When diagnosed right away, many cases of Lyme disease can be treated with a three-week course of oral antibiotics. Some 20% of patients, however, go on to experience continued symptoms—known as Post Treatment Lyme Disease Syndrome—and require more antibiotics. Still others, like myself, suffer with Late Disseminated Lyme Disease, which isn’t diagnosed until months or years after a tick bite. By that point, the Lyme bacteria, called a spirochete, has replicated and invaded many systems of the body, often crossing the blood-brain barrier.
I was bitten by a tick in 1997, but wasn’t diagnosed with Lyme disease and two of its co-infections, babesia and ehrlichia, until 2005. By that time the infections had crossed into my central nervous system, making them more difficult to treat. My LLMD had me start with oral antibiotics. At first, they caused a Herxheimer reaction, which told my doctor that the medication was working. However, after six weeks of treatment, he determined that it wasn’t working fast enough, and recommended a PICC line.
A nurse put the line in at the doctor’s office. It felt like getting a regular IV inserted; I could not feel the line moving from my arm to my heart. I had a chest x-ray to make sure the line was correctly in place, and then the nurse administered the first dose of antibiotics, to make sure I didn’t have a bad reaction. He also taught me how to administer the medication myself. Instead of a typical IV bag, the medication came in a bolus, a hard ball that needed to be refrigerated. The nurse showed me exactly how to wash my hands before touching my port; how to pinch the port with two fingers and clean it with an alcohol wipe; how to first flush the line with saline, and then how to attach the bolus; how to flush the line with saline and heparin (to prevent clots) once I’d finished infusing; and how to properly replace the port’s cap and safely wind it up, tucking it inside a mesh sleeve when I was done.
After a few days, I felt like a nurse myself. Armed with the right knowledge and my nurse’s phone number, I felt safe hooking my port up to a bolus twice a day. With my arm outstretched on the kitchen table, I read the paper in the morning and watched game shows at night to pass the hour that it took for the boluses to deflate. Once a week, the nurse came to my house to clean the line and draw my blood, so my doctor could run lab work to make sure I was reacting well to the medication.
When I wasn’t infusing medication, I generally was able to go about my day as normal (which, at that time of acute illness, didn’t include much beyond resting and taking the occasional trip to the pharmacy). I sometimes forgot the PICC line was even there. That said, I did have to take certain precautions with it. It was very important not to get even a drop of water on the line. Therefore, I wore a special sleeve to cover it when doing dishes or washing my hands; took baths instead of showers; and had someone else wash my hair in the sink. When out in public, I wrapped an ace bandage around the mesh sleeve that held my port in place, for extra protection; I had to be sure not to snag the line on anything. For that reason, I generally didn’t sleep on that side.
Despite these limitations and an unexpected gallbladder attack (which I’ll explain below), I am still glad I used a PICC line for the year that I had it in my arm. Would I have gotten better if I had stayed on oral antibiotics? Probably. Some LLMDs use them exclusively, even pulsing them on and off. But likely my recovery would have taken much longer. I saw great improvement in a year’s time, so the intravenous route was the right one for me.
When weighing whether it’s right for you, consider the following pros and cons:
Only you and your LLMD can determine whether a PICC line is right for you. I hope this list will help you make an informed decision.
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The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.