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From The Times
February 8, 2010
Lyme disease: ?I knew whatever was troubling me wasn?t a sports injury?

Surfer Alex Wade had to give up his beloved sport because of a degenerative spinal injury ? then he got Lyme disease and his troubles really began
Alex Wade was bitten by a tick carry Lyme disease when out walking his dogs Rio and Maya
Alex Wade

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?There?s just one problem,? said Lou Pobereskin, the consultant neurosurgeon at Derriford Hospital in Plymouth. ?This damn Lyme disease.? The condition was not Pobereskin?s area of practice. I had been referred to him for cervical myelopathy, a degenerative narrowing of the spinal cord, which, at the age of 43, had suddenly made my life miserable. I couldn?t walk properly, suffered a convulsive juddering in my spine and was plagued by electric shock sensations in my neck and left arm.

At the same time, though, Lyme disease was diagnosed, a tick-borne infection common in rural parts of Britain. Lyme generally starts with a distinctive circular rash and goes on to cause flu-like symptoms, fatigue and, on occasion, neurological disorder. Its presence made for a medical conundrum: could the neurological symptoms afflicting me be a consequence of Lyme, rather than cervical myelopathy?

Anyone who has seen Under Our Skin, released in the US last summer and short-listed in this year?s Best Documentary Oscars category, may be tempted to lay the blame with Lyme. To watch this film is to be confronted by harrowing images of people who can barely stand up straight, let alone hold down jobs and live normal lives. The reason, according to the director Andy Abrahams Wilson, is that Lyme is not only a crippling illness but a hidden epidemic. Yet worse, the film alleges that in the US the medical establishment and the insurance industry are in collusion to prevent recognition of chronic Lyme disease.

I?ve had Lyme for more than seven months, but only now, after watching the film, have I started taking it seriously. In the interim I had to focus on what seemed far more threatening: a badly messed-up cervical spine.
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Cervical myelopathy manifested itself while I was surfing at Sennen Cove, near my home in Cornwall. Surfing has been a lifelong passion and plays a significant role in my working life because I write about it. In October last year, my 14-year-old son Harry and I were enjoying clean, 6ft waves when, without warning, the act of paddling my board and jumping to my feet prompted the sensation of an electric shock coursing through my body. It started in my neck, ran the length of my spine and reached the soles of my feet. It was excruciating.

Over the next few days things went from bad to worse. Soon I found that my left leg would drag when walking and wobble uncontrollably when going downstairs. I would wake up with a numb left hand, my neck ached constantly, and convulsive judders as well as shooting pains down my left arm came and went with no warning. Still I kept surfing. I thought the pain would go. But it got worse each time, until I nearly drowned. Surfing, so long a source of bliss, had turned to hell.

By then, I?d already been to my local surgery more times in a couple of months than I normally would in a year. After ignoring it initially, I?d grown weary of a pronounced bull?s-eye rash on my right cheek. My pharmacist thought it was a fungal infection and told me to apply Canesten ? a cream used usually for the treatment of thrush. It made no difference. Nor did hydrocortisone and erythromycin, successively prescribed by two locum doctors who thought the rash was caused either by shaving or by impetigo. Eventually, because of severe neck pain, I turned to Google. I typed in my symptoms and came up with something I?d never even heard of: Lyme disease. Its principal symptoms were a dead ringer for mine.

The GP wasn?t sure about Lyme, but things were clearly awry with my neck. An MRI scan was arranged and a blood test to see if I had Lyme. Meantime, I stopped surfing though turned up once for my usual five-a-side football game. It was a disaster. My left leg refused to co-operate in the act of running, instead jerking haphazardly. I knew now that whatever was troubling me wasn?t your run-of-the-mill sports injury. But I wasn?t prepared for what it was.

?You?ve got cervical myelopathy,? said the GP, who contacted me as soon as the MRI results came through. ?I?m referring you to a neurosurgeon. For God?s sake take it easy until he?s seen you.?

Cervical myelopathy describes both a narrowing of the spinal cord and the appearance of bony protrusions in it. My spinal cord was being squashed so badly that messages flowing through my nerves weren?t reaching their destination. Hence, spasticity in my left leg.

The rot set in after a snowboarding injury 12 years ago. I had a fall, landed on my neck and couldn?t move for ten minutes. Subsequently, spending a few years in the boxing ring and indulging in other high-impact sports wouldn?t have helped and now, as a fit 43-year-old, I had a condition which meant that if I were crazy enough to do anything that could result in sudden stress to my head or neck, I could be paralysed.

As Pobereskin wryly said: ?Think about taking up chess. It?s an excellent game.? But even if I took his advice and lived like a mouse, cervical myelopathy is degenerative. Sooner or later I?d be spending my days in a wheelchair. But all was not lost. Pobereskin, who is among the most respected neurosurgeons in the UK, explained that there was an operation for cervical myelopathy that gives a 30 per cent chance of complete recovery and a 60 per cent chance of general improvement. After that, the percentages were less than rosy, with the operation ? known as anterior cervical discectomy and fusion (ACDF) ? carrying a small chance that I?d wake up paralysed. The worst-case scenario was terrifying, while even its converse still entailed perhaps a year of recuperation. No wonder, really, given the nature of the surgery. An incision is made in your throat, then your windpipe and voicebox are pushed to one side and the troublesome disc ? in my case, between the C4 and C5 vertebrae ? is removed. A titanium cage is then inserted to fuse the adjoining discs together. In short, the spinal cord is decompressed so that neurological signals can flow freely again. I told Pobereskin to count me in.

There was just one problem: this ?damn? Lyme disease. Both Pobereskin and Dr Brendan Mclean, the consultant neurologist based at the Royal Cornwall Hospital who was treating me for Lyme after a positive blood test, had to be sure that the disease wasn?t causing my various neurological disorders before I could have ACDF. I had to have a lumbar puncture, by which spinal fluid was extracted and sent for analysis. If the serological tests revealed that Lyme had got into my spine, the op would have to wait.

It hadn?t. A week before Christmas I underwent ACDF. As I lay in theatre waiting for the anaesthetic, I felt terrified. What if it went wrong? Would I wake up paralysed? If I did, how on earth would I continue to work? And even if the operation was a success, would I ever be able to surf again? Curiously, the theatre manager, Mike Bennett, turned out to be a surfer. I recall talking waves with him and then, just before I went under, saying: ?When all this is over, I?m going to surf a nice right-hand point break.?

That?s surf-speak for my favourite wave, and it felt within reach the day after surgery. My neck hurt like hell ? praise the Lord for the morphine drip ? but, accompanied by two physiotherapists, I walked perfectly. Slowly, yes, but to my amazement and joy, the spasticity had gone. What with having also experienced excellent care from everyone at Derriford, I had reason to feel, as surfers put it, ?stoked?.

There was still a long way to go. Pobereskin warned me that I?d feel ?peculiar? for a while. That?s putting it lightly. Once the morphine wore off the pain kicked in, and there have been days, post-op, of real difficulty. But the latest MRI scan reveals a successfully decompressed spine. Seven weeks after ACDF, it?s too early to say for sure, but surfing again could, in time, be achievable. Except for the Lyme disease.

Having to undergo spinal surgery seemed bad enough and because of it I?ve all but ignored Lyme. I?ve been unwilling to accept that I?m ?ill? as well as mechanically unsound. But as ACDF recedes, the extraordinary fatigue, blinding headaches and all-over aches and pains that I?ve been experiencing seem to be caused by Lyme. As with many sufferers, I don?t recall the tick bite, but it must have happened during one of my daily walks with my dogs, Rio and Maya. Lyme is prevalent in areas with a high deer population and around the time I was bitten I?d been visiting my parents often at their home in southeast Devon.

But as much as deer roam in abundance there, Lyme is controversial. Under Our Skin doesn?t pull its punches, claiming that Lyme is a malady of epidemic proportion and, in America, that vested economic interests are creating a culture of misinformation, one in which scientists are more interested in patents and profit than disseminating research. It?s an attitude that suits the insurance industry just fine, says the film: if the establishment refuses to accept that there is such a thing as ?chronic Lyme disease?, insurers don?t have to pay out for someone who?s got it.

Certainly, there is profound disagreement among the medical profession about Lyme. Everyone agrees that the disease is caused by a tick-borne spiral-shaped bacteria (spirochete) called Borrelia burgdorferi; so, too, is it accepted that the classic Lyme rash ? known as Erythema migrans ? will not always be present. After that, the arguments begin. Conventional wisdom ? and the treatment approved, in the UK, by the Health Protection Agency ? indicates that two weeks of an antibiotic such as doxycycline will be enough to see off Lyme.

Under the Skin suggests that this is often hopelessly inadequate and that a much more aggressive antibiotic regime, entailing intravenous treatment, is required. Where the controversy rages most is in precisely what symptoms Lyme causes, and whether the disease can ever be chronic. For the American medical establishment, the answer is an unequivocal ?no?. I?ve now tested positive three times for Lyme and, despite taking doxycycline for two months, the rash has only ever faded. It?s still there, lurking, and while I?m pleased with the early days of life post-ACDF, my joy is tempered by the pain I?ve experienced latterly and that very few doctors in the UK know anything about Lyme disease.

I now await the results of yet more tests; McLean reckons I may have to have antibiotics intravenously for a month. Going from a life of intense physicality to nothingness has not been easy, but it has had one benefit: I?ve started playing chess again. And my younger son Elliot, who?d never been keen on surfing with me and his brother, is proving a dab hand.

Alex Wade is the author of Surf Nation: In Search of the Fast Lefts and Hollow Rights of Britain and Ireland

lymediseaseaction.org.uk

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dave urry wrote:
I was diagnosed with Lyme in 07 and although I haven?t become as ill as some people I have come across a lot ignorant doctors. I had to find and pay for treatment by myself, with a lot of help from EruoLyme. (Lyme disease forum)
With Lyme being so hard to eradicate the last thing any one needs is to be obstructed in getting the treatment that they need...
The subject of Lyme needs to be discussed openly and fairly so that a clearer view can be seen by all and not just the HPA ?Lyme is not a problem? attitude, as a lot of people are experiencing a terrible life.
February 18, 2010 11:19 PM GMT on community.timesonline.co.uk
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dave urry wrote:
I was diagnosed with Lyme in 07 and although I haven?t become as ill as some people I have come across a lot ignorant doctors. I had to find and pay for treatment by myself, with a lot of help from EruoLyme. (Lyme disease forum)
With Lyme being so hard to eradicate the last thing any one needs is to be obstructed in getting the treatment that they need...
The subject of Lyme needs to be discussed openly and fairly so that a clearer view can be seen by all and not just the HPA ?Lyme is not a problem? attitude, as a lot of people are experiencing a terrible life.
February 18, 2010 10:25 PM GMT on community.timesonline.co.uk
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Lucy Clark wrote:
I was diagnosed with Chronic Fatigue Syndrome/M.E when I was 15 a year after I was bitten by a tick. I am now 24 and they tested my blood for lyme once but it came back negative and that was the end of it. When I mentioned Lyme Disease the doctor didn't even know what I was talking about, so im not very confident that the test was done properly. I have struggled for the past 10 years to find out what is wrong with me, if more was done over here about lymes disease maybe I would know by now.
February 17, 2010 3:37 AM GMT on community.timesonline.co.uk
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Mary Marzillier wrote:
My 30 year old daughter was bitten by a tick whilst on holiday in France in June 2006. Because she did not know what it was, she left it on her body for 4 days, thus allowing it to transmit any infections it was carrying. She became very ill with extreme fatigue three weeks or a month after she returned from holiday. She had realised that Lyme Disease was a possibility from her research on the internet, but her GP refused to accept her suggestion and treated her with 10 days antibiotics.

She never had a bull's eye rash (many people with Lyme never do have a rash) but she continued to be very ill and was eventually referred to an Infectious Diseases consultant some 3 months later.

He tested her for Lyme but the results from the NHS lab came back as equivocal and so, despite a very clear history and symptoms consistent with Lyme Disease, he diagnosed her with Chronic Fatigue Syndrome following a viral illness for which there was no history or other evidence.

The manufacturers of the test used by the NHS state very clearly in their instructions that 'a negative result on this test should not be used to rule out a diagnosis of Lyme Disease'. Yet, this is precisely how it is used by specialists and GPs.

Blood sent to an American Lab specialising in testing for Lyme Disease produced a very strong positive result. This suggests a problem in the accuracy of the tests performed by one of the labs - the consultant dismissed the American lab because 'his colleague said it was no good' - so much for evidence based medicine!

Three and a half years later, my daughter has lost her job, has had a great deal of very expensive private treatment, has missed out on social life and struggled to get better. We have both encountered the disbelief and ignorance of doctors who are happy to diagnose CFS - an illness for which there is no diagnostic test, or understanding of the illness process- but will not diagnose Lyme Disease even when there is a great deal of evidence to support
February 14, 2010 3:20 PM GMT on community.timesonline.co.uk
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Ruth Heasman wrote:
I too have been diagnosed with Lyme after 21 years of having rheumatoid arthritis, probably secondary to the Lyme disease. I am on a combination of antibiotics now and have improved very rapidly in the past few months. I have recenlty been able to come off my main arthritis drug, humira, altogether, and halve my steroids. I hope to be off the steroids as well one day, but after being on them continuously for years, it's a hard task to wean off, even when the arthritis is in remission. I'm sure I'm not the only rheumatoid arthritis sufferer to be misdiagnosed.

I wish the UK's rheumatologists would run the Western Blot (preferably Igenex) tests on their patients. I don't see this change happening any time soon, sadly, but raising awareness can only help!
February 14, 2010 2:52 PM GMT on community.timesonline.co.uk
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Jenny ODea wrote:
Jenny's wish list!

I would love to see more doctors being trained up in clinical diagnosis and treatment for Lyme disease and other tick-borne infections.

I would love to see treatment centres be set up across the UK & Ireland giving specialised support, similar to cancer care and MS.

Sadly, so many people are given the diagnosis of ME / chronic fatigue syndrome or even depression. When the patients asks for Lyme tests through the NHS they come back negative. When the patient receive positives from private labs. they are ridiculed. When patients ask for medication to get them well they are told it's all in the head. PLEASE NHS - patients with Lyme don't choose to be ill.

If anyone has tried living with Lyme they would know that the entire body is affected. From severe headaches, to eye pain, ear and throat pain, bone, joint and muscle pain, to pelvic cramps and bladder pain. These patients NEED your help - please don't turn them away.
February 13, 2010 3:37 PM GMT on community.timesonline.co.uk
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Denise Longman wrote:
About the situation in Holland - which must be similar to the UK, because our climate and vegetation are pretty much the same - well, it's reached the point where 65,000 people have signed a petition, asking their government to acknowledge the long-term treatment needed for the 100,000 Lyme patients. they want more specialised doctors and dedicated clinics. This disease is the "new Great Imitator" and very complex to deal with.

In the UK, surely it's time to do something now, to tackle the problem before it gets worse?


It?s time for some openness from the medical profession, and most of all the government experts. Remember how wrong they were over Mad Cow Disease? In my honest opinion, they are not looking at the best science (9,000 plus papers now in the pubmed database) and seem too complacent.

But anyway, thank you again for doing this article - and let's hope that there are going to be some doctors who, in their busy over-worked lives, might get time to read it and start looking further into the situation.

February 11, 2010 2:52 PM GMT on community.timesonline.co.uk
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Denise Longman wrote:
My story continued!

I replied that it was 4 years ago, on holiday in Scotland, and I suddenly remembered the ticks. He said, there?s nothing in your notes about ticks, but after more talking, he said I probably had Lyme disease, but said it would have to be confirmed by a blood test. I?d never heard of it, and when that test came back a month later, negative, he said I must have had a nasty virus, so would have to rest. And take some mild antidepressants.

It wasn?t until 2004 that I heard from a distant relative that she had been diagnosed with Lyme, and on the phone she told me where to get a knowledgeable doctor. I couldn?t afford the full range of tests, but the ones I did have showed that, after 19 years, I had a very high count of the bugs in my blood, and photographs of dark-field and fluorescent microscope slides showed big strong spiral bugs called spirochaetes. Very like Weil?s disease and Syphilis. But the NHS will not accept these tests. Only private patients can get prescriptions for antibiotics and proper treatment to follow them through the years of trying to tackle the chronic infection. The rest of us are left to slowly get worse with the myriad of body and brain symptoms that affect us, very similar to syphilis in lots of ways.

So the struggle for recognition goes on, with the UK supposedly having the lowest rate of Lyme incidence in the whole of Europe. Most of us don?t believe the official figures ? not when a GP only 2 months ago told one of my contacts, an 80 year-old lady in Hull (quite near to the Yorkshire hot spot for Lyme), that she must have been mistaken because we don?t get ticks in Britain. We don?t even get ticks! What ignorance. If no one is looking for a disease, and the only tests available miss at least 50 % of the fresh cases and most likely 90% of the old ones, then what chance do we have of being diagnosed?

In Holland, the situation has got to a crisis point, but at least their population has become aware, even though thei
February 11, 2010 2:37 PM GMT on community.timesonline.co.uk
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Denise Longman wrote:
Thank you for helping to make people aware of this very misunderstood disease.
I?ve had it ever since 1985, contracted from the ticks on my legs while climbing the Munroes of Scotland. My GP at the time, back in Manchester, didn?t know what had caused my repeated flu-like fevers and gradually worsening fatigue, terrible pain in the head, neck and shoulder, sudden loss of strength in wrists and ankles, hormones all over the place, a lump on my cervix, terrible back pain, drooping eyelids, loss of memory and lack of concentration. I mentioned the sheep ticks but he said, ?Ticks don?t carry diseases?. Various hospital consultants did examinations, took blood and when all tests were negative, looked at me as if I were pretending my symptoms or was getting ?yuppie flu?. In fact that is still my diagnosis, according to the NHS and my PCT, the dustbin diagnosis of ME/CFS, and that?s despite 2 doctors in the UK finally having diagnosed me in 2005 with chronic Lyme disease. The NHS refuse to believe I?ve had Lyme and the idea that I still have it is completely beyond the pail.

How it?s ruined my life, and changed everything that I was hoping for and working towards! I tried to make up my lost times at work by staying late but my contract was not renewed. I managed to write up my master?s degree, which I?d been doing over the previous 6 years in my spare time, and it was always my dream that I?d get better and go on to do a PhD. But whatever I did, however hard I tried, the disease gradually eroded all sense of well being and even changed my personality.

When the doctors don?t know what?s wrong with you, it always ends up with the blame being put on the patient, so I had psychological counselling. However, that did not save my marriage, or help me to get better. The counsellor noticed how ill I looked one week, and I ended up in 1989 with a referral to the Infectious Disease clinic, where the consultant said ?Try and remember, when did you last feel well??.
I replied that
February 11, 2010 10:40 AM GMT on community.timesonline.co.uk
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Mark One wrote:
Interesting article and in a way it highlights both what medicine can achieve when operating in areas which are relatively well understood such as Cervical myelopathy, and its limits in areas which are not so well understood such as the extent and exact nature of Lyme disease. Compared to most other countries in Europe the UK has a much lower reported incidence of Lyme disease per head of population. Given the shared habitat and host animal distribution this almost certainly means that many cases go unreported and the main reason for that is probably the lack of awareness both in the general population and GP population. Of the several GPs that I know for instance, all admit that they don?t know much about the symptoms and treatment of this disease. This can have serious consequences as there is evidence that if not treated promptly it is much harder to eradicate. This problem is compounded by the current guidelines which state that a relatively short course of antibiotics is sufficient to cure most cases despite there not being the full depth of research available to make such statements definitive.
February 10, 2010 8:51 PM GMT on community.timesonline.co.uk
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