I have noticed that a lot of people who use search engines that end up on my site are looking for information about PICC lines. This would be a good time for me to tell the tale about my PICC line because I will finally be getting rid of this IV line on Monday after having it in for the past eight months. For those of you who are not aware of what a PICC line is, it is actually a long-term IV line that is typically placed in your upper arm that runs in a deep vein ending right up close to your heart. It can stay in place for approximately up to 18 months, although people have differing opinions about the safety of how long it should stay in without the possibility of infection or blood clot. I will give you the details of my personal experience with my line but please defer to your own physician’s recommendations if you are considering this form of treatment.
I have been treating my Chronic Lyme Disease for two years and eight months now. I used numerous treatments over the first two years of my battle before I would even consider IV therapy. Here’s a brief list of my efforts BEFORE I had a PICC line…Lyme: (oral antibiotics) Doxycycline, Zithromax, Tinidazole and many more that I am probably forgetting right now; Babesia: Mepron, Artemisia and Co-Artem; Parasite: Ivermectin; Neuro-Lyme: month of oral Diflucan; Herbals: Banderol, Samento, Burbur, Pinella; Diet: Gluten free, Dairy free, working on sugar free… Alternative therapies: microcurrent, RIFE treatment, acupuncture with “beepers” instead of needles, IV vitamin C (Myer’s cocktail). Then there was the 80 injections of Bicillin LA which some of you may know is NOT a pleasant shot to tolerate! I actually loved those shots though because they really worked well for me. This list doesn’t even include the hundreds of supplements and regular prescriptions that I took to manage my symptoms and deficiencies caused by this disease. I just wanted you to see that almost every other course of action was taken before I decided to try the IV antibiotic route.
Detoxification has always been my biggest problem which I will save for another blog post as this one is to discuss my experience with the PICC line. Now that you understand ALL of the other modalities that I tried before getting to the IV route you will see that going to a PICC line was my last resort. I never really wanted to do the PICC line. I held off as long as I could because I had seen the damage a PICC line can do throughout my career in medicine. I had seen many people get infections, both localized (at the entry site) and systemic (bacteremia, sepsis, “in their blood”). I had seen people get blood clots both in their extremities (thrombus, “DVT”) and in their lungs (pulmonary emboli, pulmonary embolus, “PE”). Obviously, I had my concerns about putting a PICC line in my own arm.
I also knew that there were positives to getting a PICC line given that many Chronic Lyme patients have stated that IV medications were the only thing that got them better. The decision to treat with IV antibiotics is something that should be taken very seriously. Each person must make that decision for themselves after discussing it with their doctor and in consideration of how long they have had their disease. I would certainly NEVER recommend it as a first line of treatment unless a person is so sick with Lyme that they are paralyzed or their life is at risk without quick administration of high dose medications. However, if the benefit of the medications outweighs the risks, then you must proceed with close supervision by your doctors. I saw my primary care doctor every month and my LLMD every six weeks during the duration of my treatment, along with a home health nurse once a week who came to my home to change my dressing site in a sterile fashion over my PICC line.
At the beginning of my third year of fighting this disease, I made my decision to go the IV route and had my PICC line placed on December 18, 2012 at the hospital. If you want to read about how they put in a line, I detailed the procedure in my post called “PICC’d on again…” earlier in this blog. It is really simple, didn’t even hurt and I was out of there in a few hours. As far as showering and taking care of your line, I wrote some details in my post called, “The forest through the trees…” so you can take a look at that one for those topics. Over the past eight months, I have protected my line by not lifting anything heavy with my left arm, NEVER getting it wet, and following sterile procedures whenever I was hooking up my medications or having my dressing changed. I don’t sleep on that arm and I always cover it if I have to go out to the doctor.
I had a difficult time with the medications. I started with Rocephin twice a day but couldn’t tolerate it and I had to be switched to Vancomycin. (Please be aware that if you are given Rocephin, you need a medication like Actigall to protect your gallbladder from getting gallstones.) I managed to take Vancomycin for three months but it wasn’t easy. By the third month, my weight had fallen to 97 pounds and I had developed POTS (Postural Orthostatic Hypotension Syndrome). I was tachycardic (fast heart rate 130-150), my blood pressure was so low that I couldn’t stand up without getting lightheaded and I was critically low in magnesium. I was desperately ill and I couldn’t continue with the IV medications any longer.
We had to change our course of action. It became obvious that IV medications were not for me. I kept the PICC line in because now I needed it to recover from the antibiotics. I continued to use it for the next four months to give myself IV magnesium and IV fluids to increase my blood pressure. I was started on a heart medication to slow down my heart rate and I tried to go back on herbal antibiotics. I was too weak to tolerate much in the way of killing off Lyme bugs so most of the summer has been spent trying to get stronger. I tried to go back on Bicillin LA injections but even that is proving too much for my body to handle.
I had high hopes last December when I chose to put the PICC line in that it would be the “pot of gold” at the end of my rainbow. Instead, it has cost me thousands of dollars, caused a ridiculous amount of stress trying to coordinate all of the necessary care involved and the medications nearly killed me. I realize that after two years of trying everything else, we had to give it a shot. I am just thankful that things seem to be improving now and the PICC line can finally come out. I am definitely looking forward to my first real shower in the past eight months!
There are a few positive things to say about the experience. I was very blessed that I did not suffer any serious consequences from the line itself, I did not get an infection, I did not get a blood clot and my skin did not break out from the cleaning chemicals or tegaderm that covers the site. Many people are not so lucky in that regard. I can say that I gave it my best effort and I will now cross it off my list of possibilities for treating my disease as I move on to the next potential treatment.
So, for those of you who are considering a PICC line and you found this site in your search for information, I hope this has helped answer some of your questions. Please feel free to ask specific questions in the comment section and I will answer you right away. Just because it didn’t turn out well for me doesn’t mean that it is not the right course of treatment for you. Some Chronic Lyme Disease patients have gotten their lives back thanks to IV antibiotics and I am so very happy for them!! Everyone has their own path to follow while fighting this disease. Mine just happens to be a slower course using Bicillin shots, oral medications and supplements. My advice would be to follow your heart and your own path to wellness.