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Kathryn Maroun: Stage 3 and me, an update from the front lines in the battle of her life with Lyme

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“Plato says that the unexamined life is not worth living. But what if the examined life turns out to be a clunker as well?” —Kurt Vonnegut, “Wampeters, Foma & Granfalloons”

When I look out the window of the plane onto the vast nothingness below, I wonder where all the people went?

I mean their bodies, when they passed away?

So many people have lived before me, and yet there is no sign that they ever existed. I conclude that they are the dust that I wipe off the dresser from time to time. We are all so busy doing and gathering that we blast through the years before realizing that middle age has struck us down in our prime.

Each day is a blessing, a kernel of potential and promise. Yet we plow through them as if through a bucket of buttered popcorn while we wait for the movie to start. I bet you can’t even remember where you were and what were you doing on Feb. 19, 2013?

Intrigued, I decided to poll some of my friends. Thirty percent could not remember what they were doing five days ago. But the ones who could remember reported this to me: Moirajeanne from Pennsylvania painted the front of her shop, From Here To Timbuktu. Bill from California was “taking care of some business affairs.” Michael wanted to know what he had missed. Barbara was in Rolla, Mo., “writing like crazy, catching up on an extended deadline.” Was this a good use of time?

You may be surprised to learn that people spend more time in bed than they do participating in sports and leisure activities. This doesn’t seem right. I would much rather be on a river in the Gaspé region of Quebec, angling for Atlantics, than sawing logs.

“Life is problems. Living is solving problems.”—Raymond E. Feist, “Silverthorn”

So are you wondering what I was doing on Feb. 19, 2013? Not likely, but I’m going to tell you anyway. I was at yet another doctor’s appointment getting all “pilled up.” Definitely a waste of my time!

I battle Stage 3 neurological Lyme disease and co-infections, a chronic affliction that will result in an early death because of improper treatment of the infection(s) that are transmitted by the bite of a single tick.

Can you see the tick? Photo courtesy of Laura Johns Moore

You may be surprised to learn that in most places globally (and yes, it is a global plague) it is illegal to treat this vector-borne illness with more than four to six weeks of antibiotics. A slow, tortured death is what will follow partially treated Lyme, as the spirochetes eat me from the inside out. This is, after all, the cousin to syphilis. Corkscrew spirochetes permeate every organ in the body.

It is madness that I was given a year’s treatment for acne with the same drugs that are illegal to prescribe for the treatment of late-stage Lyme disease (the same antibiotics used for treating syphilis). This is, after all, the preferred treatment against the plague of our time. It is beyond comprehension that I would be denied access to the only hope I have of getting well.

Kathryn injects herself in a port that has been inserted into her body. Photo courtesy of Kathryn Maroun.

I will never forget the day my doctor wagged her bony finger in my face, saying, “I’m not giving you antibiotics. Your body will look after this.”

She. Was. Wrong.

Meanwhile …

Some people did make good use of their time on Feb. 19, 2013. They met in Virginia to pass a bill that would make it possible for doctors to treat tick-borne illnesses without fear of prosecution. This (along with inadequate testing) is why Lyme is underdiagnosed and improperly treated.

Bill 1933, aka the Virginia House of Delegates Senate Lyme Disease Testing Patient Disclosure Information Bill, states that a negative Lyme test does not mean that you don’t have Lyme disease. This information will make it possible for doctors to treat patients based on symptoms. In some states it is even possible for doctors to treat Lyme for longer than four to six weeks without fear of losing their licenses, as so often happens elsewhere.

That is why Lyme is underdiagnosed and improperly treated. That is why I’ve spent the last three months holed up in a fleabag hotel off the highway in California, rather than being surrounded by friends and family at my home in Bermuda.

You see, California, Connecticut, Massachusetts, Minnesota, New Hampshire and Rhode Island are the only states that have changed laws to make it possible to treat late-stage Lyme disease. Before these new laws were penned, doctors could be thrown in jail for giving Lyme patients more than six weeks of antibiotics. Their medical licenses could also be revoked. If you or a loved one lives outside this safe zone and are dealing with untreated Lyme disease, you will suffer a similar fate to all those who came before you.

Kathryn in happier times in Mongolia. Photo courtesy of Kathryn Maroun

“Human beings are so destructive. I sometimes think we’re a kind of plague, that will scrub the earth clean. We destroy things so well that I sometimes think, maybe that’s our function. Maybe every few eons, some animal comes along that kills off the rest of the world, clears the decks, and lets evolution proceed to its next phase.”—Michael Crichton, “The Lost World”

Bugs that bite are nature’s dirty needles. The politics of Lyme disease is a cancer.

Make good use of your time today and get up to speed on this important issue. It may save your life or the life of someone you love.

You may be moving to the Golden State. Good fishing here.

Editor’s note: This article is from our friends at Women’s Outdoor News. Kathryn was misdiagnosed for many years before Lyme was identified as the problem.  I’ve heard this too many times. Kathryn’s original article appeared here on how she was misdiagnosed. 

 

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