POZ Community Forums

Main Forums => Living With HIV => Topic started by: alisenjafi on October 09, 2006, 02:41:12 pm

Title: An ode to health and ignorance
Post by: alisenjafi on October 09, 2006, 02:41:12 pm
Here is an interesting article on another chronic disease and what they face
English > Radio Programmes > Vox Humana
An ode to health and ignorance
by Chris Chambers
Click one of the icons to listen to the story onVox Humana
What is it like to have a chronic illness? To have a disease which is very difficult to treat and to diagnose and which isn't even recognised in many quarters of the medical profession? Welcome to the world of Chronic Lyme Disease. A riddle, wrapped in a mystery, inside an enigma.
"You feel as if you're in another compartment. You feel different. It's a very odd feeling. You feel as though you're not quite in the human race sometimes."
     Elizabeth Rice. Chronic Lyme Disease sufferer
Lyme Disease is caused by the bite of a simple tick, injecting into the bloodstream the bacterium Borrelia and probably numerous other parasites. The incidence of those contracting the disease has been increasing dramatically in recent years and it's known that swift treatment with antibiotics is enough to stop it in its tracks.
What is causing the medical controversy is the course the disease takes if treatment is not so quick. Many say that heavy treatment at any stage is enough to kill the bacteria and that subsequent blood tests prove them right. The reality is far less clear cut.
"You almost go into a deep despair sometimes and I honestly thought to myself that I can't go on anymore. Some of the symptoms are so horrendous you can't explain it to people who haven't suffered this illness. They don't understand you. You look fine, they say. In fact, you feel dreadful. Your head is bursting. You can't think straight. Your bones and muscles are aching; you've got pins and needles and numbness. It's just horrendous. It really is."
    Cecylia Malenchek
Cecylia Melanchek has had the disease for 13 years and as with many sufferers of the chronic condition she was not immediately diagnosed. It has led to many years of pain and mental anguish. Her experience with doctors hasn't helped. Her GP told her it was all in her head, offered no treatment and asked her how she got on with her parents. The experience seems to be a common one.
"I was offered anti-depressants and that was just the end for me. I said there's no way I'm taking them until someone tells me for definite, someone that knows about the disease, that I haven't got it. Then I'll take the anti-depressants but not until then."
    Ann Maher
The problem with the disease is that it's a relatively new parasite on the scene. The bacterium that causes it was only discovered 30 years ago and so there's still a great deal to be revealed about how it works and how effective treatment is. What is known is that it's a very tough and resistant bacterium and that it's recently been classified as a potential bio-terror agent by the US government because of its incredible abilities to escape our attempts to kill it.
Dr Andrew Wright is an authority on Lyme Disease and he says that the high wall that patients are facing is a phenomenon that goes back many years.
"That's the history of medicine. You look back at the illnesses called psychological, tuberculosis, epilepsy, schizophrenia, all thought to be psychological until the cause was found and I'm sure that in the not too distant future the same will be seen in illnesses like chronic Lyme. Once we understand things they become respectable but in medicine we do this, we have this defence mechanism whereby, if we can't explain something one way of dealing with it is to make the patient the problem. It's their problem then and not ours. And that gives us an easy way out."

This is a view shared by one of the world's leading authorities on Lyme Disease Professor Sam Donta, who's treated thousands of cases from his base in the North-East United States where the disease was first discovered.
"The physician has been educated to think about Lyme in very crisp, finite terms. And they've been taught that we don't know what it is but that it's not Lyme. So the patient is then left dangling. Probably having Lyme or something like it that we haven't discovered yet and getting emotional support up to a point or the usual which is 'this is stress, you're depressed, take an anti-anxiety pill, see a psychiatrist and goodbye'. I tell the patient sometimes that if you wanted to make this up you could, but then you're making up the same story that hundreds and thousands of patients are also making up."

There are still major and sometimes bruising fights taking place within the medical profession about the nature of the disease. Does Chronic Lyme Disease exist or not? All the evidence suggests it does but as the arguments continue one thing remains the same - the sufferers are left dangling, knowing that something dramatic and debilitating has happened to their health but often unable to get the support and help needed to overcome it. 
But that's the history of medicine!