I can’t believe it’s been over a month since I last wrote in … I certainly haven’t forgotten about this blog or having Lyme disease, but as an academic the beginning of the semester always rolls over me in waves leaving little time to step back and reflect. Fall is especially bad because there are many conferences to travel to (I just returned from a trip) and I always submit to an important conference in my field around mid September (just before my trip this year).
It’s hard to believe how far I’ve come in a year, but as I roll through my second year since diagnosis I often find myself reflecting on where I’ve been. Two years ago I was desperately seeking a diagnosis, unsure what was happening to me, and floundering at work as I attempted to sprint through what felt like molasses. A year ago I had finally come to terms with the prospect of long term antibiotics, only to descend into one of my worst periods ever. I will never forget my attempts to submit to that same conference deadline, which consisted of hours and hours of painful attempts to look sideways at my screen as I edited the most mindless parts of my papers interspersed with occasional moments of clarity in which I would sprint away from anything that could stop me from writing with an over the shoulder request to my husband to take over if kids were involved, and dive in to do as much as possible before the pain and cognitive dysfunction descended again. In contrast, leading up to this September’s deadline, I had only brief mild headaches and not even every day, with no other major cognitive impairments.
While I am still symptomatic in mild ways, since June my bad periods have mostly been above bar, and my good days sufficiently good for me to function effectively at work and at home. The total number of symptoms per day is down to an average of around 5, half of what it was a year ago. Although there was a spike in symptoms in September, the severity still didn’t go up too much, and it was relatively brief. Symptom severity in general is less. Some of my improvements include:
- Almost gone or gone: Light sensitivity; Back pain; Chills and hot flashes and the associated “flares”; shortness of breath; cognitive dysfunction; sound sensitivity; disturbed sleep; dizziness;
- Mostly gone: Fatigue; Neck pain; Napping;
- Still frequent but not a huge problem or less severe: Ringing in ears; headaches; Swollen lymph nodes;
On this basis, I approached my LLMD about halting antibiotics and he was supportive. I stopped my medication a week ago Tuesday. There are three possible outcomes — immediate relapse; a bumpy period as my body adjusts to fighting it’s own bacteria again and I work through symptoms that are actually side effects of medication/conditions caused by medication (e.g., it’s possible I have a yeast infection from all those antibiotics); or no problems at all as long as I keep my immune system strong and healthy. I have decided to stop logging daily data at least for a month so I don’t get caught up in my head and worries about relapse.
It is my goal to do everything in my power to support the second or third outcome. In the interest of doing that, I decided for the first time in my life to try a detox program. As part of this, I have gotten two lymphatic drainage massages (thanks to a serendipitous opportunity) and now have an IR sauna. I am also using dietary modifications. I don’t want to shock my system, so I am using a 25 day detox program that will help my system to cleanse itself of any build up caused by the antibiotics. A primary component of this program is diet, for example, the diet in the first week is primarily raw foods. I am doing my best to carefully follow this and also cutting out wheat, which my homeopath/md found may be an allergen for me currently. Around the time I finish this program, my plan is to go on an antifungal for a month just to clear out any yeast-like causes of my remaining symptoms. Past then, I will simply see where I am and then make decisions.
In addition to the changes just described, I am still working toward a way to best manage my current symptoms. I can’t do much about my headaches and the ringing in my ears besides ensure that I get enough sleep. This is surprisingly hard to accomplish — because I feel so much better, I want to do much more. But my life is overfull, and doing more basically means sleeping less. It’s so much harder to be strict with myself now than it was when there seemed to be no choice. So I am constantly struggling to remind myself to keep the right priorities. Regarding fatigue, my reaction to pushing myself physically continues to progress, and instead of triggering flares right now it simply triggers decreased energy for 1-2 days. So I’m struggling to exercise enough because my standard exercise has been, even through much of this illness, biking to work, and that’s now a bit too much for me. Instead I need to actually make time for an exercise program that I can build gradually and in a safe environment where I can stop whenever I need to. That hasn’t made it onto my priority list yet, but clearly not exercising (since I can no longer bike to work as often) is a recipe for a downward spiral. Not only that, but yoga has pretty much stopped due to the fact that it conflicts with my kids going to school and they’ve needed a lot of morning attention this semester. Plus getting work done and taking care of the house and kids as an equal to my husband (finally) just seems so much more exciting now that I can!
As always, it’s a balancing act and so much easier to know what I should do than actually do it when it comes to picking between a family I love, a job I love and my own piddling needs. But underlying all this is the knowledge that a relapse is possible. Sure, the evidence isn’t 100 percent clear on whether it’s expected after the amount of drugs I’ve ingested, but assuming I don’t get obsessed with the possibility, it seems wise to keep in mind that if lyme still exists in me, it’s my immune system that needs to keep it from affecting me, and if lyme can cause an auto-immune condition, again it’s my immune system that is implicated. Thus, it makes a lot of sense (and this is smart in any case) to protect myself from things that could trigger an immune collapse such as excessive mold, stress, or other immune depressors.
In the end, I hope I will take whatever comes my way with equanimity, and I am grateful for this period of relief at a time in my life when there’s so much I want to do! From the beginning, I’ve had to internalize two contradictory views to maintain my optimism and my sanity — one accepting disease and the other looking forward to the day when all of this is no more than a story I tell my kids. I am happy to say that I’ve finally been able to stop feeling like my mind is split in half — it’s such a relief to feel simple, unqualified optimism.