``It's the symptoms that matter''

Home (Main Menu)

LETTER TO THE EDITOR OF THE NEW YORK TIMES, 6-24-01, By Elizabeth

``My experience flies in the face of this article. [Mark S. Klempner and others, New England Journal of Medicine, 6-12-01]

I am an R.N., a Ph.D., an incredibly proactive, my-body-is-a-temple person who tries to stay informed about the important health issues that affect her and others, who exercises, doesn't drink, doesn't smoke, and who is a vegetarian.

When I gave a paper at a college on the border of NH and VT two years ago, I had no idea that a nearly invisible poppy-seed sized critter could land on me, anesthetize my skin, and, without my ever knowing it, infect me with any combination of scores of tick-borne, disease-causing microorganisms.

Within a few weeks, I had a rash and some symptoms. When I visited my parents in NY just after the rash emerged, I asked my father to see if he could find a Lyme rash picture on the web. He returned with an announcement that he could find no pictures and with an article entitled "Lyme Disease Paranoia."

I read it. I believed it. It was wrong. And I was terribly wrong! As I tried to attribute my increasingly worsening symptoms to writing too many comments on my students' papers, to overwork, to this, to that, to the other thing, I got worse and worse, to the point of sitting on my sofa for days because it hurt to do anything else, even the dishes.

When, sitting on my porch with my dog because I was in too much pain to walk him, a neighbor came over and inquired, I mentioned my pains to him, who,, unbeknownst to me, had worked in the services with Lyme patients.

Jim confirmed my initial suspicion and proclaimed that I had a full-fledged case of Lyme disease. Within days -- after researching this on the web (and finding several bull's-eye rash photos that mirrored mine), after talking with the Ohio Dept. of Health, with local doctors, with national experts on Lyme, and with the local Lyme specialist -- I was diagnosed with a classic, roaring case of Lyme disease.

Within a couple of months, I had a positive blood test, as well, but, as LLMDs know, the tests are not reliable. It's the symptoms that matter. The test simply confirmed what we already knew, but, had it been negative, the diagnosis would have been just as valid.

I NEVER saw a tick on me.

My doctor, who has treated Lyme patients for years, says one can be infected easily and quickly. I was treated within weeks of contracting the disease, and we thought I'd be cured within four months.

That was almost two years ago. I have been a proactive, informed-but-not-obsessed patient. I have done "all the right things": rested a lot, exercised, started a rigorous vitamin regimen, took all my antibiotics on time, became informed about what I needed to do while also not becoming immersed in this disease. And I still have symptoms.

However, thankfully, with treatment, my symptoms have continued to subside. I am working full-time again. I am writing, thinking, moving. I feel close to the end of this ordeal.

But it raises my ire to see my experience and to see people like me -- human beings whose lives, careers, livelihoods, creativity, and even whose childbearing plans are uprooted because of this disease -- be summarily invalidated and dismissed by the misinformation being officially perpetrated by those who claim to understand Lyme disease.

My symptoms responded directly to medications, to changes in therapies, etc. Of course, all of the other measures helped, but I could not have been cured without the treatment I was so fortunate to receive.

Thank gods and goddesses that my doctor and pharmacist knew that I needed multiple antibiotic therapies and that I needed to change drugs every few months or so.

The organisms are resilient; they change with the antibiotics. So infected people need frequent changes, need multiple therapies -- especially because "Lyme disease" cannot be reduced to one micro-organism. It is the convergence of several feisty bugs which have defense and reproductive symptoms that, as my brother said, sound like Aliensmeetsstealthbomber.

I responded positively to multiple, regularly-changing therapies. People who purport the a-few-weeks-are-enough treatment philosophy. . . . well, wouldn't it be wonderful were they correct!

Lyme disease paranoia? YOU BET! We ALL should have it. Those of us who have been forced to learn about this disease the hard way, WE are the ones who know just how devastating this disease can be and often is.

If you contracted it, and it resolved spontaneously, LUCKY YOU!!! But please don't use tunnel-visioned reporting to invalidate the truly devastating reality that thousands of people and animals (our pets contract this, too -- and they can't explain their symptoms to us!) blindly stroll into every year.

It's this kind of misinformation that makes it so difficult to find validation as a Lyme patient -- and crucial treatment for Lyme disease. It's exactly this kind of tunnel-visioned information that prevents so many people from truly finding the light at the end of their Lyme disease fight.

I was so lucky. I had the rash, enough symptoms to be a classic case, a positive blood test, friends who helped me research this when I was too sick to even being to be able to research it myself, a Lyme specialist who is very informed and compassionate, a wonderful insurance carrier, and a pharmacist who was also very informed about the disease.

As devastating as this has been, I consider myself incredibly fortunate because I had this knowledgeable, understanding support system. Because of them and the treatment they enabled, I do see the light at the end of the tunnel.

Many people who contract Lyme disease need treatment for years and years. How can anyone especially doctors who allegedly work to help and cure people deprive sick people of the very path to that light??

Everyone in this country should know about and fear Lyme disease.

If it takes paranoia to help educate people and prevent the continued spread of this plague, then Go, Lyme Paranoia! That's the kind of paranoia we need, the kind that's grounded in FACTS and in balanced perspectives and information, the kind that inspires people to take preventative measures, to be proactive if they get Lyme, and to be supportive of anyone they know who has it.

Shame on ANYONE who perpetuates ignorance and a false sense of security and dismissiveness about this very influential infectious disease problem in this country. ''

Lyme Letters -- Top -- Home -- What's New