RESEARCH BY SURREY UNIVERSITY COULD HELP PEOPLE IN GUILDFORD AS IT ENCOURAGES AUTHORITIES TO RAISE AWARENESS OF THE DANGERS OF CATCHING LYME DISEASE

Guildford is a delightful town, the County town of Surrey UK. It is situated in a gap in the north Downs and is surrounded by beautiful countryside which is enjoyed by  many - walkers, dog walkers and cyclists.

The University of Surrey was involved in research with the Forestry Commission and Oxford University into 'Assessing and Communicating Animal Disease risks for countryside users.' here 

Abstract

Management of zoonotic disease is necessary if countryside users are to gain benefit rather than suffer harm from their activities, and to avoid disproportionate reaction to novel threats. We introduce a conceptual framework based on the pressure-state-response model with five broad responses to disease incidence. Influencing public behaviour is one response and requires risk communication based on an integration of knowledge about the disease with an understanding of how publics respond to precautionary advice. A second framework emphasizes how risk communication involves more than information provision and should address dimensions including points-of-intervention over time, place and audience. The frameworks are developed by reference to tick-borne Lyme borreliosis (also known as Lyme disease), for which informed precautionary behaviour is particularly relevant. Interventions to influence behaviour can be directed by knowledge of spatial and temporal variation of tick abundance, what constitutes risky behaviour, how people respond to information of varying content, and an understanding of the social practices related to countryside use. The frameworks clarify the response options and help identify who is responsible for risk communication. These aspects are not consistently understood, and may result in an underestimation of the role of land-based organizations in facilitating appropriate precautionary behaviour.

David Uzell was the team member from the Psychology dept at University of Surrey, Guildford. This is a pdf from that research 


'Making sense of unfamiliar risks in the countryside: the case of Lyme
disease'
Afrodita Marcu, David Uzzell, and Julie Barnetta



'These results suggest that policy makers and countryside authorities should not shy away from providing information on possible health risks as it is unlikely that this would act as a barrier against countryside use.'


Thank you David Uzzell, here is hoping that in time this will encourage organisations to take a proactive approach to warning the public of the possibilities of tick borne diseases.


My immediate concern is for people visiting Guildford because there is a growing number of ticks in this area and a growing incidence of cases of Lyme Disease.


I have spoken to people with Lyme Disease who have been infected from tick bites in their gardens, Woodland, Downland and along the River Wey. 


Several cases of Lyme Disease have been diagnosed in Merrow,  myself and 3 others within 200meters of my house, all our gardens side onto woodland, the other side of this woodland Pheasants ( competent hosts for Borrelia, Lyme Disease) are bred in Clandon Park. The woods and our gardens have ample hosts to feed the nymphal ticks before the ticks seek out their preferred host a deer, also found in abundance. 


Thankfully local doctors surgeries are becoming aware and hopefully more cases will be treated in the early stages and prevent others from suffering years of a chronic illness because the doctors missed those early signs of bites, rashes, summer flu' and migrating arthralgias. 


I have recovered on long term antibiotics. 


How many patients living around the Guildford area suffer from symptoms of Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal Disease, Polymyalgia Rheumatica not to mention so many other health problems, heart block, neurological problems, psychiatric problems and have never been properly assessed to see if it could be caused by Lyme Disease. With 50% not seeing the tick as the smallest is the size of a poppy seed, 40% don't get the Bulls eye rash, and blood tests can miss 50% of cases it is so important to raise awareness.


Sadly at present patients are the ones who drive awareness campaigns and not the Authorites. Guildford Borough do now have something on their website to warn people but not many of us would think to check their website  if we do not know Lyme Disease can be caught from tick bites in the Guildford area. here 

DO YOU HAVE SYMPTOMS OF LYME DISEASE?

Lyme Disease masquerades as many different illnesses you may have it and not know it.

My symptoms were migrating arthralgias, arthritis, muscle weakness, peripheral neuropathies, but many others suffer cognitive difficulties, depression, confusion, neurological illnesses.

I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, muscle Weakness, musculoskeletal Disease, Polymyalgia Rheumatica before finally after 4 years Lyme Disease. Patients I am in touch with here in the UK have been diagnosed with depression, MS, Parkinson's, Motor Neurons before being diagnosed with Lyme Disease.

Turn the Corner has done and is doing research on our behalf and training doctors so that others can be diagnosed earlier and treated adequately and not have to go through years of hell living with this dreadful disease.

Thank you Turn the Corner, visit their website here

LYME DISEASE IN THE NEWS

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'
By editorial@gazettenews.co.uk

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.
Unamit, Chelmsford
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.
Lesley, Hertfordshire
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.
Catherine, UK
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!
Jan, Ipswich
commented on 09-Feb-2011 15:53

Is there no Dr House in the house ?
George, Chelmsford
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
http://www.tvworldwide.com/events/iom/101011/

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

THE DOCTOR OF LAST RESORT

The Doctor of last resort - no truer words were written about those pioneering doctors who treat patients with Chronic Lyme Disease and other tick borne illnesses.

Through CALDA blog here I was able to read all three of these excellent articles in The Roanoke Times.

Lost in the Woods Navigating the Chronic Lyme Debate by Beth Macy

In search of hope, facts here
Salvos launched in Lyme debate here and
The Doctor of last resort here
plus the excellent video here

One day I look forward to seeing similar articles run in our UK Media, the dearth of good investigative journalism on chronic Lyme isn't for lack of trying or lack of patient experiences.

Until then how many patients with symptoms of arthritis, neurological problems, chronic fatigue, fibromyalgia and many more health problems will ever realise that like me their symptoms were related to that tiny tick that bit them years before.

More importantly how many doctors will consider as a differential diagnosis.

MY LYME DISEASE IS NOT THE IDSA LYME DISEASE

My Lyme disease is not the IDSA Lyme disease

In response to various articles in the Chicargo Times and other newspapers found here
a number of patients posted their experiences with the above heading.

Blogger Lymenaide: says this:-

Do a Google search for "My Lyme Disease is not the IDSA Lyme Disease". See what pops up! Keep writing and posting your stories. Let's get the first few search pages to be filled with our stories. Keep the existing stories at the top of the list by reading them, commenting and sharing them with your friends and family.

Below is what I added to my side bar of both my blogs.

LYME LIFE

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks, 4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. I have been retired early from the Civil Service having lost my job not to mention my earning potential.

My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said, but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer at the time I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area.

Thus started my very lengthy search about Lyme Disease leading me through http://www.lymediseaseaction.org.uk/ to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite the Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work.

Life is such a joy.

Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses.

Look at UK charity http://www.lymediseaseaction.org.uk/ if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one.

One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.
ME/CFS, Fibromyalgia, Polymyalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

Monday, 25 January 2010
ME/CFS, FIBROMYALGIA, LYME DISEASE UPDATE

An update on my journey from ME/CFS, Fibromyalgia, Arthritis and Muscle weakness, Polymyalgia Rheumatica, to Lyme Disease and a cure for my illness which started in 2003.

I have details of my story on the right hand column on my blog and decided it was time to post an update.


I originally started Joanne's Cottage Garden as a record of my garden, I was able to enjoy gardening once again after an illness of 6 years. Those who followed that blog will notice my mention of my ongoing Lyme Disease symptoms, mainly in my legs.

A few months ago I started Looking at Lyme Disease blog in order to post information that interested me.


Over the last year my symptoms have continued to improve. My scariest symptom was swallowing problems which improved on Doxycycline but returned on Amoxycillin and improved again on a combination of Amoxycillin and Clarithromycin. I tried many times to reduce the Clarithromycin and always my arthritis and muscle weakness would deteriorate but by week three the worst symptom, the swallowing problems were the ones that would push me back into taking Clarithromycin again.


In November 2009 I stopped antibiotics. I still had some symptoms in knees, feet and facial tingling and twitching, I was never sure what was just muscle problems and what was peripheral neuropathies. My GP had discussed the Chief Medical Officers letter with me (details of this on Lyme Disease Action website). I had mistakenly thought she was going to refuse any further prescriptions and so decided to stop antibiotics whilst still having some in hand for emergency (Lyme patients would understand this, others not familiar with the problems getting treatment may not).


It is now week 13 since stopping antibiotics. So far my symptoms have deteriorated, weeks 4, 8 and 12 being the worst and symptoms picking up in between. Symptoms have appeared in a variable way in calf muscles, knees, wrists, feet, face and rt hip. So far I am delighted that my immune system seems to be coping and within a few days of any new symptom appearing, my immune system seems to get on top of it. This is what we are aiming for the immune system in control.


I did see my LLMD and he confirmed I still had Lyme like symptoms and at some point more or less definitely would need antibiotics again, but not just now. He advised me that many of the USA Lyme doctors would treat more aggressively and for longer. This I know, many would treat with cyst busting drugs, we discussed this and decided not to do so at present. The reason for my cycling symptoms is thought to be the dormant infection (which goes into cysts) replicating usually on a 4 weekly cycle.


So at present I am not as well as I was when last on antibiotics, fatigue being another of my problems but not the chronic fatigue that doesn't improve with rest. I am delighted not to be popping pills and delighted that generally my health is still improving so fingers crossed.


Discussing my situation with my GP she is as always very supportive and if the time comes when I need further treatment I am fortunate to have both my doctors there to support me.


I have to say that I have been very very lucky, so many Lyme Patients are far sicker than I ever have been even though there was a time three years ago when I did not want my life to go on because of the endless unremitting pain. It has been a very long and difficult recovery nearly three years of antibiotics, I suspect the 20 months of steroids given for the Polymyalgia Rheumatica Diagnosis would have compromised my immune system and made my recovery more protracted.

For now it is a joy to be pain free and no longer on any medication.

As of December2010

Sadly after a 5 month break off antibiotics my symptoms deteriorated sufficient for me to once again start antibiotics. Some of these symptoms are those described as Peripheral Neuropathies, facial, tingling and twitching, problems with vision, flashing lights and blurred vision, and tingling and numbness in legs and feet. Thankfully they responded well to antibiotics and whilst remaining on them I remain virtually 100% with only one or two remaining symptoms that have continued to improve month on month.

DOCTORS MUST LISTEN TO THEIR PATIENTS

Peter Demitry, a physician, former Navy test pilot and father of ill children received a standing ovation from the audience when he spoke emotionally of the contrast between the early health-filled years of his family and the nine years following his teenage son’s tick bite.

He said

“Lyme moms” and his own patients “taught me more in two years than I’d learned practicing orthodox medicine in twenty.”

Dr. Daniel Cameron, former president of the International Lyme and Associated Diseases Society, estimated a chronically ill Lyme patient’s annual medical costs for treatment of Lyme and co-infections to be $16,200, bringing the total cost to Virginians to about $67 million annually.

Virginia Governor Bob McDonnell’s newly appointed Lyme Disease Task Force held an expert testimony hearing Tuesday, November 30 at Patrick Henry College in Purcellville. for more information click here

-------------------------------------------------------------------------

Of the 5 doctors and 3 Rheumatologists I saw the biggest problem was that they did not listen to me describing my symptoms.

One Professor of Rheumatology who works at our top London Hospital examined me. He established that I had bursitis in my right hip although two years earlier my local Rheumatologist established I had bursitis in my left hip, infact there was little to choose between the pain in both hips throughout that two year period.

The Prof. also established I had problems with hips which he said was osteo arthritis they were very painful when he manipulating my legs. (since long term antibiotic treatment they are now completely recovered no pain no signs of arthritis or stiffness)

He examined my shoulders, ankles and knees which were also painful and said there were signs of arthritis.

I had been referred to him by my GP because I had arthritis in virtually every joint and muscle weakness in many muscles. I had been on steroids 20 months for Polymyalgia Rheumatica diagnosis but when given antibiotics for a chest infection my arthritis and muscle weakness significantly improved and led GP to suspect Lyme Disease. ( her computer confirmed times I had visited the surgery with bites, rashes, summer flu' and migrating arthralgias)

This Prof. was recommended to GP by the 'expert' at HPA as being someone with an interest in Lyme Disease.

He examined my wrists last and his comment to me was 'what have you done to sprain your wrist?'

I think at that point I realised I was wasting my time with him he clearly was not listening, I had said that I had pain and stiffness in virtually every joint many of which he had already confirmed so why when he got to my wrists did he question if I had damaged them somehow?

He said that the blood tests for Lyme being negative he was assured by the 'expert' at HPA meant I did not have Lyme Disease. ( This was so clearly a false premise as I had been on steroids for 20 months which suppress the immune response and that is what is measured with a Lyme Disease test the immune systems ability to produce antibodies. Since having access to the Internet the abundance of research available shows that these tests so relied upon by our doctors are missing at least 50% of cases.)

The Prof.'s diagnosis was Lyme Neurosis from reading too much on the internet about Lyme Disease. (Little did he know at that time I did not have access to the Internet and it was in fact my GP who suspected Lyme Disease. ) He wrote this to GP and said I had ME/CFS and should try antidepressants and CBT.

Thank goodness my GP had listened to my symptoms had seen my incapacity and many signs of inflammation and improvements and she continued to treat me following ILADS guidelines and most importantly I continued to improve in health.

Until the science which is still emerging in the field of tick borne illness is more widely disseminated amongst our doctors it is important to do our own research so we can best advocate for what treatments help us.

CHRONIC FATIGUE, ARTHRALGIAS, MYALGIAS, DYSESTHESIA, DEPRESSION

This recent research article is a start in the right direction looking at Chronic Lyme Disease, so far most research concentrates on the early acute form only.

The recent Institute of Medicine workshop highlighted that more studies need to be done in this later chronic state of illness with or without positive serology.

Abstract can be found on Pub med here

The diagnostic spectrum in patients with suspected chronic Lyme neuroborreliosis - the experience from one year of a university hospital's Lyme neuroborreliosis outpatients clinic.

Most common symptoms in all categories were arthralgia, myalgia, dysaesthesia, depressive mood and chronic fatigue. Conclusion:  Patients with persistent symptoms with elevated serum antibodies against BB but without signs of cerebrospinal fluid inflammation require further diagnostic examinations to exclude ongoing infection and to avoid co-infections and other treatable conditions (e.g. autoimmune diseases). One patient with acute LNB, who was treated with ceftriaxone for 3 weeks suffered from LNB with new headaches and persistent symptoms 6 months later. These data should encourage further studies with new experimental parameters.

details also found on Prohealth here

I found the above interesting because it highlights that Borrelia infection may not be ruled out by lack of Cerebrospinal fluid inflamation, something that many Neurologists tend to do with people with Neurological illness or Multiple Sclerosis.

Also the study talks about 122 patients in one year with suspected Chronic Lyme Neuroborreliosis that in itself is interesting because 114 of these people had tested positive for Lyme Disease and all had received antibiotic treatment.

To have such a number suffering with Arthralgias, myalgias, Dysesthesia, Depression and Chronic Fatigue after the standard treatment has to raise some serious questions beyond what this study was aiming at.

Because current guidelines adopted from the IDSA guidelines suggest that these remaining symptoms are rare, all in your head or the aches and pains of daily life it would seem they are not so rare after all.

One has to wonder with the poor state of reliable testing for Lyme Disease how many more people with the above symptoms could infact be suffering from an undiagnosed case of Lyme Disease and may benefit from antibiotic treatment following such as the ILADS guidelines .

AWARENESS IN THE MEDIA

An excellent article where the Daily Mail raises awareness of Lyme disease read here

Stella Huyshe-Shires, chair of the charity Lyme Disease Action: 'The risk of Lyme disease - which can cause fever and dizziness, bladder problems and fatigue - is increasing everywhere in the world. The bacteria which causes this awful disease is carried in ticks - in their saliva. 'So I travel with a tick remover - a small hooked device that works by gently lifting and twisting the tick out of the skin without pressure.' (Tick remover, £4.99, lymediseaseaction.org.uk)

My response
All excellent advice.
Stella I wish I had read your advice years ago.

I did not know that Lyme Disease could be caught in the UK I had thought it unique to USA. It took 5 doctors and 3 rheumatologists 4 years to diagnose me.

I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Musculo Skeletal Disease, Polymyalgia Rheumatica as my symptoms deteriorated and then a chance course of antibiotics led GP to suspect Lyme Disease.

Following ILADS guidelines on long term antibiotics I have my health and my life back.

Where is the awareness?

When my MP Anne Milton wrote to ask HPA that question a couple of years ago the reply came back that they had updated their website!! What use is that if there is no public awareness.

Where I live in Guildford I am in touch with 23 people diagnosed with Chronic Lyme disease the latest case like me was diagnosed with PMR and then Parkinson's last Christmas he has now tested positive for Lyme Disease and already responding to antibiotics.

A terrible quote from the IrishTimes can be seen here

'Thanks to all of you who responded to the column on ticks and Lyme disease some weeks back. One reader told me of an effective way to remove ticks from the skin, courtesy of her father who survived the trenches of the first World War. Light a match and blow it out. Apply the still hot head of the match to the protruding tick, which will promptly withdraw its head from under the skin'.

My response by e mail to the newspaper.

I take great exception to the flippant and misleading comment in your recent article. You do your public a gross mis service with this comment. Your original article was reasonably written and you did quote ' Dr Paul McKeown, of the Health Protection Surveillance Centre. “The entire tick, including any mouthparts which might break off, should be removed with a tweezers by gripping it close to the skin.' which is currently the correct advice following over 19000 research articles on Borrelia infection clearly not known by the soldiers in the trenches during the first World War.

By shocking the tick in any way either by heat, Vaseline, or grabbing the tick, risks the tick regurgitating it's stomach contents into you, if it is infected.

As well as Borrelia there are many other infections a tick can carry including Bartonella, Babesia, Ehrlichia, Anaplasma, Mycoplasma and others most of which can cause serious health problems alongside a Borrelia infection although rarely tested for in the chronically sick patient by our Health Authorities.

You have barely scratched the surface of the problems for patients who contract these tick borne diseases, please write something to contradict your latest error of judgment at the very least.

I am in touch with a number of patients from Ireland with Chronic ill health following a tick bite some travel to USA to see World experts in this field.

This is a link to a blog I follow which is trying to get the Health Authorities to take note of the problems http://ticktalkireland.files.wordpress.com/2010/08/stats-analysis-lyme-ireland.pdfhttp://ticktalkireland.files.wordpress.com/2010/08/stats-analysis-lyme-ireland.pdf

I was sent this link from a Canadian Lyme patient who was infected in Ireland
http://www.ncbi.nlm.nih.gov/pubmed/9360424
'Data of Lyme disease seroprevalence has been established in European patients or at-risk populations and in blood donors or control subjects'. 'The range of antibodies to B. burgdorferi in blood donors or control subjects shows the highest spikes in Ireland 15%'

This is also mentioned on Tick talk Ireland.

I have long been critical of our Media in the UK for their lack of wanting to get involved in the controversy surrounding diagnosis, blood tests and treating of Lyme Disease, but I can not forgive them their lack of at least wanting to raise awareness amongst the general public, I was pleasantly surprised at your original article but hope you do something to rectify your latest misleading quote.

I live in Guildford Surrey and have suffered from Lyme disease since 2003 it took 5 doctors and 3 rheumatologists 4 years to diagnose me. My GP suspected Lyme Disease after a chance course of antibiotics improved my symptoms although I had attended surgery at times of bites, bulls eye rashes summer flu' and migrating arthralgias.

As my symptoms deteriorated I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Musculo Skeletal Disease, Polymyalgia Rheumatica and finally Lyme Disease. I was retired early from the Civil Service on Ill health grounds, at my worst I had difficulty standing and walking across a room and could not walk up or down stairs properly for 3 1/2 years now after long term antibiotics following alternative guidelines by International Lyme and Associated Diseases society rather than the restrictive HPA/IDSA guidelines I am recovered, I have no pain, no disability and can garden and cycle again.

My experience is like so many others whose doctors fail to catch this awful disease at the time of the tick bite when it is so easily treated although on a longer and higher course of antibiotics than NHS would give, as several patients have found to their cost. My local surgery is now treating a number of patients in the early stages of tick bite but also several others whose illness has become chronic like mine.

I now know of 23 patients in the Guildford area with Chronic Lyme Disease the latest case like me was diagnosed with PMR and then Parkinson's last Christmas he has now tested positive for Lyme Disease and on antibiotics his symptoms are improving.

There is so much more that our media could do to help raise awareness of this emerging disease but also bring into the open the controversy that surrounds this illness the best place to start your education would be by reading some of the information on www.lymediseaseaction.org.uk website

There are an increasing number of doctors and consultants now in the UK supporting ILADS way of treating, some because they or their family member have become infected and they have had to travel to the USA to see the expert Lyme Doctors.

'Of course, you can never replace the value of talking with patients.' It is the listening to patients that our doctors have lost the art of.

My greatest concern is for the children who are the most vulnerable and the hardest to get adequate treatment for, if you read some of the e mails I have had from parents of children with Chronic Lyme Disease it would break your heart.
------------------------------------------------
So much more needs to be done and the media could do so much more to raise public awareness and save countless people from this awful disease.

PUBLIC HEALTH RISKS OF LYME DISEASE IN UK

THE PUBLIC HEALTH RISKS OF LYME DISEASE IN
BRECKLAND, U.K.: AN INVESTIGATION OF
ENVIRONMENTAL AND SOCIAL FACTORS

TRACEY V. MAWBY* and ANDREW A. LOVETT

School of Environmental Sciences, University of East Anglia, Norwich NR4 7TJ, U.K.
Abstract This paper considers the public health risks of Lyme disease, a borrelial infection transmitted to humans chiefly by nymphal Ixodes ticks. A study undertaken in the Breckland area of East Anglia, U.K., combined analysis of the spatial and temporal factors affecting tick activity at recreational sites with a survey of current levels of disease awareness among visitors to these locations. Significant re- lationships were found between densities of questing ticks and vegetation type, relative humidity and temperature. More than two thirds of the general public visiting the sites were aware ticks could carry diseases, but only 13% recognized an unfed nymph, and under half knew that Lyme disease could be contracted from tick bites. Such results need to be taken into account when formulating public health and education measures. # 1998 Elsevier Science Ltd. All rights reserved
Key words Lyme disease, Borrelia burgdorferi, Ixodes ricinus, Breckland, risk assessment

The full article can be accessed here

Thank you anonymous for your comment on my last post and I suspect for the link into the above research posted today on Eurolyme.

It is a disgrace that as you say so much research has already been done for many years into ticks their location and habitat and the public's risk and perceived risk. I was aware that there was research being done with my local University Surrey, Oxford University and the Forestry Commission on risks and perceived risks. I was rather surprised when I heard of this that money and time was being spent on such research and yet trying to get local bodies and organisations to publicise the risks is such an up hill battle. Having been in touch with 23 people suffering from Chronic Lyme Disease in my locality in and around Guildford.

I saw 5 doctors and 3 rheumatologists, attending surgery with bites, bulls eye rashes summer flu' and migrating arthralgias all red flags for Lyme although it took four years and a chance course of antibiotics given for a sinus chest infection which significantly improved my symptoms and led my then GP to suspect Lyme Disease. By then other cases had presented in the early stages and been confirmed with NHS positive tests.

I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal disease, Polymyalgia Rheumatica and eventually Lyme disease. It was only on long term antibiotics for Lyme Disease as per Burrascano Guidelines that I started to recover and now am nearly 100%, with no pain, no disability and can garden and cycle again.

I was aware of Lyme Disease but had always thought it to be something unique to the USA. I even have a second cousin who was involved in the research in the early 1980's something to do with being in charge of the blood banks at that time. He later moved into a different field and became Chief of one of the National Institutes of Health although now retired. I contacted him to see if he could help me find a specialist in the UK to assess my condition, I had no reply now I understand why. However he did say to my father that he was not at all surprised to hear that it was Lyme Disease from my description, that the blood tests were not reliable being antibody tests(something most doctors would realise if they thought for themselves)and that he was not surprised to hear long term antibiotics were helping.

The more you get involved with reading the research and talking to doctors the more you realise there is so much more known but hushed up about Lyme Disease.

I had actually asked one doctor about my migrating arthralgias if it could be due to an insect bite the answer a firm no.

Sometimes thinking about the denial and the wasted years of my life which could have been avoided with just more awareness can make me feel a little bitter but what really concerns me is the hundreds if not thousands of people who are in the same situation many of whom will not even realise their health problems are due to a tiny tick bite.

The biggest disgrace is that in not publicising awareness so that people can protect themselves and seek early medical attention they put our children at risk, that is unforgivable.

As Anonymous said 'One wonders why those who were working on ticks for decades at the University of Oxford did not have the decency to warn the UK, her government and people, about the many pathogens that ticks carry. Shame on them, and all those who oversaw their work. What honours and medals they have gained, while all the time staying tight-lipped and aloof from the scourge wreaked upon the ordinary folk. Scientists have studied ticks and the viral and bacterial diseases they carry, at Oxford and other UK labs, since the 1940s at least. May their god forgive them, because I cannot, not when I think of the agony and despair caused by this Lyme disease, and whatever else is in the mixture.'

How do they sleep at night? Knowing the risks and dangers and not raising public awareness.

Statistics are just that, if you happen to be that one person infected and suffering serious health problems it doesn't matter what the statistical chances of being bitten and infected are you need help and medical attention.

A LYME WARRIOR

Dr. Joe Jemsek “Speaks the Truth” Speech

Dr. Joe Jemsek (www.jemsekspecialty.com) discusses the controversy surrounding Lyme disease and what action needs to be taken to provide patients with better care.

Lyme Disease is more generally associated with Arthritis by the general public, that is if they think about it at all. In fact my main symptoms were arthritis and muscle weakness but as my illness progressed I developed various Peripheral Neuropathies. It is interesting to read what Dr Jemsek has to say about the Disease and the Patient.

THE DISEASE
A tick bite can expose a person to a variety of bacteria and other microorganisms that may make one sick. This can occur after a single bite or through multiple tick bites. In this overview, we will focus on the particular bacteria called Borrelia Burgdorferi (Bb) that is known to cause Lyme disease and is acquired from a tick bite. If antibiotics are not taken or are inappropriately administered soon after a bite from a Bb-infected tick, the patient is at higher risk for illness, which may occur suddenly or surface at a later time.
Finding the attached tick is difficult because the tick that carries this bacterium is very small and tick bites may occur where they are not easily seen. Often times, the tell-tale rash that can result from a tick bit, called erythema migrams, does not develop. Hence, a patient may not know they were bitten by an infected tick. They may soon begin to feel symptoms such as fatigue, muscle pain and spasms, sensory aversion, gut and bladder problems, bizarre neurological symptoms and memory loss. It is not unusual for cognitive difficulties to progress to the point that patients experience the inability to find their way home from everyday places, such as the grocery store and post office.

THE PATIENTS
Most patients that come to the Jemsek Specialty Clinic have seen 5 to 15 doctors for the symptoms listed above. They have seen neurologists, psychiatrists, rheumatologists, cardiologists, gastroenterologists, and internal medicine specialists. They have often been treated for one of more of their individual symptoms without knowing the cause of those symptoms. When treatment for their symptoms is stopped, the symptoms typically re-emerge. This is not unusual if one stops taking high blood pressure medicine, the blood pressure usually rises again.

On the matter of the IDSA review

http://www.jemsekspecialty.com/shownews.php?id=30

IDSA Review Panel Results Called Highly Suspect

"There is no justification for relying on flawed science for continuing its recommended guidelines and arming insurance companies to deny health benefits to insured Lyme victims. If the panel was not prepared to recognize the studies that support longer courses of antibiotic treatment for chronic sufferers, it should have included a call for continued scientific study of this topic among its suggestions. It is time for the IDSA doctors to stop defending their reputations and get back to the work of helping sick people to get well."

Although the above video was of 2009 Into The Light Gala I had not started this blog then and it is something I wanted to post about. I remember Dr Jemsek saying that of the top 20 chronic illnesses in the USA they only know the cause of two Helicobacter Pylori a bacterial infection causing stomach ulcers and HIV a viral infection.

How many patients went under the knife for a stomach ulcer unnecessarily and how many AIDS patients died before HIV was accepted? Already Lyme disease is a greater epidemic in the USA than HIV.

ME/CFS TIME LINE

In the early stages of my illness I was diagnosed with Fibromyalgia, I had migrating Arthralgias. As my symptoms deteriorated I was diagnosed with ME/CFS, then Arthritis and muscle Weakness and eventually Polymyalgia Rheumatica and put on steroids. Clearly steroids reduced the inflammation I had throughout most of my joints and muscles and enabled me to struggle on working although on very much reduced hours.



It wasn't until a chance course of antibiotics significantly improved my symptoms that led my GP to suspect Lyme disease. Later this was confirmed clinically by an expert and the recovery from chronic debilitating health on long term antibiotics has given me my life back again.



Because of my earlier ME/CFS diagnosis and the fact that many patients with ME/CFS are found to have Lyme Disease, I take an interest in this illness and the problems patients have.



A recent post on CFS Central blog found here gives an excellent catalogue of events A COMMOTION IN THE BLOOD by Mindy Kitei do visit this blog for a detailed read of what has been going on.

BBC NEWS LYME DISEASE WARNING

BBC NEWS York & North Yorkshire

Lyme disease threat to walkers on North York Moors

Walkers on the North York Moors are being warned to check their skin carefully after being out on the moors.
Ticks, from deer and sheep, infected with Lyme disease are said to pose a serious risk to health as Peter Lugg found out.

To watch the clip click here

Ticks can be found throughout the UK so it is important to be vigilant. It is easy to miss the sometimes poppy seed sized tick and not everyone gets the bulls eye rash. Not all ticks carry Lyme Disease, Borrelia, but ticks which feed off any small mammal such as rats, mice or birds etc., can carry a multitude of infections most of which are never even tested for. We can't exactly ask the tick if it picked up an infection in it's last feed and if so which infection. By the time we are really sick it is often too late to treat as an early stage infection and if that opportunity is missed then longer courses of treatment are sometimes needed to clear the infection according to the ILADS Guidelines.

It is good to see an increasing awareness in the media but so much more needs to be done. If only I had known 7 years ago that we could catch Lyme Disease in the UK, I had thought it unique to USA. If only the doctors I saw with bites, rashes , summer flu' like no other I had ever experienced, migrating arthralgias, not to mention the doctor I asked if it could be from an insect bite, who firmly said no with the shake of her head, if only they had known.

To think that all that arthritis pain and disability, muscle weakness, dysphargia, fatigue, peripheral neuropathies could have been avoided with more doctor and patient awareness. 6 1/2 years of chronic illness could have been avoided with just a few weeks antibiotics.

Shocking isn't it but what is more shocking is the children who suffer undiagnosed and untreated and they are the most vulnerable.

Thankfully there are a growing number of doctors here in the UK who are realising there is more to this controversy over Lyme treatment than they have been led to believe. Where I live in Guildford there are an increasing number of patients I am getting to know with Chronic Lyme Disease but also an increasing number of patients who are seeking and receiving early medical attention.

For more information look at UK charity website Lyme Disease Action

GENES, MICROBES, ENVIRONMENT -ILLNESS

Psychiatric Times

Below are extracts from an article written by Dr Bransfield the preseident of ILADS. For the full article click here.

Lyme Disease, Comorbid Tick-Borne Diseases, and Neuropsychiatric Disorders
By Robert C. Bransfield, MD 01 December 2007

Many recall the phrase "To know syphilis is to know medicine." Now Lyme disease (Lyme borreliosis), the new "great imitator," is the ultimate challenge to the breadth and depth of our knowledge. In psychiatry, we generally treat mental symptoms or syndromes rather than the underlying cause of a disorder. A greater awareness of immune reactions to infections and other contributors to mental illness enhances our psychiatric capabilities. Lyme disease, like syphilis, is caused by a spirochete with a multitude of possible manifestations and 3 stages: early with dermatological symptoms, disseminated, and late stage.

Unlike Treponema pallidum, the cause of syphilis, the causative agent of Lyme disease, Borrelia burgdorferi, can be much more difficult to eliminate, diagnostic testing is less reliable, and interactive copathogens are major contributors in the pathophysiology. B burgdorferi is highly adaptable with 6 times as many genes as T pallidum and 3 times as many plasmids as any other bacteria that allow rapid genetic adaptations. It is a stealth pathogen that can evade the immune system and pathophysiological mechanisms. Knowingly or not, most psychiatrists have at some point been perplexed by patients with late-stage psychiatric manifestations of Lyme borreliosis. Several factors are associated with the risk of infection as well as the different manifestations of Lyme borreliosis

The following composite case illustrates a number of problems that may make diagnosis and treatment of Lyme borreliosis anything but straightforward. The patient is in good health and enjoys outdoor activities. Often this person has the HLA DR4 genotype. He or she may acquire a small tick bite that goes unnoticed because the subsequent rash may not be of the classic bull's-eye type, may be easily overlooked in dark-skinned individuals, may be misdiagnosed, or may occur only with a second or subsequent infection. There may be flu-like symptoms with migratory musculoskeletal aches and pains. If a diagnosis of Lyme disease is made, the initial course of antibiotic treatment may not have been sufficient to eliminate the infection. (Although standardized by 1 set of guidelines, psychiatrists often see the failures of some of the "standard" treatments.) Low-grade symptoms may remit and periodically relapse over time. An accident, emotional stress, vaccination, or childbirth can trigger an exacerbation of symptoms.

The patient, who did not have psychosomatic symptoms and was not hypochondriacal in the past, now complains of an increasing number of somatic, cognitive, neurological, and psychiatric symptoms. Although Lyme disease may be suspected, the laboratory tests available to most clinicians often lack sensitivity and thus are read as negative for Lyme disease. Fibromyalgia, chronic fatigue syndrome, or multiple sclerosis (MS) may be erroneously diagnosed.

Treatment of some symptoms with corticosteroids may initially provide relief, but a more rapid decline often follows. The patient sees multiple specialists, each of whom restricts the examination to his area of expertise. Nothing is resolved, and the patient is frustrated that his symptoms cannot be explained. In view of the growing list of unexplained symptoms, including psychiatric symptoms, the patient is treated with tranquilizers and antidepressants with some benefit, but gradual decline persists.
The major complaints include fatigue, multiple cognitive impairments, depression, anxiety, irritability, head-aches, and a multitude of other symptoms. When general medical treatment fails, the patient may be referred to a psychiatrist for 3 reasons: the unexplained medical symptoms give the appearance of a psychosomatic or somatoform condition; complex mental symptoms are thought to require psychiatric assessment; and a psychiatrist is thought to be needed to more effectively manage psychiatric treatments.

General theoretical issues

The causes of most psychiatric illnesses are unknown. The catecholamine hypothesis does not adequately explain the cause of abnormal neurotransmitter functioning. Mendel stated that human traits are determined by individual genes that function independently of other genes and environmental influences. Koch believed that many human diseases are caused by microbes that exert their effect independently of other microbes, environmental factors, and genes. The cause of most mental illnesses cannot be explained by neurotransmitters, genes, or infections alone. Instead, as stated by Yolken,
most common human diseases are caused by the interaction of environmental insults and susceptibility genes.Many of the susceptibility genes are diverse determinants of human response to environmental factors, including infections, and prevention or treatment of the infections may result in the effective treatment of complex disorders.


Tick-borne diseases and chronic infectious diseases

B burgdorferi, the principal organism associated with Lyme borreliosis, is one of the most complex bacteria known to man. In addition, a tick bite can presumably transmit more than 1 disease-causing organism. Thus, 2 major clinical hurdles in diagnosis and management are the absence of a clear therapeutic end point in treating Lyme borreliosis and the potential presence of tick-borne coinfections that may complicate the course of the illness. The more common interactive coinfections may be caused by M fermentans, Mycoplasma pneumoniae, B microti, Ba- besia WA-1, Chlamydia pneumoniae, Ehrlichia, Anaplasma, and B henselae, and multiple viruses and fungi. When multiple microbes grow together, they can promote immunosuppressive effects and cause marked symbiotic changes that alter their functioning.

Neuroborreliosis is an infection within the brain; however, infections in the body that do not pass through the blood-brain barrier may also impact the brain indirectly via immune effects. All the clinical manifestations, acute or chronic, of infection with B burgdorferi are characterized by strong inflammation with the production of several proinflammatory and anti-inflammatory cytokineswith an aberrant innate proinflammatory response and inflammatory brain changes. Most of the dysfunction caused by these infections is associated with immune reactions.

All involved with late state Lyme disease agree there is a large amount of inaccurate information on this subject. This disagreement exists at every level – journals, scientific meetings, clinical practice, media outlets,etc. Some of this disagreement can best be viewed as the normal difference of opinion seen when scientists approach a very complex problem from a very different perspective. To fuel the intensity of these disputes, some approach these issues with a significant bias. The full recognition of this illness has implications, which could effect tourism, real estate values, disability, insurance company/managed care liability, workman’s compensation cases, motor vehicle issues, some criminal cases, and political issues. Bias issues can adversely effect patient care, research funding, and medical regulatory issues. Some of those previously impacted by bias now have difficulty approaching this disease with full-unhampered objectivity.

Lyme disease is clearly a very complex disease. When considering a similar spirochete disease, syphilis, it has been said, “To know syphilis is to know medicine.” However, to know Lyme disease is not only to know medicine but also neurology, psychiatry, politics, economics, and law.

Another interesting article by Dr Bransfield here

By entering Bransfield in the search box in the right hand column of this blog you come up with other posts that Dr Bransfield has been mentioned in, alternately click here

RAMBLERS BEWARE OF TICK BITES

To Watch this tick in motion click here which will take you to the video on Lyme Disease Action Facebook page.

WILDLIFE EXTRA NEWS

see the full article here

Watch out for ticks & Lyme disease now the warm weather is here

07/06/2010 12:13:44

Lyme disease on the increase in the UK

Soon summer will be in full swing and many of us will be spending more time wildlife watching, walking, climbing, cycling and camping. Few, however, will be aware of, or indeed prepared for, the hidden danger of tick bites and what can come with them - Lyme disease.
The highest risk period for tick bites is from May to October when the tick is most active and feeding.
Ticks - tiny (the size of a full stop on an A4 page) blood-sucking parasites - are present in woods, moors and parks throughout the UK; London parks are no exception, and tick numbers are on the rise due to changing habitats and climate. Lyme disease, caused by the bite of an infected tick, is also on the rise, and is found throughout North America, across the UK and Europe, and Scandinavia - so it's important for everyone, at home and on holiday, to know what to look out for and to seek early treatment if necessary.

What is Lyme disease and what are its symptoms? Lyme disease is caused by the bite of an infected tick and causes a wide range of symptoms which may include a circular red "bull's eye" rash, headaches, a stiff neck, extreme fatigue, muscle and joint pain, and disturbances of sight, hearing, digestive system and sleep.

My comments on the above article included :-

It took 5 doctors and 3 Rheumatologist 4 years to diagnose me. I was diagnosed with ME/CFS, Fibromyalgia, Polymyalgia Rheumatica, Arthritis, Musculo skeletal disease, and eventually Lyme Disease. A chance course of antibiotics significantly improved my symptoms and led my GP to suspect Lyme Disease. There had been other cases of Lyme disease at my surgery. I had presented at the surgery at times of bites, bulls eye rashes, summer flu and migrating arthralgias before chronic illness and disability set in all had been documented on my records.

MORE CONFLICTS. ME/CFS, FIBROMYALGIA, XMRV, LYME DISEASE

I was diagnosed with ME/CFS, Fibromyalgia, Arthritis, Muscle weakness, Musculo Skeletal Disease, Polymyalgia Rheumatica and finally Lyme Disease, as my symptoms progressed over a number of years. On treatment following ILADS Guidelines, links in my side bar, long term high dose antibiotics, I have regained my health and my life.

I know many patients with ME/CFS also have Lyme Disease, this is well recognised by several experts in both fields but not by the medical establishments. Some patients with Lyme Disease have been found to have XMRV retrovirus as I have mentioned in earlier posts.

This latest news on research from CDC and NIH with XMRV retro virus is very disturbing. I have said before that many of the conflicts and controversies of ME/CFS are running parallel to what is happening in the world of Lyme Disease.

http://news.sciencemag.org/scienceinsider/2010/06/conflicting-papers-on-hold-as-xm.html

With Papers On Hold, Government Scientists Fuel Debate on Virus for Chronic Fatigue

It was just a snippet of news, reported by an obscure journal in the Netherlands. And yet it lit up the Internet. Twitter was all atwitter, scientists' mailboxes on both sides of the Atlantic began filling up, and dozens of bloggers started jubilating. "It's happened. I cannot tell you all how this changes the world as we have known it for 25+ years," one patient wrote on her blog. "Now to work on the vindication part!"
The reason for all the excitement? Scientists at the U.S. National Institutes of Health (NIH) and the Food and Drug Administration (FDA) were reported to have confirmed the link, first published in Science last year, between a human retrovirus and the elusive condition called chronic fatigue syndrome (CFS). Earlier this year, three other groups reported being unable to replicate such a connection. That federal scientists now confirmed it was huge mood-lifter for patients, many of whom are desperate to find a biological cause, and a cure, for their debilitating ailment.
But the story wasn't as simple as that. Science has learned that a paper describing the new findings, already accepted by the Proceedings of the National Academy of Sciences (PNAS), has been put on hold because it directly contradicts another as-yet-unpublished study by a third government agency, the U.S. Centers for Disease Control and Prevention (CDC). That paper, a retrovirus scientist says, has been submitted to Retrovirology and is also on hold; it fails to find a link between the xenotropic murine leukemia virus-related virus (XMRV) and CFS. The contradiction has caused "nervousness" both at PNAS and among senior officials within the Department of Health and Human Services, of which all three agencies are part, says one scientist with inside knowledge.
The debate over XMRV started in 2009 when a group of researchers led by Judy Mikovits of the Whittemore Peterson Institute (WPI) for Neuro-Immune Disease in Reno, Nevada, reported in Science finding traces of the virus in peripheral blood mononuclear cells, a type of white blood cell, of 67% of CFS patients. By contrast, only 3.4% of healthy controls were found to harbor the virus. The team also showed that XMRV could infect human cells and concluded that the virus—which had previously been linked to prostate cancer—might play a role in causing CFS (Science, 23 October 2009, p. 585).
Many scientists were skeptical, however, and in May, Science published three Technical Comments that tried to poke holes in the study, along with a rebuttal by Mikovits and first author Francis Ruscetti of the National Cancer Institute. By that time, two groups in the United Kingdom and one in the Netherlands had also published papers failing to find a link; in fact, they found little or no evidence of XMRV infection at all, either in patients or in healthy people. Three other groups, two from the United States and one from Europe, have also reported negative findings at meetings, says Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a patient advocacy group.
The FDA-NIH paper would offer fresh hope that Mikovits is on to something after all, but so far, details about the work are scant. Ortho, a Dutch magazine about nutrition and food supplements, last week issued a press release saying that Harvey Alter, a renowned virologist at NIH's Clinical Center, mentioned the study when he gave a talk at a blood safety meeting in the Croatian capital Zagreb in late May. In his PowerPoint presentation, Alter wrote that the data in the 2009 study in Science "are extremely strong and likely true, despite the controversy." Another bullet point said: "We (FDA & NIH) have independently confirmed the Lombardi group findings." (WPI's Vincent Lombardi was the paper's first author.) But the presentation offered no detail beyond that tantalizing summary, and an NIH spokesperson says Alter is not available for comment.
Meanwhile, a group working with retrovirologist William Switzer at CDC, which has done an independent study, has held its cards closer to its chest. But Science talked to several scientists who say they have seen the data, and they are negative. Although it's not unprecedented for government scientists to be on opposite ends of a scientific debate, two contradictory press releases on a flashpoint issue like CFS would look odd, scientists say. With publication deferred, "they want to find out what's going on first," says one researcher who says he has been briefed about the controversy.
Last week, the AABB, an international association of blood banks, recommended to its members that they discourage CFS patients from donating blood. A special task force on XMRV conceded that the evidence was preliminary but decided it's "prudent" to err on the side of caution, says task force member Louis Katz, the medical director at the Mississippi Valley Regional Blood Center in Davenport, Iowa. "If [XMRV] turns out to be important," says Katz, "I don't want to be criticized for doing nothing when I could have done something."
(This story is adapted from a longer one in the 2 July issue of Science.)

http://www.sciencemag.org/cgi/content/summary/329/5987/18

Science 2 July 2010:Vol. 329. no. 5987, pp. 18 - 19DOI: 10.1126/science.329.5987.18

News of the Week
Chronic Fatigue Syndrome:
Conflicting Papers on Hold as XMRV Frenzy Reaches New HeightsMartin Enserink
Scientists at the U.S. National Institutes of Health and the Food and Drug Administration have been reported to have confirmed the link, first published in Science last year, between a human retrovirus and the elusive condition called chronic fatigue syndrome (CFS). Earlier this year, three other groups reported being unable to replicate such a connection. That federal scientists now confirmed it was a huge mood-lifter for patients, many of whom are desperate to find a biological cause, and a cure, for their debilitating ailment. But the story wasn't as simple as that. Science has learned that a paper describing the new findings has been put on hold because it directly contradicts another as-yet-unpublished study by a third government agency, the U.S. Centers for Disease Control and Prevention. That paper, a retrovirus scientist says, is also on hold; it fails to find a link between the xenotropic murine leukemia virus-related virus and CFS.
Read the Full Text