my story, treatment

Fear of falling

Things have been going incredibly well since I stopped my medication in October. However, I’ve always thought of myself as “in remission” and tried to act accordingly (protecting at least some of my healthiest habits). Despite that, the call of a job I love, the needs of my children, and time have slowly eroded these (I am not currently doing yoga, using the sauna daily, sleeping more than an average of 7-8 hours a night). Some symptoms never left (such as ringing in my ears) which I attribute to side effects of the medication.

Things seemed great despite this, but about two months ago I started to notice some changes. Occasional dizziness. One day where I needed to sleep sleep sleep (4 extra daytime hours). Another day where I napped for 3. A day where walking up a flight of stairs left me out of breath for what seemed like 10 minutes. A week where I napped for 20 minutes almost every day. A couple of instances of more extreme dizziness. And then this week hit.

Continue reading “Fear of falling”

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)”

my story, symptoms

Another cold, loss of the use of my left arm

We left for Europe, and I rested as much as possible on that trip. I didn’t attend the conference, focusing only on paper writing, and generally tried to take it easy. Despite this, I began the week with another cold (approximately the 10th cold or flu I’d had since the beginning of April, meaning I’d had almost 2 per month during that period). When I returned, I saw my MD/homeopath again (on 9/25) and we discussed my entire history (extending long before the current disease had started). This led her to believe she’d found the right remedy, and both she and I ended the visit on a hopeful note, the first I’d felt in a long time.

Sadly, I reacted to the medication by getting worse. In particular, I began to feel shooting pains in my left shoulder on 9/28 and by 9/30 I could not use my arm for anything due to the pain, even turning the steering wheel of a car. My back pain reached its peak for the whole illness on 9/27 and I developed night sweats (usually a sign my body is successfully fighting something, so I was hopeful at first. However, my lymph nodes popped out more and I also developed an itchy rash between my legs.

I called my MD/homeopath, and she suggested a remedy, and once again within 24 hours my suddenly debilitating arm pain was cleared up. However, the remainder of my symptoms continued throughout the month of October: my back pain went up and down, I developed another cold, my lymph nodes remained swollen, and even occasionally ached painfully.

my story, symptoms

Can’t turn head, can’t manage situation anymore

I may have trusted my doctors, but the situation was starting to make me anxious, and when I lost the ability to turn my head side to side due to neck stiffness on 9/6, only 4 days after my jaw problems cleared up, I began wondering what I was going to do to get through this semester. The neck stiffness and pain developed until the point where I could not lift my children, and I still had not submitted that conference paper. We were leaving in about two weeks for a trip to Europe which I would happily have canceled had it not involved our children’s first ever visit with the Swiss side of my family. Worse yet, my husband would be going to Australia for work reasons two weeks the day after we returned from Europe. How would I cope if I could not lift the children, needed extra sleep, and had more work to do than could reasonably be done in my reduced work hours? By now I figured I was losing 10-15 hours of work per week to extra sleep, and I clearly saw just how overloaded this semester would be with two courses.

Then the bomb dropped — we discovered that my husband’s parents (who normally help care for the kids when we’re at work) would not be returning from their own vacation until 24+ hours after he left. Who would help me during the day everyone was gone, a day in which I had to lecture in one of my classes and might not be able to turn my head or lift my children? I had what can best be described as a panic attack. My closest friend had moved 40 minutes outside of the city and everyone else I could think of with young kids also worked. I called my brother to see if he could come visit and help, and before I could even talk burst into tears. So much for presenting this as a casual, no pressure possibility. Luckily I have the most amazing family ever, and he agreed immediately to fly out even though he would be leaving for Antarctica for two months just a week later.

I called my MD/homeopath and took her suggested medication for the neck (which started to improve within 24 hours and was cleared up by 9/10 or 9/11). I also began telling my colleagues at work how sick I was and adjusted both my expectations and theirs for the semester. After my trip, I would stop doing all research and just do the work required to get through my teaching while my husband was gone. I would see how that went and then seriously consider whether (a) to take a leave of absence from work for the semester or (b) take a week off and just recuperate.

Hard to imagine, but despite all of this, I still had not called my doctors and insisted that they figure out what was wrong with me. In fact, I hadn’t even taken the time yet myself to investigate, despite the advice of a sage and caring colleague who pointed out that the best way to figure out a situation like this is to diagnose yourself and then see the appropriate specialist to get a confirmation.

my story, symptoms

Can’t move jaw, hearing problems

In late August in preparation for classes and a big paper deadline, I slept an average of about 5 and a half hours a night, with interruptions, for a 5 day period. This precipitated the worst downslide I had had yet.

First, starting on 8/27, my jaw pained worsened until I was completely unable to open or close my jaw and my lower jaw was jutting forward so far that my overbite had become an underbite. As it happened, I had scheduled an appointment with both my MD/homeopath (on 8/28) and PCP (on 8/29).¬† I believed that by now they would surely want to see me again (in the case of the PCP) and might think it was time to take more directed action to address what was wrong (i.e. run tests). The changes in my body were beginning to scare me. Still, I trusted my doctors. My MD/homeopath listened to my symptoms, and then asked me to open my mouth so she could look at my throat (I also had a cold again). She reacted with surprise when I couldn’t.

Second, my hearing had gotten truly bad, something both my husband and I noticed a few days before the doctors visits. Both she and my PCP sort of laughed it off when I reported this, and in fact my PCP said something like “aren’t you a little young to lose your hearing” and did not mention it again.

This should have been a reminder for me — for the second time since I became ill, one of my doctors was surprised to see how strongly my illness was affecting me. Description alone was not getting the message across. The first time (see my Feb 1, 2007 post), the extent of my fatigue was hidden by my daytime energy. The second time, the extent of my frozen jaw was not understood until, in front of the doctor, I could not open my mouth. Both times, even after they saw something closer to the truth, I left the office reassured that things would continued to work with my doctor to address my condition through naturopathic means. The hypothesis was that a combination of mold, lack of sleep and other stressors was acting on my body. I saw my PCP a few days later, and he assured me that my symptoms were most likely caused by a virus and would probably clear¬† up on their own and suggested I only come back if in a few months I was not better, or if I started to feel significantly worse. Even worse, serious symptoms such as hearing loss seemed to be overlooked if they did not fit the picture of the preferred diagnosis. In all fairness, none of my more serious symptoms were truly debilitating (I was still biking to work most days!) or if they were they cleared up quickly (the jaw was improving 24 hours later, seemingly responding well to the medication I was given, and completely better by 9/2).

Even so, if I could go back in time, it is at this point that I would whisper in my own ear: Your doctors don’t have a true picture of how you feel. They may be overlooking some of your symptoms. They’re investigating the possibility of a serious disease. And you yourself should never just wait out a combination of changes this diverse — hearing loss, frozen jaw, pain, fatigue, immune problems — this is a picture that should be taken seriously. Sadly, I was focused on things that seemed far more important at the time — meeting a paper deadline for a project I cared deeply about, and preparing for a difficult semester in which I would be teaching two classes, one of which was the most time consuming in our department.

my story, symptoms

Fatigue lifts and returns … Could it be mold?

I was relieved when the heavy fatigue I had had over christmas/new years was gone by sometime in February/March. I don’t remember much else about last spring, in fact one of the things affected by Lyme in my case is my ability to remember things. However, I do recall having serial colds during all of it. Like clockwork, every two weeks, a new cold would start. One week later it would start to clear up and then a week after that another cold would start. Also, I know that by early April I had developed regular neck pain and stiffness.

In March, we discovered a serious case of mold due to a hidden leak in our bathroom (something my MD/homeopath had actually asked about when my fatigue began), and that led us down the wrong path and probably delayed the final diagnosis of my illness. I just assumed, during this period, that my immune system wasn’t quite up to snuff, because of a combination of mold, late nights, interrupted sleep (due to young kids) and constant attacks of colds, etc. because Kavi had started school. I worked with my MD/homeopath to try to boost my immune system and worked on my lifestyle to include more rest. However, I also noted that my lymph nodes were swollen every evening, and this concerned me.

In early April when we started removing the mold (3/31/07), I even had a relapse (on 4/4/07). This relapse also coincided with a paper deadline. I didn’t make the connection to the late nights until December 2007, but I did make an appointment to see my MD/homeopath. She continued to work with me on immune boosters.