This is a diary about Chronic Lyme Disease. Merely stating those three words in a row will have some Kossacks foaming at the mouth strangely enough. Its also called Post Lyme Disease Syndrome and calling it that somehow makes it less offensive.
The plain truth is though that a significant percentage of people suffer from this ailment and the american medical establishment (as opposed to medical practitioners) would like you to shut up and ignore them.
Why should this concern you? Because according to at least one doctor Lyme disease is the fastest spreading disease after HIV.
(more below)
Lyme disease is a horrible affliction. Its symptoms can include a rashes covering multiple parts of the body, loss of muscle tone in the face (bell's palsy), severe headaches, neck stiffness, shooting pains , heart palpitaitons, dizziness, severe joint pain, intermittent arthritis, severe joint swelling and pain, shooting pains, numbness or tingling in the hands or feet and problems with concentration and short term memory
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There is no controversy that Lyme disease exists. Nor that testing for Lyme can produce false negatives. In fact the serious problems as well as the controversies are caused by the fact that lyme can go undiagnosed for years and may have caused permanent problems by the time it is diagnosed, if it ever is.
So what are the controversies and why?
The first is the very definition. Because it is not one hundred percent detectable there are people suffering from the symptoms of chronic lyme disease (in this case PLDS is a more accurate term) who have never been diagnosed with lyme. Doctors cannot be sure if those symptoms are related to lyme disease at all. In fact even diagnosed victims of lyme were for a very long time written off as hypochondriacs and still are today by some. Most of the medical community seems to have finally come around to the realisation that there is indeed a problem. For many however it indeed does exist. The confusion is not in that there is a problem. It is in the causes of the disease/syndrome and how to diagnose and treat them.
The second is, of all the silly things, the phrase "chronic lyme disease". The IDSA, a very politically powerful organisation has been waging a very expensive battle against the victims of CLD or PLDS. The IDSA was sued by the Attorney General of Connecticut for having significant conflicts of interest in its panel on Lyme disease and settled by agreeing to review its Lyme guidelines. Why spend hundreds of thousands of dollars rather than simpy review your guidelines or perhaps simply do the research? You would have to ask the IDSA that.
Why should you care? Because a very significant number of americans are ill and have been told for a very long time they're either hypochondriacs, liars, or suffering from some other disease that cannot be accurately diagnosed. Considering that the best Lyme tests available are not 100% accurate (even with multiple tests) that means that a small percentage of people who catch lyme disease will go undiagnosed. It also means a recurring or drug resistant form of Lyme may be infecting these patients who then have to listen as they are told they are making it up. Much like chronic fatigue and the hiv community were. It could indeed be that Chronic Lyme/PLDS is caused by damage Lyme does to the immune or neural systems. We simply do not know.
Why is it such a big deal? Because Lyme can be devastating. Some victims of lyme are never treated and overcome the infection on their own with few or minor symptoms. Others however have their entire lives devastated. Lyme can take a happy, healthy person to the point they cannot work, are in constant pain, face depression and eventually lose everything they value.
So whats' the controversy? Medicine will find the cure in time.
So one would think anyway. But the medical establishment, more specifically the IDSA, has taken an entrenched adversarial position with lyme sufferers. When you consider that they petulantly dispute even the name of the affliction you have an idea of what the victims face. People who can be bedridden, in chronic pain, unemployed are expected to prove to a supposedly scientific organisation and community that they are indeed.. sick. Imagine if you would going to the doctor and complaining of chronic pain and weight loss only to be told you arent actually sick. If the disease were named cancer or Aids everyone on DK would be up in arms. Of course during the Reagan administration that is exactly what happens. (GRID victims, now known as HIV victims had to fight the medical and political establishments merely to have the deadly disease adcknowledged). Change the name to lyme and... a whole new story.
And heres the Irony. Chronic Lyme disease/plds may well be due to Immune system problems or neural problems related to lyme. Chronic lyme itself may well be caused by a resistant form of Lyme. We do not know. And were it up to the IDSA's original panel we may never know. This scientific organisation has literally been fighting to stop scientific research by claiming the disease doesnt exist and that Lyme itself should only be treated with a common antibiotic.
This is nothing new for the medical industry. For decades it put up the pretense that the safest place you could be was a hospital. Now we know about MRSA and the increased danger of infection hospitals cause and there is an industry wide effort to combat those.
Should lyme sufferers be required to wait and suffer while officialdom comes around? I would think not. Were one of my family to have suffered from GRID (now known as AIDS) i would have been storming the ramparts.
So what do Chronic Lyme victims want?
Ive talked to many and one, a Kossack and friend of mine stated it clearly eloquently and simply in a couple recent emails.
To quote her:
If folks are going to claim that they are scientific, then fricking USE SCIENCE to do so, damnit! Some of us are really suffering out here.
i actually don't think medicine doesn't give a damn exactly - it's just being ignorant.
If we're standing for science, then let science stand on its own and really prove what it says it proves. there is far too much extrapolation going on with the very limited studies which IDSA claims to be pivotal. and they can't just disregard what isn't convenient to their arguments.
The sufferers of Lyme dont want the medical establishment to take up homeopathy or herbal medicine. They dont want the IDSA to make up treatments or agree to what the most extreme people wish. They want Science. They want an acknowledgement that there is something wrong. And for a green light for researchers, scientists and doctors (and yes folks there are Doctors who find the IDSA's behavior appalling) to do the research, find the causes and treatments and help them.. without fear of repercussion for doing that science.
They want Science folks. And isnt that what medical science is supposed to be all about?
Update for clarification: This diary is about Chronic Lyme disease or PLDS. Lyme disease has finally been widely recognised. Now the medical community is fighting tooth and nail to avoid recognising PLDS or Chronic Lyme disease.