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April 29, 2006

BehindTheMedspeak: 'What's Bugging You?' — Nick Penning on Lyme Disease

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About three years ago I found a tick on my right ankle; never been bitten by one.

Took it off and forgot about it.

Three days later, a little red spot developed near where the tick had ended his/her life.

It got a little bigger and bigger… to the size of a quarter, and then the inside of the red spot faded, leaving a red circle around a black dot in the center.

Meant nothing to me, nor to the docs at Kaiser Permanente, who said it would go away, because Lyme Disease (which I'd only heard of and had no suspicions about) was caused by a tick that's the size of a pin head.

So, off to a car trip to the Midwest to visit our families.

Each day I got weaker and began to hurt in my joints, along with flu symptoms.

By the time we got back, after minimal medical treatment from off-the-highway emergency rooms, I was sick as a dog.

The long and the short of this is, I've been partially disabled by the effects of Lyme Disease since July 29, 2003.

Doctors here in Arlington, at the University of Virginia, National Institutes of Health, Johns Hopkins, and the State University of New York at Stonybrook all said, "You don't have Lyme, you've never had it; just go to a psychiatrist and get off some of your psych meds."

Most said, "Go home; you'll get better on your own."

Why write about this today?

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Because I hurt so badly that I can't concentrate or generate the stamina to do much research for a decent column this week, so my apologies for that.

Also, I'm following the advice of my eldest brother, a pathologist, who also was skeptical of my story, until he did more research and followed my symptoms as I talked and e-mailed with him over the two weeks of that car trip in August of '03.

By August 18, I had developed a second, much larger, deep red circle on my abdomen.

"'Nick,' he said, 'you're the first Penning to have Lyme Disease. Now, since you're a writer, you must keep a journal of your experiences, so more docs can get educated about this disease, as I was after following your case.'"

Larry explained that all docs are taught that Lyme Disease (named for Lyme, Connecticut , where the disease was first diagnosed) is generated by a deer tick, which grows no larger than the head of a pin.

But they aren't told that an engorged female adult deer tick can be as large as the one that bit me, and they're further taught that if no lab tests are positive for Lyme, then you don't have it.

It turns out that Lyme Disease is among the most hotly contested diagnoses in the medical profession.

The Lyme bacterium is a spirochete, like syphilis, and burrows into your central nervous system, and eventually into nearly every organ in your body.

Since most victims never see the tick, they are faced by highly skeptical physicians, who are often at odds to explain why their patient is getting weaker and in more intense pain and rapidly developing arthritis.

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If treated with high-power antibiotics within the first 10 to 14 days, the disease is usually killed at the site of the bite.

However, after that, the Lyme spirochete burrows deeper into your body, causing intense pain in all of your joints, neck, head, muscles and bones, in addition to intense, uncontrollable jerks of the arms, legs and upper body.

I was treated about a month after I'd found the tick, by an infectious disease specialist in Fairfax.

He was not troubled that Lyme bacteria had not been found in any of my many blood tests; my story indicated to him that I had a classic case of Lyme.

He gave me intravenous antibiotics for about six weeks, after which my symptoms slowly disappeared.

That was early October of 2003.

Around Thanksgiving, my body again began to jerk uncontrollably; the only outward expression of the disease.

Soon, the pain returned. I went to the infectious disease doc who'd treated me, and he said he'd never seen a case of recurrence of the disease; he was unwilling to admit that a recurrence could possibly have happened to me, and told me to see a psychiatrist.

I went untreated for five months, as I searched out doctors at the institutions I mentioned earlier.

Same answers, "You don't have Lyme; I don't know what you have, but you'll gradually get better," or, "We don't know what you have; we might in 20 years."

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Finally, my neurologist, Dr. Amy Stone, whom I was seeing in an attempt to find the cause of the jerks, referred me to Dr. Leila Zackrison of Fairfax City.

She, too, understood the disease and also treats patients based on their description of their symptoms.

But because she recognizes and treats patients who have recurrence of the disease, Dr. Zackrison is considered a pariah by many other physicians, such as my first infectious disease doctor.

Consequently, earlier this year her license to practice medicine was challenged and she had to defend herself against charges that she was treating a disease that often wasn't present and that she used uncommon treatment methods.

In my mind the woman is a saint, sticking with you and unafraid to refer you to other physicians, when she reaches a point in your treatment that she feels she is "missing something" and wants another specialist who might uncover a bit of the mystery, particularly in my unusual case.

She won her case and retained her license.

The doctor who felt he/she knew more than Dr. Zackrison was discredited.

I know this is a lot to write about just one person's experience with what some might see as an exotic, rare disease.

The truth is, Lyme is slowly spreading down the East Coast, now found in the Carolinas, among other parts of the nation.

And while Lyme is rarely fatal, it can wreak havoc on a person that most of his/her friends/acquaintances/colleagues/family are at grips to understand.

So, this long treatise is meant to help others who suffer and help health care professionals understand.

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You can't see the pain or feel the exhaustion, but it's there; and the medical community would do well to listen to Dr. Zackrison, who has staked her right to practice medicine in order to bring treatment and some hope to those of us who struggle making it through each day of our lives.

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Nick Penning is an Arlington freelance writer. Read more by him on his website, www.nickpenning.com. His column, "Penning Thoughts," appears in each edition of The Arlington Connection.

[via Matt Penning, Nick's brother]

April 29, 2006 at 10:01 AM | Permalink


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Posted by: Kia Ren | Nov 17, 2009 12:35:44 PM

I have no idea how I found your blog...many months ago. I'm sure it began with a Google search for something! Since half my brain has been zapped for several months because of Ambien, I'd forgotten about your blog. It occurred to me today to look up "What color are your underpants?" Voila! I found your blog again. Thank you for sharing your experiences with Lyme disease. I'm passing this on to friends and family. Please keep writing great stuff. I love it all.

Posted by: Angela M. | Sep 2, 2006 12:23:00 AM

I've been dealing with symptoms for 15 years. Just got a diagnosis of Lyme from a Dr. in PA. I left a message at Dr. Zackrisons office. Hopefully, she is accepting new patients.

Thank you for writing the article. It touches so many of us.

Jan

Posted by: Jan C | May 11, 2006 10:06:30 AM

I'm sorry that this has happened to you. I also have Lyme Disease, and I too live in the south. However, I believe there is a new version of Lyme Disease here in the south, some people have called it STARI, or Master's Disease. I'm not quite sure what it is, but it seems to be associated with a movement disorder at a level far greater than other varieties of Lyme Disease. Furthermore, it doesn't test positive by blood tests used for Lyme, even though it follows a similar, but different clinical course. Most importantly, this disease seems to take longer than 6 weeks of IV anti biotics. I would be interested in hearing from anyone who has contracted a disease very similar to Lyme, has tested negativly by the current tests, AND lives south of Maryland, AND EAST of the midwest. My email is Wiggs49er@hotmail.com. I am studying this disease, and I need as much information as possilbe. I am hoping to get published in the medical literature. DON't worry, I'm not like Dr. Steere, I believe this is a terrible illness that is not always easily cured.

I wish everyone the best, and keep your hopes high. We will win the fight against this disease:)

Posted by: Geoff Wiggins | May 3, 2006 4:24:19 PM

Many thanks Joe for putting this up.

Fair warning all. That tiny tick can bring a lifetime of pain.

Posted by: mattp9 | Apr 29, 2006 4:03:08 PM

Those are some pretty ghastly pictures. As I first read it I thought it was you writing. Whew. Nasty business.

Posted by: Joan | Apr 29, 2006 11:48:11 AM

My son (only 4 at the time) was bitten by "something" in his ear. We saw a swollen area, but never the tick. Luckily, it was in CT. and the doctor recognized the signs and symptoms early enough to treat with 4 weeks of antibiotics. It left untreated, heart problems can result.

Posted by: Dawn | Apr 29, 2006 10:58:06 AM

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