Lyme Disease in the news thanks to Total Essex covering a story on Ruth Black. here
As many local newspapers do not keep these stories on line indefinitely I will copy and post below.
HUTTON: Mum Ruth Black left virtually bed bound as NHS 'fails to identify illness'
A WOMAN has accused the NHS of ruining her life, after medics failed to identify a debilitating illness which left her virtually bed-bound.
Mum-of-two Ruth Black, 34, spent eight months battling the symptoms of Lyme disease, but only diagnosed the condition after research on the internet.
She is now receiving treatment for the disease but fears it could take her up to a decade to recover.
"My experience with the NHS was horrific," Ruth said.
"They have cost me my health and left me with a chronic condition which could have been easily treated if it had been diagnosed earlier.
"I was a very lively, healthy woman before I became ill.
"It has completely devastated my life."
Ruth, who lives in Hutton with husband Cliff and sons Jamie , 6, and Lewis, who is 20 months old, fell ill in March 2010.
This prompted a series of visits to her GP over the next few months and trips to hospitals in Romford and Basildon.
Ruth said: "My first symptoms were just general tiredness.
"I felt exhausted and disorientated and was coming out in fevers. Then I started to get bad back pain, but I didn't think about it as I thought it was due to my carrying Lewis around."
However, as the weeks wore on, her symptoms became worse.
"I started itching like crazy and I had severe pain in my muscles.
"My skin was burning and it felt like I had been doused in petrol."
After a range of tests, including a brain scan and blood tests, Ruth gave up on the NHS and decided to visit a private hospital.
But she still could not get a diagnosis and so decided to turn to the internet for help.
"The more I researched, the more my illness seemed to fit a condition called Lyme disease," Ruth said. "The bizarre thing was that I had already been tested for Lyme disease via the NHS and privately."
During her research, she found the tests used by the NHS to diagnose Lyme disease are "very disputed".
She also eventually found a private clinic in Hertfordshire which diagnosed her with the condition in November last year.
However, because of the time it took to identify the illness, it is now chronic, meaning Ruth could take a long time to recover.
"It is a very, very slow process," she said. "I know people that have been on treatment for ten years and they are still not right."
Ruth is now taking antibiotics but, in another blow, is not eligible to receive them free on the NHS.
As a result, she now has to spend around £350 a month on drugs and other supplements.
She said: "The fact I am now left paying for all the treatment is a very bitter pill to swallow."
Cliff, 51, added: "It is difficult enough for people to battle against this horrendous illness without having to battle the establishment as well.
"This has impacted on our family, and I cannot understand how people are subjected to the lack of care and understanding that is required from our so-called health professionals."
Dr Kannan Athreya, 44, has been a GP at The Surgery in Mount Avenue, Shenfield, since 1996.
He told the Gazette that the internet could be a "useful tool" for helping people diagnose their illness, but stressed that it could also have its pitfalls.
"It is a very useful tool provided you know how to use it," he said.
A spokesman for Queen's Hospital , in Romford, said: "We have not had any contact from Mrs Black regarding the treatment she received.
"Lyme disease can be very difficult to diagnose, with tests often only showing an infection once the disease is advanced.
"If Mrs Black chooses to contact us we will, of course, look into her complaint."
A spokesman for Basildon Hospital said: "All patients brought to A&E as emergencies are given thorough investigation and treatment according to the symptoms they present.
"Sometimes it is appropriate for A&E to treat patients for immediate symptoms and then discharge back to their GP."
Meanwhile, NHS South West Essex, which runs GP services in Brentwood, said: "We cannot comment on this case without a review of the patient's case notes."
However perhaps even more telling are the comments left on this article:-
I had no idea this was such a big problem but the messages on this website would seem to suggest so. Very interesting and I'm glad it has been brought to my attention.
commented on 11-Feb-2011 01:01
Lyme (Borrelia) infection is usually caught from infected ticks, which are found everywhere, as they are carried by birds and all domestic animals and wildlife. Hosts for ticks can be any small animal, like hedgehogs, so allotments often comprise hot-spots for Lyme.
Even if you remove the tick before it has time to transmit Lyme, you can still get serious co-infections from the tick, such as Bartonella ("cat-scratch fever"). Babesia is a malaria-like infection. There¿s a list of other infections including Ehrlichia, Mycoplasma and others which may not yet be recognised in the UK like Tick-Borne Encephalitis.
Lyme Disease can be transmitted by other biting insects like stable-flies, fleas, lice, mites - and can be transmitted from a mother to her offspring, either via the placenta or through the milk. Or like its cousin syphilis, by sexual contact. It appears to be a major cause of autism in children and also Alzheimer's.
The scary thing about Lyme (Borrelia) infection is its effects on the body. It can mimic virtually every other disease. The bacterium itself is the most sophisticated known to man. Being a corkscrew-shape spirochaete it resembles its relatives like Leptospira (Weil's Disease) caught from rat's urine, and Syphilis, but it has many more genes and plasmids to generate its outer surface proteins (OSP's) so it can change its coat to avoid detection by the body's immune system. Which is a reason why we get negative blood tests, as our current blood tests (serology) are very primitive and only pick up antibodies generated by our immune systems in response to OSP's presented to it.
Simple bacteria often move around by being driven by a rotating filament attached to one end, that acts just like an outboard motor, spins and moves the bacterium. Borrelia has a bundle of flagellae wrapped around its cellular contents, which act like an "inboard motor" and drive the bacterium in a corkscrew manner which enables it to penetrate every cell in the body.
Classically it penetrates the cartilage of joints and causes an arthritis that appears to move from joint to joint, so-called "migratory arthritis", and which occurs even in young children. In fact it was first characterised because of an outbreak of arthritis in children. Its main effect is to penetrate nerves and disrupt them, technically "neuro-borreliosis". Facial nerves are attacked and you get classic Bell's Palsy with droopy eyelids and jaw. This can spread to the intestine and cause signs of constipation and colic, known as Bell's Palsy of the Gut. It can affect nerves feeding glands so there are many effects like diabetes & thyroid problems. Many people recover from allergic situations when treated for Lyme.
If a suspected Lyme infection is treated within the first few (4 to 6) weeks of the actual infection, with reasonably high doses of even simple penicillin, it may be eliminated. But many people don't know whether they've been bitten, let alone when, as they may not have the classic tick-bite "bull's eye" rash, said to be unique to Lyme.
Once the bacteria have penetrated deep into the tissues - they prefer the low oxygen levels found in cartilage, tendon, etc - they can be difficult to reach with antibiotics. High doses and long courses are absolutely essential. Rotating antibiotics can help.
The bacterium can also hide away in the form of cysts, coccal and CWD (mycoplasmal) forms, and in biofilms where they are neither recognised by the immune system nor touchable by antibiotics - just the same as Syphilis and Tuberculosis. But once established, you may have the infection for life, and you can only control, perhaps never cure it, even with repeated courses of antibiotics.
One myth is that all antibiotics have potentially serious side effects, such as you may develop an allergy to penicillin. None of the side effects are unconquerable and are often worth the risk considering the life destroying effects of Lyme Disease.
It is normal to prescribe long-term antibiotics for certain well-known diseases like TB, Brucellosis, Syphilis and even acne. Lyme is at least as important as these.
The problem of resistant bacteria, like MRSA in hospitals, has everything to do with the hospital environment and hygiene and very little to do with the use of antibiotics.
In fact, it is "under-treatment" of infections by doctors that has allowed resistant organisms to survive. If they used higher doses and longer courses in the first place, the organisms would not have had a chance to develop resistance.
Drug resistance in Lyme doesn't seem to be a problem when antibiotics are rotated properly - it's co-infections like Babesia that cause the problems. Rarely does Borrelia come on its own. Ticks often transmit other bugs, called "co-infections". Babesia is a malaria-like parasite that only responds to anti-malarials.
Laurence Swift (retired vet), Herne Bay, Kent, ENGLAND
commented on 10-Feb-2011 19:40
For anyone struck down with the many and varied symptoms of this debilitating disease it can be a very frightening experience excerbated by the ignorance about diagnosis and required treatment which varies considerably across the country. Fortunately when I was struck down,bedridden and finally hospitalised in 2008 I was in the right area to get a confirmed diagnosis and treatment to enable my to regain nearly but not all my pre illness health.
This illness should not be a postcode lottery for if diagnosed and treated in the early stages it prevents the extreme and debilitaing symptoms which for some can be permanent.
It needs to be recognised across the board no matter which part of the uk you live in.
My own local authority have a web page dedicated to tick awareness, Lyme disease and associated issues and yet my county council appear ignorant because on a secret shopper phone call to them I hit a brick wall- I ask how can this be.
Every organisation, health authority, outdoor workers employer, countryside user, park control authorities, etc etc etc needs to be clued up on lyme disease ,the risks, the precautions and what to do if you think you may have had a tick bite regardless of whether the tick is carrying the borrellia bacteria. ( even IF you see a tick attached, many are seed size,it won't tell you it carries the bacteria!)
Simple precautions can help to eliminate the risk from contracting lyme disease but unfortunately it is often long after a bite, which a victim may not even been aware of, before symptoms start and they may not always be associated with lyme and a tick bite.
Finally to the gentleman who in a earlier comment wrote 'oh shut up' I sincerely hope you/family member/friend never get infected by lyme because I can assure you it would definately make you change your attitude.
Sue Mitchell, West Sussex
commented on 10-Feb-2011 19:02
Thank you to Ruth and the Essex Chronicle. Ruth's story is very similar to my own. I had decades of illness before I finally got the right diagnosis.
Years ago I started to get episodes of flu-like illnesses and a sort of brain fog and fatigue that rest or sleep wouldn't shift. I'd recover from each one and feel fine, but a few weeks later I'd be ill again. Doctors told me I'd probably picked up a virus, or I had post-viral syndrome, or it was caused by stress, or I was working too hard and needed a holiday. As the years went by my health very gradually deteriorated further. I saw numerous GPs and I was referred to different specialists in the NHS, including an infectious diseases specialist who told me I was suffering from anxiety and I wasn't ill at all.
Each time I was prescribed a short course of antibiotics I felt much better, but when I finished it I'd become ill again.
At one point I was admitted to hospital and given a blood transfusion when my blood count suddenly crashed for apparently no reason, but no diagnosis was offered.
I carried on trying to lead as normal a life as possible, but eventually I became so ill I could barely function and I was diagnosed by the NHS with CFS. By then I was also having repeated migraine and vomiting attacks, dreadful cramps in my legs and feet, I'd developed loud tinnitus, I seemed to have become dyslexic and my balance was poor. I was very weak, but out of desperation I managed to do a little research on the internet and kept coming up with Lyme Disease as a match for my symptoms.
I found the Lyme Disease Action, BADA-UK and Eurolyme websites and they have been a great source of information and support. I discovered a specialist private clinic that treats Lyme Disease and it's through their expertise that I discovered I have 3 strains of Lyme Disease and 2 other infections ticks often carry.
My health is finally improving for the first time in years thanks to their treatment, but it will take a long time for me to regain anything approaching normal health after so many decades of untreated neurological infections.
My life has been completely derailed by this awful illness. I'm paying for my treatment myself, having sold my home, as the NHS has declined to fund my treatment costs. It is indeed a bitter pill to swallow.
commented on 10-Feb-2011 11:25
do shut up George
Anon, Maldon commented on 10-Feb-2011 08:20
I too have Lyme disease, confirmed by blood tests from laboratories in the USA and Germany. I cannot access care for my condition on the NHS and like Ruth have to pay privately for my treatment and antibiotics.I have now been in treatment for nearly 2 years and still have days when I am overwhelmed by fatigue and have to stay in bed. However, I am also now having days when I can function well.
The neglect of patients with Lyme disease is disgraceful.
I worked for the NHS for 14 years and was proud to do so. However, I now feel completely let down by the organisation I once thought so highly of.
The NHS needs to educate their staff about Lyme disease and get up to speed with accurate diagnosis and treatment.
The numbers of infected patients are increasing year on year.
commented on 09-Feb-2011 20:36
Another one, thank you very much to Ruth and Essex Chronicle for publishing this story.
One day, just one day, someone will eventually join the dots and realise this is a major problem.
How many people are trying to 'manage' their symptoms under the ME, CFS, Fibromyalgia, etc. labels when really they should be continuing to look for the cause and treating that?
If there are any doctors reading this, I would be very grateful if you would take some time to look up the many reams of research from very well-respected experts out there and stop assuming we don't have Lyme in the UK. Your patients will thank you for it.
So, stop hiding away from it just because it's political, let's get it out there!
commented on 09-Feb-2011 15:53
Is there no Dr House in the house ?
commented on 09-Feb-2011 15:17
Ruth's story is like so many more here in the UK and sadly that also includes children who after all are the most vulnerable.
There is not one Paediatrician in the UK who has bothered to throughly understand this disease.
Our doctors are advised by the HPA who say that the IDSA guidelines are authoritive and yet there is a considerable body of evidence on this emerging disease that contradicts those guidelines. http://www.ilads.org/lyme_disease/lyme_slides.html
Ben Luft's research sequenced the Genome and he found that some strains of Borrelia are simple and easy to cure whilst others are more complex and harder to treat.(Of course in the UK we have other species which further complicates things)
Then Ben Luft says about the many co infections that can also be transmitted by the bite of the tick.
(We need to stop and consider that in their early stages these ticks will have fed on vermin and other small mammals before injecting that blood and infections into us.)
Luft presented at the following Workshop. Congress mandated the NIH to hold a workshop on the state of the science in Lyme Disease and other tick borne illnesses this was held by the Institute of Medicine and can be watched at the videocast here
This leaves those watching in no doubt as to the complexities of tick borne illness, it is far too early to be imposing restrictive treatment practises.
I was fortunate in having a very thinking GP although it took 5 doctors and 3 Rheumatologists 4 years to diagnose me with Lyme Disease.
It was a chance course of antibiotics which improved my symptoms and led GP to suspect Lyme Disease, I had attended the surgery at the time of bites, bulls eye rashes, summer flu and migrating arthralgias ( all red flags for Lyme Disease).
As my symptoms progressed I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Musculoskeletal Disease and then Polymyalgia Rheumatica and unfortunately put on steroids which are contra indicated if you are fighting a bacterial infection.
There have been several other patients diagnosed with Lyme Disease now at my surgery and in my locality near Guildford, once doctors start to look they will find.
I am 100% recovered now but it has been a very long struggle, I was Retired early from the Civil Service on Ill health grounds, at my worst I had difficulty standing from a chair and walking across a room and for 3 1/2 years had difficulty walking up or down stairs properly now I have no pain or disability and can garden and cycle again. How amazing is that.
There is important information available through UK charity at www.lymediseaseaction.org.uk
This is a Medical disgrace of International proportions because everyone cow tows to a small group of biased doctors who wrote the outdated and much contested IDSA Lyme Disease Guidelines, guidelines which were based more on the opinions of those who receive significant financial rewards from their involvement with Lyme Disease and not on all the scientific evidence available.
The makers of the test kits used in the UK Trinity Biotech say that a negative test can not be used to rule out Lyme Disease, it's an antibody test!! and yet Doctors are not made aware of this and therefore say to patients you can't have Lyme.
What they fail to know is that the tests can miss up to 50% of cases.
Imagine spending the rest of your life with a painful, debilitating and crippling illness when just simple oral antibiotics can restore your health if it is found to be a bacterial infection Lyme Disease and co infections.
Joanne Drayson, Guildford Surrey
commented on 09-Feb-2011 14:48
The situation with Lyme disease is dreadful, and not just in the UK, although perhaps our country has had the worst deal in Europe as far as warning signs to the general public go.
At least in Germany and other EU countries, GPs surgeries have warning posters. Why don't we?
In the Netherlands, 65,000 people signed a petition last year demanding treatment for chronic sufferers, and a public health strategy to combat new infections.
Here in the UK a similar petition is under weigh, here at: http://www.ipetitions.com/petition/uklymepetition/ and I urge everyone to take a look at the signatures and comments, and see that Ruth's story is being repeated all over the country. And please sign to support us!
Only those with private funds are being treated properly.
Many people with Lyme don't know they have it - but they may be diagnosed as having Multiple Sclerosis type symptoms, ME or Chronic Fatigue Syndrome, Parkinson's type symptoms, jaw and dental symptoms, strange optical problems, even dementia, and mental health problems.
Lyme was first recognised as being endemic in the UK in 1989, but only a few people know what a tick looks like or that its bite is painless and the newly-hatched baby ticks are as small as a poppy seed.
Why this has been kept so hush-hush is very puzzling, as each day there will be more people infected because they had no idea that Lyme is in Britain.
My own GPs practice head said "It's only in deer ticks" and that such ignorance exists in GPs is incredible - Lyme is carried by the sheep tick, and by vole ticks and mouse ticks and bird ticks, and you can get bitten in your own back garden or a park in a city.
A big "Thank you" to Ruth and your paper for bringing this state of affairs into the public eye, because each article like this, in the absence of a government strategy, may help hundreds or thousand of people to learn about Lyme.
I myself was left for 20 years before I had a diagnosis, being labelled instead as having post viral fatigue then ME and Fibromyalgia. I am now trying to survive on state benefits having sold my house long ago, and I cannot afford any treatment at all.
I worked and contributed until I was 38 years old, paying my taxes and National Insurance, only to be left infected with a disease worse than AIDS and syphilis and TB combined.
The symptoms seem to move around the body, and many people have Fibromyalgia pains, but some might have palpitations, or even a stroke or heart weakening as a result of Lyme and the other bacteria and viruses carried in ticks.
The infection can lie dormant for a month or even longer after the bite. It's a hard disease to diagnose, but the health services are doing none of us any favours by playing down the fact that Lyme is not rare at all, and by also saying their tests are 100% accurate, when all of the scientific literature has said again and again that the tests are very variable and just cannot be relied on to say whether the person has the disease or not.
Even the test kit manufacturers say this. But the Lyme testing labs do not pass that information on to any doctors, not even the top infectious disease doctors as far as I know.
This is a scandal which has been simmering under the horizon for 40 years and it needs top thinking directed at the problem rather than the pretence that there is no problem.
Denise Longman MSc, Lowestoft Suffolk
commented on 09-Feb-2011 12:17