This week marked the 3 year anniversary of the 105 degree fever that changed my life. At my last update before summer, I was getting back into treatment after a several month break, and while I was scared, I had hope that a new doctor and a new protocol could mean that I would be in a much better place by the time this anniversary rolled around. Instead, my new doctor neglected to return my phone calls (about important issues like appointment scheduling and prescription refills) and seemed to forget who I was entirely between appointments. Add the logistical issue of the office being too far away for me to get to on my own, and it wasn’t shaping up to be a good fit.
The plan from this new doctor was to do bicillin injections next. We were stuck waiting for a bit because, due to demand, they had been out of stock (from EVERYWHERE). Bicillin is an antibiotic administered via intramuscular injection (i.e. in the butt). I did these injections twice per week way back in the fall of 2015, after a year of illness. They are extremely unpleasant. The medicine is very thick, stings as it goes in, and makes uncomfortable knots under the skin. The injection site remains sore for a long time afterward. This treatment also makes symptoms flare in a big way, and in my experience, as soon as soon as the many kinds of pain started to subside from one shot, it would be time for the next.
I was open to going through this hell again because after my short course of twice-weekly injections in 2015, I had my Best Month Ever. I felt WELL for an entire month. I crashed after that month, and have continued to be very ill since then, but my new doctor said that according to the latest treatment recommendations, I needed a larger dose of the injections for a longer course to see lasting results. Under her orders, I would be doing the shots FOUR TIMES PER WEEK, for at least a month. The shots were expected to be available in the middle of the summer.
I thought I could manage the shots better now because this time I would be able to administer them myself, at home. Cutting out the travel would take some of the stress off, and she talked about some numbing spray or somesuch to help with at least the pain of the actual needle. Those changes and the confidence that it was a good option that could bring be great results made it seem possible to undertake.
But then summer started. My son was in a camp for the first part of the summer that was only a few hours per day, and I was STRUGGLING. I was not well, and the thought of adding an intense treatment on top of my daily routine as a mom seemed really overwhelming. I began to realize that the shots would be beginning just as I was about to have vacation time with my family! My wife had a lot of time off from work in August, and we had travel planned that we were really looking forward to. With my spotty history of traveling while ill, I wasn’t too excited about doing the injections on vacay.
I decided to delay the injections until September, after our vacation, when my son would be back in school and our schedule would be more regular. Then August happened.
August was kinda great! I needed to pace myself, and get rest as always, but overall, I was feeling better in a lot of ways. I felt happy, optimistic, and many of my symptoms were mild. I was able to enjoy vacationing with my family, and it felt wonderful.
In this time of optimism and happiness, I started to think “WHY would I want to go through those miserable injections if I feel THIS WELL without treatment???” I started to think the best next step might be more like rehabilitation. I could focus on eating well, getting back to yoga, dedicating time to my small at-home business (which I really enjoy); I could do some building up of myself rather than killing of disease.
My therapist agreed with me. People I love and trust agreed with me. I was telling anyone who would listen that I had improved over the summer, and I was going to FOCUS ON THE POSITIVE. Things were on the upswing!
Then September arrived. I was getting really excited about starting new rehab-focused routine as my son returned to school, when…the Lyme symptoms started to creep back in…and they didn’t stop.
With each passing day of September, I was feeling worse again. I was getting tired faster. The aches and pains were more frequent. The nerve pain and face droop I had told several people I wasn’t having anymore? Back in action.
I looked back at my calendar and notes, and realized I did not “improve over the summer,” as I so happily told anyone and everyone. I just had a good stretch for a few weeks in August. Maybe it was inspired by great weather, vacation vibes, and a brief respite from my worst symptoms. Maybe it could partly be credited to the short course of Babesia treatment I had in May-June. But whatever it was – it was gone.
The fallout from good days to bad ones is always tough to deal with. This time, something about the combination of my 3-year Lyme-versary, my misguided excitement at leaving treatment behind me, and the realization that yet another doctor isn’t going to work out for me has made it sting even more.
Fortunately, I already had an appointment scheduled with the doctor I call my Guardian Angel. He does not treat my Lyme Disease, but I can always count on him for support, cheer-leading, guidance, and honesty. He agreed with me that lifestyle and supportive care are important. He agreed that bicillin injections aren’t to be taken lightly, and I am right to wonder if the benefits would outweigh the risks of them for me at this time – even sharing anecdotally that he has seen many patients report only temporary improvement from them. So at three years in – right back where I began. Still sick. No doctor. No treatment plan. No answers.
Dr. GA offered me another Lyme doctor referral for a second opinion. He agreed with me that someone needed to help me decide what the best next steps for my quality of life are. And he understood that this last doctor wasn’t the person who I felt could do that. He reminded me that this disease SUCKS, and so much is still unknown. That I am justified in being tired, frustrated, and confused, and that his door is always open. (See why I love him?)
So I am trying to take care of myself. I am trying to be patient and keep an open mind. I am already dreading having to give my revised update to everyone I told prematurely that I was doing better.
Another year. Another doctor. Another discovery of a whole new combination of emotions I never knew existed before chronic illness.
But August? August was pretty great.