my story, symptoms, treatment

Beginning treatment — oral doxycycline and then IV ceftriaxon

It took a week for us to decide which doctors to see and make appointments, and another week before I could actually see the doctors (partly because I was going out of town for my only trip since deciding to cut out travel and focus on healing, an important work trip).

I left town on Wednesday 11/7/07 not having yet decided on a treatment option and having only seen one doctor, the one who encouraged me to go on antibiotics for an unknown length of time and gave me a 4 month prescription. My husband and I had decided to wait until we got a second opinion before deciding whether to follow his advice. However, I was becoming more and more concerned about my symptoms, which included the beginning of pain in my knees (we had been amazed to see that I had bags of fluid the size of baseballs behind each knee when visiting the doctor) and increasing clumsiness.

I arranged to fill a month of the prescription (oral doxycyclin, 200mg) at the last minute and picked it up at a pharmacy near my destination. I began taking it immediately. The next day I continued to feel worse (jerky movements, clumsiness, fatigue, and, thanks to the antibiotics, extreme nausea at times). However I woke up the following day without back pain. It wasn’t until the pain went away that I realized just how constantly painful my back had been. Unfortunately the relief only lasted a few hours, but occasional pain free hours have continued to occur ever since.

After returning and seeing the local infectious disease experts (the other two doctors), my husband and I decided to switch to IV antibiotics (ceftriaxone, also called rocephin) which we began on Tuesday, 11/13/07 after my PIC line was installed. The clumsiness, etc made us want the strongest possible treatment. This continued for 6 weeks, ending on 12/24/07.

During this same period, I took sacromyces (shown to help the gut flora survive antibiotics, though who knows how effective it is for treatment this strong) and ate yogurt regularly. I also tried to avoid sugar in my diet to help reduce the chance of a yeast infection, and generally ate lots of whole grains. I also continued to receive regular massages.

Finally, I began a daily diary of my symptoms so that I could give better information to my physicians and better track changes. My hope is that this will provide some objective evidence of improvement (or lack there-of). For example, looking back over how many hours I’m sleeping may be a better measure of fatigue than my subjective estimates, which are strongly effected by how optimistic/pessimistic I’m feeling about the situation.

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.