Managing Neuroborreliosis: The Power of PICC Line and IV Antibiotics

Living with Lyme disease, especially when it transforms into Neuroborreliosis, can feel overwhelming. This struggle is not just about physical symptoms; it deeply affects daily life and mental well-being. From fatigue to severe cognitive challenges, each day can feel daunting. However, one element has become crucial in my fight against this illness: daily treatments via a PICC line and the administration of IV antibiotics.

What is Lyme Neuroborreliosis?

Lyme Neuroborreliosis is a serious complication of Lyme disease that impacts the nervous system. Caused by the Borrelia burgdorferi bacterium, transmitted through tick bites, it can lead to a variety of neurological issues. If Lyme goes undiagnosed and untreated it can cross the blood brain barrier like in my case. Symptoms range from debilitating headaches to severe cognitive impairments and even serious conditions like meningitis or encephalitis. In my personal experience, these symptoms significantly hinder my routine and quality of life.

Navigating Lyme Neuroborreliosis can be complex. A well-rounded treatment plan is essential, one that tackles physical and neurological symptoms while targeting the bacteria in the body.

Enter IV Antibiotics: My Lifeline

After my diagnosis with Lyme Neuroborreliosis, my doctor strongly recommended IV antibiotics. The reason was clear: oral antibiotics often struggle to penetrate the blood-brain barrier effectively. Given this challenge, administering antibiotics directly into my bloodstream became vital.

The process began with the insertion of a Peripherally Inserted Central Catheter (PICC) line. This small tube, conveniently placed through a vein in my arm, reaches a larger vein near my heart. Although the procedure was uncomfortable, the benefits of IV antibiotics quickly outweighed this initial pain. PICC lines do come with several risk factors and I experienced one of them. Unfortunately, I experienced complications due to a blood clot which I am still dealing with. After a week of removing that PICC and having a regular peripheral catheter in my hand they placed another PICC line in my other arm. This time around was much better and I had no issues. I have been on IV antibiotics for six and a half months and it has become part of me and my daily routine.

Understanding Daily Treatments

The daily routine for administering IV antibiotics through my PICC line has brought structure and some challenges to my life. I cannot miss a dose of treatment so even though I am a wife and mom of two very active kids, it just means my treatments travel with me to their activities. My husband is good about making sure I have all my supplies with me before we leave the house. I have had to do treatments in my car between baseball games and basketball games on the weekends. The entire process takes about an hour and involves several steps:

Preparation: Each morning, I gather my supplies, including the antibiotics, sterile saline, syringes, heparin and cleaning materials. This preparation helps me mentally gear up for the treatment. The treatment has to be done every 24 hours so it's imperative that I maintain a routine and schedule. My daily activities do revolve around when I need to administer my treatment which for me is everyday at noon.
Cleaning: I prioritize hygiene, meticulously disinfecting the area around the PICC line to avoid infections. This step reassures me that I am taking care to maintain my health. Infected PICC lines are one of the major complications and risk factors of this type of treatment. Luckily, I have not had any issues with that.
Administration: Flushing the line with saline before and after administering the antibiotics as well as flushing with Heparin after has become a small victory for me each day. It represents my active fight against the bacteria and keeping the lines unclogged and free of clots is a big deal.
Routine: Once the PICC line was placed, my life and daily routine changed. I had to get used to having healthcare professionals in my house every week and sometimes multiple times a week. My home health nurse comes every Monday to check my vitals, change my dressing on the PICC line, clean the area when dressing is off as well as take safety labs. The weekly safety labs check my organ functions to make sure my body is handling the harsh treatment.

Though it can feel exhausting and sometimes daunting, this daily treatment reassures me that I am battling Neuroborreliosis effectively.

The Emotional Rollercoaster

Living with Lyme disease isn’t just a physical struggle; it's also an emotional one. My feelings can swing from moments of hope and determination to overwhelming anxiety and frustration but I do my best to stay positive. A positive mindset is key to battling this debilitating disease, however, that doesn't mean I don't have my hard days. Having a PICC line in has also been hard on our kids...it is a daily reminder of what I am going through and that mom is sick. We openly talk with both of them about my line and the progress I am making so it seems a little less daunting for them. We are also blessed to have an amazing support system. Support from family and friends has been vital!

The Side Effects You Didn’t See Coming

Despite the benefits of IV antibiotics, the side effects have become a familiar part of my routine. Common issues include digestive problems and extreme fatigue. The first 6-8 weeks were tough because I was also experiencing Herx reactions (mentioned in previous post). This is where Lyme symptoms get worse before they get better.

To manage these side effects, I take a proactive approach. Adjusting my diet, taking a strong probiotic, incorporating light exercise, and exploring complementary therapies have proven essential in maintaining balance. It requires patience and determination, but progress is possible.

Hopes for the Future

Each day presents new challenges, yet I remain hopeful for recovery. Tracking my progress, even if it feels slow, helps me stay optimistic. I frequently remind myself that everyone's journey is unique and comparisons can be unproductive.

Moreover, advancements in medical research continue to emerge. With growing knowledge about Lyme disease, innovative treatment options may soon provide relief where other therapies have failed.

Reflecting on My Journey

Living with Lyme Neuroborreliosis has been a challenging yet enlightening experience. The daily administration of IV antibiotics through a PICC line has become one of my secret weapons in this ongoing battle. While each day may bring new hurdles, the progress I see serves as a constant motivation to keep fighting.