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Robert Hitt Neill Column

Lyme Disease is real, not just in the head

I received the saddest letter recently from a lady who lives in the Mississippi Delta: paraphrasing, she says, “I desperate for an expert on Lyme Disease, and I read a magazine article you wrote, or one that referred to you as a knowledgeable Lyme Disease victim. I have been to doctors in Memphis, and even went to Little Rock to talk with the Centers for Disease Control, but they insist that Lyme Disease is not a problem in the South. I am the mother of five young children, but now I can’t work around the house, cook, go to church or the grocery store. My life is falling apart but I can get absolutely no relief. I had a tick in my hair from a canoeing trip this summer and I have all the symptoms of Lyme Disease, but cannot find a doctor who recognizes or treats it. Can you help me?”

Well, fortunately, I could refer the lady to a physician, in another state. She not only had Lyme Disease, but also another tick-borne ailment, Babesiosis, which causes red-blood cells to pass off before they’re half-grown, as I understand it.

She was started on heavy doses of antibiotics, and within a week suffered a Herxheimer Reaction, meaning she felt worse instead of better, simply because her system had been defeated by the illnesses, but once she got enough antibiotics into her body, her immune system recovered and began to war with the spirochete bacteria that was causing the problem.

Typically, she will feel much better by the time this column comes out, and will be on the road to recovery, although few Lyme victims ever completely recover. The spiral-shaped bacteria actually screws itself into the human cell, and is almost impossible to knock completely out, if the victim has had the disease for more than a couple of months.

Folks, it’s out there: Lyme Disease is alive and well in the South, and has been for at least 25 years, though AMA and CDC literature would lead one to believe that it only exists in the northeast.  

I contracted Lyme myself, as well as Babesiosis, in 1978, but went undiagnosed until 1989. I’ve had over 21 broken bones and another dozen or so major joint injuries, so I was a prime candidate for Lyme Arthritis, which was logically dismissed as the result of too much self-abuse to my body.

During the winter, when cold made it worse, I was taking two to three dozen off-the-shelf painkillers a day, just to make it through the day. Yet after being treated for Lyme Disease for a year, I now only occasionally need an aspirin for broke-bone aches. Treatment for Lyme completely changed my life.

I was fortunate that I had no neurological damage, but in talks to doctors and hospital staff on Lyme Disease, I’ve used that threat to get attention successfully.

I was speaking to Grand Rounds of three large hospitals in Houston, Texas, and the host doctor asked a juvenile arthritis specialist (which Lyme was originally misdiagnosed as) to introduce me to the several hundred doctors in attendance.

Instead of a simple introduction, she did a 20-minute slide show presentation on Lyme arthritis, which put most of the medicos to sleep. By the time I finally got to the podium, I realized that I had to do something drastic to get my audience back.

I started out with, “You’ve heard that I am not a physician, but I am a Lyme Disease victim, and I’m one of the luckiest Lyme victims anywhere, because I have absolutely no – WAAHF!  WAAHF!  WAAHF! – neurological damage whatsoever.”

When I made the exclamations, I jerked my head and hand sideways a few times. Brother, did I get their attention!

I calmly delivered the rest of my presentation, and when Grand Rounds was over, a half-dozen doctors came up to say, “You know, right at the start of your talk, you did something that COULD be construed as neurological damage….” One doc even sent me a letter saying that.

Yes, Virginia, we do have Lyme Disease in the South. Then the same week, I got a call from the father of a ten-year-old in Minnesota.  Same story: couldn’t be Lyme.  But the family flew all the way across the country, and now the little girl has been diagnosed and is being treated. Her life will change too, thankfully.

Lyme can be cured with antibiotics if caught early, in the first few months. After that, it may take a year of antibiotics to fight it. Diagnosis is the key.  It’s here!