyme disease. It’s about time the NHS woke up to this alarming and growing epidemic and started treating this disease, which has over 10 times more patients yet attracts less than 1% of the funding of HIV/AIDS. Scientists have shown that Lyme Disease is an STD and that the blood bank in the UK is not routinely screening for Lyme Disease bacteria, so there are many more ways of contracting this disease than from Tick Bites.
“I have no doubt that in the fullness of time, the Porton Down Lab and their shadowy Military commanders will be blamed for the needless deaths of hundreds if not thousands of UK patients in the the last 10-20 years.
Patient Led Parliamentary Meeting – 19th Jan 2015
The lack of accurate testing, diagnosis and treatment in the UK is why over 120 patients and their families petitioned their MP’s and presented their case for a change in the Houses of Parliament on the 19th January 2015. The meeting , which was chaired by Lady Mar (The speaker of the house of Lords), high-lighted the difficulty many thousands of patients have in obtaining accurate testing and treatment in the UK.
The former MP Simon Hughes (Lib Dem) and Countess of Mar have been championing the cause of thousands of people suffering from Lyme Disease. Despite receiving a Petition with over 1000 names, neither the Health Minister Jeremy Hunt or his deputy were able to attend. The patients called for increased public awareness of this growing health crisis which has been known about for years in Sweden, Germany and many other countries. After the meeting, the NHS PHE issued a press release to the BBC stating they would review the testing methods used within the NHS.
Further Information for Editors.
- NHS / PHE claim that only 1.7 people per 100,000 have the disease in the UK. In Germany and other European countries the estimates are far higher, casting doubt over the accuracy of the UK figures. [Details to follow]
- A US firm was recently awarded a $3m USD contract to develop a rapid and accurate Lyme disease test.
- A UK based “crowd funded” start-up company announced they are developing a microscope that allows an IPhone to detect Lyme disease, with a microscope attachment. This is raising hopes that the NHS may soon have more accurate rapid testing tool at their disposal.