As a toddler I was prone to strep throat, which meant I needed to take antibiotics. At that stage of life, this meant drinking pink “bubble-gum” flavored liquid, which many of you might also recall if you were ever even slightly sick as a child. I hated the taste so much that I learned to swallow pills at the age of two. Unfortunately, this early-acquired skill would not solve the medication woes I’d be facing for the rest of my life.
Later in life, when I was diagnosed with Lyme disease, I was completely naive, thinking it would be easy to take one medication in pill form for a few months and be totally cured. So a few months later, when I ended up at a Lyme Literate Medical Doctor (LLMD) and received a whole medication protocol, including multiple antibiotics, an antiparasitic, and a host of other supplements and tinctures, I was completely overwhelmed by the sheer volume of pills and liquids I needed to consume. It’s been eight years since then, and by now I’ve experienced nearly every type of medication out there. Along the way, I’ve had to teach myself some useful tricks on how to withstand taking multiple forms of medication, so if you ever find yourself intimidated by a treatment regimen, hopefully this will offer some helpful advice.
At first I was least happy about having to take Mepron, an antiparasitic. I referred to it as “liquid gold,” due to it costing nearly a thousand dollars a bottle and its bright yellow coloring. It had the consistency of yellow finger paint and the taste of, well probably yellow finger paint. Every time I took it I gagged, and some would not make it down, causing me to feel guilty because it was so expensive. It was imperative that I teach myself how to take it without gagging, and avoid wasting such an expensive medicine. So, instead of taking it in multiple, reasonably-sized spoonfuls, I would put the whole dose on a large spoon, swallowing as much as I could at once, followed by a large gulp of water or some other liquid to keep it all down. The trick was to have it in my mouth for as short a period as possible, because the longer I had to taste it the more I gagged. So I would take my oversized spoonful, and, if it didn’t all make it into my mouth, oh well; I wasn’t going to give myself another chance to struggle to keep it down. I was on and off this foul medication for years, and every time it ended up on my protocol I inquired about whether I really, really needed it. Sometimes they would let me take the pill form, but mostly I just had to deal with it.
Unfortunately, Mepron was not the worst medication I have ever had to take. While I did suffer side effects from it, like many of the other antibiotics I was on, nothing was worse for me than Flagyl. This one always made me feel even sicker, usually causing me to spend the weekend in bed because my whole body would feel weird; I would get brain fog, and the thought of doing anything felt pretty much impossible. All I needed to tell those close to me was that it was a “Flagyl weekend” and they knew, in all likelihood, that I wouldn’t be able to leave the house. Its side effects, however, were not the only problem. Since it was in pill form you might think it was an easy medication to take — put it in your mouth, take a swig of liquid, and swallow. But unlike most pills that, at most, have a slightly icky taste, this pill caused a sensation on the tongue that I can only relate to the feeling of a chemical burn. Once, when it took its time going down my throat, the taste alone caused me to toss up all the other meds I had just taken, which then had to be retaken.
For the longest time I tried to take it as quickly as possible, mustering through the awful taste, but that didn’t work. Then I tried filling my mouth up with liquid before popping the pill in, but if I didn’t swallow fast enough, the liquid would begin to retain the taste of the medicine, which was somehow even worse. Finally, I developed a strategy that I now use to take all my pills:
- Have the pills at the ready, in one hand, and your liquid in the other.
- Press your tongue to the roof of your mouth and toss the pill under it.
- Take a sip of liquid while keeping your tongue up. Swallow as quickly as possible. (This doesn’t always work, which is why you must keep your tongue up.)
- For medication that tastes really bad, immediately eat a piece of candy right after, so if your mouth does taste like chemicals, it will at least taste moderately better.
I’ve offered this advice to anyone who complains about not being able to swallow pills, because it works, for the most part, with no gagging necessary. And if they still complain about that one pill they have to take, I like to tell them about the time I was taking 60 pills a day. If that doesn’t work, they usually at least stop complaining to me.
When I was on really strong antibiotics, I needed to take really strong probiotics to help offset the antibiotics killing off all the good bacteria in my gut. It was a prescription powder that needed to be refrigerated and then mixed with something in order to be ingested. I first tried mixing it with water, as it was the first suggestion on the packet, but since it wasn’t fully dissolvable, it created a milky liquid which went into my mouth and came right back out. So I tried cranberry juice, hoping its strong flavor would drown out the flavor of the probiotics, but it just tasted like milk mixed with cranberry juice, which is not a combination I would recommend to anyone. My next attempt was to try applesauce. This also didn’t taste great, but because the powder wasn’t turning into a milk-like substance it wasn’t as unbearable. So, every night, I would retrieve a cup of applesauce, take a big spoon and eat one regular bite, add the powder and mix it up, and then finish the cup quickly, in three giant spoonfuls. Although it wasn’t pleasant, it was still better than having to drink a full glass of milky liquid. I only had to endure three spoonfuls, and then I was done. This was different from the liquids which I would drink a little of, gag, drink a little more of, gag again, see I had barely made a dent, and finally give up.
Due to one of my co-conditions, Postural Orthostatic Tachycardia Syndrome (POTS), I eventually started going to an infusion clinic regularly for saline infusions. This usually helped me feel like I wasn’t going to pass out for a few days at a time, or at the very least to feel less dehydrated. The entire process took a few hours out of the day; I didn’t appreciate how much it made me have to pee for the following 24 hours, or how cold it made me feel, due to having room temperature liquid pumped into my veins. But they had warm blankets for that.
The hardest part, for me, was getting stuck with a needle every time. I’ve never had great veins for drawing blood, and being dehydrated made them even less accessible. I definitely don’t have needle anxiety, so the actual needle going into my hand or arm was never bothersome to me. At first I just looked away, but over time I started watching, fascinated by the way they could poke me and receive a blood return. The process was only occasionally agitating. I didn’t like when they had to stick me multiple times, which began to happen more often years into the treatment, due to scarring that had built up in my veins, but that was never really painful, only uncomfortable. It could be painful if they hit a nerve, which probably only happened twice, and were the only times I actually yelped (something I try to avoid when someone is sticking a needle in me). And of course, if the needle wasn’t quite in the right place and the saline started to bubble under my arm, I would politely tell my nurse that I was in a bit of pain and something was probably wrong. During my many years of being stuck, I was only sent home once without any treatment, because after an hour and six attempted sticks, they still hadn’t been able to locate a good vein.
A few months later, to make the whole process fairly painless and a hell of a lot easier, I got a medical port, which is a small round device that is surgically installed into your chest with a tube that goes into a chest vein and ends at your heart. This port can then be accessed by professionals with a needle stick, providing an easy route to your veins. Here I’d like to say that if your doctor suggests that you might benefit from a port, don’t be turned off by the surgical aspect like I was. If you’re going to need long-term IV treatment, a medical port will make everything so much easier.
So far, I’ve only described the easy IV treatments that I’ve received. A few years into my Lyme disease diagnosis, my brain really started going to shit and I was told I would need very expensive, very intense IV antibiotics. It was described to me as being “like chemo” and I’m not going to dispute that. Initially, it was only supposed to last four months, but ended up taking eight. Because of the frequency of infusions I would need , I had a PowerLine put into my chest so the treatment could be done from home. A PowerLine is basically the same as a medical port, but instead of being completely under your skin it has a line that sticks out of your chest with an attachment to hook up IV lines, no needles (or nurses) required.
In the beginning, I was really out of it, with my neurological issues getting worse before they got better, so I didn’t trust myself to get all the steps right and had my family hook me up, which, for the most part, was done without fail. Once, someone forgot to “prime the line” (to allow liquid to fill up the line from the IV bag) and a good amount of air got pushed into my chest. It made it hard to breath for about an hour which had me worried, but by the time I was actually seen by an emergency room doctor five hours later I guess I was fine.
This dilemma took me to the Internet, where I learned how to force myself to throw up using a toothbrush, which I reserved only for situations that became unbearable.
The worst part of the IV antibiotics were the side effects. I was lost in a brain fog, constantly exhausted, and generally felt like crap, but the most difficult side effect was becoming painfully nauseous. I literally felt like I was dying, and yet somehow was often unable to throw up, which could sometimes alleviate the pain. This dilemma took me to the Internet, where I learned how to force myself to throw up using a toothbrush, which I reserved only for situations that became unbearable. I was only able to do this if I was extremely nauseated, and on the verge of being able to vomit on my own which usually occurred around three in the morning, when I felt truly desperate. In retrospect, no matter how awful those eight months of my life were, I’m still incredibly grateful for having done it… otherwise you probably wouldn’t be reading these words right now because I probably wouldn’t be able to think clearly enough to have written a complete sentence or to know why I was even writing a sentence. In reality, I didn’t have much of a choice concerning these meds, which is why most people have to endure such grueling medical treatments. If this is you, I don’t really have any good advice to offer, other than to wish you luck and encourage you to hang in there and try to focus on the outcome.