Bloody Lymey

A Blog About Living with Lyme Disease

So Long, Ceftin. Sooo Long.

on June 7, 2011

So long, ceftin – goodbye.
So long, ceftin – so long as in duration.

At first it was Doxycycline. 3 weeks? 4 weeks? I didn’t mind it. They say to stay out of the sun and in the shade I developed a radiant tan. It even had a peachy hue to it. I was glowing. I never felt worse, never looked better. People were complimenting me left and right. Some wise ass even asked if I was pregnant, adding “you’re GLOWING.”

Doxy got rid of the heart murmurs and the breathing maladies that woke me up at night gasping for air, trying to play “catch up” with my own lungs. I thirsted for oxygen, sitting bolt upright in bed in the dark. I KNEW I had stopped breathing. I knew it. How terrifying is that? The darkness, the stillness, the quiet, the not breathing was like death. Just a fraction of a microsecond of death. Doxycycline even alleviated (but didn’t cure) the meningitis headaches that felt like a long cold steel screw twisting relentlessly into my skull and making my neck hurt in a new and unusual and indescribable way.

Many of the lyme symptoms are sensations I can’t even put into words. They simply aren’t akin to anything else.

Then she put me on Ceftin. I believe it was three months. I saw the specialist and she urged me to continue. This started in the summer of 2008. I went off of it in November of 2010.

It wasn’t all at once, ‘mind you. Three months here. Six months there. Increased dosage here, decreased dosage there.

Lyme disease made me constipated. At the worst, it hurt to walk and my pants were all tight. I felt like I was pregnant and the baby was starting to descend, resting squarely on my butt. I devoured laxatives and stool softeners, producing little results.

The antibiotics literature that came stapled to the pharmacy bag promised me diarhea. Oh, that sounded exquisite. At best, I was “regular” when first starting an antibiotic regimen. Then my body would adjust and the constipation would come back.

Dr. H. recommended “Probiotics.” Another name for this is “Acidophilus.” Basically it contains the active cultures found in common containers of yogurt. I found myself mouthing palmfuls of them. The chewable strawberry flavored ones made me feel better emotionally. They took a few extra moments to consume. It felt more like a proactive activity than simply swallowing some capsules. Chalky strawberry goodness. Yummy.

Some of the higher doses of Ceftin made me “nervous.” I was jittery mostly at night, in the same way a child instantly becomes when the sun goes down. Shadows at the end of the hall seemed more daunting. A creak in a floorboard could alarm me into hours of insomnia. A nightlight became necessary.

Just when I thought I was really going insane, the nervousness ebbed. Mercifully.

I lost track of the collective months when I hit about 18. A year and a half.

It takes me some months to get rid of the bloating, to purge myself of the water, after going off Ceftin. I have googled this and it doesn’t appear to be a symptom. For me, it’s how my body reacts to it.

The last time I was on it, I was tormented with yeast infections. I would kid around with some of my closest friends about taking stock in Monistat and feign somberness when I talked about insider info and trading and wondering if it’s simply unethical or actually illegal for me to suggest they do that.

Taking myself off of the Ceftin, I explained to Dr. H. that I simply couldn’t afford $18 every ten days. She conceded it was probably not working well for me.

At this point my primary care doctor doesn’t want me on any more antibiotics. During my time on them, I had lots of labs to ensure my liver and kidney function was up to snuff. However …. however …. it’s not good for me.

Some doctors just WON’T treat patients with lyme disease with antibiotics for more than a certain period – some (like Dr. H) keep using antibiotics until the symptoms are resolved. Some are probably somewhere in the middle of the spectrum. No one seems to have a concensus as to what’s proper treatment.

Dr. H asked if I had any left and I said I did. She told me if a tick bites me, to take two. Dr. H added that their “shelf life” is like a year (supposedly) but I could keep them on hand for 3 years? Or did she say 5? At any rate, I have time.


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