activism, diagnosis, thoughts

Slipping between the cracks

In the last week, I have met or heard about three different cases of younger individuals who either died or were very ill with a combination of diseases that cause neurological and physical symptoms. I invariably have the same reaction in these cases – I think of Lyme disease and wonder whether they were properly evaluated for it. I often think of the saying ‘when you have a hammer everything looks like a nail’ and wonder if I should say or do anything. But I also know that I was headed down the path toward an MS or ALS or similar diagnosis myself. I only discovered that I had Lyme disease because I was lucky. A massage therapist, who I called to ask for help with my pain, suggested the diagnosis.

One of the three told me she had a false positive test for Lyme. This more than anything set off alarm bells in my head. How could I fail to wonder whether the ‘false positive’ was a true positive, given the lack of specificity in tests. Many doctors never tell patients basic facts about diagnosing Lyme disease.

In the end, I can’t be sure that any of these individuals have Lyme disease, and two of the three have passed away, so even bringing it up would only be a cruelty. But it breaks my heart to think of folks who are that ill not even being properly evaluated for Lyme disease, because I know that there is a way back from Lyme disease.

The passage of PA State law Act 83 in 2014 (the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act) mandates education of lyme patients (I don’t think I’ve written about that success yet! I will have to post separately about that). But how can we educate those who fall through the cracks before diagnosis?

For now, at a minimum, I will speak up, even if I fear seeming like a hammer without a nail. But maybe it’s time to do more — find groups of outdoors focused individuals and tell them Lyme disease exists, and that it is controversial, for example. Feel free to share other ideas for how best to reach out to maybe-lymies :).

my story

Personal limits

Not a lot phases me and I generally don’t care how people judge me, my clothing, my cane, and many other things … But a few things, I’ve discovered I am very sensitive about. Some I have been lucky enough to avoid (such as using a wheelchair — I decided not to get one, but exploring that issue led me to my invaluable flipstick cane). Others are harder to escape, such as cognitive impairments (and perhaps, though it’s hard to know given how fresh it is, the idea of having a relapse).

Last Sunday, I gave a talk on my lyme work in a (friendly) audience of about 140 people who care about health and wellness informatics. The talk went well, and the questions too, up until a long-winded, two part question. I planned my answer as the speaker spoke. He finished, I responded: “In our experience… [here I realized I had forgotten his question and my answer… so I stalled for time] … we found that… [now I know it’s not coming back easily] … give me a second please.” I pause, flustered and unsure what to do. Continue reading “Personal limits”

treatment

Off antibiotics!

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. Continue reading “Off antibiotics!”

my story, symptoms

Running the numbers (March 2009)

I expect this will become an (approximately) monthly post as long as I am still in treatment. I have entered another month’s worth of numbers into my stats program and analyzed them. This month is of note because I switched meds half way through –Penicillin was begun March 13th. At that time, Zithromax, Mepron, and Ceftin were stopped. I also lost 12 lbs sometime between when I last weighed myself (maybe over christmas?) and now, probably due in part to Ceftin causing me to have about 4 bowel movements a day.

The news continues to be good. The charts below illustrate the change in various symptoms from last month to this (click on them to see close ups)

Continue reading “Running the numbers (March 2009)”

symptoms

Or am I?

Ironic considering my last post, but I’m starting to wonder if I’m really in the safe zone, or even have a handle on exactly what this illness is about. For the last two days I’ve been feeling much worse. My lymph nodes have begun to show signs of swelling again, and most importantly my fatigue and headaches are much worse. Both of the last two days I’ve felt nauseous and in need of a nap by as early as 9:15am. I’ve wanted another nap by afternoon, and had ongoing headaches in the afternoon to boot. I feel as if biking to school with my son exhausted me for the whole day (though I haven’t been keeping up with my bike riding, so I could also be losing stamina from that). None of this matches my picture of what should be happening by now, and I will admit I am disappointed and frustrated that it is happening. I have gotten about 7-8 hours a night of sleep for the last few days, sometimes interrupted, so that be part of the problem, but if it is then the safe zone is a lot narrower than I thought.

symptoms, thoughts

Avoiding regression in chronic illness

Although I can’t say yet whether I have a chronic illness (I certainly hope not), I do know that I’ve been affected by lyme for over a year now, and in that period I’ve had at least 2 relapses (both before treatment). Now I’m attempting to give my body the space to get completely better. Since I am still at least partly symptomatic, I have to at least temporarily work on the assumption that if I push to hard I might get worse (or have a relapse). So how do I determine what is too hard?

Luckily (or unluckily) I have previous experience with chronic conditions that can relapse. Most pertinent was my experience with a repetitive strain injury. At my lowest point I couldn’t tie my own shoes or lift a glass of water (this was less than 6 months in). A month later I was able to type 30 minutes per day. 4 years later I was able to type 2 hours per day. Was this a smooth progression? No — when I tried to do too much, I would get much worse, and my rule of thumb was that it took exponentially longer to recover than to regress. Problem was, there was no line in the sand, no hard and fast rule about how many hours of typing would cause a regression and how many would not. Any give hour of typing could not be blamed for a regression, yet in sum the cause was obvious. So I had to simply tell myself no, even when I was not performing up to my standards, had a deadline I couldn’t meet, or simply missed coding. I had to guess whether the line was moving (as I healed) and how far it had traveled. Sometimes I just pushed the line, both to see how I was doing and because I was tired of being good. Most of the time I did not, and it was easy to tell when I was no where near the line, so I developed a routine that kept me there.

Now, with lyme, today, I know I am no where near the line. I feel, inside, as if I am improving, and some of the more peripheral symptoms are gone. On the other hand, I still have many symptoms including fatigue, headaches, fluid behind my knees and difficulty finding words. And while even regressing was fairly “safe” in the case of RSI, I absolutely do not want to take a chance and push myself backwards with lyme. So I am happily in the comfort zone, and plan to stay there for some time before I even consider doing anything that might push me close to the line. Somehow I will need to determine if it exists without crossing it, but I will figure that out later. For now, there’s a comfort in knowing I’ve managed this sort of situation before, and can recognize when I’m safe.

diagnosis, symptoms

More diagnosis … which stage was I in?

Lyme disease is multi-faceted because the lyme spirochete can attack different systems in the body. Typically, the longer someone is infected, the further it progresses, though there is no guarantee as to the order in which different types of symptoms will occur. In my case, because there was no known tick bite or acute onset of symptoms, we were not sure how long I’d been sick, though we knew it had been at least 11 months by the time the diagnosis came through. This meant that I was either in the early disseminated or late disseminated stage. A key difference in those stages is whether or not there is neural involvement or heart arrhythmia).

Also, we weren’t sure exactly which symptoms I did or did not have because many of them are quite subtle. For example, I am naturally a klutz, and a slow increase in klutziness was not immediately obvious to us. On the other hand, the week I knocked over 2 water glasses a night at dinner multiple nights in a row, we started to wonder if perhaps I was more clumsy than usual. Similarly, my memory has been bad, on and off, since my first child was keeping me up at night, multiple times per night, at 3 months of age (almost 4 years ago). Was it worse? I can’t really remember, as the joke goes.

In the end, all three of the doctors I saw, including doctors from both sides of the lyme wars, agreed that I might have neural involvement (luckily, I had no heart arrhythmia). The symptoms that seemed to concern them included: my right pupil was a little slow to dilate; I had had facial paralysis; we (my husband and I) thought I was more clumsy than usual; my hearing was worse than usual; I had occasional headaches; the reflexes in my ankles were more jittery than normal; a reflex in my elbows was unresponsive; we thought my memory was worse than usual; I had had sharp shooting pains in my arm. Some of these things (such as my right pupil) may have existed before the lyme, others (such as my clumsiness and hearing) are highly subjective, and none of the doctors sat down and explained exactly which symptoms were most important in their diagnosis. So I don’t know exactly why they came to the conclusion they did. However, they all agreed, and the suggested treatment in cases with neural involvement is IV antibiotics (this is something doctors on both sides of the lyme wars tend to agree on). Thus, the day after I saw the third doctor, I headed to the hospital to have a PIC line put in.