by Jennifer Crystal
In a recent blog post “Don’t Forget It’s Tick Season, Too”, I discussed the importance of being vigilant about checking for ticks while we are outside practicing social distancing this spring. We are in prime tick season, and we need to keep up our guard through the warmer months and into the fall.
Most people who have experienced tick-borne illness are fastidious about protection and prevention and are mindful of rashes and flu-like symptoms. But what some don’t realize is that vigilance needs to extend beyond checking for ticks and monitoring symptoms. Once diagnosed with tick-borne illness, there are other areas that require heightened vigilance. In this post, I’ll highlight some of those areas, and provide lessons learned from my own experience.
Taking Medication
Sick and exhausted, Lyme patients often spend the better part of the day in bed. Therefore, they might sleep through times when they need to take medication, or they may forget to do so because of cognitive symptoms, also known as “Lyme brain”. In order for antibiotics and other medications to work effectively, it’s critical to follow dosing guidelines. Ask your doctor what time of day you should take each medication, and if there are any other guidelines for taking them. For example, certain medications shouldn’t be taken with vitamins; some of my morning medications are like this, so I take my multi-vitamin at lunch.
Medications that are taken several times a day often need to be spaced out at certain intervals, say, breakfast and dinner. Some, though, shouldn’t be taken with food. Others must be taken with food, and still, others need to be taken with specific types of food (for example, the babesia medication Mepron is best absorbed when taken with fatty foods like peanut butter or mayonnaise).
Managing a medication schedule can feel like a full-time job. I recommend writing out a schedule with your doctor, and bringing a caregiver with you to the appointment, so they can also understand the schedule. You might then keep the schedule posted by your pillbox (big weekly boxes with separate compartments for morning, lunch, dinner, and bedtime are especially useful; the day and time labels also ensure you don’t take a dose more than once). You might also consider setting alarms on your phone to remind you when to take your medication.
Medication Side Effects
Prescriptions often come with lengthy pamphlets outlining lists of possible side effects. While you don’t want to be scared off by these lists, which sometimes include a rare reaction that only happened to one patient, it’s important to learn what the most common side effects of your medications are. Ask your doctor or pharmacist what you should be on the lookout for, and how each of your medications might react with another. When any provider prescribes a new medication, make sure he or she is aware of everything you’re currently taking, including supplements and homeopathic treatments, so they can check potential drug interactions.
It’s also important to differentiate between side effects, Lyme symptoms, and allergic reactions. If you experience headaches after starting a medication, you might wonder, is that a typical side effect, or a flare-up of a Lyme symptom? If you experience flu-like symptoms, is that a Herxheimer reaction or an allergic reaction? I once started a new medication and immediately developed a low-grade fever and increased malaise. I figured it was just my Lyme symptoms flaring and stayed in bed for a few days. When I saw my primary care physician, though, she determined that I was having an allergic reaction typical for this specific medication.
I recommend recording all of your symptoms, especially when you start a new medication, and checking with your doctor immediately if you notice anything unusual. You may think it’s just a Lyme flare, but then again it might not be.
Prescription Errors
We want to be able to trust our pharmacists, and usually, we can. However, they are humans who can make mistakes, too, especially when they are overworked and understaffed. A recent article in the New York Times entitled “How Chaos at Chain Pharmacies Is Putting Patients at Risk” details how “the push to do more with less has made medication errors more likely” at local pharmacies. The article gives examples of patients who were given the wrong medication, some with fatal results.
I know first-hand how scary these kinds of errors can be. One day during the height of my convalescence from Lyme, babesia, and ehrlichia, I was filling my weekly pillbox and noticed an oval-shaped pill mixed among one of my round medications. The two types of pills were the same color, but given that one was a different shape, I took it back to the pharmacy. The pharmacist told me that the oval pill was a blood pressure medication that started with the letter “L”. It had somehow gotten mixed up in my medication that also started with “L”. The pharmacist said he didn’t know how the mix-up had happened, but that I was lucky I noticed because taking that wrong pill could have had dire consequences.
A Lyme patient with brain fog could easily miss such an error. Caregivers can help Lyme patients fill their pills. Get to know each prescription: its shape and size, its color, its dose. Read the labels on prescription bottles, which often give a physical description of the pills, and make sure the medication matches. If there is a mix-up, caregivers can offer to speak with the pharmacist on the patient’s behalf.
Insurance Claims and Medical Bills
Lyme patients are overwhelmed with paperwork: insurance claims, which often need to be filed by the patient, explanations of benefits, provider bills. I still get excited when I receive mail that isn’t medically related since my mailbox is often full of such correspondence. Sorting through this paperwork can be difficult for anyone, and downright impossible for the neurological Lyme patient. The tendency might be to just pay the bill, whatever it is because you’re too tired to dispute it or too confused to understand it.
Again, this is where caregivers can really help. My stepmother has become my insurance aide, helping me sort through and make sense of all my paperwork. Patients need someone who is willing to read through and learn about medical codes, check explanations of benefits against medical bills, and call insurance companies or providers when there is an error. And there often is. Countless times, my insurance has denied coverage of a procedure or medication they should have covered. These companies count on patients not noticing or appealing these errors. Most Lyme patients can’t afford to lose money, nor do they have the energy to fight for appropriate coverage. Caregivers or friends who want to help but don’t know how, here is your chance!
More Blogs:
Top Ten Myths About Lyme Disease
Lyme Brain: The Science and the Experience
Lobbying for Lyme Disease on Capitol Hill