Lyme: The History, The Controversy, The Consequences

Many of you have asked me why? Why is Lyme so controversial? Why doesn't the traditional medical community believe in Chronic Lyme disease? Why has this illness become politicized? Why are doctors who treat Lyme Disease losing their licences? And, ultimately what happens to people like me who are waiting for the medical community to decide that we are sick, need treatment, and need help?

Here is a fantastic article from Yankee Magazine that came to us via two people: Dr. Lyme and also our neighbor. So, we knew it was worth the read. It is. Please take the time to read it: not just for me, but also for yourself--to protect yourself from this illness.

Some of the text and visuals are not in the online version, so if you would like me to send you a xeroxed copy, please let me know. I am more than happy to do so.

This article sheds light on a illness shrouded in controversy. It teaches us a great lesson about the power of these teeny tiny ticks (the largest ones are .1 inches in size) to wreak havoc on our own bodies and the medical community as a whole.

This article is chilling to me. Where does this leave patients like me? A very wise doctor recently told me that the New England Journal of Medicine recently published an 'anti-Lyme article'. They have the 'facts' right--based on what we know about Lyme disease, which is very, very little because there is no funding or support for research. BUT, they fail to see that sometimes we have to treat and deal with ambiguity BEFORE we have all the answers. (I am paraphrasing him here)

We treat our pets better for Lyme disease than we do humans? This should be alarming to us all.

Thank you for reading. I promise you will be 'enlightened'!

Trouble in Paradise: One Woman's Journey trhough Lyme tick country takes here deep into the place where medicine and politics collide. by Edie Clark


http://www.yankeemagazine.com/issues/2007-07/features/lymecountry

If you do not want to read the full article, I cut a pasted a few paragraphs that capture how the cotroversy affects patients and doctors as well as how the traditional medical community views Chronic Lyme. All text taken from Yankee Magazine's website.

The mysteries of Lyme haunt her: "One of the things that really puzzles me is that so many doctors refuse to know about Lyme. I was in touch with one doctor, and he and his family all had Lyme. I called him up and he said, 'I don't want to talk about this on the phone,' and he invited me over. I felt as if I were in a Kafka novel. I've never felt anything like this, the strange energy that surrounds Lyme. I asked him about it, and he talked about the denial that exists around Lyme. And then he told me that there was a writer for Newsday who started investigating, and he traced the whole thing to a little island off Long Island where the United States has a biological factory, and that this Lyme bug was an escapee."




Lab 257 has been shut down, but other labs on the island perk along. If infected ticks did escape from this island, they've long since done the damage and nothing can stop them now; Borrelia burgdorferi is out and about, doing its job, making people sick.

And as it spreads, physicians and researchers continue to squabble among themselves: Some say that long-term antibiotics are the only way to treat Lyme, while the more conventional among them advocate only short doses of antibiotics -- and believe that if a patient needs a longer protocol, the illness must not be Lyme. Insurance coverage is often denied.

One way to stop an epidemic is to redefine it. Recent guidelines issued by the Infectious Diseases Society of America (IDSA) have narrowed the disease's diagnostic criteria so tightly that it's hard for any chronically ill Lyme patient to fit the profile -- leaving thousands of people robbed of an answer.

And one way to control an outbreak is to determine which doctors can treat it and which ones cannot. According to the Lyme Disease Association, since the early 1990s more than 30 Lyme specialist physicians in 10 states have been brought before state medical boards under charges of overdiagnosing Lyme and overtreating with antibiotics. This, of course, is a chilling development for doctors who want to treat Lyme patients.


Clearly, the new diagnostic and treatment guidelines and the reduction in the number of physicians willing to see chronic Lyme patients will have a huge impact on the disease's future -- and the lives of the people suffering its ravages.

I realized in talking with these people that my own Lyme disease is ongoing. At the time I was diagnosed, not only was I so unfamiliar with the disease that I didn't recognize the symptoms, but I was also confused by the massive amount of contradictory information available. And I was scared of what it all might end up costing. I'd already spent $731 out of pocket on tests and treatments. So I've ignored many of the painful problems I've experienced since my visit to that island paradise five years ago. Today my health hangs in the balance of a government and a medical system apparently unwilling not only to care for their constituents and patients but perhaps to take responsibility for an epidemic as well -- a scourge that I am convinced can be traced to a scruffy little island at the eastern end of Long Island Sound.

Thank you for reading!

Blessings,

Emily