Lyme disease: ‘I knew whatever was troubling me wasn’t a sports injury’

UK’s Times reports the Lyme dilemma exists in Britain:

 Alex Wade, a surfer from the Cornwall Area, had been experiencing neurological Lyme symptoms in the form of severe spasms, spasticity and headaches.  Even when tested positive for Lyme, his neurologists were all too quick to diagnose him with cervical myelopathy.  As a result they recommended and performed an unnecessary spinal surgery (ACDF),

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?

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.”

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.

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.

It is disgusting how quick doctors are to perform dangerous and painful surgeries.  Of course, Britain’s National Health is a non revenue generating service so financial reasons can not be the motive.   Alternatively, physician’s lack of awareness and understanding of the disease must play a bigger role.

I personally, had been very focused on educating the general public of the existence and threat of the disease.  I had believed patients were being misdiagnosed by doctors, insurance companies, and pharmaceutical companies who had too vested a financial interest. This article and the actions taken by these British neurologists have altered my views and raised some doubts.

Regardless, education and awareness still remains the best weapon for combating Lyme disease.

Complete Times article at: http://www.timesonline.co.uk/tol/life_and_style/health/article7016850.ece

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~ by Rob on February 9, 2010.

2 Responses to “Lyme disease: ‘I knew whatever was troubling me wasn’t a sports injury’”

  1. thanks Alex

  2. Thanks, Alex – hope you are getting well. I am 66 yo F and fellow lymie -in Minnesota, a tick hot-spot. All the symptoms, all part of lyme – but who knew? have had several spine surgeries, the last after I encountered the nasty bugs (probably 10 years ago). Then nerve/muscle pain, fatigue went over the top. NEVER thought to question the connection! 10/2011, finally diagnosed w/ lyme, have a doc who is LLMD (lyme literate) and does integrative meds. Failed doxy, so was switched to Samento and Banderol (really kicks butt!), w/ citrus pectin as a chaser. Plus: small bit of caffeine w/ low dose magnesium for migraines, turmeric and ginger for muscle/nerve pain…etc. Need to get rid of gluten, have cut out many activities (am a writer yet eyesight is also effected – that’s hard). And then the psych effects… I could go on…glad I live in community.

    The battle re chronic lyme confounds me, though many (most?) docs/researchers have historically not been open to patients’ insights. And then there are the drug company lords! …
    I could go on.

    Thanks for this site . It’s good to hear what’s up across the pond. We are in this together , for support and resources. And to encourage others to let their voices be heard

    ciao! Katy

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