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Chronic Lyme disease is just a name

When I was very sick with chronic Lyme, the scariest thing was not the agonizing pain in my skin and muscles, not that my shin skin had deteriorated into raw meat, and not even that I had trouble walking and could barely talk without stammering.

The scariest thing, the thing that blew my mind was that the infectious disease doctor I turned to for help REFUSED to treat me for Lyme. I had tested positive, yet she stood there shaking her head, insisting that I must have MS instead. She basically blew off the positive Western Blot and ELISA tests.

The doctor breezily observed my skin rash, which had become so severe that I had developed a staph infection that put me in ER, and told me, "You are too late."

Huh? I couldn't think very clearly because of the brain fog, but this response just sounded utterly wrong to me. I was speechless.

She then dashed off a prescription for corticosteroids, which she said was my last hope. I took them, and the Lyme bacteria multiplied rapidly. Needless to say, my condition went from bad to worse.

I was in terrible shape when I staggered up to the window in her clinic and requested my medical files. My legs could barely hold me, and my hands and voice were just as shaky and weak. I had begun seeing a naturopath who advised me to retrieve my records from the ID doctor's office and take them with me. He treated me for Lyme with antibiotics and a host of supplements to support my liver, kidneys, my whole body. He also informed me as gently as he could that Prednisone, the steroids I'd been prescribed, are contra-indicated when the Lyme bacteria is underlying. I must have seemed to him like the walking zombie that I felt like. Looking back, I wonder if he ever thought that I was too late as well.

As it turned out, I was not "too late." I was at the wrong doctor. An ignorant doctor -- one who needs to be educated about Lyme and doesn't even know it. I got better. Lyme symptoms are still a part of my life, and I still watch my health like a hawk. It has been a lot of work, but I'm stubborn and lucky and willing to work hard. I have no doubt that today I'd be very ill, confined to a wheelchair and on permanent disability, if I had listened to that ID doctor. Instead, every day is a miracle. I've achieved some of my wildest dreams, and I share my life with friends and family who are more precious than gold.

Now, of course, I also realize that my story is unfortunately not unusual among people with Lyme.

People who get better, even if it's only 90% better, often turn their heads and never look back. Who can blame them? But I don't want to forget. If it could happen to me, it could happen to anyone I love, my brilliant nieces and nephews, my mother, my life partner, my favorite teachers. More people need to be educated about Lyme, and controversies over what to call it -- whether it's chronic Lyme disease (CDL), or Post Lyme Disease Syndrome (PLDS), stand in the way of the badly-needed education about Lyme. Stephanie, whom I interviewed last week for the LDRD Success Stories series, mentioned she had just completed her degree as a registered nurse one month before she discovered she had Lyme. In her years in medical school, not one course instructor had even mentioned it.

I hope that as more doctors are educated, more will recognize that Lyme is a multi-stage disease, like syphilis (over which there is no controversy), and the controversy over late-stage or chronic Lyme disease will fade. By whatever name you call it.
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